Posted: Fri Feb 26, 2010 10:39 am Post subject: Sex Life
--------------------------------------------------------------------------------
I know a 65 years old parkinson's patient who developed hypersexuality after he was treated with Pramipexole, a dopamine agonist. For the first time in his life, he slept naked. He had sex every night which was something unusal for him.
His behavious has also changed. He has become obsessed with his personnel look - he went to facial and body message regualarly, and bought new clothes to feel young at heart. Whenever he went out to town, he enjoyed staring at beautiful girls.
Are these symptoms the sideeffect of Pramipexole ? I heard that dopamine agonists have been linked to extreme behaviour such as hypersexuality
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Dr. Fernandez
Joined: 20 Jan 2007
Posts: 90
Posted: Sat Feb 27, 2010 10:55 am Post subject:
--------------------------------------------------------------------------------
Yes, this is most likely a side effect of pramipexole. Having said that, there are a few things that I need to mention:
1) All PD drugs can cause this, except it occurs in higher prevalence with dopamine agonists (such as pramipexole) compared to the class of PD drugs.
2) This is a rare side effect (less than 8 percent will experience this).
3) The effect goes away almost immediately if you discontinue the medication.
So, the most important thing is not to avoid the medication (as it really is a good drug for most patients), but to be aware of the potential side effects and to immediately inform your doctor if this occurs.
Yours,
_________________
Sunday, February 28, 2010
Tuesday, February 23, 2010
shoes and balance
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Wed Mar 14, 2007 2:18 pm Post subject: Re: Shoes and Balance
--------------------------------------------------------------------------------
Hi-
I'm new to the forum and have been diagnosed for 2 years. Just started Requip.
If someone is having trouble with balance and eliptical sway I've found some negative heel shoes that help. They help with posture,too, if you tip forward. (The shoes aren't being marketed with this emphasis because of the current legal environment.) Check it out at www.earth.us They have jogging shoes and everyday shoes.
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marie jonson
Joined: 01 Mar 2007
Posts: 75
Posted: Thu Mar 15, 2007 3:26 am Post subject:
--------------------------------------------------------------------------------
Hi! and welcome to the forum. Thanks for posting that website re earth shoes--very interesting! Think I'll check into them -- so do you have a pair, and do you like them? Were they hard to get used to?
Kind regards, Marie
from BC, Canada
Back to top
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Thu Mar 15, 2007 12:48 pm Post subject: re: Earth Shoes
--------------------------------------------------------------------------------
marie jonson wrote:
Hi! and welcome to the forum. Thanks for posting that website re earth shoes--very interesting! Think I'll check into them -- so do you have a pair, and do you like them? Were they hard to get used to?
Kind regards, Marie
from BC, Canada
Hello from North Carolina, Marie. Yes, all I buy are Earth Shoes, now. They make me feel solid on my feet. I have the Energetic jogging shoes, the Pirouette 2 mary janes and some sandles. I called and told their marketing man how the shoes helped me. He already had seen PWP walk better in them and knew. They don't want to make medical claims for the shoes tho, he said. Too much of a legal hassle these days. Pity!
Best regards,
Barb
Back to top
gailzr
Joined: 12 Mar 2007
Posts: 10
Posted: Fri Mar 16, 2007 2:26 am Post subject: earth shoes
--------------------------------------------------------------------------------
thanks for the info....i have been using SAS shoes;they are deep and very comfy. Two years ago I had a spinal fusion and laminectomy and couldn't walk. It took months AND i COULDN'T FIND SHOES THAT FIT. mY FEET WERE A SIZE 10 W;NOW AN 8 WIDE. SO HERE I COME EARTH SHOES ..THANKS
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Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Mon Mar 19, 2007 4:48 pm Post subject: Re: earth shoes
--------------------------------------------------------------------------------
gailzr wrote:
thanks for the info....i have been using SAS shoes;they are deep and very comfy. Two years ago I had a spinal fusion and laminectomy and couldn't walk. It took months AND i COULDN'T FIND SHOES THAT FIT. mY FEET WERE A SIZE 10 W;NOW AN 8 WIDE. SO HERE I COME EARTH SHOES ..THANKS
Hi--Some of the Earth shoes do come in WIDE, not too many. They are marked special in the catalogue. I hope you find them helpful.
Back to top
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Sat Apr 14, 2007 12:07 pm Post subject: Wider Shoes-For gailzr
--------------------------------------------------------------------------------
There's a new style jogging shoe in Earth shoes that's wider, cooler, lighter weight. It's called "Rocket" and has more toe room, too. The B width seems extra wide to me. (Just got a pair.) You might like them. The www.Earth.us company has been good about exchanges and returns, so far, anyway. Wondering if the Earth shoes did you any good,...
