Sat Apr 28, 2007 9:24 am Post subject: News: Depression may be early sign of Parkinson's disease
Dear Friends, the following may be of interest. Best, Kathrynne
Depression may be early sign of Parkinson's disease BOSTON – Depression may be an early symptom of Parkinson's disease, according to research that will be presented at the American Academy of Neurology's 59th Annual Meeting in Boston, April 28 – May 5, 2007. The study looked at whether people who are taking antidepressant medications are more likely to develop Parkinson's disease than people who are not taking the medications. It found that, in the year before their Parkinson's disease was diagnosed, people who were taking antidepressants were nearly twice as likely to develop Parkinson's disease as those who were not taking antidepressants.
"This should not be interpreted as evidence that antidepressants cause Parkinson's disease," said Miguel Hernan, MD, DrPH, of Harvard School of Public Health in Boston. "The relationship is only apparent in the year before the onset of the disease, which suggests that depression is an early symptom of the disease." For the study, researchers examined a database of more than three million people in the United Kingdom and identified 1,052 people with Parkinson's disease and matched them with 6,634 people without the disease. Then they looked at antidepressant use before the onset of Parkinson's disease.
The increased risk of developing Parkinson's in the year before diagnosis was true for both men and women, across age groups, and for those who used both types of antidepressants, tricyclic antidepressants and SSRIs, or selective serotonin reuptake inhibitors.
Best regards, Kathrynne Holden, MS, RD
Sunday, April 29, 2007
Pilates eases some Symptoms of PD
Research:Pilates Eases Some Symptoms of Parkinson's Disease
Parkinson’s disease is progressive disease that impairs muscles and movement. There are medications that ease the symptoms, but now a new study finds Pilates could also improve stiffness and rigidity caused by the disease.
Pilates is a series of controlled movements in which the muscles are moved inch by inch.
The small movements could make a big difference for people with Parkinson’s disease. "I think you have to stay active if you have Parkinson's,” said Parkinson’s patient Shaughn McGinley. McGinley is among a growing number of Parkinson’s patients who are regularly doing Pilates to improve symptoms of the disease such as tremors, slowness of movement, poor balance and rigidity.
"I knew my body was getting slower and stiffer and didn't have the flexibility that I wanted to have,” said McGinley. In a recent pilot study at the Parkinson Center of the Oregon Health and Science University, researchers said Parkinson’s patients who did twice-weekly classes experienced improvement in rigidity and balance. Some Pilates instructors are now offering classes specifically geared to patients with Parkinson’s disease.
“The breadth of Pilates is quite expansive,” said Pilates instructor Scott Meyers. Scripps Memorial neurologist Dr. Dee Silver said,
“I think any kind of exercise is good which gives your improvement in your balance, improvement in your mobility and reduces the tightness in your muscles and help reduce rigidity and gives you the ability to react better in your environment.” Since McGinley’s diagnosis with Parkinson’s four years ago, she has strived to keep active with Pilates and other physical activities. Experts said Pilates exercises do not strain the body, so it works well for people who don’t exercise at all.
Best regards, Kathrynne Holden, MS, RD
Parkinson’s disease is progressive disease that impairs muscles and movement. There are medications that ease the symptoms, but now a new study finds Pilates could also improve stiffness and rigidity caused by the disease.
Pilates is a series of controlled movements in which the muscles are moved inch by inch.
The small movements could make a big difference for people with Parkinson’s disease. "I think you have to stay active if you have Parkinson's,” said Parkinson’s patient Shaughn McGinley. McGinley is among a growing number of Parkinson’s patients who are regularly doing Pilates to improve symptoms of the disease such as tremors, slowness of movement, poor balance and rigidity.
"I knew my body was getting slower and stiffer and didn't have the flexibility that I wanted to have,” said McGinley. In a recent pilot study at the Parkinson Center of the Oregon Health and Science University, researchers said Parkinson’s patients who did twice-weekly classes experienced improvement in rigidity and balance. Some Pilates instructors are now offering classes specifically geared to patients with Parkinson’s disease.
“The breadth of Pilates is quite expansive,” said Pilates instructor Scott Meyers. Scripps Memorial neurologist Dr. Dee Silver said,
“I think any kind of exercise is good which gives your improvement in your balance, improvement in your mobility and reduces the tightness in your muscles and help reduce rigidity and gives you the ability to react better in your environment.” Since McGinley’s diagnosis with Parkinson’s four years ago, she has strived to keep active with Pilates and other physical activities. Experts said Pilates exercises do not strain the body, so it works well for people who don’t exercise at all.
Best regards, Kathrynne Holden, MS, RD
Friday, April 27, 2007
Tai chi could aid those with Parkinson's?
Fri Apr 20, 2007 9:58 am Post subject: News: Canada - Tai chi could aid those with Parkinson's
Dear Friends, the following, from Canada, may be of interest. Best, Kathrynne ========================================================
Tai chi could aid those with Parkinson's / expositor staff Local News - Wednesday, April 18, 2007 Updated @ 8:32:47 AM
The benefits of tai chi for those with Parkinson's disease are being demonstrated at a local open house on Sunday. Co-sponsored by the Brantford Taoist Tai Chi Society and the local Parkinson's Society, the event will be held at 67 Charing Cross St. from 1 p.m. to 4 p.m.
The two groups hope to help people understand how tai chi - an exercise developed from an ancient Chinese tradition - is useful in reducing the impact of Parkinson's.
The progressive disease is marked by tremours and stiff muscles, sometimes leading to falls.
Those with the disease have trouble with certain movements and it affects most aspects of their daily lives from walking and standing to writing or keeping an upright balance. When those with Parkinson's learn the physical movements of tai chi it improves their balance, flexibility, strength and endurance, according to research.
The stretching involved is beneficial for the body's tissues, allowing more natural movement and reducing the fear of falling.
Best regards, Kathrynne Holden,
Dear Friends, the following, from Canada, may be of interest. Best, Kathrynne ========================================================
Tai chi could aid those with Parkinson's / expositor staff Local News - Wednesday, April 18, 2007 Updated @ 8:32:47 AM
The benefits of tai chi for those with Parkinson's disease are being demonstrated at a local open house on Sunday. Co-sponsored by the Brantford Taoist Tai Chi Society and the local Parkinson's Society, the event will be held at 67 Charing Cross St. from 1 p.m. to 4 p.m.
The two groups hope to help people understand how tai chi - an exercise developed from an ancient Chinese tradition - is useful in reducing the impact of Parkinson's.
The progressive disease is marked by tremours and stiff muscles, sometimes leading to falls.
Those with the disease have trouble with certain movements and it affects most aspects of their daily lives from walking and standing to writing or keeping an upright balance. When those with Parkinson's learn the physical movements of tai chi it improves their balance, flexibility, strength and endurance, according to research.
The stretching involved is beneficial for the body's tissues, allowing more natural movement and reducing the fear of falling.
Best regards, Kathrynne Holden,
Gastrointestinal and Urinary Dysfunction in PD
Gastrointestinal and Urinary Dysfunction in PD
By Dr. Ronald Pfeiffer
The clinical features of Parkinson’s disease (PD) are reminiscent of bamboo. At first glance PD appears to be a very confined condition, characterized by problems with movement such as tremor, muscle stiffness and slowness in movement. Upon further inspection, it turns out that just as the bamboo plant sends out rootstalks that appear and grow in unexpected and unwanted locations, we find that Parkinson’s disease is not limited to impairment of movement and that it too has “rootstalks” in the form of numerous clinical features that have little or nothing to do with movement.
Among these “non-motor” features of PD are disturbances within the autonomic nervous system — that is, the part of the nervous system that controls “automatic” bodily functions such as heart rate, blood pressure, sweating, sexual function and both gastrointestinal and urinary function. This article will focus on these latter two problems, which are often among the most serious and complex issues that people with PD face.
The Mouth: Dental problems and saliva
Within the human body the gastrointestinal system stretches from “stem to stern,” beginning with the mouth and terminating at the anus. People with Parkinson’s can experience problems with gastrointestinal function at both of these ends and virtually everywhere in between.
Let’s start at the top. There is a general perception that people with Parkinson’s are prone to dental problems because of difficulty brushing their teeth, coupled with excess saliva and perhaps a fondness for sweets. However, studies have generally not confirmed this. In fact, in several studies from Japan, individuals with PD had fewer decayed, missing or filled teeth than comparably aged persons who do not have Parkinson’s disease. On the other hand, people with Parkinson’s may confront other oral abnormalities of a difficult nature, such as a burning sensation within the mouth (observed in 24 percent of PD patients in one study). Bruxism, or grinding of the teeth, may also occur and this can lead to dental damage and jaw dysfunction.
Excess saliva in the mouth, which often causes drooling, has been recognized as a feature of PD since James Parkinson first described the syndrome in 1817. Studies have shown that 70 to 78 percent of people with Parkinson’s experience this problem. While not dangerous or life-threatening, it can sometimes be so socially embarrassing that a person becomes reluctant to go out in public.
This condition is not due to excess production. On the contrary, most people with Parkinson’s actually produce less saliva than normal. The problem is that PD reduces the frequency of automatic swallowing, and this in turn allows saliva to accumulate within the mouth and then escape when the mouth is opened. Drooling can be controlled temporarily by chewing gum or sucking on hard candy, which triggers the action of swallowing. This can help in social situations, but is not feasible for more constant saliva control.
Another recourse can be to take medications to reduce saliva formation, but these can make saliva thicker and stringier. These drugs (one is trihexyphenidyl) may also aggravate bowel and bladder problems and can even impair memory. Using atropine eye drops (one drop on or under the tongue once or twice daily) may avoid these adverse effects and still be effective. And in severe cases, injections of botulinum toxin into the salivary glands have been found to reduce saliva formation and drooling.
Dysphagia
Difficulty swallowing, or dysphagia, is a very common problem in Parkinson’s. At least 50 percent (some studies even suggest over 80 percent) of people with PD experience difficulty in swallowing, and an even greater percentage show abnormalities on x-ray tests of swallowing.
Difficulty swallowing is usually due to the lack of coordination among the many muscles in the mouth and throat that must work together in perfect precision to produce normal swallowing. When food gets stuck in the mouth, the person may have to try several times to complete a swallow. The muscles in the back of the throat — and in the esophagus — may also lose coordination, and individuals who have difficulty swallowing are at increased risk for food or liquid to get into the windpipe. From there, it can get into the lungs (called aspiration), which can result in pneumonia.
Although treatment of dysphagia can be difficult, speech/swallowing therapists can instruct patients on swallowing techniques and on designing changes in food consistency that reduce the risk of aspiration. Some improvement in coordination of the muscles used in swallowing may be achieved through adjustments in PD medications. Only very rarely is it necessary to place a feeding tube.
Stomach problems
Impaired ability to empty the contents of the stomach, called gastroparesis, is another potential gastrointestinal complication of PD. This may produce a bloated sensation and cause people to feel full even though they have eaten very little. Sometimes nausea may develop.
Failure of the stomach to empty in a timely fashion may also impair or delay the effectiveness of PD medications, especially levodopa, since levodopa is absorbed from the small intestine and cannot get to its destination if it is trapped in the stomach. Treatment of gastroparesis in Parkinson’s has not been extensively studied. Domperidone is an effective medication, but unfortunately it is not available in the US.
Treatment routes that bypass the stomach, such as transdermal drug delivery by skin patch, may become available in the near future. Another potential treatment under investigation involves a form of levodopa designed to be delivered directly into the small intestine via a feeding tube.
Bowel dysfunction
The most widely recognized gastrointestinal problem in Parkinson’s disease is impairment of bowel function. This can be one of two kinds. The better known is decreased frequency of bowel movements, or constipation. The current definition of constipation is fewer than three movements per week. Estimates of the number of people with PD who experience this difficulty range from 20 to 77 percent. Decreased bowel movement frequency is due to sluggish travel of material through the colon, and as many as 80 percent of people with Parkinson’s may experience this slow rate of colon transit.
Treatment of slow-transit constipation in PD involves measures designed to increase colonic motility. The first step is to increase both fluid and fiber intake. Current recommendations suggest that daily fiber intake should be in the range of 20–35 grams, but the average American only consumes around 14 grams. Fiber intake can be increased through dietary measures or fiber supplements.
If increasing fiber and fluid intake is not adequately effective, the next step can be to add a stool softener. If the problem still persists, the doctor may suggest initiation of an agent that draws fluid into the colon, such as lactulose. If that does not help with the problem, daily doses of a colon-cleansing agent such as MiraLAX® may be employed. And if all else fails, it may be necessary to resort to enemas — but only under the supervision of a physician. We need to find new treatments to increase the speed of colon transit, and studies investigating some potential agents are underway.
The other, and less well-recognized, type of impaired bowel function in Parkinson’s disease is difficulty with the act of defecation itself. Typically, this problem manifests itself in undue straining and sometimes incomplete emptying. In research studies, it is shown that this problem is actually more common than decreased bowel movement frequency. Difficulty with the act of defecation is due to failure of the rectal sphincter muscles to relax in a coordinated fashion when the bowel movement is being attempted — perhaps due to spasm, or dystonia, affecting these muscles.
The medications described earlier to hasten colon transit are of no value in addressing this problem, and could conceivably even worsen matters by rushing more fecal material to a rectal “door” that does not want to open. No proven treatment for this problem exists, although keeping stool soft seems logical. There have been some suggestions that apomorphine injections just prior to attempting a bowel movement may be helpful, but formal studies of this approach have not been undertaken. Botulinum toxin injections into the sphincter muscles have also been successfully employed in small numbers of patients.
Bladder and urinary difficulties
Bladder or urinary difficulties are also common in PD. Older research studies indicated the presence of impaired urinary function in slightly over 70 percent of PD patients, although recent studies suggest a more modest frequency of 27 to 39 percent. Despite the frequency of urinary dysfunction, actual urinary incontinence is relatively uncommon. Troublesome incontinence develops in only about 15 percent of individuals.
Unlike bowel dysfunction, which may precede (sometimes by years) the development of motor features in people with PD, urinary dysfunction typically does not become evident until the later stages of the disease. The primary function of the bladder is twofold — to store urine as it is formed and then to empty the urine when it is convenient and socially acceptable to do so. With PD, problems can emerge in both areas.
The most common urinary symptoms experienced by people with Parkinson’s are first, the need to urinate extremely frequently, and second, difficulty in delaying urination once the need is perceived, creating a sense of urinary urgency. These symptoms usually indicate an irritable or overactive bladder that is signaling the brain that it is full and needs to empty when, in fact, it really is not. In addition to urinary frequency and urgency during the daytime, individuals with this problem also may have to get up multiple times during the night to urinate.
Medications that work to block or reduce bladder overactivity can be useful in treating this form of bladder dysfunction. A variety of medications are available for this purpose, including older medicines such as oxybutynin and tolterodine, and newer medications such as solifenacin and darifenacin.
Impairment of bladder emptying is a less frequent but still troublesome feature of urinary dysfunction in Parkinson’s. This difficulty is produced by delay or difficulty in relaxation of the urethral sphincter muscles, which is necessary to allow the bladder to empty. This can result in hesitancy in initiating urination, difficulty in generating a stream and incomplete emptying of the bladder. Dystonia of the urethral sphincter has also been described.
