Posted: Thu Oct 18, 2007 4:20 pm Post subject: Exercise and Movement
Exercises and Movement I wish to share my experience while I am doing my exercise at Fitness Centre. As Parkinson's patient I found my breathing is too slow to catch up my body movement therefore I feel tired easily than the normal person. Exercise is good for Parkinson's patient however PD patients needs help to practise a skill: relaxation exercise to loosen the muscles and movement. TEOKIMHOE_________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
Monday, December 10, 2007
Parkinson's Specific exercise plan restoring lives
Posted: Sat Dec 08, 2007 10:52 am Post subject: News: Parkinson's-Specific Exercise Plan Restoring Lives
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Parkinson's-Specific Exercise Plan Restoring Lives http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/12-06-2007/0004717951&EDATE= COLUMBUS, Ohio, Dec. 6 /PRNewswire/ -- Since the spring release of his new book and instructional DVD, Delay the Disease - Exercise and Parkinson's Disease, David Zid delights in the positive response from participants whose lives are enhanced thanks to following his daily fitness program. Participants worldwide are thrilled that their Parkinson's symptoms have been minimized. "It might be overly dramatic to say exercise saved my life, but it certainly saved the quality of my life," boasts program participant Kathy Cooper. Zid, an ACE, APG certified trainer, designed the Parkinson's-specific program to exercise all parts of the body, focusing on balance, flexibility, strength and coordination. Nearly two years after being diagnosed, Kathy Cooper began the Delay the Disease exercise program. "I've noticed improvements in the way I walk and maintain my balance," explains Cooper. "I now take bigger steps and no longer seem to shuffle or limp. I smile 'normally' and my relaxed facial expression has improved." Participants are enthusiastic about the practical nature of the routine. Emphasis is placed on activities of daily living that frequently become a challenge to those with Parkinson's, such as rising from a chair, moving about in crowds, and getting in and out of the car. "The program has really helped me stand up from a seated position by using the 'nose over toes' technique," reports program participant Jerry Timmons. According to Zid, the most rewarding stories are the individuals who associate an improved mindset with the Delay the Disease fitness program. Though Cooper attributes multiple physical improvements since beginning the routine, "The biggest change is my mental outlook," she gloats. "My demeanor has improved so much that my overall reaction to this affliction has become almost dismissive. My small voice has been replaced with a stronger one and overall, I feel as good, or better, than my pre-afflicted self." Parkinson's professionals and those affected by the disease are grateful for the simplicity, organization and comprehensiveness of the exercise manual and DVD. The program empowers the patient to participate in their healing and cope with the difficult Parkinson's diagnosis. Marjorie Johnston, a clinical exercise specialist in Naples, Florida, has been conducting Parkinson's fitness classes for over ten years and is responsible for reviewing exercise programs for recommendation to her Parkinson's association. "The Delay the Disease program is the first program that I feel I can enthusiastically recommend to my organization and participants. The exercise inventory is excellent." The National Parkinson's Foundation Center of Excellence at Indiana University recently used a portion of their funding for a bulk purchase of books and DVDs to distribute to their patients to encourage daily exercise. Author David Zid leads a weekly class based on this fitness routine where Parkinson's participants discover fun, fitness and camaraderie. A portion of Delay the Disease proceeds is used to support Parkinson's research and development. The book and DVD are available for purchase at http://www.amazon.com/ or http://www.delaythedisease.com./_________________Best regards, Kathrynne Holden, MS, RD --
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Parkinson's-Specific Exercise Plan Restoring Lives http://www.prnewswire.com/cgi-bin/stories.pl?ACCT=104&STORY=/www/story/12-06-2007/0004717951&EDATE= COLUMBUS, Ohio, Dec. 6 /PRNewswire/ -- Since the spring release of his new book and instructional DVD, Delay the Disease - Exercise and Parkinson's Disease, David Zid delights in the positive response from participants whose lives are enhanced thanks to following his daily fitness program. Participants worldwide are thrilled that their Parkinson's symptoms have been minimized. "It might be overly dramatic to say exercise saved my life, but it certainly saved the quality of my life," boasts program participant Kathy Cooper. Zid, an ACE, APG certified trainer, designed the Parkinson's-specific program to exercise all parts of the body, focusing on balance, flexibility, strength and coordination. Nearly two years after being diagnosed, Kathy Cooper began the Delay the Disease exercise program. "I've noticed improvements in the way I walk and maintain my balance," explains Cooper. "I now take bigger steps and no longer seem to shuffle or limp. I smile 'normally' and my relaxed facial expression has improved." Participants are enthusiastic about the practical nature of the routine. Emphasis is placed on activities of daily living that frequently become a challenge to those with Parkinson's, such as rising from a chair, moving about in crowds, and getting in and out of the car. "The program has really helped me stand up from a seated position by using the 'nose over toes' technique," reports program participant Jerry Timmons. According to Zid, the most rewarding stories are the individuals who associate an improved mindset with the Delay the Disease fitness program. Though Cooper attributes multiple physical improvements since beginning the routine, "The biggest change is my mental outlook," she gloats. "My demeanor has improved so much that my overall reaction to this affliction has become almost dismissive. My small voice has been replaced with a stronger one and overall, I feel as good, or better, than my pre-afflicted self." Parkinson's professionals and those affected by the disease are grateful for the simplicity, organization and comprehensiveness of the exercise manual and DVD. The program empowers the patient to participate in their healing and cope with the difficult Parkinson's diagnosis. Marjorie Johnston, a clinical exercise specialist in Naples, Florida, has been conducting Parkinson's fitness classes for over ten years and is responsible for reviewing exercise programs for recommendation to her Parkinson's association. "The Delay the Disease program is the first program that I feel I can enthusiastically recommend to my organization and participants. The exercise inventory is excellent." The National Parkinson's Foundation Center of Excellence at Indiana University recently used a portion of their funding for a bulk purchase of books and DVDs to distribute to their patients to encourage daily exercise. Author David Zid leads a weekly class based on this fitness routine where Parkinson's participants discover fun, fitness and camaraderie. A portion of Delay the Disease proceeds is used to support Parkinson's research and development. The book and DVD are available for purchase at http://www.amazon.com/ or http://www.delaythedisease.com./_________________Best regards, Kathrynne Holden, MS, RD --
Constipation
Posted: Sat Dec 08, 2007 4:02 pm Post subject:
Constipation is generally intrinsic to PD rather than a side effect of medications. Of all PD meds, perhaps only anticholinergic drugs (such as artane) or maybe amantadine can worsen constipation. The others don't really cause it. We now realize that PD is a systemic illness that affects other parts of the body and not just the brain--the eyes, bladder, bowels, muscles, etc. There are dopamine containing cells in the bowels as well. I am attaching the constipation formula that we give our patients in case you are interested.... I. Definition Constipation is an alteration in stool frequency, consistency, and/or passage of stool. The normal pattern of bowel movements can and will vary by 1 to 3 days. A stool-voiding pattern of every day or every other day is encouraged. II. Causes A. Change in diet or activity B. Medical reasons: cancer, pregnancy, hemorrhoids, neurological disorder, muscular disorders, intestinal inflammation C. Medications: narcotics, sedatives, antacids, antispasmodics, iron supplements III. Treatment Management A. Fluids - Drink at least 6 to 8 – 8 ounce glasses of fluids per day. This is all inclusive (everything you drink like water, tea, coffee, juice, colas, etc.), but water is best, and we encourage you to drink primarily water. Bladder patients should reduce fluid intake after the evening meal. B. Activity - Exercise and increased activity