Back to top
Franky65
Joined: 15 Oct 2007
Posts: 2
Posted: Mon Oct 15, 2007 7:48 pm Post subject: Hi
--------------------------------------------------------------------------------
I wear the nike pegasus shoe.ihave worn this shoe for years because it has been good for me and i believe as long as a shoe is doing the job you should ignore the rating charts and stay with who brung you to the dance.however, there are points that a person needs to know before buying a pair of shoes.1.sizing a shoe you need a thumbs width between the end of the toe and the end of the shoe.2.the shoe should bend where your foot bends.if it does not and you have break the shoe down,this will tire the lower leg out rather quick and effect your running.3.the shoe should fit the contour of your foot.4.your body weight might determine if you need a soft or firm shoe.5.if a person pronates or supanates,in other words if the foot rolls in or out you need a firm shoe or one with a lacing system or wedge that would prevent the foot from rolling.if you find a shoe that meets this needs and you have had success and enjoy your running stay with the shoe
----------------------
Clarks & DC Shoes
Back to top
teokimhoe
Joined: 03 Mar 2007
Posts: 159
Location: Malaysia
Posted: Tue Oct 16, 2007 4:25 am Post subject: Hi
--------------------------------------------------------------------------------
I have parkinson's for two years.
I am taking my medication i.e 12 mg Requip per day for the past of six months and it increases my agilities doing my physical exercises at gym. I do yoga, body combat, pump and spinning in class for hourly.
I do not have difficulties as you have mention. Anyway it is individual.
As for the shoes I suggest putting on "MBT" it helps you walk upright and swing your arm whilst go jogging.
TEOKIMHOE
_________________
to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
Back to top
bishion
Joined: 23 Feb 2010
Posts: 5
Location: New York
Posted: Tue Feb 23, 2010 2:42 am Post subject: MBT shoes
--------------------------------------------------------------------------------
I do think MBT shoes are the best choice.
MBT is famous for "the world's smallest gym," MBT anti-shoes take the philosophy that typical shoes don't reflect the actual world we walk in. As we all know, the world is dishearteningly uneven, most shoes are flatter to keep the feet and our body blance.This is to solve the problem from the surface.But what the MBT attempt to do is improve one's coordination and strength so that in turn the stress on the joints and spine can be lessened.
Back to top
Joined: 12 Mar 2007
Posts: 12
Posted: Wed Mar 14, 2007 2:18 pm Post subject: Re: Shoes and Balance
--------------------------------------------------------------------------------
Hi-
I'm new to the forum and have been diagnosed for 2 years. Just started Requip.
If someone is having trouble with balance and eliptical sway I've found some negative heel shoes that help. They help with posture,too, if you tip forward. (The shoes aren't being marketed with this emphasis because of the current legal environment.) Check it out at www.earth.us They have jogging shoes and everyday shoes.
Back to top
marie jonson
Joined: 01 Mar 2007
Posts: 75
Posted: Thu Mar 15, 2007 3:26 am Post subject:
--------------------------------------------------------------------------------
Hi! and welcome to the forum. Thanks for posting that website re earth shoes--very interesting! Think I'll check into them -- so do you have a pair, and do you like them? Were they hard to get used to?
Kind regards, Marie
from BC, Canada
Back to top
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Thu Mar 15, 2007 12:48 pm Post subject: re: Earth Shoes
--------------------------------------------------------------------------------
marie jonson wrote:
Hi! and welcome to the forum. Thanks for posting that website re earth shoes--very interesting! Think I'll check into them -- so do you have a pair, and do you like them? Were they hard to get used to?
Kind regards, Marie
from BC, Canada
Hello from North Carolina, Marie. Yes, all I buy are Earth Shoes, now. They make me feel solid on my feet. I have the Energetic jogging shoes, the Pirouette 2 mary janes and some sandles. I called and told their marketing man how the shoes helped me. He already had seen PWP walk better in them and knew. They don't want to make medical claims for the shoes tho, he said. Too much of a legal hassle these days. Pity!
Best regards,
Barb
Back to top
gailzr
Joined: 12 Mar 2007
Posts: 10
Posted: Fri Mar 16, 2007 2:26 am Post subject: earth shoes
--------------------------------------------------------------------------------
thanks for the info....i have been using SAS shoes;they are deep and very comfy. Two years ago I had a spinal fusion and laminectomy and couldn't walk. It took months AND i COULDN'T FIND SHOES THAT FIT. mY FEET WERE A SIZE 10 W;NOW AN 8 WIDE. SO HERE I COME EARTH SHOES ..THANKS
Back to top
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Mon Mar 19, 2007 4:48 pm Post subject: Re: earth shoes
--------------------------------------------------------------------------------
gailzr wrote:
thanks for the info....i have been using SAS shoes;they are deep and very comfy. Two years ago I had a spinal fusion and laminectomy and couldn't walk. It took months AND i COULDN'T FIND SHOES THAT FIT. mY FEET WERE A SIZE 10 W;NOW AN 8 WIDE. SO HERE I COME EARTH SHOES ..THANKS
Hi--Some of the Earth shoes do come in WIDE, not too many. They are marked special in the catalogue. I hope you find them helpful.