The medications listed above are not helpful for this type of bladder dysfunction and may actually aggravate the difficulty. Medications such as bethanechol may be helpful but intermittent self-catheterization is sometimes necessary. Before initiating these, a doctor must make sure that some unrelated process, such as an enlarged prostate, is not responsible for the problem.
The Bottom line
Both gastrointestinal and urinary problems are frequent features of PD. Awareness of their existence and recognition of their presence are the first necessary steps to adequate management. People with Parkinson’s should not hesitate to bring these problems to the attention of their physicians, especially since effective treatment is often available.
Dr. Ronald F. Pfeiffer is Professor and Vice Chair of the Department of Neurology at the University of Tennessee Health Science Center.
He has extensive experience in clinical trials of experimental medications and has a particular interest in gastrointestinal dysfunction in Parkinson’s disease.
By Dr. Ronald Pfeiffer
The clinical features of Parkinson’s disease (PD) are reminiscent of bamboo. At first glance PD appears to be a very confined condition, characterized by problems with movement such as tremor, muscle stiffness and slowness in movement. Upon further inspection, it turns out that just as the bamboo plant sends out rootstalks that appear and grow in unexpected and unwanted locations, we find that Parkinson’s disease is not limited to impairment of movement and that it too has “rootstalks” in the form of numerous clinical features that have little or nothing to do with movement.
Among these “non-motor” features of PD are disturbances within the autonomic nervous system — that is, the part of the nervous system that controls “automatic” bodily functions such as heart rate, blood pressure, sweating, sexual function and both gastrointestinal and urinary function. This article will focus on these latter two problems, which are often among the most serious and complex issues that people with PD face.
The Mouth: Dental problems and saliva
Within the human body the gastrointestinal system stretches from “stem to stern,” beginning with the mouth and terminating at the anus. People with Parkinson’s can experience problems with gastrointestinal function at both of these ends and virtually everywhere in between.
Let’s start at the top. There is a general perception that people with Parkinson’s are prone to dental problems because of difficulty brushing their teeth, coupled with excess saliva and perhaps a fondness for sweets. However, studies have generally not confirmed this. In fact, in several studies from Japan, individuals with PD had fewer decayed, missing or filled teeth than comparably aged persons who do not have Parkinson’s disease. On the other hand, people with Parkinson’s may confront other oral abnormalities of a difficult nature, such as a burning sensation within the mouth (observed in 24 percent of PD patients in one study). Bruxism, or grinding of the teeth, may also occur and this can lead to dental damage and jaw dysfunction.
Excess saliva in the mouth, which often causes drooling, has been recognized as a feature of PD since James Parkinson first described the syndrome in 1817. Studies have shown that 70 to 78 percent of people with Parkinson’s experience this problem. While not dangerous or life-threatening, it can sometimes be so socially embarrassing that a person becomes reluctant to go out in public.
This condition is not due to excess production. On the contrary, most people with Parkinson’s actually produce less saliva than normal. The problem is that PD reduces the frequency of automatic swallowing, and this in turn allows saliva to accumulate within the mouth and then escape when the mouth is opened. Drooling can be controlled temporarily by chewing gum or sucking on hard candy, which triggers the action of swallowing. This can help in social situations, but is not feasible for more constant saliva control.
Another recourse can be to take medications to reduce saliva formation, but these can make saliva thicker and stringier. These drugs (one is trihexyphenidyl) may also aggravate bowel and bladder problems and can even impair memory. Using atropine eye drops (one drop on or under the tongue once or twice daily) may avoid these adverse effects and still be effective. And in severe cases, injections of botulinum toxin into the salivary glands have been found to reduce saliva formation and drooling.
Dysphagia
Difficulty swallowing, or dysphagia, is a very common problem in Parkinson’s. At least 50 percent (some studies even suggest over 80 percent) of people with PD experience difficulty in swallowing, and an even greater percentage show abnormalities on x-ray tests of swallowing.
Difficulty swallowing is usually due to the lack of coordination among the many muscles in the mouth and throat that must work together in perfect precision to produce normal swallowing. When food gets stuck in the mouth, the person may have to try several times to complete a swallow. The muscles in the back of the throat — and in the esophagus — may also lose coordination, and individuals who have difficulty swallowing are at increased risk for food or liquid to get into the windpipe. From there, it can get into the lungs (called aspiration), which can result in pneumonia.
Although treatment of dysphagia can be difficult, speech/swallowing therapists can instruct patients on swallowing techniques and on designing changes in food consistency that reduce the risk of aspiration. Some improvement in coordination of the muscles used in swallowing may be achieved through adjustments in PD medications. Only very rarely is it necessary to place a feeding tube.
Stomach problems
Impaired ability to empty the contents of the stomach, called gastroparesis, is another potential gastrointestinal complication of PD. This may produce a bloated sensation and cause people to feel full even though they have eaten very little. Sometimes nausea may develop.
Failure of the stomach to empty in a timely fashion may also impair or delay the effectiveness of PD medications, especially levodopa, since levodopa is absorbed from the small intestine and cannot get to its destination if it is trapped in the stomach. Treatment of gastroparesis in Parkinson’s has not been extensively studied. Domperidone is an effective medication, but unfortunately it is not available in the US.
Treatment routes that bypass the stomach, such as transdermal drug delivery by skin patch, may become available in the near future. Another potential treatment under investigation involves a form of levodopa designed to be delivered directly into the small intestine via a feeding tube.
Bowel dysfunction
The most widely recognized gastrointestinal problem in Parkinson’s disease is impairment of bowel function. This can be one of two kinds. The better known is decreased frequency of bowel movements, or constipation. The current definition of constipation is fewer than three movements per week. Estimates of the number of people with PD who experience this difficulty range from 20 to 77 percent. Decreased bowel movement frequency is due to sluggish travel of material through the colon, and as many as 80 percent of people with Parkinson’s may experience this slow rate of colon transit.
Treatment of slow-transit constipation in PD involves measures designed to increase colonic motility. The first step is to increase both fluid and fiber intake. Current recommendations suggest that daily fiber intake should be in the range of 20–35 grams, but the average American only consumes around 14 grams. Fiber intake can be increased through dietary measures or fiber supplements.
If increasing fiber and fluid intake is not adequately effective, the next step can be to add a stool softener. If the problem still persists, the doctor may suggest initiation of an agent that draws fluid into the colon, such as lactulose. If that does not help with the problem, daily doses of a colon-cleansing agent such as MiraLAX® may be employed. And if all else fails, it may be necessary to resort to enemas — but only under the supervision of a physician. We need to find new treatments to increase the speed of colon transit, and studies investigating some potential agents are underway.
The other, and less well-recognized, type of impaired bowel function in Parkinson’s disease is difficulty with the act of defecation itself. Typically, this problem manifests itself in undue straining and sometimes incomplete emptying. In research studies, it is shown that this problem is actually more common than decreased bowel movement frequency. Difficulty with the act of defecation is due to failure of the rectal sphincter muscles to relax in a coordinated fashion when the bowel movement is being attempted — perhaps due to spasm, or dystonia, affecting these muscles.
The medications described earlier to hasten colon transit are of no value in addressing this problem, and could conceivably even worsen matters by rushing more fecal material to a rectal “door” that does not want to open. No proven treatment for this problem exists, although keeping stool soft seems logical. There have been some suggestions that apomorphine injections just prior to attempting a bowel movement may be helpful, but formal studies of this approach have not been undertaken. Botulinum toxin injections into the sphincter muscles have also been successfully employed in small numbers of patients.
Bladder and urinary difficulties
Bladder or urinary difficulties are also common in PD. Older research studies indicated the presence of impaired urinary function in slightly over 70 percent of PD patients, although recent studies suggest a more modest frequency of 27 to 39 percent. Despite the frequency of urinary dysfunction, actual urinary incontinence is relatively uncommon. Troublesome incontinence develops in only about 15 percent of individuals.
Unlike bowel dysfunction, which may precede (sometimes by years) the development of motor features in people with PD, urinary dysfunction typically does not become evident until the later stages of the disease. The primary function of the bladder is twofold — to store urine as it is formed and then to empty the urine when it is convenient and socially acceptable to do so. With PD, problems can emerge in both areas.
The most common urinary symptoms experienced by people with Parkinson’s are first, the need to urinate extremely frequently, and second, difficulty in delaying urination once the need is perceived, creating a sense of urinary urgency. These symptoms usually indicate an irritable or overactive bladder that is signaling the brain that it is full and needs to empty when, in fact, it really is not. In addition to urinary frequency and urgency during the daytime, individuals with this problem also may have to get up multiple times during the night to urinate.
Medications that work to block or reduce bladder overactivity can be useful in treating this form of bladder dysfunction. A variety of medications are available for this purpose, including older medicines such as oxybutynin and tolterodine, and newer medications such as solifenacin and darifenacin.
Impairment of bladder emptying is a less frequent but still troublesome feature of urinary dysfunction in Parkinson’s. This difficulty is produced by delay or difficulty in relaxation of the urethral sphincter muscles, which is necessary to allow the bladder to empty. This can result in hesitancy in initiating urination, difficulty in generating a stream and incomplete emptying of the bladder. Dystonia of the urethral sphincter has also been described.
The medications listed above are not helpful for this type of bladder dysfunction and may actually aggravate the difficulty. Medications such as bethanechol may be helpful but intermittent self-catheterization is sometimes necessary. Before initiating these, a doctor must make sure that some unrelated process, such as an enlarged prostate, is not responsible for the problem.
The Bottom line
Both gastrointestinal and urinary problems are frequent features of PD. Awareness of their existence and recognition of their presence are the first necessary steps to adequate management. People with Parkinson’s should not hesitate to bring these problems to the attention of their physicians, especially since effective treatment is often available.
Dr. Ronald F. Pfeiffer is Professor and Vice Chair of the Department of Neurology at the University of Tennessee Health Science Center.
He has extensive experience in clinical trials of experimental medications and has a particular interest in gastrointestinal dysfunction in Parkinson’s disease.
Wednesday, April 25, 2007
Wrong diagnosis of Parkinson disease
Tue Apr 24, 2007 11:47 pm Post subject: Wrong diagnosis of Parkinson disease
My mother was treated for Parkinsons based on the symptoms.
She was taking medicines for 6 years. Last couple of months we stopped the medicines as Doctor felt that she is not a parkinson patient.
We can able to see slight improvement.Can anyone tell me what is the effect of taking medicines without Parkinson?
Will it create real parkinson? Please help me.
Back to top
'
Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Wed Apr 25, 2007 6:33 am Post subject:
In general we believe that there are no ill effects from taking medicines for Parkinson if you do not have it, however this topic has not been thoroughly researched. We are always concerned that taking high doses of medicine early in Parkinson may prime the system later for complications, although this doesn't happen much anymore in practice. The theoretical concern would be exposure to PD drugs and then later developing PD---would the system be primed in some negative way. We don't know. In short I believe you will be ok and should not worry too much about this. Be sure you have seen a movement diosrders neurologist as I have seen several cases where they discontinue medications and 5 years down the road a specialist diagnoses PD...the trick was how the meds were administered._________________Michael S. Okun, M.D.
Back to top
'
My mother was treated for Parkinsons based on the symptoms.
She was taking medicines for 6 years. Last couple of months we stopped the medicines as Doctor felt that she is not a parkinson patient.
We can able to see slight improvement.Can anyone tell me what is the effect of taking medicines without Parkinson?
Will it create real parkinson? Please help me.
Back to top
'
Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Wed Apr 25, 2007 6:33 am Post subject:
In general we believe that there are no ill effects from taking medicines for Parkinson if you do not have it, however this topic has not been thoroughly researched. We are always concerned that taking high doses of medicine early in Parkinson may prime the system later for complications, although this doesn't happen much anymore in practice. The theoretical concern would be exposure to PD drugs and then later developing PD---would the system be primed in some negative way. We don't know. In short I believe you will be ok and should not worry too much about this. Be sure you have seen a movement diosrders neurologist as I have seen several cases where they discontinue medications and 5 years down the road a specialist diagnoses PD...the trick was how the meds were administered._________________Michael S. Okun, M.D.
Back to top
'
USM creates history with Parkinson's Surgery
WEB EDITION :: Local News
USM creates history with Parkinson's Disease surgery
KOTA BARU (April 24, 2007): Universiti Sains Malaysia Hospital (HUSM) in Kubang Kerian here has achieved a landmark when it successfully treated a long-suffering Parkinson's disease (PD) patient.
The feat was achieved last March 21 when an electrode implant was placed in the brain of a 54 year-old patient, HUSM consultant neurologist Prof Madya Dr John Tharakan K.J. told a media conference here today.
Retired Telekom Malaysia Berhad employee Che Idris Che Yusoff had been suffering from Parkinson's for 17 years, Bernama reported today.
Tharakan said other than the electrode implant, the surgery which took about three hours also involved placing a battery in the patient's chest.
He added that the patient gave positive reaction during treatment, signalling that HUSM had successfully treated other PD symptoms like essential tremor (ET) and dystonia which caused tremors and stiffness that lead to movement disabilities.
Seven specialists were involved in the surgery where the patient was not injected with anaesthetic except when the battery was placed that took 30 minutes. They included neurosurgeon and neuroscience senior consultant Prof Dr Jafri Malin Abdullah and neurosurgery specialist surgeon Dr Abdul Rahman Izaini Ghani who is also a USM lecturer.
Tharakan said the treatment involved placing a 0.8mm or 10mm wire (electrode) to a sensitive part of the brain and is connected with an electrical wire to a battery placed in the patient's chest.
"
The 1.2mm wire can last a lifetime while the battery has to be changed once every five years at a cost of RM5,000."As soon as the electrode wire was in place and the switch at the battery was activated, the patient started to respond and the hand tremors then stopped," he added.
Tharakan said the Parkinson's surgery at HUSM cost about RM90,000 compared with between RM200,000 and RM250,000 charged by private hospitals.
Updated: 01:55AM Wed, 25 Apr 2007
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Copyright© 2007 Sun Media Corporation Sdn. Bhd. All rights reserved. See terms and conditions.
USM creates history with Parkinson's Disease surgery
KOTA BARU (April 24, 2007): Universiti Sains Malaysia Hospital (HUSM) in Kubang Kerian here has achieved a landmark when it successfully treated a long-suffering Parkinson's disease (PD) patient.
The feat was achieved last March 21 when an electrode implant was placed in the brain of a 54 year-old patient, HUSM consultant neurologist Prof Madya Dr John Tharakan K.J. told a media conference here today.
Retired Telekom Malaysia Berhad employee Che Idris Che Yusoff had been suffering from Parkinson's for 17 years, Bernama reported today.
Tharakan said other than the electrode implant, the surgery which took about three hours also involved placing a battery in the patient's chest.
He added that the patient gave positive reaction during treatment, signalling that HUSM had successfully treated other PD symptoms like essential tremor (ET) and dystonia which caused tremors and stiffness that lead to movement disabilities.