will assist in establishing regular bowel patterns. C. Diet - Include fiber-rich foods: bran, whole-grain breads – oat, rye, fruits, vegetables (leave peel on), whole-grain cereals, oatmeal, pasta, nuts, popcorn, and brown rice. Daily recommended fiber intake: 20 – 30 grams Natural Recipe Miller’s (unprocessed wheat) Bran* 1 cup Applesauce ½ cup Prune Juice ¼ cup Mix these ingredients together and refrigerate. Replace the mixture each week. Take 1 – 2 Tablespoons daily for one week for desired results. If needed, you may increase dose by 1 Tablespoon each week. Stool frequency and gas may increase the first few weeks but will usually adjust after one month. *Miller’s Bran is unprocessed wheat bran. This can be purchased at most large grocery stores (Cub Foods, Kroger, Ingles, etc.) and is sold with either the hot cereals or flours and baking goods. The most commonly found brand name is Hodgson Mill and comes in a brown 14 oz. box. Miller’s Bran can also be purchased in bulk at health food stores. You can also sprinkle bran on food to supplement your fiber intake. D. Bowel Clean Out The bowel clean out should be done before starting on the bowel program that is outlined for you by your physician. This should be done on a day when you will be at home all day to minimize the risk of accidentally soiling your clothes. The bowel clean out is a two-part procedure. In the morning take 2 oz. Milk of Magnesia and follow that with a hot drink. This could be hot coffee, hot tea, or even hot broth. This helps to stimulate the bowel and enhance the effects of the Milk of Magnesia. That evening, after dinner, give yourself a Fleets enema. This helps to make sure the rectum is empty. You should be able to rest through the night without worry or discomfort. This procedure can be repeated the next day if needed. E. Medications 1. Bulk producing: Metamucil, Fibercom, or Citrucel. Mix 1 -2 Tablespoons in juice or water and take by mouth 1 to 2 times daily. - Adds consistency or bulk to the stool and facilitates water retention in stool. - Must take adequate fluids by mouth to avoid causing constipation. 2. Stool Softeners: Colace. Soften stool by facilitating the admixture of fat and water (detergent activity). Do not use with mineral oil. Take 1 tablet by mouth 1 to 2 times daily. 3. Combinations: Pericolace. Mild stool softener and laxative combined. Take 1 by mouth 1 to 2 times daily. 4. Irritant/Stimulant: Products containing Senna. Laxative with direct action on the intestinal mucosa and the nervous plexus of the bowel. 5. Suppositories: Glycerin, Dulcolax. Inserted rectally every other day or when needed. Stimulates rectum and assists with evacuation. I hope this helps! Yours,_________________Hubert H. Fernandez
Constipation is generally intrinsic to PD rather than a side effect of medications. Of all PD meds, perhaps only anticholinergic drugs (such as artane) or maybe amantadine can worsen constipation. The others don't really cause it. We now realize that PD is a systemic illness that affects other parts of the body and not just the brain--the eyes, bladder, bowels, muscles, etc. There are dopamine containing cells in the bowels as well. I am attaching the constipation formula that we give our patients in case you are interested.... I. Definition Constipation is an alteration in stool frequency, consistency, and/or passage of stool. The normal pattern of bowel movements can and will vary by 1 to 3 days. A stool-voiding pattern of every day or every other day is encouraged. II. Causes A. Change in diet or activity B. Medical reasons: cancer, pregnancy, hemorrhoids, neurological disorder, muscular disorders, intestinal inflammation C. Medications: narcotics, sedatives, antacids, antispasmodics, iron supplements III. Treatment Management A. Fluids - Drink at least 6 to 8 – 8 ounce glasses of fluids per day. This is all inclusive (everything you drink like water, tea, coffee, juice, colas, etc.), but water is best, and we encourage you to drink primarily water. Bladder patients should reduce fluid intake after the evening meal. B. Activity - Exercise and increased activity will assist in establishing regular bowel patterns. C. Diet - Include fiber-rich foods: bran, whole-grain breads – oat, rye, fruits, vegetables (leave peel on), whole-grain cereals, oatmeal, pasta, nuts, popcorn, and brown rice. Daily recommended fiber intake: 20 – 30 grams Natural Recipe Miller’s (unprocessed wheat) Bran* 1 cup Applesauce ½ cup Prune Juice ¼ cup Mix these ingredients together and refrigerate. Replace the mixture each week. Take 1 – 2 Tablespoons daily for one week for desired results. If needed, you may increase dose by 1 Tablespoon each week. Stool frequency and gas may increase the first few weeks but will usually adjust after one month. *Miller’s Bran is unprocessed wheat bran. This can be purchased at most large grocery stores (Cub Foods, Kroger, Ingles, etc.) and is sold with either the hot cereals or flours and baking goods. The most commonly found brand name is Hodgson Mill and comes in a brown 14 oz. box. Miller’s Bran can also be purchased in bulk at health food stores. You can also sprinkle bran on food to supplement your fiber intake. D. Bowel Clean Out The bowel clean out should be done before starting on the bowel program that is outlined for you by your physician. This should be done on a day when you will be at home all day to minimize the risk of accidentally soiling your clothes. The bowel clean out is a two-part procedure. In the morning take 2 oz. Milk of Magnesia and follow that with a hot drink. This could be hot coffee, hot tea, or even hot broth. This helps to stimulate the bowel and enhance the effects of the Milk of Magnesia. That evening, after dinner, give yourself a Fleets enema. This helps to make sure the rectum is empty. You should be able to rest through the night without worry or discomfort. This procedure can be repeated the next day if needed. E. Medications 1. Bulk producing: Metamucil, Fibercom, or Citrucel. Mix 1 -2 Tablespoons in juice or water and take by mouth 1 to 2 times daily. - Adds consistency or bulk to the stool and facilitates water retention in stool. - Must take adequate fluids by mouth to avoid causing constipation. 2. Stool Softeners: Colace. Soften stool by facilitating the admixture of fat and water (detergent activity). Do not use with mineral oil. Take 1 tablet by mouth 1 to 2 times daily. 3. Combinations: Pericolace. Mild stool softener and laxative combined. Take 1 by mouth 1 to 2 times daily. 4. Irritant/Stimulant: Products containing Senna. Laxative with direct action on the intestinal mucosa and the nervous plexus of the bowel. 5. Suppositories: Glycerin, Dulcolax. Inserted rectally every other day or when needed. Stimulates rectum and assists with evacuation. I hope this helps! Yours,_________________Hubert H. Fernandez
Wednesday, December 5, 2007
S'poreans live longer but suffer 8 years of poor health Health ministry study shows main causes of sickness are diseases that can be prevented early on. -->
Salma Khalik
Wed, Dec 05, 2007The Straits
(Dec 5) IF YOU needed another reason to lead a healthy lifestyle, here it is: A study shows that Singaporeans may be living longer now, but they are also sick for more years than people in some other countries.
The main culprits are heart disease and stroke, cancer, diabetes and even mental illness.
Now, the average Singapore woman should live to 81.8, but she will spend eight of those years ill or disabled. Men too will spend eight of their 78 years in poor health.
So while Singapore does well on life expectancy charts, a different picture emerges when good health is tracked.
The Ministry of Health study confirmed that a lot of suffering and premature deaths come from diseases that could be prevented - such as heart attacks, stroke and diabetes. Some cancers too could be caught early.
The prevalence of such diseases also suggests that more should be done to tell people what they can do to save themselves from becoming ill, said Dr Lam Pin Min, a member of the Government Parliamentary Committee for Health.
He called for more public education on how these ailments can be prevented, and screening to catch problems like diabetes and cancer early.
He added: 'With early detection of diseases, prompt medical treatment can hopefully minimise illness and medical complications.'
But health authorities can only do so much, argued unionist and Health GPC head Madam Halimah Yacob. People must take ownership of their health if they want to keep such illnesses at bay.
Her advice: 'Go for regular screening, eat more vegetables, less salt and do more exercise. That could cut the number of years you suffer from ill health.'
Dr Derrick Heng, deputy director of the Ministry of Health's non-communicable diseases branch said the study will guide the authorities on how to spend health resources.
But though it 'shines the torch' on diseases that cause the most suffering, the ministry will have to see which actually benefit from preventive measures.