Back to top
Sue2Barb
Joined: 12 Mar 2007
Posts: 12
Posted: Sat Apr 14, 2007 12:07 pm Post subject: Wider Shoes-For gailzr
--------------------------------------------------------------------------------
There's a new style jogging shoe in Earth shoes that's wider, cooler, lighter weight. It's called "Rocket" and has more toe room, too. The B width seems extra wide to me. (Just got a pair.) You might like them. The www.Earth.us company has been good about exchanges and returns, so far, anyway. Wondering if the Earth shoes did you any good,...
Back to top
Franky65
Joined: 15 Oct 2007
Posts: 2
Posted: Mon Oct 15, 2007 7:48 pm Post subject: Hi
--------------------------------------------------------------------------------
I wear the nike pegasus shoe.ihave worn this shoe for years because it has been good for me and i believe as long as a shoe is doing the job you should ignore the rating charts and stay with who brung you to the dance.however, there are points that a person needs to know before buying a pair of shoes.1.sizing a shoe you need a thumbs width between the end of the toe and the end of the shoe.2.the shoe should bend where your foot bends.if it does not and you have break the shoe down,this will tire the lower leg out rather quick and effect your running.3.the shoe should fit the contour of your foot.4.your body weight might determine if you need a soft or firm shoe.5.if a person pronates or supanates,in other words if the foot rolls in or out you need a firm shoe or one with a lacing system or wedge that would prevent the foot from rolling.if you find a shoe that meets this needs and you have had success and enjoy your running stay with the shoe
----------------------
Clarks & DC Shoes
Back to top
teokimhoe
Joined: 03 Mar 2007
Posts: 159
Location: Malaysia
Posted: Tue Oct 16, 2007 4:25 am Post subject: Hi
--------------------------------------------------------------------------------
I have parkinson's for two years.
I am taking my medication i.e 12 mg Requip per day for the past of six months and it increases my agilities doing my physical exercises at gym. I do yoga, body combat, pump and spinning in class for hourly.
I do not have difficulties as you have mention. Anyway it is individual.
As for the shoes I suggest putting on "MBT" it helps you walk upright and swing your arm whilst go jogging.
TEOKIMHOE
_________________
to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
Back to top
bishion
Joined: 23 Feb 2010
Posts: 5
Location: New York
Posted: Tue Feb 23, 2010 2:42 am Post subject: MBT shoes
--------------------------------------------------------------------------------
I do think MBT shoes are the best choice.
MBT is famous for "the world's smallest gym," MBT anti-shoes take the philosophy that typical shoes don't reflect the actual world we walk in. As we all know, the world is dishearteningly uneven, most shoes are flatter to keep the feet and our body blance.This is to solve the problem from the surface.But what the MBT attempt to do is improve one's coordination and strength so that in turn the stress on the joints and spine can be lessened.
Back to top
Monday, February 22, 2010
Saturday, February 6, 2010
PatientsLikeMe
From:
race2cure
(guest)
Just wanted to let you know that based on what I've read from your posts and profile, you seem to have an extremely positive and healthy attitude towards PD, and quite frankly I simply wanted to thank you.
I am currently doing research for a project related to raising awareness for PD around the world, and ultimately increasing support to find a cure NOW. Your views and perspective on staying fit, exercising, and maintaining a positive attitude while learning all that you can about the illness are all quite inspiring, and I truly feel that people like you are both leaders and role models in a supportive community of PwPs.
Thank you so much for your words and posts in the forum, you have taught me, personally, and hopefully others as well, and I wish you the absolute best in continuing to let people know that they are not alone.
Thanks again and God bless!
yours truly,
Thomas
race2cure
(guest)
Just wanted to let you know that based on what I've read from your posts and profile, you seem to have an extremely positive and healthy attitude towards PD, and quite frankly I simply wanted to thank you.
I am currently doing research for a project related to raising awareness for PD around the world, and ultimately increasing support to find a cure NOW. Your views and perspective on staying fit, exercising, and maintaining a positive attitude while learning all that you can about the illness are all quite inspiring, and I truly feel that people like you are both leaders and role models in a supportive community of PwPs.
Thank you so much for your words and posts in the forum, you have taught me, personally, and hopefully others as well, and I wish you the absolute best in continuing to let people know that they are not alone.
Thanks again and God bless!
yours truly,
Thomas
Tuesday, January 26, 2010
blood pressure and dizziness
Posted: Sat Jan 23, 2010 10:52 am Post subject: climate changes and blood pressure
--------------------------------------------------------------------------------
climate changes and blood pressure
I was on three weeks holiday in Europe recently.