Seven specialists were involved in the surgery where the patient was not injected with anaesthetic except when the battery was placed that took 30 minutes. They included neurosurgeon and neuroscience senior consultant Prof Dr Jafri Malin Abdullah and neurosurgery specialist surgeon Dr Abdul Rahman Izaini Ghani who is also a USM lecturer.
Tharakan said the treatment involved placing a 0.8mm or 10mm wire (electrode) to a sensitive part of the brain and is connected with an electrical wire to a battery placed in the patient's chest.
"
The 1.2mm wire can last a lifetime while the battery has to be changed once every five years at a cost of RM5,000."As soon as the electrode wire was in place and the switch at the battery was activated, the patient started to respond and the hand tremors then stopped," he added.
Tharakan said the Parkinson's surgery at HUSM cost about RM90,000 compared with between RM200,000 and RM250,000 charged by private hospitals.
Updated: 01:55AM Wed, 25 Apr 2007
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Copyright© 2007 Sun Media Corporation Sdn. Bhd. All rights reserved. See terms and conditions.
Advice for caregivers
1 . 2
Advice for caregivers
Parkinson's disease does not affect just one person - family and friends all have to 'live' with Parkinson's too.
A caregiver is someone - partner, spouse, friend or adult child - who lives with, regularly helps or looks after a person with Parkinson's disease, but not as a paid job.
Just because you are a partner or relative of some body with Parkinson's does not always mean that you will necessarily be their caregiver.
Being a caregiver can be physically and emotionally challenging so you should notfeel guilty if you are unable to take on this role. As an alternative, it may be worth considering using voluntary or paid help.
You may want to find out more about making your home a more comfortable environment for the patient.
How can I support my relative or friend with Parkinson's disease?
Ideally, try and take an active rather than a passive role in Parkinson's. Work with the person you are caring for to learn all about the condition - its causes, symptoms and treatments. The more you understand, the easier it will be to work through day-to-day problems.
In your role as caregiver you are a central part of the health care team ensuring that the person with Parkinson's can receive the best treatment possible.
To find out more about Parkinson's you may find it useful to investigate other areas of this website.
Other good information sources include Parkinson's disease society magazines, books, news articles, websites and local patient organizations.
Try to find the most knowledgeable and experienced physicians and health professionals in your community - people with a real interest in Parkinson's disease.
It is important that the person with Parkinson's disease visits their doctor regularly for check ups.
Whenever possible, go with them so that you can discuss any symptoms, observations or concerns that you may have with their doctor Physicians, nurses, occupational therapists, physiotherapists, dietitians, speech and language therapists and social workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson's.
Advice for caregivers
Parkinson's disease does not affect just one person - family and friends all have to 'live' with Parkinson's too.
A caregiver is someone - partner, spouse, friend or adult child - who lives with, regularly helps or looks after a person with Parkinson's disease, but not as a paid job.
Just because you are a partner or relative of some body with Parkinson's does not always mean that you will necessarily be their caregiver.
Being a caregiver can be physically and emotionally challenging so you should notfeel guilty if you are unable to take on this role. As an alternative, it may be worth considering using voluntary or paid help.
You may want to find out more about making your home a more comfortable environment for the patient.
How can I support my relative or friend with Parkinson's disease?
Ideally, try and take an active rather than a passive role in Parkinson's. Work with the person you are caring for to learn all about the condition - its causes, symptoms and treatments. The more you understand, the easier it will be to work through day-to-day problems.
In your role as caregiver you are a central part of the health care team ensuring that the person with Parkinson's can receive the best treatment possible.
To find out more about Parkinson's you may find it useful to investigate other areas of this website.
Other good information sources include Parkinson's disease society magazines, books, news articles, websites and local patient organizations.
Try to find the most knowledgeable and experienced physicians and health professionals in your community - people with a real interest in Parkinson's disease.
It is important that the person with Parkinson's disease visits their doctor regularly for check ups.
Whenever possible, go with them so that you can discuss any symptoms, observations or concerns that you may have with their doctor Physicians, nurses, occupational therapists, physiotherapists, dietitians, speech and language therapists and social workers are just a few of the people who can help you with the many aspects of providing care for someone with Parkinson's.
Managing Parkinson's disease
Managing Parkinson's disease
Parkinson's is a common neurological disorder that is thought to affect more than four million people world-wide.
Parkinson's is a slowly progressive disorder that is life altering, but is not life threatening. Recent advances in medications and surgery mean that doctors and patients now have better control over the condition than ever before.
Not everyone will experience exactly the same Parkinson's disease symptoms at the same time. The disease can affect everyone very differently and in some cases it
My educational journey
may be many years before there is any disability or significant limitation of daily activities.Your doctor will recommend a particular treatment depending on your specific symptoms. Not everyone will receive the same medications, and in the very early stages of the disease you may not need any medication at all.
How is a diagnosis of Parkinson's disease made?
Parkinson's disease is most frequently assessed on the basis of your current symptoms; these assessments cannot tell how the condition will evolve over time or how you will respond to treatment.Classic diagnosis is made on the basis of whether symptoms are improved by adding levodopa.In addition to a clinical assessment, your doctor or specialist may use one of two disability rating scales. The first scale is quite a simple scale: the Hoehn & Yahr, named after the two doctors who devised it in 1967.The Hoehn & Yahr scale allocates stages from 0 to 5 to indicate the relative level of disability you are experiencing
.The Hoehn & Yahr stages0: No visible symptoms of Parkinson's disease 1: Parkinson's disease symptoms just on one side of the body 2: Parkinson's disease symptoms on both sides of the body and no difficulty walking 3: Parkinson's disease symptoms on both sides of the body and minimal difficulty walking 4: Parkinson's disease symptoms on both sides of the body and moderate difficulty walking 5: Parkinson's disease symptoms on both sides of the body and unable to walkImportantly, the Hoehn & Yahr scale was devised to support the introduction of most current Parkinson's disease treatments.
It was intended to include the entire range of Parkinson's states. Parkinson's does not necessarily progress to the more advanced stages (stages 4 and 5).A more detailed scale - the Unified Parkinson Disease Rating Scale (UPDRS) - has been widely used by specialists, particularly in research studies of new treatments. The UPDRS includes a wide range of assessments, using 42 questions divided into four main subsections:
I. Meditation (ability to process thoughts), behaviour and mood II. Activities of daily living (during both 'on' and 'off ' periods) III. Motor examination IV. Complications of therapy (that have occurred in the last week)
In addition to assessing mobility, doctors can also use quality of life scales to gain a better understanding of how troublesome your Parkinson's disease symptoms are and how you are feeling. The PDQ-39, so called because it is made up of 39 questions, is a quality of life questionnaire that has been developed specifically for Parkinson's disease.
Together, these disability and quality of life scales can be used to help gauge Parkinson's disease, its impact on daily life and its response to treatment.
Another important technique is functional imaging. Functional imaging provides structural images of the brain using techniques such as computed tomography (CT) or magnetic resonance imaging (MRI) scans. It is possible to look at images of the brain chemistry by administering tiny doses of radioactive substances that concentrate in specific parts of the brain.
These techniques are callewhom the diagnosis is uncertain.
TOP
Parkinson's is a common neurological disorder that is thought to affect more than four million people world-wide.
Parkinson's is a slowly progressive disorder that is life altering, but is not life threatening. Recent advances in medications and surgery mean that doctors and patients now have better control over the condition than ever before.
Not everyone will experience exactly the same Parkinson's disease symptoms at the same time. The disease can affect everyone very differently and in some cases it
My educational journey
may be many years before there is any disability or significant limitation of daily activities.Your doctor will recommend a particular treatment depending on your specific symptoms. Not everyone will receive the same medications, and in the very early stages of the disease you may not need any medication at all.
How is a diagnosis of Parkinson's disease made?
Parkinson's disease is most frequently assessed on the basis of your current symptoms; these assessments cannot tell how the condition will evolve over time or how you will respond to treatment.Classic diagnosis is made on the basis of whether symptoms are improved by adding levodopa.In addition to a clinical assessment, your doctor or specialist may use one of two disability rating scales. The first scale is quite a simple scale: the Hoehn & Yahr, named after the two doctors who devised it in 1967.The Hoehn & Yahr scale allocates stages from 0 to 5 to indicate the relative level of disability you are experiencing
.The Hoehn & Yahr stages0: No visible symptoms of Parkinson's disease 1: Parkinson's disease symptoms just on one side of the body 2: Parkinson's disease symptoms on both sides of the body and no difficulty walking 3: Parkinson's disease symptoms on both sides of the body and minimal difficulty walking 4: Parkinson's disease symptoms on both sides of the body and moderate difficulty walking 5: Parkinson's disease symptoms on both sides of the body and unable to walkImportantly, the Hoehn & Yahr scale was devised to support the introduction of most current Parkinson's disease treatments.
It was intended to include the entire range of Parkinson's states. Parkinson's does not necessarily progress to the more advanced stages (stages 4 and 5).A more detailed scale - the Unified Parkinson Disease Rating Scale (UPDRS) - has been widely used by specialists, particularly in research studies of new treatments. The UPDRS includes a wide range of assessments, using 42 questions divided into four main subsections:
I. Meditation (ability to process thoughts), behaviour and mood II. Activities of daily living (during both 'on' and 'off ' periods) III. Motor examination IV. Complications of therapy (that have occurred in the last week)
In addition to assessing mobility, doctors can also use quality of life scales to gain a better understanding of how troublesome your Parkinson's disease symptoms are and how you are feeling. The PDQ-39, so called because it is made up of 39 questions, is a quality of life questionnaire that has been developed specifically for Parkinson's disease.
Together, these disability and quality of life scales can be used to help gauge Parkinson's disease, its impact on daily life and its response to treatment.
Another important technique is functional imaging. Functional imaging provides structural images of the brain using techniques such as computed tomography (CT) or magnetic resonance imaging (MRI) scans. It is possible to look at images of the brain chemistry by administering tiny doses of radioactive substances that concentrate in specific parts of the brain.
These techniques are callewhom the diagnosis is uncertain.
TOP
Treatment of wearing off
Treatment wearing-off
Levodopa remains the cornerstone of any long-term Parkinson's disease treatment plan. However, its ability to control the symptoms of Parkinson's can become reduced over the years. You may begin to experience what is known as 'wearing-off' where your symptoms begin to re-emerge before it is time to take your next scheduled dose.When experiencing 'wearing-off' you may notice changes in your movement and mobility, thoughts and feelings, sensations and your overall sense of well-being.For example, you may find that your Parkinson's symptoms begin to re-emerge or become noticeably worse before it is time to take your next scheduled dose of medication. This re-emergence of symptoms is called 'wearing-off'.If you are concerned that you might be experiencing "wearing off", an quick and easy way to find out is by using the wearing-off question card. If you answer one or more of the 19 symptom-related questions with "I experience symptom" and "symptom improves after my next medication dose", it might be helpful to discuss "wearing-off" with your doctor at your next visit.
What is meant by treatment wearing-off?
Wearing-off refers to the re-emergence or worsening of a Parkinson's disease symptom, commonly occurring two or more hours after a dose of levodopa medication. These symptoms usually improve or resolve once the next dose of levodopa medication takes effect.
Because Parkinson's disease is a movement disorder, attention has focused on problems with movement - known as motor symptoms - as these are the cardinal symptoms of Parkinson's disease and can be easily identified.
Motor symptoms include tremor, rigidity or muscle stiffness and slowness of movement or 'bradykinesia'.
The tools used by clinicians to identify wearing-off during a clinical assessment mainly focus on the return of these motor symptoms. However, you may experience other symptoms when your medication 'wears-off' that aren't related to movement, and are consequently less obvious. These symptoms of Parkinson's have been classified as non-motor symptoms.
However, you may experience other symptoms when your medication 'wears-off' that aren't related to movement, and are consequently less obvious. These symptoms of Parkinson's disease have been classified as non-motor symptoms. Non-motor symptoms can include changes in thoughts and feelings, sensations and sense of well-being and changes in autonomic nervous system functions (e.g. sweating). Although non-motor symptoms may not be as obvious as motor symptoms, they are no less important. On the contrary, non-motor symptoms can actually be more bothersome and disabling than motor symptoms.
Wearing-off can include both motor and non-motor symptoms. Your doctor may not recognize non-motor symptoms of wearing-off as easily as motor symptoms, because they can be quite subjective. Also you may interpret these non-motor symptoms as being part of the normal course of the disease and may not recognize the link to medication doses. You can help your doctor to identify non-motor symptoms by providing a description of how and, importantly, when these symptoms occur, to help your doctor identify these symptoms, as they can be improved if recognized and treated.
Levodopa remains the cornerstone of any long-term Parkinson's disease treatment plan. However, its ability to control the symptoms of Parkinson's can become reduced over the years. You may begin to experience what is known as 'wearing-off' where your symptoms begin to re-emerge before it is time to take your next scheduled dose.When experiencing 'wearing-off' you may notice changes in your movement and mobility, thoughts and feelings, sensations and your overall sense of well-being.For example, you may find that your Parkinson's symptoms begin to re-emerge or become noticeably worse before it is time to take your next scheduled dose of medication. This re-emergence of symptoms is called 'wearing-off'.If you are concerned that you might be experiencing "wearing off", an quick and easy way to find out is by using the wearing-off question card. If you answer one or more of the 19 symptom-related questions with "I experience symptom" and "symptom improves after my next medication dose", it might be helpful to discuss "wearing-off" with your doctor at your next visit.
What is meant by treatment wearing-off?
Wearing-off refers to the re-emergence or worsening of a Parkinson's disease symptom, commonly occurring two or more hours after a dose of levodopa medication. These symptoms usually improve or resolve once the next dose of levodopa medication takes effect.
Because Parkinson's disease is a movement disorder, attention has focused on problems with movement - known as motor symptoms - as these are the cardinal symptoms of Parkinson's disease and can be easily identified.
Motor symptoms include tremor, rigidity or muscle stiffness and slowness of movement or 'bradykinesia'.
The tools used by clinicians to identify wearing-off during a clinical assessment mainly focus on the return of these motor symptoms. However, you may experience other symptoms when your medication 'wears-off' that aren't related to movement, and are consequently less obvious. These symptoms of Parkinson's have been classified as non-motor symptoms.
However, you may experience other symptoms when your medication 'wears-off' that aren't related to movement, and are consequently less obvious. These symptoms of Parkinson's disease have been classified as non-motor symptoms. Non-motor symptoms can include changes in thoughts and feelings, sensations and sense of well-being and changes in autonomic nervous system functions (e.g. sweating). Although non-motor symptoms may not be as obvious as motor symptoms, they are no less important. On the contrary, non-motor symptoms can actually be more bothersome and disabling than motor symptoms.
Wearing-off can include both motor and non-motor symptoms. Your doctor may not recognize non-motor symptoms of wearing-off as easily as motor symptoms, because they can be quite subjective. Also you may interpret these non-motor symptoms as being part of the normal course of the disease and may not recognize the link to medication doses. You can help your doctor to identify non-motor symptoms by providing a description of how and, importantly, when these symptoms occur, to help your doctor identify these symptoms, as they can be improved if recognized and treated.