The study will be repeated every three years, to track if the main causes of disability change, or are reduced, as the ministry puts in more effort to tackle them.
A surprising finding was how mental disorders count as much as diabetes and stroke for the wasted years. Mental health is getting a boost as the ministry has committed $80 million over the next five years to improving it.
Zooming in on problem areas could help Singapore catch up with countries that fare best - such as Japan, the top country in the world for long, healthy lives.
Japanese women live an average of 77.7 years in good health, compared to only 71.3 years for women here. Japanese men have 72.3 years of good health, compared to 68.8 years for Singapore men.
The ministry has already made the treatment and prevention of chronic disease a priority. People can now use money previously reserved for hospitalisation to treat diabetes, high cholesterol, high blood pressure and stroke.
The intention is to treat those conditions early before complications set in.
Unfortunately the programme has not been popular, said Madam Halimah. She suggested expanding the use of Medisave money to include an annual health check.
Men should also take a leaf from their wives.
Women all over the world live longer and healthier lives. The World Health Organisation (WHO) attributes it to their smoking less, exercising more and being more health conscious than men. As for Japan, its explanation is the low rate of cardiovascular diseases comes from their high-in-fish diets.
Madam Halimah said: 'We should also start eating more fish and less meat.'
salma@sph.com.sg
Salma Khalik
Wed, Dec 05, 2007The Straits
(Dec 5) IF YOU needed another reason to lead a healthy lifestyle, here it is: A study shows that Singaporeans may be living longer now, but they are also sick for more years than people in some other countries.
The main culprits are heart disease and stroke, cancer, diabetes and even mental illness.
Now, the average Singapore woman should live to 81.8, but she will spend eight of those years ill or disabled. Men too will spend eight of their 78 years in poor health.
So while Singapore does well on life expectancy charts, a different picture emerges when good health is tracked.
The Ministry of Health study confirmed that a lot of suffering and premature deaths come from diseases that could be prevented - such as heart attacks, stroke and diabetes. Some cancers too could be caught early.
The prevalence of such diseases also suggests that more should be done to tell people what they can do to save themselves from becoming ill, said Dr Lam Pin Min, a member of the Government Parliamentary Committee for Health.
He called for more public education on how these ailments can be prevented, and screening to catch problems like diabetes and cancer early.
He added: 'With early detection of diseases, prompt medical treatment can hopefully minimise illness and medical complications.'
But health authorities can only do so much, argued unionist and Health GPC head Madam Halimah Yacob. People must take ownership of their health if they want to keep such illnesses at bay.
Her advice: 'Go for regular screening, eat more vegetables, less salt and do more exercise. That could cut the number of years you suffer from ill health.'
Dr Derrick Heng, deputy director of the Ministry of Health's non-communicable diseases branch said the study will guide the authorities on how to spend health resources.
But though it 'shines the torch' on diseases that cause the most suffering, the ministry will have to see which actually benefit from preventive measures.
The study will be repeated every three years, to track if the main causes of disability change, or are reduced, as the ministry puts in more effort to tackle them.
A surprising finding was how mental disorders count as much as diabetes and stroke for the wasted years. Mental health is getting a boost as the ministry has committed $80 million over the next five years to improving it.
Zooming in on problem areas could help Singapore catch up with countries that fare best - such as Japan, the top country in the world for long, healthy lives.
Japanese women live an average of 77.7 years in good health, compared to only 71.3 years for women here. Japanese men have 72.3 years of good health, compared to 68.8 years for Singapore men.
The ministry has already made the treatment and prevention of chronic disease a priority. People can now use money previously reserved for hospitalisation to treat diabetes, high cholesterol, high blood pressure and stroke.
The intention is to treat those conditions early before complications set in.
Unfortunately the programme has not been popular, said Madam Halimah. She suggested expanding the use of Medisave money to include an annual health check.
Men should also take a leaf from their wives.
Women all over the world live longer and healthier lives. The World Health Organisation (WHO) attributes it to their smoking less, exercising more and being more health conscious than men. As for Japan, its explanation is the low rate of cardiovascular diseases comes from their high-in-fish diets.
Madam Halimah said: 'We should also start eating more fish and less meat.'
salma@sph.com.sg
Tuesday, December 4, 2007
My dad has PD, I can't handle his decline
Posted: Mon Nov 26, 2007 10:25 pm Post subject: My dad has PD, I can't handle his decline.
I'm too prideful to seek formal counseling, I think. Maybe. I don't know. Amongst my friends, the people my age, I have older parents. I am only 21, but my parents are both in their 60s. That's not THAT old, but it means hings like Parkinsons affect me sooner. That, coupled with the fact that he was early onset, this is all happening way before it could for anyone else whom I would normally go to for support. As far back as I can remember, "Parkinsons Disease" was just something that my dad had. It happened so slowly, I didn't see it's effects. It's been around my whole life. I... I don't know how I am supposed to deal with this. Since I was 17, I've been a member of some teen support forums, and they can't help me. They are too "young" so to speak. All I get is that, "I don't know how that must feel, but you have my sympathies." I'm falling apart. I can't watch him fall. I can't watch at all.
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ahimsajackJoined: 25 Apr 2007Posts: 472Location: New York state
Posted: Tue Nov 27, 2007 11:21 am Post subject:
Khadgar, I empathize with you. PD is certainly a disease that robs us of our dignity if we let it. You will probably feel better if you focus on how your parents feel and how they are handling this. Yes, they and you are young, but your situation is not unusual. Try to put your heart and mind on them, and provide whatever love and support you are capable of. I find that I feel the worst when I worry about me, and I feel the best when I put my mind on others. It works!! Jack_________________We are what we think, with our thoughts we make our world.
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John ShJoined: 05 Mar 2007Posts: 101Location: Arroyo Grande, California
Posted: Tue Nov 27, 2007 6:40 pm Post subject: Khadgar
My opinion. Talk to your dad if you can, and also, start seeing someone, let go of the pride thing, you might as well join the rest of the human race, I am 67 and I see a therapist that is probably 45, it's comforting. It's a woman by the way. My heart goes out to you, but I know you need more then that. John
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zmunnJoined: 02 Mar 2007Posts: 60
Posted: Tue Nov 27, 2007 9:21 pm Post subject:
Khadgar, Well, I'm 54 and my PWP mom is 77 and it's not at all easy for me either, so it's not just your age. It just IS hard to see a loved one decline. One of my brothers copes by staying away, the other by calling regularly to tell my mom silly but entertaining stories about his cat. I have coped by moving my mom to a nursing home in my own town so I can see her daily and oversee her care. You'll find a way, but you'll be more helpful to your dad if you can get yourself in better shape. For most of us that means counseling from someone outside your family and friendship group. I hope you will consider that. There's no real benefit to your dad or yourself in your falling apart. My best to you, Zae
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Wed Nov 28, 2007 3:17 am Post subject: Re: My dad has PD, I can't handle his decline.
Have you looked around for Parkinson's support groups - not necessarily a group for folks your age, but for family members of PWP's. Depending on where you live, there are quite probably some excellent resources to lean on. My PWP and I learned that support groups of your peers - others who have walked in the shoes that you are just now learning to wear - was a life-saver. Our son was diagnosed with a serious mental illness when he was 19, and this sort of thing can easily tear a marriage apart. We found a group of people who had family members with equally debilitating mental diseases, and through those people we learned how to cope. We were given survival techniques, and lots of encouragement. There are all sorts of lists on the PD websites, and my recommendation is to hunt up a support group. Attend a meeting or two - if you don't feel 'right' with one, try another. As you've found out, PD isn't something that you can deal with alone - and the more help you can get from caring, understanding folks, the better you'll be able to manage AND to help your Mom. Best wishes - Sharon 56 CG to 65 PWP
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KhadgarJoined: 26 Nov 2007Posts: 2
Posted: Wed Nov 28, 2007 12:09 pm Post subject: Re: My dad has PD, I can't handle his decline.