Discussion: MY PD PROGRESSION
Author
Message
wolfJoined: 08 Apr 2007Posts: 50
Posted: Sun Apr 22, 2007 5:04 pm Post subject: My PD progression
I am 63 years old as of last February. I was Dx'ed in2003 with PD.
I am enclosing a list of symptoms and there time of starting.
I would appreciate any and all comments. I take only Bindery to ameliorate the tremors.
Symptom Started Anxiety and depression 1977 resting tremor on right side 1980 “freezing” of left foot 1980
weakening of arms 1995 micrograph's 1995 walking “tip toe” 1995
constipation 1998 slight bradykinesia 1998 arms do not swing walking 1998 resting tremor both sides
2000 poor balance
2001 retropulsion 2001 frequent falls 2002 difficulty standing up from sitting
2003 loss of range of neck turning 2003 “pill rolling” in sleep
2004 reduced range in arms 2004 Two hour naps every day 2004
difficulty putting on shirts 2005 shouting or grunting in sleep 2005 shuffling gate inside 2005 memory and cognitive deteriorating 2005 moderate bradykinesia
2006 stiffness all over body 2007
Thank you, and please comment. Jack
Back to top
Message
wolfJoined: 08 Apr 2007Posts: 50
Posted: Sun Apr 22, 2007 5:04 pm Post subject: My PD progression
I am 63 years old as of last February. I was Dx'ed in2003 with PD.
I am enclosing a list of symptoms and there time of starting.
I would appreciate any and all comments. I take only Bindery to ameliorate the tremors.
Symptom Started Anxiety and depression 1977 resting tremor on right side 1980 “freezing” of left foot 1980
weakening of arms 1995 micrograph's 1995 walking “tip toe” 1995
constipation 1998 slight bradykinesia 1998 arms do not swing walking 1998 resting tremor both sides
2000 poor balance
2001 retropulsion 2001 frequent falls 2002 difficulty standing up from sitting
2003 loss of range of neck turning 2003 “pill rolling” in sleep
2004 reduced range in arms 2004 Two hour naps every day 2004
difficulty putting on shirts 2005 shouting or grunting in sleep 2005 shuffling gate inside 2005 memory and cognitive deteriorating 2005 moderate bradykinesia
2006 stiffness all over body 2007
Thank you, and please comment. Jack
Back to top
Growing Old is Wonderful
:: True Story
Growing old is wonderful - Dr Chew Nee Kong - 4 April 2006
Without realizing it, I am turning 40 this year. Overall, I feel I’m still the same, except probably just a bit wiser. My body has still not shown signs of giving up (I think so), except for some wrinkles around my eyes. Even my medical students have complaint that they couldn’t catch up with my pace when we walked round the hospital. For the past 40 years, I had always known of this inevitable and natural process called ageing, but somehow I have never seen myself as an ageing man. So you can imagine my shock when, a few days ago, a friend of mine suggested that I could be facing a mid-life crisis!
Frankly speaking, I don’t think I am really facing a mid-life crisis. My real problem is that I just “forgot” to catch up with my age. And finally, after 40 years of existence in this world, someone has made me realize that I should start “behaving and thinking” like a middle-aged man.
Naturally, almost everyone who is approaching the end of life will worry about the impending loss of physical, mental, occupational and social functions as a result of natural ageing and illnesses. The middle-age period is also the time for reflection – thinking and wondering about many life events (both good and bad) that took place in the past.
As for me, so many events took place in my life that shaped me to be who I am now and so many wonderful surprises came into my life that formed my “memory album”. Upon reflection, I am pleasantly surprised that I have accumulated a wealth of life experiences that can only be claimed by an “old” person, the most special of which was my discovery of the Parkinson’s support group.
This memorable event took place during the Parkinson’s support group meeting at Hong Kong SAR back in 2001. I was struck by the perseverance and determination of Mr Lloyd Tan Pao Chan, our beloved Life President and founding father of Malaysian Parkinson’s Disease Association (MPDA). His mere presence at the meeting was enough to show the world how hard he tried to overcome all odds, despite being wheelchair-ridden, to travel all the way to Hong Kong SAR. I also met Ms Sara Lew, a former President of MPDA, who was responsible for “dragging” me into the arms of MPDA
My involvement in the MPDA was really unique in the sense that it opened up a totally new dimension in my life. I was literally thrown into a new world which was totally different from the hospital that I had previously thought to be my only world. All the events that subsequently took place in the MPDA were like a chain reaction – each wonderful surprise led to another over the past five years.
What is most spectacular about the MPDA is that it is actually a big and loving family that has been disguised as a non-governmental organization (NGO). The committee members were unique in the sense that despite comprising people from all walks of the life, they felt strongly for each other. Some of them are best remembered for their remarkable personality. Whenever I drank coffee with my British colleagues while in London back in 2003, I had always remembered Ms Eva Chong. She is better known as the beautiful and sweet lady who serves me coffee every time we have committee meeting on Saturday afternoons. Ms Lisa Yap is the cool and elegant lady who has always reminded me that LIFE IS GREAT. Mr Chee Liew Seong, our beloved present President, has always had this fatherly figure in him – his pleasant personality has a strong calming effect whenever there is any internal conflict. Ms Tan Teck Bee, the longest serving committee member of MPDA, has always been an attractive and loving lady who spices up the meetings.
Whenever I talk about the MPDA committee members, I cannot avoid revealing to the whole world that they are one of the best NGO teams in Malaysia. In a telephone conversation, Ms Lisa Yap summarized everything about the MPDA committee in the most accurate and touching manner: “Over the past five years, the committee members’ love for the MPDA has grown tremendously. They have a common vision which has strengthen the bond between each of them. And whatever they do, it is for the sake of MPDA and members, and not for the sake of themselves”.
But life is not always sweet in the MPDA. Internal conflicts are part and parcel of life in any family. Occasionally there are some people who have placed their own interest above that of the MPDA. Ironically, even these “trouble-makers” are generally honest and have actually contributed to the big family. I always believe that as long as we continue to hold on to our true values, the integrity of the organization will not be compromised. As the saying goes, “honesty is the way to charity”.
Talking about honesty again, I have always remembered Ms Sara Lew’s comments about some good Samaritans who just simply “dropped down from the sky”:
“Whenever the MPDA is down, somehow someone will come along its way and help it to stand up again. This will continue to happen as long as the society knows that we are sincere.”
The list of good Samaritans whom we have encountered is just too long. Ms Gharizah Hashim and the local support group in Negeri Sembilan have been our close friends for many years. Ms Gharizah is always remembered for her trademark “Smile and Be Happy Always”. I have always been impressed by her charisma and optimism (she never says die). The late Mr Ismail Sulaiman and his family have always had MPDA in their hearts. What is most touching is the fact that Mr Sulaiman’s family had fulfilled the pledge made by him prior to his demise by giving us a big helping hand in the setting up of the Parkinson’s Club (PC). Mr and Mrs Tan Hang Kim are best remembered as the loving couple who have significantly contributed to the PC.
Mr Ian Goh is always appreciated for creating one of the best support group websites in Malaysia. I think the MPDA website is probably his way of remembering his late father who had succumbed to Parkinson’s Disease. Mr Wilson Wong, our new friend who has recently given the MPDA website a “new life”, is best remembered as the youngest university lecturer whom I have ever met in my life. Other than all the wonderful people mentioned above, it is just impossible to mention about many more friends that we are greatly indebted to. At present, the MPDA is certainly not the most established or largest NGO in Malaysia. However, in view of the limited resources and manpower that it faces, the MPDA is already a story of success. The MPDA has been able to shower the local Parkinson’s community with love, which is actually much more important than sophisticated equipments and ten storey office buildings owned by many other NGOs. The most important point to remember is that all of us have to be contented with the current achievement of the MPDA.
I can never forget the love song that Mr Koh Hun Wai, a Parkinson’s sufferer and committee member of MPDA, sang during the Seremban Charity Dinner that took place in 2005. He had dedicated the song to his wife, who had been his pillar of strength for many years. And he went on to deliver this emotional speech that came straight from his heart:
“To all the Parkinson’s sufferer, I would like to urge you to be not ashamed of your physical disability. Whenever people stare at your trembling hands, just go straight up to them and tell them that you have Parkinson’s Disease, instead of shying away from them”. That touching event made me realize that the most natural and purest form of beauty in life is the love that you shower on other unfortunate people. And since then, I had found that the mountain, sea and sky were no longer as beautiful as I had previously thought.
The recent birth of the PC, as a special place for the Parkinson’s community to share their love, is another important milestone in the history of the MPDA. The PC will be the “heart” of the MPDA because it will determine the future direction and progress of this association. I hope that all of us will focus our energy and time on the PC as it will bring the MPDA into another dimension in community work. The rise or fall of the MPDA, and also its destiny, will lie in the development of the PC.
Interestingly, my involvement in the MPDA also led me to some other social activists who were outside the association. My most remarkable friends are Mr Anthony Thanasayan and Mr Andrew Martin, who have fought hard for the rights of the under-privileged community in Malaysia. Mr Thanasayan, who has been disabled since childhood, has made me wonder whether the inability to walk is really a “physical disability”. And both of them have also taught me a lot about life and love, and I am thankful to them for this.
Having said so much about all the wonderful things about the MPDA, I certainly cannot ignore the other side of my life – my medical career. Despite being a rewarding duty, voluntary work can be quite “punishing” as it adds to the existing work-related stress in my medical career. Ever since the very day I found the MPDA, I had always thought that I would eventually leave the MPDA after I have done “enough” for the Parkinson’s community. However, as the years went by, I have realized that there will not be any “enough is enough” in the MPDA. The truth is that, over the years, I had gradually and unknowingly built my world around this wonderful family, and now I know that it is already too late for me to leave.
To sum up everything, growing old is actually wonderful. Appreciating the present and past happiness should be an essential part of “getting old”. As I approach the last third of my life, I wish to continue to store all these wonderful surprises in my “memory album”, where I cherish the images of my mother, Mr Anthony Thanasayan, Mr Andrew Martin and all the friends in the MPDA.
I hope I can live up to the age of 50 to tell more wonderful stories about my life and the MPDA. And while waiting for the very day when I will become a much wiser old man, I will continue to look back, and reflect on the past…..
Growing old is wonderful - Dr Chew Nee Kong - 4 April 2006
Without realizing it, I am turning 40 this year. Overall, I feel I’m still the same, except probably just a bit wiser. My body has still not shown signs of giving up (I think so), except for some wrinkles around my eyes. Even my medical students have complaint that they couldn’t catch up with my pace when we walked round the hospital. For the past 40 years, I had always known of this inevitable and natural process called ageing, but somehow I have never seen myself as an ageing man. So you can imagine my shock when, a few days ago, a friend of mine suggested that I could be facing a mid-life crisis!
Frankly speaking, I don’t think I am really facing a mid-life crisis. My real problem is that I just “forgot” to catch up with my age. And finally, after 40 years of existence in this world, someone has made me realize that I should start “behaving and thinking” like a middle-aged man.
Naturally, almost everyone who is approaching the end of life will worry about the impending loss of physical, mental, occupational and social functions as a result of natural ageing and illnesses. The middle-age period is also the time for reflection – thinking and wondering about many life events (both good and bad) that took place in the past.
As for me, so many events took place in my life that shaped me to be who I am now and so many wonderful surprises came into my life that formed my “memory album”. Upon reflection, I am pleasantly surprised that I have accumulated a wealth of life experiences that can only be claimed by an “old” person, the most special of which was my discovery of the Parkinson’s support group.
This memorable event took place during the Parkinson’s support group meeting at Hong Kong SAR back in 2001. I was struck by the perseverance and determination of Mr Lloyd Tan Pao Chan, our beloved Life President and founding father of Malaysian Parkinson’s Disease Association (MPDA). His mere presence at the meeting was enough to show the world how hard he tried to overcome all odds, despite being wheelchair-ridden, to travel all the way to Hong Kong SAR. I also met Ms Sara Lew, a former President of MPDA, who was responsible for “dragging” me into the arms of MPDA
My involvement in the MPDA was really unique in the sense that it opened up a totally new dimension in my life. I was literally thrown into a new world which was totally different from the hospital that I had previously thought to be my only world. All the events that subsequently took place in the MPDA were like a chain reaction – each wonderful surprise led to another over the past five years.
What is most spectacular about the MPDA is that it is actually a big and loving family that has been disguised as a non-governmental organization (NGO). The committee members were unique in the sense that despite comprising people from all walks of the life, they felt strongly for each other. Some of them are best remembered for their remarkable personality. Whenever I drank coffee with my British colleagues while in London back in 2003, I had always remembered Ms Eva Chong. She is better known as the beautiful and sweet lady who serves me coffee every time we have committee meeting on Saturday afternoons. Ms Lisa Yap is the cool and elegant lady who has always reminded me that LIFE IS GREAT. Mr Chee Liew Seong, our beloved present President, has always had this fatherly figure in him – his pleasant personality has a strong calming effect whenever there is any internal conflict. Ms Tan Teck Bee, the longest serving committee member of MPDA, has always been an attractive and loving lady who spices up the meetings.
Whenever I talk about the MPDA committee members, I cannot avoid revealing to the whole world that they are one of the best NGO teams in Malaysia. In a telephone conversation, Ms Lisa Yap summarized everything about the MPDA committee in the most accurate and touching manner: “Over the past five years, the committee members’ love for the MPDA has grown tremendously. They have a common vision which has strengthen the bond between each of them. And whatever they do, it is for the sake of MPDA and members, and not for the sake of themselves”.
But life is not always sweet in the MPDA. Internal conflicts are part and parcel of life in any family. Occasionally there are some people who have placed their own interest above that of the MPDA. Ironically, even these “trouble-makers” are generally honest and have actually contributed to the big family. I always believe that as long as we continue to hold on to our true values, the integrity of the organization will not be compromised. As the saying goes, “honesty is the way to charity”.
Talking about honesty again, I have always remembered Ms Sara Lew’s comments about some good Samaritans who just simply “dropped down from the sky”:
“Whenever the MPDA is down, somehow someone will come along its way and help it to stand up again. This will continue to happen as long as the society knows that we are sincere.”
The list of good Samaritans whom we have encountered is just too long. Ms Gharizah Hashim and the local support group in Negeri Sembilan have been our close friends for many years. Ms Gharizah is always remembered for her trademark “Smile and Be Happy Always”. I have always been impressed by her charisma and optimism (she never says die). The late Mr Ismail Sulaiman and his family have always had MPDA in their hearts. What is most touching is the fact that Mr Sulaiman’s family had fulfilled the pledge made by him prior to his demise by giving us a big helping hand in the setting up of the Parkinson’s Club (PC). Mr and Mrs Tan Hang Kim are best remembered as the loving couple who have significantly contributed to the PC.
Mr Ian Goh is always appreciated for creating one of the best support group websites in Malaysia. I think the MPDA website is probably his way of remembering his late father who had succumbed to Parkinson’s Disease. Mr Wilson Wong, our new friend who has recently given the MPDA website a “new life”, is best remembered as the youngest university lecturer whom I have ever met in my life. Other than all the wonderful people mentioned above, it is just impossible to mention about many more friends that we are greatly indebted to. At present, the MPDA is certainly not the most established or largest NGO in Malaysia. However, in view of the limited resources and manpower that it faces, the MPDA is already a story of success. The MPDA has been able to shower the local Parkinson’s community with love, which is actually much more important than sophisticated equipments and ten storey office buildings owned by many other NGOs. The most important point to remember is that all of us have to be contented with the current achievement of the MPDA.
I can never forget the love song that Mr Koh Hun Wai, a Parkinson’s sufferer and committee member of MPDA, sang during the Seremban Charity Dinner that took place in 2005. He had dedicated the song to his wife, who had been his pillar of strength for many years. And he went on to deliver this emotional speech that came straight from his heart:
“To all the Parkinson’s sufferer, I would like to urge you to be not ashamed of your physical disability. Whenever people stare at your trembling hands, just go straight up to them and tell them that you have Parkinson’s Disease, instead of shying away from them”. That touching event made me realize that the most natural and purest form of beauty in life is the love that you shower on other unfortunate people. And since then, I had found that the mountain, sea and sky were no longer as beautiful as I had previously thought.
The recent birth of the PC, as a special place for the Parkinson’s community to share their love, is another important milestone in the history of the MPDA. The PC will be the “heart” of the MPDA because it will determine the future direction and progress of this association. I hope that all of us will focus our energy and time on the PC as it will bring the MPDA into another dimension in community work. The rise or fall of the MPDA, and also its destiny, will lie in the development of the PC.
Interestingly, my involvement in the MPDA also led me to some other social activists who were outside the association. My most remarkable friends are Mr Anthony Thanasayan and Mr Andrew Martin, who have fought hard for the rights of the under-privileged community in Malaysia. Mr Thanasayan, who has been disabled since childhood, has made me wonder whether the inability to walk is really a “physical disability”. And both of them have also taught me a lot about life and love, and I am thankful to them for this.
Having said so much about all the wonderful things about the MPDA, I certainly cannot ignore the other side of my life – my medical career. Despite being a rewarding duty, voluntary work can be quite “punishing” as it adds to the existing work-related stress in my medical career. Ever since the very day I found the MPDA, I had always thought that I would eventually leave the MPDA after I have done “enough” for the Parkinson’s community. However, as the years went by, I have realized that there will not be any “enough is enough” in the MPDA. The truth is that, over the years, I had gradually and unknowingly built my world around this wonderful family, and now I know that it is already too late for me to leave.
To sum up everything, growing old is actually wonderful. Appreciating the present and past happiness should be an essential part of “getting old”. As I approach the last third of my life, I wish to continue to store all these wonderful surprises in my “memory album”, where I cherish the images of my mother, Mr Anthony Thanasayan, Mr Andrew Martin and all the friends in the MPDA.
I hope I can live up to the age of 50 to tell more wonderful stories about my life and the MPDA. And while waiting for the very day when I will become a much wiser old man, I will continue to look back, and reflect on the past…..
Bowels
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Message
Anonymous
Posted: Tue Apr 03, 2007 2:51 pm Post subject: Q: bowels
I have had troubles with my bowels for a least 4 yrs, my trouble is , Idont get the urge to go like use too. before if I had to go, I would feel it coming on then i would go to the bathroom sit down on the tolit and go. now I dont get that urge i just feel bloated. this all started in 2000 after I retired. 1 year later I come down with parkinsons.when I sit down on the stool now I dont have any pushing power even when is soft. I drink a cup of chinese green tea witch has senna in it to get that urge to go. Its like my muscles of the recutum are effected like the pd that effects my legs no strength.or If I use a small rubber bulb to squirt some water in to my rectum , to prime it so to speak, i'll pass a stool. Thats not normal.I drink 8 glassees of water a day, 1 glass of prune juice in the morn.and that helpes to keep my stools soft but doesn't help with the other problem. no blood in stool no cramps or pain Do you have any advise? I exercise every day '70 years old ii worked out all my life Thank you Mr johnson
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Wed Apr 04, 2007 4:41 pm Post subject:
Dear Mr. Johnson, No, this is not a normal condition, you’re right. But it’s also not uncommon among folks with PD. PD can affect the muscles that control peristalsis (movement) of the gastrointestinal tract, including the colon. The muscles slow down, and the stool then moves abnormally slowly. It can also slow or stop the muscles of the anus, so that the urge or ability to expel the stool is lost. You’re doing all the right things – drinking plenty of fluids to keep the stool soft, prunes/prune juice to provide laxative effect, and exercise to keep the GI tract as strong as possible – and I strongly urge you to continue all this, even though it doesn’t seem to be working. All these things truly ARE helping, even though the ability to expel stool is weakened. The water not only keeps the stool soft, it keeps your entire body hydrated, and dehydration is a very common, and debilitating, occurrence, in PD. The exercise not only helps stimulate the colon, it keeps you supple and your bones and muscles strong. If it takes a water enema to “prime” things, that’s OK – I know it’s not the first choice or the easiest, but it is helping you to move the stool. Next, talk to your neurologist; there is a laxative specially designed for those whose constipation is caused by slowed peristalsis – Miralax. It’s not ideal to take a laxative, but sometimes it’s necessary, and Miralax may be a better choice for you than senna. It is available by prescription, and your neurologist should be very familiar with it. Good luck to you, and keep on doing all those excellent things, you are a great example to us all!_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Message
Anonymous
Posted: Tue Apr 03, 2007 2:51 pm Post subject: Q: bowels
I have had troubles with my bowels for a least 4 yrs, my trouble is , Idont get the urge to go like use too. before if I had to go, I would feel it coming on then i would go to the bathroom sit down on the tolit and go. now I dont get that urge i just feel bloated. this all started in 2000 after I retired. 1 year later I come down with parkinsons.when I sit down on the stool now I dont have any pushing power even when is soft. I drink a cup of chinese green tea witch has senna in it to get that urge to go. Its like my muscles of the recutum are effected like the pd that effects my legs no strength.or If I use a small rubber bulb to squirt some water in to my rectum , to prime it so to speak, i'll pass a stool. Thats not normal.I drink 8 glassees of water a day, 1 glass of prune juice in the morn.and that helpes to keep my stools soft but doesn't help with the other problem. no blood in stool no cramps or pain Do you have any advise? I exercise every day '70 years old ii worked out all my life Thank you Mr johnson
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Wed Apr 04, 2007 4:41 pm Post subject:
Dear Mr. Johnson, No, this is not a normal condition, you’re right. But it’s also not uncommon among folks with PD. PD can affect the muscles that control peristalsis (movement) of the gastrointestinal tract, including the colon. The muscles slow down, and the stool then moves abnormally slowly. It can also slow or stop the muscles of the anus, so that the urge or ability to expel the stool is lost. You’re doing all the right things – drinking plenty of fluids to keep the stool soft, prunes/prune juice to provide laxative effect, and exercise to keep the GI tract as strong as possible – and I strongly urge you to continue all this, even though it doesn’t seem to be working. All these things truly ARE helping, even though the ability to expel stool is weakened. The water not only keeps the stool soft, it keeps your entire body hydrated, and dehydration is a very common, and debilitating, occurrence, in PD. The exercise not only helps stimulate the colon, it keeps you supple and your bones and muscles strong. If it takes a water enema to “prime” things, that’s OK – I know it’s not the first choice or the easiest, but it is helping you to move the stool. Next, talk to your neurologist; there is a laxative specially designed for those whose constipation is caused by slowed peristalsis – Miralax. It’s not ideal to take a laxative, but sometimes it’s necessary, and Miralax may be a better choice for you than senna. It is available by prescription, and your neurologist should be very familiar with it. Good luck to you, and keep on doing all those excellent things, you are a great example to us all!_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Learning to live with Parkinson.s Disease?
News: Learning to live with Parkinson's disease
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Apr 03, 2007 7:13 am Post subject: News: Learning to live with Parkinson's disease
Learning to live with Parkinson's disease By Tom Nichols http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml Two years ago, I was diagnosed as having Parkinson's disease, the second most prevalent neurological disease in the United States, coming after Alzheimer's Disease. About a million Americans have Parkinson's. I meet more and more people who have a relative or friend with this disease. Here are my reflections on the disease. First of all, Parkinson's is not fatal. People do die of other diseases that may have been made worse by Parkinson's, but people do not die of Parkinson's itself. Here is how it develops: Some brain cells near the middle of the brain in an area called the substantia nigra begin to malfunction and then die. These cells produce a chemical called dopamine, which is a chemical traffic cop that coordinates various parts of the brain that control muscle movement As these cells die faster than they are replaced, the effects on muscle movement intensify. Perhaps the most visible aspect of Parkinson's is for some limb of the body to shake. In my case, it is the fourth finger of my right hand that is almost always trembling, sometimes very little, sometimes more, especially when I am tired or worried. The other major result of Parkinson's is that the muscle freezes and refuses to move at all, or very slowly. The very first symptom I noticed was my fingers froze straight flat when I was playing my saxophone at a rehearsal of the Believer's Band at First United Methodist Church. Several of my fingers refused to push the keys down to make the note I was trying to play. I had to take the other hand and force the fingers to curve so I could continue to play. I knew this was a problem but my general physician did not recognize the disease. I was misdiagnosed for about four months. A neurologist found I had Parkinson's. Now I am a patient of Dr. Stewart Factor of the Emory University Parkinson Clinic in Atlanta. Dr. Factor is a specialist doing research on Parkinson's. He invited me to be part of two studies being conducted by the Michael J. Fox Foundation. Both studies are trying to discover any possible causes for this disease. I am honored to have participated. There is no cure for Parkinson's. It is a progressive disease. If it strikes a young person that individual has a longer time for the disease to progress. Only 15 percent of all Parkinson's disease patients are under age 50. I was lucky to be 77 when I found out I had the disease. This is my advice to someone who may have symptoms of shaking or freezing muscles: Find a specialist physician who can prescribe an extensive medical program to keep the symptoms under some type of control. If you become overmedicated, you can easily go into a major shaking fit, and you don't want that. If undermedicated, a Parkinson's patient will have more exaggerated symptoms. Some medications work well with one person and not another. So each patient has to find the right balance of medications, the right strength of them, and the right times to take them. I take my meds three times each day, and carry them with me at all times. Besides finding a specialist, I recommend that a person new to the disease might wish to explore a support group. I belong to two such groups, one for cancer and the other for Parkinson's. Since my cancer is very slow growing and I am under no medication or treatment for it, I don't have much to contribute to the cancer support group at First Presbyterian. But I do enjoy meeting with them when possible. I am an active member of the Lake County Shakers, a Parkinson's Disease support group of close to 40 members at St. Paul's Methodist. About half of the members of this group have the disease, and the other half are their caregivers, usually a spouse. The group meets first and third Thursday mornings at 11 a.m. in a classroom at St. Paul's. We exchange information about our individual medications, and have guest speakers describe topics related to living with Parkinson's. And finally, we take fun trips, like our recent trip to the Cherry Blossom Festival in Macon. If interested in attending a session, you are welcome. Call Marie and Bob Bridges at (770) 532-8849 or Louell and Ray Roper at (770) 967-4276 for more information. Parkinson's is not fatal, but it does affect quality of life for those living with it. One can easily get depressed as the disease progresses, but in a support group you find love and understanding from those whose lives have been changed but not destroyed by the disease. I can tell my disease is progressing, but I have not been forced to change my life much. Living with Parkinson's is not easy, but it is far better than the alternative of not living. Tom Nichols is a retired college professor who lives in Gainesville; e-mail, wtomnichols@charter.net. http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Apr 03, 2007 7:13 am Post subject: News: Learning to live with Parkinson's disease
Learning to live with Parkinson's disease By Tom Nichols http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml Two years ago, I was diagnosed as having Parkinson's disease, the second most prevalent neurological disease in the United States, coming after Alzheimer's Disease. About a million Americans have Parkinson's. I meet more and more people who have a relative or friend with this disease. Here are my reflections on the disease. First of all, Parkinson's is not fatal. People do die of other diseases that may have been made worse by Parkinson's, but people do not die of Parkinson's itself. Here is how it develops: Some brain cells near the middle of the brain in an area called the substantia nigra begin to malfunction and then die. These cells produce a chemical called dopamine, which is a chemical traffic cop that coordinates various parts of the brain that control muscle movement As these cells die faster than they are replaced, the effects on muscle movement intensify. Perhaps the most visible aspect of Parkinson's is for some limb of the body to shake. In my case, it is the fourth finger of my right hand that is almost always trembling, sometimes very little, sometimes more, especially when I am tired or worried. The other major result of Parkinson's is that the muscle freezes and refuses to move at all, or very slowly. The very first symptom I noticed was my fingers froze straight flat when I was playing my saxophone at a rehearsal of the Believer's Band at First United Methodist Church. Several of my fingers refused to push the keys down to make the note I was trying to play. I had to take the other hand and force the fingers to curve so I could continue to play. I knew this was a problem but my general physician did not recognize the disease. I was misdiagnosed for about four months. A neurologist found I had Parkinson's. Now I am a patient of Dr. Stewart Factor of the Emory University Parkinson Clinic in Atlanta. Dr. Factor is a specialist doing research on Parkinson's. He invited me to be part of two studies being conducted by the Michael J. Fox Foundation. Both studies are trying to discover any possible causes for this disease. I am honored to have participated. There is no cure for Parkinson's. It is a progressive disease. If it strikes a young person that individual has a longer time for the disease to progress. Only 15 percent of all Parkinson's disease patients are under age 50. I was lucky to be 77 when I found out I had the disease. This is my advice to someone who may have symptoms of shaking or freezing muscles: Find a specialist physician who can prescribe an extensive medical program to keep the symptoms under some type of control. If you become overmedicated, you can easily go into a major shaking fit, and you don't want that. If undermedicated, a Parkinson's patient will have more exaggerated symptoms. Some medications work well with one person and not another. So each patient has to find the right balance of medications, the right strength of them, and the right times to take them. I take my meds three times each day, and carry them with me at all times. Besides finding a specialist, I recommend that a person new to the disease might wish to explore a support group. I belong to two such groups, one for cancer and the other for Parkinson's. Since my cancer is very slow growing and I am under no medication or treatment for it, I don't have much to contribute to the cancer support group at First Presbyterian. But I do enjoy meeting with them when possible. I am an active member of the Lake County Shakers, a Parkinson's Disease support group of close to 40 members at St. Paul's Methodist. About half of the members of this group have the disease, and the other half are their caregivers, usually a spouse. The group meets first and third Thursday mornings at 11 a.m. in a classroom at St. Paul's. We exchange information about our individual medications, and have guest speakers describe topics related to living with Parkinson's. And finally, we take fun trips, like our recent trip to the Cherry Blossom Festival in Macon. If interested in attending a session, you are welcome. Call Marie and Bob Bridges at (770) 532-8849 or Louell and Ray Roper at (770) 967-4276 for more information. Parkinson's is not fatal, but it does affect quality of life for those living with it. One can easily get depressed as the disease progresses, but in a support group you find love and understanding from those whose lives have been changed but not destroyed by the disease. I can tell my disease is progressing, but I have not been forced to change my life much. Living with Parkinson's is not easy, but it is far better than the alternative of not living. Tom Nichols is a retired college professor who lives in Gainesville; e-mail, wtomnichols@charter.net. http://www.gainesvilletimes.com/news/stories/20070402/opinion/165134.shtml_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Exercise may lower risk for Parkinson's disease?