MamaGull wrote:
Attend a meeting or two - if you don't feel 'right' with one, try another.I had attended a support group for caregivers that was local to my area, and everyone there was like, 20 years older than me. It was a downer. But, like zmunn said, maybe it's not my age. It feels like it is most of the time. Well, not the sole cause, but a catalyst. I don't know. My family dynamic is not that of open discussion. My dad is really stubborn, and it's taking forever to work him down from being so. I mean, I know that's normal. He doesn't want to give up his independence, I got that. It just seems that whenever I try to bring something like this up, this aura of doom fills the room and I am compelled to shut up. Difficult conversations -- are difficult. The more I think about it, the more I think it is not really pride. The thoughts are: If I go to a support group or a therapist, that is telling my dad, "You are causing enough stress in my life that I am going crazy and need professional help." He blames himself for everything, I'm almost positive he'd find a way to feel bad about that. Argh! I don't know. ...Thanks everyone.
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Fri Nov 30, 2007 3:35 am Post subject: Re: My dad has PD, I can't handle his decline.
Reading your last post, I thought I'd take a different approach. How about I float a few ideas past you? (point of reference, I'm 56, husband is 65 and was diagnosed 3 years ago; our son is 29) Do you feel the need to seek counselling, or to attend support meetings to help YOU, or to help you communicate better with your father? Do you and he communicate well about things other than PD - your school, activities, things he likes? I'm no help about communicating with dads that can't open up, mine is the same way, and after too many years I've quit trying. But I have learned a few things from him.... I haven't met very many guys that don't have a stubborn streak somewhere, some are just a whole lot more obvious about it. The more stubborn, the harder it is for these guys to open up (or so I've found), and there is too frequently a pointed avoidance of seeking medical attention, no matter how serious the situation. Sometimes stereotyping happens because we've seen the same behavior repeated by the same group of people over time - nothing judgemental, just making the observation. That said; it is VERY difficult for any man to be told that 'the life you expected to live ends today; you now have a degenerative neurological disease that will, over an undetermined period of time, rob you of your dreams'. Any research into PD makes that even worse - learning that at some time in the future things you take for granted may turn into daily struggles - swallowing is the one my husband finally admits that he fears. We know of the most common - walking is the big one, talking is a problem as well. There are many more. Talking about PD is twice as hard as anything else; if you talk about it, that implies that you have accepted it (and all of the implications as well) in your own mind. There seems to be way too little gray territory - too many people live in black or white. "I've got PD, I'm going to end up in a wheelchair with a feeding tube and a catheter, unable to communicate because my voice will be gone, for all intents and purposes a vegetable." You and I know there is at most a grain of truth in some of this, but the picture will be far less bleak than the imagination... It has taken me a while to sort out the approach to discussing PD with my husband - I don't ask him pointed questions about it. He knows that I'm involved with an online support group for PD caregivers, and I found that if I just talk about some of the things that others are running into, he starts to open up to me. The other time that he opens up is when we are driving - fewer distractions and nobody else can overhear our conversation. Let me know what you think, okay?
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I'm too prideful to seek formal counseling, I think. Maybe. I don't know. Amongst my friends, the people my age, I have older parents. I am only 21, but my parents are both in their 60s. That's not THAT old, but it means hings like Parkinsons affect me sooner. That, coupled with the fact that he was early onset, this is all happening way before it could for anyone else whom I would normally go to for support. As far back as I can remember, "Parkinsons Disease" was just something that my dad had. It happened so slowly, I didn't see it's effects. It's been around my whole life. I... I don't know how I am supposed to deal with this. Since I was 17, I've been a member of some teen support forums, and they can't help me. They are too "young" so to speak. All I get is that, "I don't know how that must feel, but you have my sympathies." I'm falling apart. I can't watch him fall. I can't watch at all.
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ahimsajackJoined: 25 Apr 2007Posts: 472Location: New York state
Posted: Tue Nov 27, 2007 11:21 am Post subject:
Khadgar, I empathize with you. PD is certainly a disease that robs us of our dignity if we let it. You will probably feel better if you focus on how your parents feel and how they are handling this. Yes, they and you are young, but your situation is not unusual. Try to put your heart and mind on them, and provide whatever love and support you are capable of. I find that I feel the worst when I worry about me, and I feel the best when I put my mind on others. It works!! Jack_________________We are what we think, with our thoughts we make our world.
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John ShJoined: 05 Mar 2007Posts: 101Location: Arroyo Grande, California
Posted: Tue Nov 27, 2007 6:40 pm Post subject: Khadgar
My opinion. Talk to your dad if you can, and also, start seeing someone, let go of the pride thing, you might as well join the rest of the human race, I am 67 and I see a therapist that is probably 45, it's comforting. It's a woman by the way. My heart goes out to you, but I know you need more then that. John
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zmunnJoined: 02 Mar 2007Posts: 60
Posted: Tue Nov 27, 2007 9:21 pm Post subject:
Khadgar, Well, I'm 54 and my PWP mom is 77 and it's not at all easy for me either, so it's not just your age. It just IS hard to see a loved one decline. One of my brothers copes by staying away, the other by calling regularly to tell my mom silly but entertaining stories about his cat. I have coped by moving my mom to a nursing home in my own town so I can see her daily and oversee her care. You'll find a way, but you'll be more helpful to your dad if you can get yourself in better shape. For most of us that means counseling from someone outside your family and friendship group. I hope you will consider that. There's no real benefit to your dad or yourself in your falling apart. My best to you, Zae
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Wed Nov 28, 2007 3:17 am Post subject: Re: My dad has PD, I can't handle his decline.
Have you looked around for Parkinson's support groups - not necessarily a group for folks your age, but for family members of PWP's. Depending on where you live, there are quite probably some excellent resources to lean on. My PWP and I learned that support groups of your peers - others who have walked in the shoes that you are just now learning to wear - was a life-saver. Our son was diagnosed with a serious mental illness when he was 19, and this sort of thing can easily tear a marriage apart. We found a group of people who had family members with equally debilitating mental diseases, and through those people we learned how to cope. We were given survival techniques, and lots of encouragement. There are all sorts of lists on the PD websites, and my recommendation is to hunt up a support group. Attend a meeting or two - if you don't feel 'right' with one, try another. As you've found out, PD isn't something that you can deal with alone - and the more help you can get from caring, understanding folks, the better you'll be able to manage AND to help your Mom. Best wishes - Sharon 56 CG to 65 PWP
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KhadgarJoined: 26 Nov 2007Posts: 2
Posted: Wed Nov 28, 2007 12:09 pm Post subject: Re: My dad has PD, I can't handle his decline.
MamaGull wrote:
Attend a meeting or two - if you don't feel 'right' with one, try another.I had attended a support group for caregivers that was local to my area, and everyone there was like, 20 years older than me. It was a downer. But, like zmunn said, maybe it's not my age. It feels like it is most of the time. Well, not the sole cause, but a catalyst. I don't know. My family dynamic is not that of open discussion. My dad is really stubborn, and it's taking forever to work him down from being so. I mean, I know that's normal. He doesn't want to give up his independence, I got that. It just seems that whenever I try to bring something like this up, this aura of doom fills the room and I am compelled to shut up. Difficult conversations -- are difficult. The more I think about it, the more I think it is not really pride. The thoughts are: If I go to a support group or a therapist, that is telling my dad, "You are causing enough stress in my life that I am going crazy and need professional help." He blames himself for everything, I'm almost positive he'd find a way to feel bad about that. Argh! I don't know. ...Thanks everyone.
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MamaGullJoined: 16 Mar 2007Posts: 21Location: Washington state
Posted: Fri Nov 30, 2007 3:35 am Post subject: Re: My dad has PD, I can't handle his decline.