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Apr 24, 2007 10:12 am Post subject: News: Exercise may lower risk for Parkinson's disease
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Public release date: 23-Apr-2007 http://www.eurekalert.org/pub_releases/2007-04/aaon-eml040307.php Contact: Angela Babb ababb@aan.com 651-695-2789 American Academy of Neurology Exercise may lower risk for Parkinson's disease BOSTON -- The risk of developing Parkinson’s disease may be reduced with moderate to vigorous exercise or other recreational activities, according to research that will be presented at the American Academy of Neurology’s 59th Annual Meeting in Boston, April 28 – May 5, 2007. The study followed more than 143,000 people with an average age of 63 over 10 years. In that time, 413 people developed Parkinson’s disease. Researchers found that those with moderate to vigorous activity levels were 40 percent less likely to develop Parkinson’s disease than those with no or light activity levels. Those with moderate to vigorous activity were exercising an average of a half hour per day or more. "This study does not prove that exercise caused the lowered risk of Parkinson’s disease – it’s possible that something else lowers the risk," said the study’s lead author Evan L. Thacker, SM, from the Harvard School of Public Health in Boston, MA. "But considering all of the other benefits of exercise, it certainly doesn’t hurt to make sure you get some moderate or vigorous exercise several times a week." The researchers also looked at the participants’ activity level at age 40 and found that there was no significant relationship between the level of physical activity at age 40 and the risk of developing Parkinson’s disease. "If exercise truly does provide some protection against Parkinson’s disease, the protection may be relatively short term," Thacker said. "However, in a previous study with a similar prospective design activity in early adulthood was related to lower risk for Parkinson’s disease, so the jury’s still out on this one."_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Tue Apr 24, 2007 10:12 am Post subject: News: Exercise may lower risk for Parkinson's disease
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Public release date: 23-Apr-2007 http://www.eurekalert.org/pub_releases/2007-04/aaon-eml040307.php Contact: Angela Babb ababb@aan.com 651-695-2789 American Academy of Neurology Exercise may lower risk for Parkinson's disease BOSTON -- The risk of developing Parkinson’s disease may be reduced with moderate to vigorous exercise or other recreational activities, according to research that will be presented at the American Academy of Neurology’s 59th Annual Meeting in Boston, April 28 – May 5, 2007. The study followed more than 143,000 people with an average age of 63 over 10 years. In that time, 413 people developed Parkinson’s disease. Researchers found that those with moderate to vigorous activity levels were 40 percent less likely to develop Parkinson’s disease than those with no or light activity levels. Those with moderate to vigorous activity were exercising an average of a half hour per day or more. "This study does not prove that exercise caused the lowered risk of Parkinson’s disease – it’s possible that something else lowers the risk," said the study’s lead author Evan L. Thacker, SM, from the Harvard School of Public Health in Boston, MA. "But considering all of the other benefits of exercise, it certainly doesn’t hurt to make sure you get some moderate or vigorous exercise several times a week." The researchers also looked at the participants’ activity level at age 40 and found that there was no significant relationship between the level of physical activity at age 40 and the risk of developing Parkinson’s disease. "If exercise truly does provide some protection against Parkinson’s disease, the protection may be relatively short term," Thacker said. "However, in a previous study with a similar prospective design activity in early adulthood was related to lower risk for Parkinson’s disease, so the jury’s still out on this one."_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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Length of Use of Sinemet?
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Anonymous
Posted: Mon Apr 23, 2007 10:21 pm Post subject: Length of Use for Sinemet
Dear Doctors: Is it truly a fact that Sinemet will only work for a PWP for a certain number of years? If so, does that mean the length of time would be different for each patient, or does it have a certain number of years it will work for everyone. If this is true, once the Sinemet no longer works for a patient, what is the scenario for the quality of life (or movement abilities) to be expected? Or does that also vary? Thanks for your help.
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Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Tue Apr 24, 2007 11:43 am Post subject:
The Sinemet will continue working, but the reponse may be associated with undesirable side effects or the response is not always consistent, causing disability. We try to delay using Sinemet as much as possible, but this does not mean you will live have a poor quality of life because of trying to avoid the medication. Your doctor will tell you when it is time to use it._________________Ramon L Rodriguez, MD
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Length of Use for Sinemet
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Anonymous
Posted: Mon Apr 23, 2007 10:21 pm Post subject: Length of Use for Sinemet
Dear Doctors: Is it truly a fact that Sinemet will only work for a PWP for a certain number of years? If so, does that mean the length of time would be different for each patient, or does it have a certain number of years it will work for everyone. If this is true, once the Sinemet no longer works for a patient, what is the scenario for the quality of life (or movement abilities) to be expected? Or does that also vary? Thanks for your help.
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Dr. RodriguezJoined: 22 Jan 2007Posts: 92Location: Gainesville, Fl
Posted: Tue Apr 24, 2007 11:43 am Post subject:
The Sinemet will continue working, but the reponse may be associated with undesirable side effects or the response is not always consistent, causing disability. We try to delay using Sinemet as much as possible, but this does not mean you will live have a poor quality of life because of trying to avoid the medication. Your doctor will tell you when it is time to use it._________________Ramon L Rodriguez, MD
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Tuesday, April 24, 2007
What's the role of PD caregiver?
What is the role of PD Caregiver?
If possible, try to agree on the role you will play with the person you care for.
The person with Parkinson's disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson's disease in the future—your role will probably change as the Parkinson's disease progresses the role you will play with the person you care for.
The person with Parkinson's disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson's disease in the future—your role will probably change as the Parkinson's disease progresses.
Value your partnerships
Take charge of Parkinson's disease
Learn about the medications for Parkinson's disease
Set realistic goals
Encourage exercise
Express your emotions
Adapt the home environment
Long distance caregiving
If possible, try to agree on the role you will play with the person you care for.
The person with Parkinson's disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson's disease in the future—your role will probably change as the Parkinson's disease progresses the role you will play with the person you care for.
The person with Parkinson's disease will make the decisions, but you need to be there to offer physical and emotional support when it is needed. Be prepared for possible changes in Parkinson's disease in the future—your role will probably change as the Parkinson's disease progresses.
Value your partnerships
Take charge of Parkinson's disease
Learn about the medications for Parkinson's disease
Set realistic goals
Encourage exercise
Express your emotions
Adapt the home environment
Long distance caregiving
Lifestyle of Parkinson Disease?
What about the lifestyle for Parkinson's disease?
Continuing to perform as many daily activities as possible and following a program of regular exercise can help people with Parkinson's disease maintain mobility.
Exercise helps maintain range of motion in stiff muscles, improve circulation, and stimulate appetite.
An exercise program designed by a physical therapist has the best chance of meeting the specific needs of the person with Parkinson’s disease.
A physical therapist may also suggest strategies for balance
compensation and techniques to stimulate movement during slowdowns or freezes.
Physical and occupational therapy can help them maintain or regain muscle tone, maintain range of motion, and learn adaptive strategies. Mechanical aids, such as wheeled walkers, can help them maintain independence.
Good nutrition is important to maintenance of general health.
A person with Parkinson’s disease may lose some interest in food, especially if depressed, and may have nausea from the disease or from medications, especially those known as dopamine agonists (which are discussed further in the Drugs section).
Slow movements may make it difficult to eat quickly, and delayed gastric emptying may lead to a feeling of fullness without having eaten much.
Increasing fiber in the diet can improve constipation, soft foods can reduce the amount of needed chewing, and a prokinetic drug such as cisapride (Propulsid) can increase the movement of food through the digestive system.
A high-fiber diet can help counteract constipation, which may be worsened by the use of levodopa.
People with Parkinson’s disease may need to limit the amount of protein in their diets. The main drug used to treat Parkinson’s disease, L-dopa, is an amino acid, and is absorbed by the digestive system by the same transporters that pick up other amino acids broken down from proteins in the diet.
Limiting protein, under the direction of the physician or a nutritionist, can improve the absorption of L-dopa.
Certain foods, such as prune juice and other juices, and stool softeners, such as senna concentrate, can help keep bowel movements regular.
Difficulty swallowing can result in malnutrition, so doctors must ensure that the diet is nutritious.
Learning to sniff more deeply may improve the ability to smell, enhancing the appetite.
Simple changes around the home can make the home safer for people with Parkinson's disease.
For example, removing throw rugs can prevent tripping, and installing railings in bathrooms, hallways, and other locations reduces the risk of falling.
Continuing to perform as many daily activities as possible and following a program of regular exercise can help people with Parkinson's disease maintain mobility.
Exercise helps maintain range of motion in stiff muscles, improve circulation, and stimulate appetite.
An exercise program designed by a physical therapist has the best chance of meeting the specific needs of the person with Parkinson’s disease.
A physical therapist may also suggest strategies for balance
compensation and techniques to stimulate movement during slowdowns or freezes.
Physical and occupational therapy can help them maintain or regain muscle tone, maintain range of motion, and learn adaptive strategies. Mechanical aids, such as wheeled walkers, can help them maintain independence.
Good nutrition is important to maintenance of general health.
A person with Parkinson’s disease may lose some interest in food, especially if depressed, and may have nausea from the disease or from medications, especially those known as dopamine agonists (which are discussed further in the Drugs section).
Slow movements may make it difficult to eat quickly, and delayed gastric emptying may lead to a feeling of fullness without having eaten much.
Increasing fiber in the diet can improve constipation, soft foods can reduce the amount of needed chewing, and a prokinetic drug such as cisapride (Propulsid) can increase the movement of food through the digestive system.
A high-fiber diet can help counteract constipation, which may be worsened by the use of levodopa.
People with Parkinson’s disease may need to limit the amount of protein in their diets. The main drug used to treat Parkinson’s disease, L-dopa, is an amino acid, and is absorbed by the digestive system by the same transporters that pick up other amino acids broken down from proteins in the diet.
Limiting protein, under the direction of the physician or a nutritionist, can improve the absorption of L-dopa.
Certain foods, such as prune juice and other juices, and stool softeners, such as senna concentrate, can help keep bowel movements regular.
Difficulty swallowing can result in malnutrition, so doctors must ensure that the diet is nutritious.
Learning to sniff more deeply may improve the ability to smell, enhancing the appetite.
Simple changes around the home can make the home safer for people with Parkinson's disease.
For example, removing throw rugs can prevent tripping, and installing railings in bathrooms, hallways, and other locations reduces the risk of falling.
Sinemet Patch
Sinemet Patch
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Anonymous
Posted: Mon Apr 23, 2007 9:08 pm Post subject: Sinemet Patch
Hello, Can you enlighten us on how the trials are coming along on the Sinemet Patch? How many trials do drugs have to go through before approval? How long is the usual time for something like this to get to the market?
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Mon Apr 23, 2007 10:11 pm Post subject:
Hi, I am not aware that sinemet is being developed as a patch. We have tested a dopamine agonist (rotigotine) in the patch form but not sinemet. Typcially, before a drug is approved by the FDA, it should be tested and proven safe among normal individuals (Phase I); tested safe and with some short term efficacy in a small number of PD patients (Phase II); and really safe and with clear efficacy in at least 2 placebo-controlled trials in a large number of PD patients (Phase III). The time depends on a lot of factors...who fast the studies are performed, how clean is the drug, etc. From Phase I to III it can take anywhere from 5 to 10 years. From FDA application to FDA approval, it can take anywhere from 1 to 3 years. Yours, Yours,_________________Hubert H. Fernandez
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Discussion Corner Forum Index -> Ask The Doctor
View previous topic :: View next topic
Author
Message
Anonymous
Posted: Mon Apr 23, 2007 9:08 pm Post subject: Sinemet Patch
Hello, Can you enlighten us on how the trials are coming along on the Sinemet Patch? How many trials do drugs have to go through before approval? How long is the usual time for something like this to get to the market?
Back to top
Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Mon Apr 23, 2007 10:11 pm Post subject:
Hi, I am not aware that sinemet is being developed as a patch. We have tested a dopamine agonist (rotigotine) in the patch form but not sinemet. Typcially, before a drug is approved by the FDA, it should be tested and proven safe among normal individuals (Phase I); tested safe and with some short term efficacy in a small number of PD patients (Phase II); and really safe and with clear efficacy in at least 2 placebo-controlled trials in a large number of PD patients (Phase III). The time depends on a lot of factors...who fast the studies are performed, how clean is the drug, etc. From Phase I to III it can take anywhere from 5 to 10 years. From FDA application to FDA approval, it can take anywhere from 1 to 3 years. Yours, Yours,_________________Hubert H. Fernandez
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Hereditary
NPF Home Help Search
Hereditary
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Anonymous
Posted: Mon Apr 23, 2007 7:19 pm Post subject: Hereditary
My father seems to be showing signs of PD. His father had PD, and I was wondering how much heredity is associated with it.
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Mon Apr 23, 2007 10:06 pm Post subject:
It is hard to tell how much is hereditary and who much is not. In general, PD is NOT hereditary. About 90% are sporadic, non-inherited. In the 10%, there may be a heriditary component. Most hereditary cases start young (below the age of 50) and most sporadic (non-hereditary) cases start older (after 65 years old). Yours,_________________Hubert H. Fernandez
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Hereditary
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Anonymous
Posted: Mon Apr 23, 2007 7:19 pm Post subject: Hereditary
My father seems to be showing signs of PD. His father had PD, and I was wondering how much heredity is associated with it.
Back to top
Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Mon Apr 23, 2007 10:06 pm Post subject:
It is hard to tell how much is hereditary and who much is not. In general, PD is NOT hereditary. About 90% are sporadic, non-inherited. In the 10%, there may be a heriditary component. Most hereditary cases start young (below the age of 50) and most sporadic (non-hereditary) cases start older (after 65 years old). Yours,_________________Hubert H. Fernandez
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Research on Breathing with PD
I am glad that there will have more research on PD's difficulties of breathing i.e. abnormal contraction of the muscles) of chest muscles can lead to abnormal breathing as most patients die on abnormal breathing, a fatal infestion complication diseases.
It leads your face stiffness, difficulity swallowing, soft voice and appetite of food.
Exercises by PD patients be guided by qualified trainers as on how to relieve them for abnormal contraction of the muscles for breathing.
PD movement disorder specialists be trained in this field as they are helpful for them. Kindly comment. Teo Kim H
It leads your face stiffness, difficulity swallowing, soft voice and appetite of food.
Exercises by PD patients be guided by qualified trainers as on how to relieve them for abnormal contraction of the muscles for breathing.
PD movement disorder specialists be trained in this field as they are helpful for them. Kindly comment. Teo Kim H
Monday, April 23, 2007
Parkinson's disease introduction
Parkinson's Disease
Introduction
Thanks to outspoken celebrities such as Muhammad Ali and Michael J. Fox, Parkinson's disease has gained widespread attention in recent years. Both men have Parkinson's disease, and both have focused their efforts and used their celebrity status to raise funds for research and increase awareness about the degenerative nerve condition.
What is it?
Parkinson's disease is a chronic neurological condition named after Dr. James Parkinson, who first identified and described the syndrome in 1817. The disease progresses slowly, affecting a small area of cells in the mid-brain known as the substantia nigra. Degeneration of these cells causes a reduction in the chemical called dopamine, and this reduction results in the signs and symptoms of Parkinson's disease.
Although Parkinson’s disease can occur at any age, it rarely occurs in individuals younger than 30. Rather it often occurs between the ages of 50 and 80 years, with the most common age of first symptoms being 60 years. Typically, risk increases with age. Parkinson’s Disease is not inherited. Early symptoms are generally subtle, occurring gradually. Although Parkinson's disease is a chronic illness, medication and the support of friends and family can help relieve many of the symptoms, enabling affected individuals to maintain a reasonable quality of life. The disease is not fatal.
What causes it?
The cause of Parkinson's disease remains a mystery. The consensus among medical professionals is that it probably results from a combination of genetic and environmental factors. Idiopathic Parkinson's disease is caused by the gradual loss of neurons in the substantia nigra (the region of the brain that controls movement, particularly automatic movements such as arm swinging while walking). When nerve cells in this area become impaired and die, production of a chemical in the brain called dopamine, which aids in transmitting signals, decreases and the result is impaired movement.
Although Parkinson's disease is caused by degeneration limited to the substantia nigra, other degenerative diseases and some medications can produce secondary parkinsonism. Medications that can cause symptoms of Parkinson's disease include antipsychotics (mesoridazine [Serentil], thioridazine [Mellaril], chlorpromazine [Thorazine], perphenazine [Trilafon], fluphenazine [Prolixin], trifluoperazine [Stelazine], haloperidol [Haldol], thiothixene [Navane], risperidone [Risperdal]), antiemetics (prochlorperazine [Compazine]), gastrointestinal antimotility drugs (metoclopramide [Reglan]), and drugs that lower blood pressure such as reserpine (Serpasil). Drug-induced parkinsonism must be ruled out before the diagnosis of Parkinson's disease is made.
Who has it?
It has been estimated that as many as 1.5 million Americans are affected by Parkinson's disease, and about half of these individuals have not been diagnosed with the disease. At this time, it's impossible to predict who will get Parkinson's disease and there is no known prevention.
What are the risk factors?
Currently, it is impossible to predict who will get Parkinson's disease and there is no known method for preventing its occurrence. The disease is believed to affect both men and women almost equally. Currently, age is one of the main risk factors for the disease. Most of those affected do not experience symptoms until after age 50. However, a subset of Parkinson's disease called young-onset Parkinson's disease, affects those under age 40. Two gene mutations have been identified in patients with this type of Parkinson’s Disease. Although the condition is clinically the same, treatment options may differ.
The disease is thought to result from a combination of genetic and environmental factors. Exposure to pesticides and other toxins has been suspected but has not been proven to be a causative factor.
What are the symptoms?
Symptoms of Parkinson's disease appear when the amount of dopamine in the brain is decreased. They often appear gradually, yet with increasing severity. Because the initial symptoms are similar to those of other neurological conditions, diagnosis can be difficult.
Some individuals have few symptoms, whereas others suffer more severe, debilitating symptoms in a short period. Common symptoms include the following:
Resting tremor on one side of the body
Stiffness of limbs (often referred to as rigidity)
Generalized slowing of movements (known as bradykinesia) and gait
Gait or balance problems
Small, overcrowded handwriting (called micrographia)
Lack of arm swing on the affected side of the body
Less frequent blinking and swallowing
Increased dandruff
Increased oily skin
Depression
Anxiety
Decreased facial expression
Episodes of feeling "stuck in place" when initiating a step (called freezing)
Lowered voice volume
Foot dragging on the affected side
Changes in posture
Feeling more tired
Weight loss
How is it treated?
Currently, there is no cure for Parkinson's disease. The goals of treatment are to minimize disability, reduce the possible side effects of drug therapy, and help the patient maintain the highest possible quality of life.
Mild symptoms that don't interfere with daily activities or disrupt work duties may not require medication.
When prescription drugs are needed, they help to manage symptoms, but they can't stop the disease from progressing. Often when a drug no longer effectively controls symptoms, another drug may be added to existing therapy. Optimal management is highly individualized and is best determined by a doctor who specializes in the treatment of Parkinson's disease.
Surgery remains the only option for those patients with severe or fast-progressing Parkinson's disease who have failed all other therapies. In a surgical technique called pallidotomy, an electric probe is used to destroy a small portion of the brain that is overactive and is thought to cause the symptoms of Parkinson's disease.
A thalamotomy is the removal of the thalamus region of the brain. (The thalamus is responsible for involuntary movements; destroying it prevents involuntary movements.) Although this type of surgery is rarely performed, it can be a last resort for patients who have disabling tremors in the hand or arm. However, the procedure does not relieve other symptoms of Parkinson's disease.
Thalamic stimulation is another type of approach in management of Parkinson's disease. In this procedure, an electrode wire is inserted into the thalamus. The other end of the wire is connected to a pulse generator, and the generator is placed under the skin in the chest area.
This device can produce the benefit of thalamotomy without causing wound or scars on the skin and has shown to be very effective in management of tremor in Parkinson's disease.
Deep brain stimulation (DBS) is a new, alternative procedure used to destroy small regions of the brain. A thin electrode implanted into the brain blocks brain waves that can cause uncontrollable movements. This procedure must be continued lifelong. It is especially useful in patients that have severe symptoms associated with tremor, involuntary movements (dyskinesia), and problems with gait.
Helping Yourself
Parkinson's disease can have a huge impact on an individual's daily activities and overall lifestyle. Learning coping strategies, preventing falls, getting proper nutrition, participating in regular movement and exercise, getting proper amounts of sleep, and ensuring adequate hydration can help those suffering from Parkinson's disease maintain a high quality of life.
Coping With Parkinson's Disease
Maintain a positive attitude in both occupational and social situations.
Keep friends and co-workers informed of your status, and to help maintain your independence, accept help only when needed.
Perform tasks on a priority basis to achieve a sense of accomplishment and purpose.
Join local Parkinson's disease organizations and support groups.
Fall Prevention
Avoid carrying objects in both hands while walking, which can disrupt balance.
Avoid standing for long periods with your feet too close together, which can increase your risk of falls.
Lift your feet when walking. Falls may result when you shuffle your feet, and falls can occur as a result of foot drag, which is common among people with Parkinson's disease.
Swing your arms when walking. This helps maintain balance and decreases fatigue.
If your feet feel "frozen to the floor" when you start to walk or move, you can (1) attempt to step over an actual or imaginary obstacle in your path or (2) rock from side to side.
If balancing is difficult, you can learn to use a single-point cane with a large, rubber tip. It takes practice to use a cane comfortably, but once mastered, this skill can make it much easier for you to maintain your balance.
Do not wear rubber-soled shoes because they grip the floor and may cause you to trip.
If rising from a seated position is difficult, place your feet directly under your knees and stand up firmly to overcome the pull of gravity. Rather than using your hands and arms when attempting to stand up, use your thigh muscles. This exercise also helps strengthen the large muscles of the legs, maintaining strength and promoting continued ambulation.
If you tend to feel lightheaded, move slowly when changing positions. When getting out of bed, sit up slowly, remain seated on the side of the bed for 15 to 30 seconds, and then stand in one place for 15 to 30 seconds before walking. This technique can prevent falls.
Do not use throw rugs or wax the floors of your home. Ensure that rooms are well lit, and consider using night-lights in hallways and bathrooms. Keep your home free of clutter to prevent tripping.
In the bathroom, you may need to use grab bars to get into and out of the bathtub. A raised toilet seat with arm rails may also be a necessity.
In the kitchen, you may need to use a long-handled sponge or mop to wipe up spills. Keep supplies that you use often in an easy-to-reach cabinet.
Nutritional Guidelines
Eat small, frequent meals rather than three large meals daily. This helps your body use food properly and makes it easier for you to maintain a healthy weight. Parkinson's disease can slow digestion and affect swallowing. If you have difficulty consuming solid foods, liquid supplements such as Ensure can help provide proper nutrition.
If you have no trouble digesting or swallowing food, eat foods that are high in fiber (vegetables, whole-grain bread, and cereals) and drink plenty of fluids to help prevent constipation and dehydration.
Sleep disturbances are common in individuals with Parkinson's disease. Proper sleep hygiene such as going to bed at the same time every night can be helpful.
Especially for the Caregiver
It is important to set goals that are realistic, and then strive toward them.
Realize that you can't do everything, and recognize when you need help. Available support services may include counseling, a registered nurse, a speech therapist, and a physical therapist.
Be assertive when discussing your concerns with the individual you're caring for or with the healthcare team.
Take time for yourself, including time for rest, relaxation, hobbies, and friends.
Take part in support groups. Talking with others in similar situations may help you realize that you're not alone. Information on support groups can be obtained through the American Parkinson's Disease Association (800.223.2732) and National Parkinson Foundation (800.327.4545).
What is on the horizon?
Molecular science techniques, including gene therapy, stem cell technology, and stimulation of nerve growth factors, are the newest research areas being explored in the treatment of Parkinson's disease.
The National Institute of Neurological Disorders and Stroke is looking to establish effective therapies to slow the progression of Parkinson's disease. Research was conducted to see if Mirapex and Requip slow the progression of Parkinson's disease. The results showed that Requip minimally slowed down the progression of Parkinson's disease when it was compared to levodopa. Patients initially treated with Mirapex also demonstrated a reduction in dopamine neuron degeneration, compared with those initially treated with levodopa, during a 46-month period. More investigations however are needed for a definite conclusion.
Recent studies have also shown that Coenzyme Q10 may be effective in slowing the progression of the Parkinson's disease. This discovery has opened doors for researchers to further investigate the effectiveness of Coenzyme Q10.
References
American Parkinson's Disease association Home Page. http://www.apdaparkinson.org/user/AboutParkinson.asp. Accessed: March 2006.
The National Parkinson Foundation, Inc. Web site. Available at: http://www.parkinson.org/. Accessed: March 2006.
National Institute of Neurological Disorders and Stroke Web site. http://www.ninds.nih.gov/health_and_medical/disorders/parkinsons_disease.htm Accessed: March 2006.
Parkinson's Disease Foundation Web site. Available at: http://www.pdf.org/. Accessed: March 2006.
American Academy of Family Physicians Home Page. Parkinson's Disease. http://www.aafp.org/afp/990415ap/2155.html. Accessed: March 2006.
Aminoff MJ. Parkinson's Disease and Other Extrapyramidal Disorders. In Fauci AS, Braunwald E, Isselbacher, and others, eds. Harrison's Principles of Internal Medicine. 14th ed. New York: McGraw-Hill; 1998: 2356-2363.
Nelson MV, Berchou RC, et al. Parkinson's Disease. Dipiro JT, Albert RL, et al. In: Pharmacotherapy. A Pathophysiologic Approach. 6th ed. Connecticut: Appleton & Lange; 2005: pages 1075-1086.
Hristova AH, Koller C. Early Parkinson's Disease: What is the Best Approach to Treatment? Drugs Aging 2000; 17(3):165-181.
Michael J. Fox Foundation Web site. Available at: http://www.michaeljfox.org/ Accessed: March 2006.
Young R. Update on Parkinson's Disease. American Family Physician Web site. Available at: http://www.aafp.org/afp. Accessed: March 2006.
Brain and Nervous System. In Klag MJ, Lawrence RS, Davis AR, Niparko JK, eds. Johns Hopkins Family Health Book. New York: Harper Collins; 1999.
Olanow CW, Watts RL, Koller WC. Treatment guidelines: an algorithm for the management of Parkinson's disease.Neurology 2001; 56(Suppl 5):S1-S88.
Standaert DG, Young AB. Treatment of Parkinson’s Disease. Goodman and Gilman’s -The Pharmacological Basis of Therapeutics -11th ed. McGraw & Hill; 2006: pages 533-538.
Chen JJ, Shimomura SK. Parkinsonism. Textbook of Therapeutics-Drug and Disease Management-7th ed. Lippincott Williams & Wilkins; 2000: pages 1139-1152.
Ernst ME, Gottwald MD, et al. Parkinson’s Disease. Applied Therapeutics: The Clinical Use of Drugs-8th ed. Lippincott Williams & Wilkins; 2005: pages 53-1 to 53-28.
Parkinson’s Action Network. Available at: http://www.parkinsonaction.org/ Accessed: March 2006.
Parkinson's Disease Health Condition Last Updated: March 2006
Note: The above information is intended to supplement, not substitute for, the expertise and judgment of your physician, pharmacist, or other healthcare professional. It is not intended to diagnose a health condition, but it can be used as a guide to help you decide if you should seek professional treatment or to help you learn more about your condition once it has been diagnosed.
Back
Introduction
Thanks to outspoken celebrities such as Muhammad Ali and Michael J. Fox, Parkinson's disease has gained widespread attention in recent years. Both men have Parkinson's disease, and both have focused their efforts and used their celebrity status to raise funds for research and increase awareness about the degenerative nerve condition.
What is it?
Parkinson's disease is a chronic neurological condition named after Dr. James Parkinson, who first identified and described the syndrome in 1817. The disease progresses slowly, affecting a small area of cells in the mid-brain known as the substantia nigra. Degeneration of these cells causes a reduction in the chemical called dopamine, and this reduction results in the signs and symptoms of Parkinson's disease.
Although Parkinson’s disease can occur at any age, it rarely occurs in individuals younger than 30. Rather it often occurs between the ages of 50 and 80 years, with the most common age of first symptoms being 60 years. Typically, risk increases with age. Parkinson’s Disease is not inherited. Early symptoms are generally subtle, occurring gradually. Although Parkinson's disease is a chronic illness, medication and the support of friends and family can help relieve many of the symptoms, enabling affected individuals to maintain a reasonable quality of life. The disease is not fatal.
What causes it?
The cause of Parkinson's disease remains a mystery. The consensus among medical professionals is that it probably results from a combination of genetic and environmental factors. Idiopathic Parkinson's disease is caused by the gradual loss of neurons in the substantia nigra (the region of the brain that controls movement, particularly automatic movements such as arm swinging while walking). When nerve cells in this area become impaired and die, production of a chemical in the brain called dopamine, which aids in transmitting signals, decreases and the result is impaired movement.
Although Parkinson's disease is caused by degeneration limited to the substantia nigra, other degenerative diseases and some medications can produce secondary parkinsonism. Medications that can cause symptoms of Parkinson's disease include antipsychotics (mesoridazine [Serentil], thioridazine [Mellaril], chlorpromazine [Thorazine], perphenazine [Trilafon], fluphenazine [Prolixin], trifluoperazine [Stelazine], haloperidol [Haldol], thiothixene [Navane], risperidone [Risperdal]), antiemetics (prochlorperazine [Compazine]), gastrointestinal antimotility drugs (metoclopramide [Reglan]), and drugs that lower blood pressure such as reserpine (Serpasil). Drug-induced parkinsonism must be ruled out before the diagnosis of Parkinson's disease is made.