Reading your last post, I thought I'd take a different approach. How about I float a few ideas past you? (point of reference, I'm 56, husband is 65 and was diagnosed 3 years ago; our son is 29) Do you feel the need to seek counselling, or to attend support meetings to help YOU, or to help you communicate better with your father? Do you and he communicate well about things other than PD - your school, activities, things he likes? I'm no help about communicating with dads that can't open up, mine is the same way, and after too many years I've quit trying. But I have learned a few things from him.... I haven't met very many guys that don't have a stubborn streak somewhere, some are just a whole lot more obvious about it. The more stubborn, the harder it is for these guys to open up (or so I've found), and there is too frequently a pointed avoidance of seeking medical attention, no matter how serious the situation. Sometimes stereotyping happens because we've seen the same behavior repeated by the same group of people over time - nothing judgemental, just making the observation. That said; it is VERY difficult for any man to be told that 'the life you expected to live ends today; you now have a degenerative neurological disease that will, over an undetermined period of time, rob you of your dreams'. Any research into PD makes that even worse - learning that at some time in the future things you take for granted may turn into daily struggles - swallowing is the one my husband finally admits that he fears. We know of the most common - walking is the big one, talking is a problem as well. There are many more. Talking about PD is twice as hard as anything else; if you talk about it, that implies that you have accepted it (and all of the implications as well) in your own mind. There seems to be way too little gray territory - too many people live in black or white. "I've got PD, I'm going to end up in a wheelchair with a feeding tube and a catheter, unable to communicate because my voice will be gone, for all intents and purposes a vegetable." You and I know there is at most a grain of truth in some of this, but the picture will be far less bleak than the imagination... It has taken me a while to sort out the approach to discussing PD with my husband - I don't ask him pointed questions about it. He knows that I'm involved with an online support group for PD caregivers, and I found that if I just talk about some of the things that others are running into, he starts to open up to me. The other time that he opens up is when we are driving - fewer distractions and nobody else can overhear our conversation. Let me know what you think, okay?
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Parkinson's is not the end
Posted: Sun Nov 18, 2007 11:20 pm Post subject: Read This. Parkinson's is Not The End
A Good Evening to you all. For those that do not know me, I have Progressive Supranuclear Palsy. It is under the "Parkinsons Plus" umbrella. It progresses much quicker than Parkinsons and is normally terminal. It is what killed the Actor Dudley Moore. I probably have 6 months before I cannot type anymore. I am legally blind now and have all but lost my voice. I have retrocollis dystonia and fall backwards. I have eye, shoulder and neck surgery coming up. I am 49 years old. Here is my message, then a true life story of one night with this disease. My message is don't give up on one another. See one another all the way through. Have hope and know brighter days are here if you want them to be. Choose brighter days and live your life well. Don't let Parkinsons define you. Now the Story: Last night, I awoke, thinking I heard sounds coming from our living room. I heard a voice calling out "Mom". I tried to move but could not. Then tried to reach to alert Tammy, but my arms would not move. I could not speak. The sounds were still there, footsteps, shuffling around type noises. I remember yelling, though knowing that no sound was coming from me. Finally, I was able to move my legs over the side of the bed and fall to the floor. I could not stand, so crawled from the bedroom to the living room. I sat up against the wall and took a good look around. Nobody was there. I felt someone run fingers through my hair. Thinking it was Tammy, I tried to look up, but my eyes would not open (eyelid apraxia) right away. When finally my eyes opened, there was no one there. Something told me to check my blood-sugar. I crawled to the cabinet, pulled myself up and retrieved my tester. I have been diabetic for about 4 years. Never overweight, always ate smartly, it came from nowhere. The meter indicated "49", almost coma stage for me. I checked it again, and the result was the same. I felt I could walk and started toward the refrigerator. I was wrong and fell backwards hitting the floor hard. I was dazed but still conscious. I heard someone scream behind me, but something told me it was not real. I was thinking "this is it". I crawled to the refrigerator without bieng able to see. I could not reach the orange juice, but felt a can and opened it...it was Coke. I drank it and was able to feel a bannana and ate it. Within 20 minutes, I felt much better. Diabetes and PSP almost killed me. I cannot tell you how good it feels to still be here.
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wheelersceJoined: 02 Mar 2007Posts: 222Location: MI
Posted: Mon Nov 19, 2007 7:41 am Post subject:
Richard, We're glad you're still here, too! Your heart-rending story puts things in perspective and I am speechless before the faith-filled attitude that squeezes through your posts! You're on my prayer list. Sue W.
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 8:03 am Post subject:
Thank you Sue. I am rich, in the sense I have deep love from family and laughter is an everyday occurrence around here! Of course, above all, is the peace I have from God. No regrets. I pray the same for you this morning and wish you all the best in this upcoming Holiday Season.
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walkingbyfaithJoined: 06 Mar 2007Posts: 14
Posted: Mon Nov 19, 2007 10:13 am Post subject:
Richard, What an inspiring post. Your attitude is what I want for myself and my PWP. God Bless!_________________Walking By Faith
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 10:41 am Post subject:
Thank you Walking By Faith! Your Post Title says it all. Thank you for the Blessing, know that it is returned. Here is wishing the best for you and family during this upcoming Holiday Season.
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kmcclungJoined: 05 Mar 2007Posts: 41Location: Michigan
Posted: Mon Nov 19, 2007 11:46 am Post subject:
Richard, The truth is much more interesting than fiction. Thank you for sharing a very personal and profound part of your life with us. Ken
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 12:46 pm Post subject:
You are welcome Ken. I would like to hear some of the stories all of you have with your trials in Parkinsons. It gives me hope to see others overcome, knowing what they have been through.
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Mon Nov 19, 2007 1:59 pm Post subject:
Good afternooon, Rich. I'll share one with you (in two parts) but for myself, prefer not belaboring it in a play by play for the simply curious, morbid onlookers. Having lived the sequence hours ago and knowing I'll be doing so again shortly and forever isn't my cup of tea. "On" time is too valuable for that but not too valuable to answer your request. So many of us have these same little 'moves' like you mention. We're obliged to invent & master them to accomplish things we never gave a thought to in our earlier lives and/or stages. When I awaken after a three hour sleep segment I'm essentially paralyzed and on my good side facing like a little partial wall of knotty pine. This is the exact position I fell asleep in the 180 minutes +/- earlier. My eyesballs move but lack sufficient moisture so feel like sandy or scratchy as I consult my clock radio which is 'on' and nearby, tuned to rebroadcast the previous days NPR or CNN programming. I've drooled a good amount so the pillow case is soaked around my mouth. My left arm hurts and can't be moved, used, braced with....nothing at all without shooting pain. In other words it can not be flexed or muscle used. I have an apparent need to urinate but not urgent....enough to know I can't just lie there. Turing over and flopping with the help of gravity just as you describe requires me to either turn over in the bed rolling myself face down in the pillow or the other direction...face up towards the ceiling. Rolling face down is the harder and riskier because at mid operation with me face down into the pillow which has a waterproof liner under pillowcase I can become completely stuck which is sufficating and can last several minutes. Recall I have neck problems when unmediacted. So I usually go the other way: face to ceiling. To do this I swing one leg out over the edge of the bed behind me and stretch it way far out, elevated. This would be my left leg. This produces a cantilevering effect which after half a dozen tries enables me to wrench and slide/scoot my torso around and eventally drop down so that both knees are now resting on the floor, my torso, chest on mattress is across the bed. I suspect you know excatly what I'm talking about here. Time elapsed since opeinng my eyes? eight or ten minutes if I've worked diligently. With but one arm and hand that will move by muscle exertion, peeling a banana is out of the question. Indeed gravity unassisted motion being impossible or nearly so, tasks requiring fingers are not really possible at this point. I guess I could take a pill at this point...I keep several stashed at key places around my bed and living spaces for emergencies. I don't start dosing immediately. To be continued in a second installment. best wishes from Roger
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 5:30 pm Post subject:
Richard and Roger I am lost for words. when i feel at a low ebb, I shall read these postings again to give me a reality shake. What Inspiration!!!!!!!!!!!!!!!!! I doff my hat to such fantastic resolve. poker
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 5:47 pm Post subject:
Roger, we both are in a bad way...physically. Your mind is still very sharp, even if you feel you have lost some. You write as well or better than any person of author that I am familiar with. You should write a book on this disease with your perspective. No joking here, you have what it takes! Has your home been modified to help? What assistance do you have? Hopefully, you are not one of those independent stubborn types who won't accept help. With your symptoms and struggle, it will not be long before you have to change some things. What do the Docs say about your curling? I ate the bannana with peel (left a lingering aftertaste):) Richard
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granniDJoined: 21 Oct 2007Posts: 38Location: Calgary Alberta Canada
Posted: Mon Nov 19, 2007 6:02 pm Post subject:
Richard, MY God man you are brave and so in touch with the "real things" in life. I can't tell u how much I connect with your words and feel ashamed of myself for whining and being a sissy. Thanks from the bottom of my heart. I wish your strength and courage and all the love of everyone that knows you will continue to carry you on through the rest of your journey. GranniD
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cowboyJoined: 03 Oct 2007Posts: 121
Posted: Mon Nov 19, 2007 6:14 pm Post subject:
Thank you GranniD. I appreciate your encouragement and kindness. I read your posts and have not heard a single whine yet!! You have discussed symptoms of Parkinsons everytime. How are you doing this fair Monday?