Who has it?
It has been estimated that as many as 1.5 million Americans are affected by Parkinson's disease, and about half of these individuals have not been diagnosed with the disease. At this time, it's impossible to predict who will get Parkinson's disease and there is no known prevention.
What are the risk factors?
Currently, it is impossible to predict who will get Parkinson's disease and there is no known method for preventing its occurrence. The disease is believed to affect both men and women almost equally. Currently, age is one of the main risk factors for the disease. Most of those affected do not experience symptoms until after age 50. However, a subset of Parkinson's disease called young-onset Parkinson's disease, affects those under age 40. Two gene mutations have been identified in patients with this type of Parkinson’s Disease. Although the condition is clinically the same, treatment options may differ.
The disease is thought to result from a combination of genetic and environmental factors. Exposure to pesticides and other toxins has been suspected but has not been proven to be a causative factor.
What are the symptoms?
Symptoms of Parkinson's disease appear when the amount of dopamine in the brain is decreased. They often appear gradually, yet with increasing severity. Because the initial symptoms are similar to those of other neurological conditions, diagnosis can be difficult.
Some individuals have few symptoms, whereas others suffer more severe, debilitating symptoms in a short period. Common symptoms include the following:
Resting tremor on one side of the body
Stiffness of limbs (often referred to as rigidity)
Generalized slowing of movements (known as bradykinesia) and gait
Gait or balance problems
Small, overcrowded handwriting (called micrographia)
Lack of arm swing on the affected side of the body
Less frequent blinking and swallowing
Increased dandruff
Increased oily skin
Depression
Anxiety
Decreased facial expression
Episodes of feeling "stuck in place" when initiating a step (called freezing)
Lowered voice volume
Foot dragging on the affected side
Changes in posture
Feeling more tired
Weight loss
How is it treated?
Currently, there is no cure for Parkinson's disease. The goals of treatment are to minimize disability, reduce the possible side effects of drug therapy, and help the patient maintain the highest possible quality of life.
Mild symptoms that don't interfere with daily activities or disrupt work duties may not require medication.
When prescription drugs are needed, they help to manage symptoms, but they can't stop the disease from progressing. Often when a drug no longer effectively controls symptoms, another drug may be added to existing therapy. Optimal management is highly individualized and is best determined by a doctor who specializes in the treatment of Parkinson's disease.
Surgery remains the only option for those patients with severe or fast-progressing Parkinson's disease who have failed all other therapies. In a surgical technique called pallidotomy, an electric probe is used to destroy a small portion of the brain that is overactive and is thought to cause the symptoms of Parkinson's disease.
A thalamotomy is the removal of the thalamus region of the brain. (The thalamus is responsible for involuntary movements; destroying it prevents involuntary movements.) Although this type of surgery is rarely performed, it can be a last resort for patients who have disabling tremors in the hand or arm. However, the procedure does not relieve other symptoms of Parkinson's disease.
Thalamic stimulation is another type of approach in management of Parkinson's disease. In this procedure, an electrode wire is inserted into the thalamus. The other end of the wire is connected to a pulse generator, and the generator is placed under the skin in the chest area.
This device can produce the benefit of thalamotomy without causing wound or scars on the skin and has shown to be very effective in management of tremor in Parkinson's disease.
Deep brain stimulation (DBS) is a new, alternative procedure used to destroy small regions of the brain. A thin electrode implanted into the brain blocks brain waves that can cause uncontrollable movements. This procedure must be continued lifelong. It is especially useful in patients that have severe symptoms associated with tremor, involuntary movements (dyskinesia), and problems with gait.
Helping Yourself
Parkinson's disease can have a huge impact on an individual's daily activities and overall lifestyle. Learning coping strategies, preventing falls, getting proper nutrition, participating in regular movement and exercise, getting proper amounts of sleep, and ensuring adequate hydration can help those suffering from Parkinson's disease maintain a high quality of life.
Coping With Parkinson's Disease
Maintain a positive attitude in both occupational and social situations.
Keep friends and co-workers informed of your status, and to help maintain your independence, accept help only when needed.
Perform tasks on a priority basis to achieve a sense of accomplishment and purpose.
Join local Parkinson's disease organizations and support groups.
Fall Prevention
Avoid carrying objects in both hands while walking, which can disrupt balance.
Avoid standing for long periods with your feet too close together, which can increase your risk of falls.
Lift your feet when walking. Falls may result when you shuffle your feet, and falls can occur as a result of foot drag, which is common among people with Parkinson's disease.
Swing your arms when walking. This helps maintain balance and decreases fatigue.
If your feet feel "frozen to the floor" when you start to walk or move, you can (1) attempt to step over an actual or imaginary obstacle in your path or (2) rock from side to side.
If balancing is difficult, you can learn to use a single-point cane with a large, rubber tip. It takes practice to use a cane comfortably, but once mastered, this skill can make it much easier for you to maintain your balance.
Do not wear rubber-soled shoes because they grip the floor and may cause you to trip.
If rising from a seated position is difficult, place your feet directly under your knees and stand up firmly to overcome the pull of gravity. Rather than using your hands and arms when attempting to stand up, use your thigh muscles. This exercise also helps strengthen the large muscles of the legs, maintaining strength and promoting continued ambulation.
If you tend to feel lightheaded, move slowly when changing positions. When getting out of bed, sit up slowly, remain seated on the side of the bed for 15 to 30 seconds, and then stand in one place for 15 to 30 seconds before walking. This technique can prevent falls.
Do not use throw rugs or wax the floors of your home. Ensure that rooms are well lit, and consider using night-lights in hallways and bathrooms. Keep your home free of clutter to prevent tripping.
In the bathroom, you may need to use grab bars to get into and out of the bathtub. A raised toilet seat with arm rails may also be a necessity.
In the kitchen, you may need to use a long-handled sponge or mop to wipe up spills. Keep supplies that you use often in an easy-to-reach cabinet.
Nutritional Guidelines
Eat small, frequent meals rather than three large meals daily. This helps your body use food properly and makes it easier for you to maintain a healthy weight. Parkinson's disease can slow digestion and affect swallowing. If you have difficulty consuming solid foods, liquid supplements such as Ensure can help provide proper nutrition.
If you have no trouble digesting or swallowing food, eat foods that are high in fiber (vegetables, whole-grain bread, and cereals) and drink plenty of fluids to help prevent constipation and dehydration.
Sleep disturbances are common in individuals with Parkinson's disease. Proper sleep hygiene such as going to bed at the same time every night can be helpful.
Especially for the Caregiver
It is important to set goals that are realistic, and then strive toward them.
Realize that you can't do everything, and recognize when you need help. Available support services may include counseling, a registered nurse, a speech therapist, and a physical therapist.
Be assertive when discussing your concerns with the individual you're caring for or with the healthcare team.
Take time for yourself, including time for rest, relaxation, hobbies, and friends.
Take part in support groups. Talking with others in similar situations may help you realize that you're not alone. Information on support groups can be obtained through the American Parkinson's Disease Association (800.223.2732) and National Parkinson Foundation (800.327.4545).
What is on the horizon?
Molecular science techniques, including gene therapy, stem cell technology, and stimulation of nerve growth factors, are the newest research areas being explored in the treatment of Parkinson's disease.
The National Institute of Neurological Disorders and Stroke is looking to establish effective therapies to slow the progression of Parkinson's disease. Research was conducted to see if Mirapex and Requip slow the progression of Parkinson's disease. The results showed that Requip minimally slowed down the progression of Parkinson's disease when it was compared to levodopa. Patients initially treated with Mirapex also demonstrated a reduction in dopamine neuron degeneration, compared with those initially treated with levodopa, during a 46-month period. More investigations however are needed for a definite conclusion.
Recent studies have also shown that Coenzyme Q10 may be effective in slowing the progression of the Parkinson's disease. This discovery has opened doors for researchers to further investigate the effectiveness of Coenzyme Q10.
References
American Parkinson's Disease association Home Page. http://www.apdaparkinson.org/user/AboutParkinson.asp. Accessed: March 2006.
The National Parkinson Foundation, Inc. Web site. Available at: http://www.parkinson.org/. Accessed: March 2006.
National Institute of Neurological Disorders and Stroke Web site. http://www.ninds.nih.gov/health_and_medical/disorders/parkinsons_disease.htm Accessed: March 2006.
Parkinson's Disease Foundation Web site. Available at: http://www.pdf.org/. Accessed: March 2006.
American Academy of Family Physicians Home Page. Parkinson's Disease. http://www.aafp.org/afp/990415ap/2155.html. Accessed: March 2006.
Aminoff MJ. Parkinson's Disease and Other Extrapyramidal Disorders. In Fauci AS, Braunwald E, Isselbacher, and others, eds. Harrison's Principles of Internal Medicine. 14th ed. New York: McGraw-Hill; 1998: 2356-2363.
Nelson MV, Berchou RC, et al. Parkinson's Disease. Dipiro JT, Albert RL, et al. In: Pharmacotherapy. A Pathophysiologic Approach. 6th ed. Connecticut: Appleton & Lange; 2005: pages 1075-1086.
Hristova AH, Koller C. Early Parkinson's Disease: What is the Best Approach to Treatment? Drugs Aging 2000; 17(3):165-181.
Michael J. Fox Foundation Web site. Available at: http://www.michaeljfox.org/ Accessed: March 2006.
Young R. Update on Parkinson's Disease. American Family Physician Web site. Available at: http://www.aafp.org/afp. Accessed: March 2006.
Brain and Nervous System. In Klag MJ, Lawrence RS, Davis AR, Niparko JK, eds. Johns Hopkins Family Health Book. New York: Harper Collins; 1999.
Olanow CW, Watts RL, Koller WC. Treatment guidelines: an algorithm for the management of Parkinson's disease.Neurology 2001; 56(Suppl 5):S1-S88.
Standaert DG, Young AB. Treatment of Parkinson’s Disease. Goodman and Gilman’s -The Pharmacological Basis of Therapeutics -11th ed. McGraw & Hill; 2006: pages 533-538.
Chen JJ, Shimomura SK. Parkinsonism. Textbook of Therapeutics-Drug and Disease Management-7th ed. Lippincott Williams & Wilkins; 2000: pages 1139-1152.
Ernst ME, Gottwald MD, et al. Parkinson’s Disease. Applied Therapeutics: The Clinical Use of Drugs-8th ed. Lippincott Williams & Wilkins; 2005: pages 53-1 to 53-28.
Parkinson’s Action Network. Available at: http://www.parkinsonaction.org/ Accessed: March 2006.
Parkinson's Disease Health Condition Last Updated: March 2006
Note: The above information is intended to supplement, not substitute for, the expertise and judgment of your physician, pharmacist, or other healthcare professional. It is not intended to diagnose a health condition, but it can be used as a guide to help you decide if you should seek professional treatment or to help you learn more about your condition once it has been diagnosed.
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The role of caregiver of PD patient?
The Caregiver's Role
The role of a caregiver is usually one that a person must take on without any prior warning. It is a major change to anyone's lifestyle.
A caregiver must be on-call twenty-four hours a day. They must always be on their toes. They must be organized, well informed and watchful. They must be very patient, helpful and warm-hearted towards their loved one's changing physical/mental condition. All this is difficult to master.
A caregiver must also have inner strength and determination to carefully balance the new demands that lie ahead.
We hope the information in this section helps define the role of caregiver and sheds light on the importance of this role. It takes a special kind of person to care for an ill or disabled loved one.
The symptoms of Parkinson's disease vary.
It is important that caregivers understand that this disease affects different people in different ways. In other words, the symptoms won't always be the same in all patients.
Since there is such a wide variety of symptoms, caregivers should not jump to any conclusions if Parkinson's disease is suspected. Even if it is diagnosed, they should not expect a "worst!"
The early signs of Parkinson's disease are often subtle.
Some form of a tremor may be the first symptom noticed – but not always. Other early symptoms may include a patient becoming shier, or perhaps showing signs of depression.
A softer voice may be noted with some patients. In other patients, an early symptom might be that handwriting becomes harder to read (smaller or a bit scratchy).
Some patients have even complained of not being able to play golf or tennis as well as usual. They don't realize that this may signal the presence of Parkinson's disease.
Many patients who display the most common symptoms of Parkinson's never experience anything worse.
The most common symptoms of Parkinson's disease are tremor, muscle stiffness, slowness of movement, and/or sexual problems in men. Even with these symptoms being the most common, not all patients experience them.
In cases where these symptoms are present, the disease can be managed successfully for many, many years, especially with the help of prescription drugs. Often, patients taking these drugs may never experience the worst symptoms of Parkinson's.
Caregivers are strongly encouraged to go with the patient when visiting their doctor if Parkinson's disease is suspected.
The caregiver's view is often the most important link in helping the doctor make an accurate diagnosis. That's because some patients may not be able to notice – or may not be willing to admit – the first symptoms. Indeed, many patients may think (sometimes correctly, sometimes incorrectly) the symptoms are part of the aging process.
Also, because symptoms of Parkinson's disease may be hard to notice, it probably makes the most sense to have an evaluation performed by a doctor who routinely works with Parkinson's patients. At the very least, get a second opinion after an initial examination by a family doctor.
The symptoms that are the most difficult to manage usually happen in a small number of patients.
When they do occur, they tend to show up much later in the course of the disease. These more serious symptoms include patients having problems maintaining their balance, periods of extreme confusion or hallucinations, or more severe depression and/or withdrawal.
Caregivers may find it impossible to effectively take care of patients with these serious symptoms. In such cases, some form of professional assistance or nursing home support is generally recommended.
Pharmaceutical drugs have proven to be highly effective in treating Parkinson's disease and newer drugs make this form of treatment even more promising.
Most drugs available for the treatment of Parkinson's disease work to imitate the effect of dopamine in the brain. That is because low dopamine levels in the brain have been linked to Parkinson's disease.
These drugs are made to "trick" the brain into thinking it is receiving dopamine. The brain's need for the chemical is then reduced. These drugs have few side effects – the most common are swelling and increased sexual drive (this could become a problem for the caregiver). If a patient has one or more of these side effects, the physician usually will try another drug.
Surgical options are also available for patients who do not respond well to drug therapy.
There is a broad range of therapy available for this disease, and research and development work continues. Caregivers have every reason to be hopeful and confident that an effective treatment will be available for their patient.
Caregivers need help too.
Providing 24-hour care for a patient suffering from any disease is a major responsibility.
Caregivers must realize that they may feel anger, withdraw or depression from the pressure of such responsibilities.
Caregivers should be on guard and watchful for these symptoms in themselves. It is better to take steps to prevent them than let such symptoms affect their ability to care for the patient.
Caregivers need to make every effort to maintain a well-rounded, balanced schedule of social activities. And by all means, don't be shy about getting additional help in the house to assist with the caregiving.
The most effective caregiver is well informed, prepared and asks for help and support from all resources that are available!
We have provided links to a wide variety of support groups and educational web sites. In addition, your local "County Office of Aging," and even local religious groups, may be excellent sources of information, support and supplies.
Also, be sure that important documents such as a will, living will and emergency plans for children are updated and in place to your satisfaction.
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