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 6:25 pm Post subject:
eh????? cowboy...............why are you answering for richard? confused pokermid
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leonardJoined: 04 Mar 2007Posts: 150
Posted: Mon Nov 19, 2007 10:27 pm Post subject:
Richard...I had a friend who had PSP. It truly is a devastating illness and I have a feeling of whagt you're dealing with...the WAY you're dealing with it is a model we can draw on to deal with what we have. You live your life with great purpose. I am grateful for you sharing that with us. Leonard
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Tue Nov 20, 2007 12:43 am Post subject:
To conclude. It has always been easier for me to rise to a standing position once I've made it to my knees. Off the side of the mattress I can stand up, make use of the urinal with some difficulty and from there decide if I'll be up for a while or try for another sleep segment. I take very few Ambien sleeping tablets so this decision usually turns on if I took one 3 hours earlier and it is providing drowsiness or if there is something I want to do or need to do in which case I start the active part of my day. If the latter I'll start the very slow shuffle to the staircase by basically falling and catching myself by right arm at key points. I have the perfect house for this. A forward step is about 1 to 3 inches. Descending the staircase is ok but I creep into the living room. I never fall but your cautionary advice is well taken. My first morning pill has its most dramatic impact if I avoid food until it takes hold. Generic 25/100 Carbidopa-Levo tabs last about three hours each until 1:00 pm. Then shorter and shorter intervals and an Amantadine at around 3:00 PM to smooth out a little of what otherwise becomes quite bad flailing about. A second Amantadine seems to help nowadays. Azilect is discontinued. From 4 to 8 or 9 pm is MISERY writ llarge. I kinda nibble pills on an as needed basis or descend into alot of pain...and really do in any case. Neck twisting and head to one side, breathing difficulty due to tightness originating in solar plexus area. By later evening I settle down quite a lot. But during that horrible stretch things are not good here. During this period The News Hour With Jim Lehrer comes on PBS. At 6:00 PM on one station and at 7:00 PM on another. Same show. I used to watch it once and get 100%.. Now I watch both shows and get a total of about 75% because my mind wanders so much. Fortunately it wanders to the most pleasant thoughts. Or at least satisfying ones. Never any hallucinations or panic attacks. No forgetfulness. But my ability to maintain concentration during this period is quite simply gone. Mental health is otherwise sound I like to think :-). Not sure what you mean by curling. Only curling I have is sometimes when sinemet kicks in and my toes curl. I think most people have this when wearing off. Neurologist has not told me that my PD has become PD-plus. She says she is checking that when she evaluates ability to move eyes/gaze up and down. So that about sums it up here. I'm happy to have shared a glimpse of things I deal with and hope it can serve some positive purpose for you Richard, and anyone else who passes this way. Roger
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A Good Evening to you all. For those that do not know me, I have Progressive Supranuclear Palsy. It is under the "Parkinsons Plus" umbrella. It progresses much quicker than Parkinsons and is normally terminal. It is what killed the Actor Dudley Moore. I probably have 6 months before I cannot type anymore. I am legally blind now and have all but lost my voice. I have retrocollis dystonia and fall backwards. I have eye, shoulder and neck surgery coming up. I am 49 years old. Here is my message, then a true life story of one night with this disease. My message is don't give up on one another. See one another all the way through. Have hope and know brighter days are here if you want them to be. Choose brighter days and live your life well. Don't let Parkinsons define you. Now the Story: Last night, I awoke, thinking I heard sounds coming from our living room. I heard a voice calling out "Mom". I tried to move but could not. Then tried to reach to alert Tammy, but my arms would not move. I could not speak. The sounds were still there, footsteps, shuffling around type noises. I remember yelling, though knowing that no sound was coming from me. Finally, I was able to move my legs over the side of the bed and fall to the floor. I could not stand, so crawled from the bedroom to the living room. I sat up against the wall and took a good look around. Nobody was there. I felt someone run fingers through my hair. Thinking it was Tammy, I tried to look up, but my eyes would not open (eyelid apraxia) right away. When finally my eyes opened, there was no one there. Something told me to check my blood-sugar. I crawled to the cabinet, pulled myself up and retrieved my tester. I have been diabetic for about 4 years. Never overweight, always ate smartly, it came from nowhere. The meter indicated "49", almost coma stage for me. I checked it again, and the result was the same. I felt I could walk and started toward the refrigerator. I was wrong and fell backwards hitting the floor hard. I was dazed but still conscious. I heard someone scream behind me, but something told me it was not real. I was thinking "this is it". I crawled to the refrigerator without bieng able to see. I could not reach the orange juice, but felt a can and opened it...it was Coke. I drank it and was able to feel a bannana and ate it. Within 20 minutes, I felt much better. Diabetes and PSP almost killed me. I cannot tell you how good it feels to still be here.
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wheelersceJoined: 02 Mar 2007Posts: 222Location: MI
Posted: Mon Nov 19, 2007 7:41 am Post subject:
Richard, We're glad you're still here, too! Your heart-rending story puts things in perspective and I am speechless before the faith-filled attitude that squeezes through your posts! You're on my prayer list. Sue W.
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 8:03 am Post subject:
Thank you Sue. I am rich, in the sense I have deep love from family and laughter is an everyday occurrence around here! Of course, above all, is the peace I have from God. No regrets. I pray the same for you this morning and wish you all the best in this upcoming Holiday Season.
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walkingbyfaithJoined: 06 Mar 2007Posts: 14
Posted: Mon Nov 19, 2007 10:13 am Post subject:
Richard, What an inspiring post. Your attitude is what I want for myself and my PWP. God Bless!_________________Walking By Faith
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 10:41 am Post subject:
Thank you Walking By Faith! Your Post Title says it all. Thank you for the Blessing, know that it is returned. Here is wishing the best for you and family during this upcoming Holiday Season.
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kmcclungJoined: 05 Mar 2007Posts: 41Location: Michigan
Posted: Mon Nov 19, 2007 11:46 am Post subject:
Richard, The truth is much more interesting than fiction. Thank you for sharing a very personal and profound part of your life with us. Ken
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 12:46 pm Post subject:
You are welcome Ken. I would like to hear some of the stories all of you have with your trials in Parkinsons. It gives me hope to see others overcome, knowing what they have been through.
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Mon Nov 19, 2007 1:59 pm Post subject:
Good afternooon, Rich. I'll share one with you (in two parts) but for myself, prefer not belaboring it in a play by play for the simply curious, morbid onlookers. Having lived the sequence hours ago and knowing I'll be doing so again shortly and forever isn't my cup of tea. "On" time is too valuable for that but not too valuable to answer your request. So many of us have these same little 'moves' like you mention. We're obliged to invent & master them to accomplish things we never gave a thought to in our earlier lives and/or stages. When I awaken after a three hour sleep segment I'm essentially paralyzed and on my good side facing like a little partial wall of knotty pine. This is the exact position I fell asleep in the 180 minutes +/- earlier. My eyesballs move but lack sufficient moisture so feel like sandy or scratchy as I consult my clock radio which is 'on' and nearby, tuned to rebroadcast the previous days NPR or CNN programming. I've drooled a good amount so the pillow case is soaked around my mouth. My left arm hurts and can't be moved, used, braced with....nothing at all without shooting pain. In other words it can not be flexed or muscle used. I have an apparent need to urinate but not urgent....enough to know I can't just lie there. Turing over and flopping with the help of gravity just as you describe requires me to either turn over in the bed rolling myself face down in the pillow or the other direction...face up towards the ceiling. Rolling face down is the harder and riskier because at mid operation with me face down into the pillow which has a waterproof liner under pillowcase I can become completely stuck which is sufficating and can last several minutes. Recall I have neck problems when unmediacted. So I usually go the other way: face to ceiling. To do this I swing one leg out over the edge of the bed behind me and stretch it way far out, elevated. This would be my left leg. This produces a cantilevering effect which after half a dozen tries enables me to wrench and slide/scoot my torso around and eventally drop down so that both knees are now resting on the floor, my torso, chest on mattress is across the bed. I suspect you know excatly what I'm talking about here. Time elapsed since opeinng my eyes? eight or ten minutes if I've worked diligently. With but one arm and hand that will move by muscle exertion, peeling a banana is out of the question. Indeed gravity unassisted motion being impossible or nearly so, tasks requiring fingers are not really possible at this point. I guess I could take a pill at this point...I keep several stashed at key places around my bed and living spaces for emergencies. I don't start dosing immediately. To be continued in a second installment. best wishes from Roger
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 5:30 pm Post subject:
Richard and Roger I am lost for words. when i feel at a low ebb, I shall read these postings again to give me a reality shake. What Inspiration!!!!!!!!!!!!!!!!! I doff my hat to such fantastic resolve. poker
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RichardJoined: 18 Aug 2007Posts: 31
Posted: Mon Nov 19, 2007 5:47 pm Post subject:
Roger, we both are in a bad way...physically. Your mind is still very sharp, even if you feel you have lost some. You write as well or better than any person of author that I am familiar with. You should write a book on this disease with your perspective. No joking here, you have what it takes! Has your home been modified to help? What assistance do you have? Hopefully, you are not one of those independent stubborn types who won't accept help. With your symptoms and struggle, it will not be long before you have to change some things. What do the Docs say about your curling? I ate the bannana with peel (left a lingering aftertaste):) Richard
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granniDJoined: 21 Oct 2007Posts: 38Location: Calgary Alberta Canada
Posted: Mon Nov 19, 2007 6:02 pm Post subject:
Richard, MY God man you are brave and so in touch with the "real things" in life. I can't tell u how much I connect with your words and feel ashamed of myself for whining and being a sissy. Thanks from the bottom of my heart. I wish your strength and courage and all the love of everyone that knows you will continue to carry you on through the rest of your journey. GranniD
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cowboyJoined: 03 Oct 2007Posts: 121
Posted: Mon Nov 19, 2007 6:14 pm Post subject:
Thank you GranniD. I appreciate your encouragement and kindness. I read your posts and have not heard a single whine yet!! You have discussed symptoms of Parkinsons everytime. How are you doing this fair Monday?
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pokermidJoined: 18 Jul 2007Posts: 134
Posted: Mon Nov 19, 2007 6:25 pm Post subject:
eh????? cowboy...............why are you answering for richard? confused pokermid
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leonardJoined: 04 Mar 2007Posts: 150
Posted: Mon Nov 19, 2007 10:27 pm Post subject:
Richard...I had a friend who had PSP. It truly is a devastating illness and I have a feeling of whagt you're dealing with...the WAY you're dealing with it is a model we can draw on to deal with what we have. You live your life with great purpose. I am grateful for you sharing that with us. Leonard
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Rogerstar1Joined: 14 Mar 2007Posts: 136
Posted: Tue Nov 20, 2007 12:43 am Post subject:
To conclude. It has always been easier for me to rise to a standing position once I've made it to my knees. Off the side of the mattress I can stand up, make use of the urinal with some difficulty and from there decide if I'll be up for a while or try for another sleep segment. I take very few Ambien sleeping tablets so this decision usually turns on if I took one 3 hours earlier and it is providing drowsiness or if there is something I want to do or need to do in which case I start the active part of my day. If the latter I'll start the very slow shuffle to the staircase by basically falling and catching myself by right arm at key points. I have the perfect house for this. A forward step is about 1 to 3 inches. Descending the staircase is ok but I creep into the living room. I never fall but your cautionary advice is well taken. My first morning pill has its most dramatic impact if I avoid food until it takes hold. Generic 25/100 Carbidopa-Levo tabs last about three hours each until 1:00 pm. Then shorter and shorter intervals and an Amantadine at around 3:00 PM to smooth out a little of what otherwise becomes quite bad flailing about. A second Amantadine seems to help nowadays. Azilect is discontinued. From 4 to 8 or 9 pm is MISERY writ llarge. I kinda nibble pills on an as needed basis or descend into alot of pain...and really do in any case. Neck twisting and head to one side, breathing difficulty due to tightness originating in solar plexus area. By later evening I settle down quite a lot. But during that horrible stretch things are not good here. During this period The News Hour With Jim Lehrer comes on PBS. At 6:00 PM on one station and at 7:00 PM on another. Same show. I used to watch it once and get 100%.. Now I watch both shows and get a total of about 75% because my mind wanders so much. Fortunately it wanders to the most pleasant thoughts. Or at least satisfying ones. Never any hallucinations or panic attacks. No forgetfulness. But my ability to maintain concentration during this period is quite simply gone. Mental health is otherwise sound I like to think :-). Not sure what you mean by curling. Only curling I have is sometimes when sinemet kicks in and my toes curl. I think most people have this when wearing off. Neurologist has not told me that my PD has become PD-plus. She says she is checking that when she evaluates ability to move eyes/gaze up and down. So that about sums it up here. I'm happy to have shared a glimpse of things I deal with and hope it can serve some positive purpose for you Richard, and anyone else who passes this way. Roger
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ages and stages: Alzheimer's and Parkinson's
Author
Message
Kathrynne Holden, MS, RDJoined: 22 Jan 2007Posts: 94Location: www.nutritionucanlivewith.com
Posted: Sat Oct 27, 2007 5:42 pm Post subject: News: Ages & Stages: Alzheimer's & Parkinson's
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Ages & Stages: Alzheimer's & Parkinson's http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3 from the National Women's Health Report, "Women & Neurologic Conditions" Here's something you never would have a heard a neurologist say about Alzheimer's 10 years ago: "This is a really exciting time." Or about Parkinson's disease: "We're doing really well." Yet that's just what Carol Lippa, MD, of Drexel University's College of Medicine in Philadelphia, and Jayaraman Rao, MD, of the Oschner Clinic Foundation in New Orleans, had to say about their respective specialties. Let's start with Alzheimer's disease. More women than men are diagnosed with Alzheimer's, a disparity that's long been attributed to the fact that women live longer than men. But above and beyond age, says Dr. Lippa, it appears that women are slightly more susceptible to the disease. "It's likely related to estrogen in some way," she says-either low levels of estrogen as women get older or the sudden drop in estrogen that occurs during menopause. Does that mean that supplemental estrogen is the answer? Probably not. The Women's Health Initiative (WHI) study found that estrogen, alone or with progestin, increased the rate of dementia, including Alzheimer's disease, in women 65 and older. It also didn't protect against mild cognitive decline. Those findings have led some experts to suggest maybe it isn't estrogen that's to blame for the gender disparity in Alzheimer's, but luteinizing hormone, which regulates estrogen in the body. Postmenopausal women and older men have much higher levels of this hormone, and people with Alzheimer's have levels twice as high as those without the disease. Plus areas of the brain most likely to be destroyed in Alzheimer's disease have large numbers of receptors for luteinizing hormone. This is important because it provides another clue to the underlying causes of the disease, which we need to develop treatments. The reason Dr. Lippa is so excited about Alzheimer's today is that she sees exciting new treatments coming in the next few years. For instance, several trials of vaccines are ongoing that stimulate the immune system to view beta amyloid plaques-the hallmark of the disease-as foreign bodies and attack them. However, no definitive results have been shown so far. We're also learning more about preventing Alzheimer's. For instance, there appear to be clear links between high blood sugar and the disease. So some studies are investigating whether existing diabetes drugs might help improve the way the brain uses glucose, reducing the risk of the disease. Plus, observational studies suggest that anything that reduces the risk of heart disease also reduces the risk of Alzheimer's, including following a healthy diet, reducing cholesterol and blood pressure levels, losing weight and getting more physical activity. "A heart-healthy diet is a brain-healthy diet," Dr. Lippa said. Parkinson's disease has also reached a watershed in terms of our understanding and treatment of the disease, says Dr. Rao. Parkinson's disease is the second most common neurological degenerative disease after Alzheimer's, affecting about 1 million Americans. The disease results from the loss of dopamine-producing brain cells in selected brain areas. The primary symptoms of Parkinson's are loss of motor control, resulting in tremors, muscle stiffness, slow gait and the inability to control certain muscular movements. Like Alzheimer's, Parkinson's is a disease of aging, with the number of people affected expected to double over the next 20 years. Unlike Alzheimer's, however, it is more prevalent in men than women. Today, in addition to a plethora of medications to treat the underlying lack of dopamine and Parkinson's symptoms (including rigidity, restless legs and insomnia, etc.), there are several nondrug approaches. The most exciting one is deep-brain stimulation, in which electrodes are implanted in the area of the brain responsible for the movement disorders. The electrodes are connected to a device about the size of a half dollar called a pulse generator that is programmed to electrically stimulate the brain. These electrical signals block the abnormal nerve signals that cause tremor and other Parkinson's symptoms. However, most treatments only address the symptoms of the disease, says Dr. Rao. What he's excited about are new treatments focused on arresting its progression. "If you slow the progression even marginally, the quality of life we can give these patients for a longer time is really improved." References Shumaker SA, Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women's Health InitiativeMemory Study: a randomized controlled trial. JAMA. May 28, 2003;289(20):2651-62. Webber KM, Casadesus G, Atwood CS, Bowen RL, Perry G, Smith MA. Gonadotropins: a cohesive gender-based etiology of Alzheimer disease. Mol Cell Endocrinol. Jan 2, 2007;260-262: 271-5. Epub Oct 18, 2006. Nutt JG, Wooten GF. Clinical practice. Diagnosis and initial management of Parkinson's disease. N Engl J Med. Sep 8, 2005;353(10):1021-7. http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3_________________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: Sat Oct 27, 2007 5:42 pm Post subject: News: Ages & Stages: Alzheimer's & Parkinson's
Dear Friends, the following may be of interest. Best, Kathrynne ======================================================== Ages & Stages: Alzheimer's & Parkinson's http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3 from the National Women's Health Report, "Women & Neurologic Conditions" Here's something you never would have a heard a neurologist say about Alzheimer's 10 years ago: "This is a really exciting time." Or about Parkinson's disease: "We're doing really well." Yet that's just what Carol Lippa, MD, of Drexel University's College of Medicine in Philadelphia, and Jayaraman Rao, MD, of the Oschner Clinic Foundation in New Orleans, had to say about their respective specialties. Let's start with Alzheimer's disease. More women than men are diagnosed with Alzheimer's, a disparity that's long been attributed to the fact that women live longer than men. But above and beyond age, says Dr. Lippa, it appears that women are slightly more susceptible to the disease. "It's likely related to estrogen in some way," she says-either low levels of estrogen as women get older or the sudden drop in estrogen that occurs during menopause. Does that mean that supplemental estrogen is the answer? Probably not. The Women's Health Initiative (WHI) study found that estrogen, alone or with progestin, increased the rate of dementia, including Alzheimer's disease, in women 65 and older. It also didn't protect against mild cognitive decline. Those findings have led some experts to suggest maybe it isn't estrogen that's to blame for the gender disparity in Alzheimer's, but luteinizing hormone, which regulates estrogen in the body. Postmenopausal women and older men have much higher levels of this hormone, and people with Alzheimer's have levels twice as high as those without the disease. Plus areas of the brain most likely to be destroyed in Alzheimer's disease have large numbers of receptors for luteinizing hormone. This is important because it provides another clue to the underlying causes of the disease, which we need to develop treatments. The reason Dr. Lippa is so excited about Alzheimer's today is that she sees exciting new treatments coming in the next few years. For instance, several trials of vaccines are ongoing that stimulate the immune system to view beta amyloid plaques-the hallmark of the disease-as foreign bodies and attack them. However, no definitive results have been shown so far. We're also learning more about preventing Alzheimer's. For instance, there appear to be clear links between high blood sugar and the disease. So some studies are investigating whether existing diabetes drugs might help improve the way the brain uses glucose, reducing the risk of the disease. Plus, observational studies suggest that anything that reduces the risk of heart disease also reduces the risk of Alzheimer's, including following a healthy diet, reducing cholesterol and blood pressure levels, losing weight and getting more physical activity. "A heart-healthy diet is a brain-healthy diet," Dr. Lippa said. Parkinson's disease has also reached a watershed in terms of our understanding and treatment of the disease, says Dr. Rao. Parkinson's disease is the second most common neurological degenerative disease after Alzheimer's, affecting about 1 million Americans. The disease results from the loss of dopamine-producing brain cells in selected brain areas. The primary symptoms of Parkinson's are loss of motor control, resulting in tremors, muscle stiffness, slow gait and the inability to control certain muscular movements. Like Alzheimer's, Parkinson's is a disease of aging, with the number of people affected expected to double over the next 20 years. Unlike Alzheimer's, however, it is more prevalent in men than women. Today, in addition to a plethora of medications to treat the underlying lack of dopamine and Parkinson's symptoms (including rigidity, restless legs and insomnia, etc.), there are several nondrug approaches. The most exciting one is deep-brain stimulation, in which electrodes are implanted in the area of the brain responsible for the movement disorders. The electrodes are connected to a device about the size of a half dollar called a pulse generator that is programmed to electrically stimulate the brain. These electrical signals block the abnormal nerve signals that cause tremor and other Parkinson's symptoms. However, most treatments only address the symptoms of the disease, says Dr. Rao. What he's excited about are new treatments focused on arresting its progression. "If you slow the progression even marginally, the quality of life we can give these patients for a longer time is really improved." References Shumaker SA, Legault C, Rapp SR, et al. Estrogen plus progestin and the incidence of dementia and mild cognitive impairment in postmenopausal women: the Women's Health InitiativeMemory Study: a randomized controlled trial. JAMA. May 28, 2003;289(20):2651-62. Webber KM, Casadesus G, Atwood CS, Bowen RL, Perry G, Smith MA. Gonadotropins: a cohesive gender-based etiology of Alzheimer disease. Mol Cell Endocrinol. Jan 2, 2007;260-262: 271-5. Epub Oct 18, 2006. Nutt JG, Wooten GF. Clinical practice. Diagnosis and initial management of Parkinson's disease. N Engl J Med. Sep 8, 2005;353(10):1021-7. http://www.wistv.com/Global/story.asp?S=7267260&nav=menu36_3_________________Best regards, Kathrynne Holden, MS, RD -- For a Parkinson Tip of the Day visit: http://www.nutritionucanlivewith.com/
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