It is winter in Europe and am flying from tropicial country, Malaysia.
I have low blood pressure due to sideeffect with Parkinson’s
medication.
I do not have problem during my stay in Europe as I put on enough winter cloth to protect the cold and to warm up our body blood pressure,
The airline compartment is heated against the cold during the journey.
I enjoyed gym exercise at the fitness centre,,steam bath and sauna during the stay..
I have problem on the scecond day after I fly back from Europe.
I feel dizzinness at the taxic backseat after comming back from shopping and I could not stand and feel unstable, as the result I knelt down my body with conscious
In the flying flight they lower down the heated temp. and we have to take down our winter cloth to lower down our body temperature.
Kindly advise
I
Back to top
Dr. Fernandez
Joined: 20 Jan 2007
Posts: 90
Posted: Mon Jan 25, 2010 1:29 pm Post subject:
--------------------------------------------------------------------------------
I am not particularly sure if climate really has an effect on PD.
I practiced for 5 years in the Northeast, now I have been practicing in the Southeast in the last 6 years or so, and I don't see much difference. I also don's really notice if my patients get better or worse in the summer as compared to winter.
When people travel though, it can affect their PD...diet change, routine change, timezone changes which therefore affect sleep patterns are all factors that play a role. My best advice is to keep your routine as much as possible. Adjust to the weather and the new time zone as fast as you can and keep your meal times as consistent as possible.
Consistency is the key.
Yours,
_________________
Hubert H. Fernandez
Warm weather can lower your blood pressure due to increased sweating (loss of fluid from the body) and dilatation (engorgement) of the blood vessels under the skin. The low blood pressure can explain your dizziness and fainting spell. Furthermore, the pooling of blood under your skin diverts the blood from your brain, leading to reduced oxygen supply to the brain.
The Parkinson's medications also have a role to play in your dizziness because they lower the blood pressure.
At the moment, I think there is no need to change your Parkinson's medications. Just remember to drink more fluids the next time you return from european countries.
Dr.Chew
PostPosted: Sun Jan 31, 2010 2:12 pm Post subject: Reply with quote
I have the same problem and actually got off requip because I fainted about 20 times a day and this is not an exaggeration. Eating is the only thing now that causes a major problem for me and I know during digestion a lot of blood is diverted to the digestive system so I have to drink a lot of fluids and eat salty foods or just eat a little salt with the water. I posted about learning how to do a controlled fall because I have this problem and it was terrifying for me and my SO as she can't stop me from falling - only keep my head from hitting the ground. Now that I can do a controlled fall I am much more confidant but still try to drink a lot of fluids. I too have major problems in the summer 90m degree high humidity environment. If we go to an outdoor activity many times I've had to stay in the car with the air conditioning on and I came close to having a heat stroke. So do be careful. This is a dangerous situation. Drink a lot, eat some salty food and learn how to fall so you don't get hurt.
--------------------------------------------------------------------------------
climate changes and blood pressure
I was on three weeks holiday in Europe recently.
It is winter in Europe and am flying from tropicial country, Malaysia.
I have low blood pressure due to sideeffect with Parkinson’s
medication.
I do not have problem during my stay in Europe as I put on enough winter cloth to protect the cold and to warm up our body blood pressure,
The airline compartment is heated against the cold during the journey.
I enjoyed gym exercise at the fitness centre,,steam bath and sauna during the stay..
I have problem on the scecond day after I fly back from Europe.
I feel dizzinness at the taxic backseat after comming back from shopping and I could not stand and feel unstable, as the result I knelt down my body with conscious
In the flying flight they lower down the heated temp. and we have to take down our winter cloth to lower down our body temperature.
Kindly advise
I
Back to top
Dr. Fernandez
Joined: 20 Jan 2007
Posts: 90
Posted: Mon Jan 25, 2010 1:29 pm Post subject:
--------------------------------------------------------------------------------
I am not particularly sure if climate really has an effect on PD.
I practiced for 5 years in the Northeast, now I have been practicing in the Southeast in the last 6 years or so, and I don't see much difference. I also don's really notice if my patients get better or worse in the summer as compared to winter.
When people travel though, it can affect their PD...diet change, routine change, timezone changes which therefore affect sleep patterns are all factors that play a role. My best advice is to keep your routine as much as possible. Adjust to the weather and the new time zone as fast as you can and keep your meal times as consistent as possible.
Consistency is the key.
Yours,
_________________
Hubert H. Fernandez
Warm weather can lower your blood pressure due to increased sweating (loss of fluid from the body) and dilatation (engorgement) of the blood vessels under the skin. The low blood pressure can explain your dizziness and fainting spell. Furthermore, the pooling of blood under your skin diverts the blood from your brain, leading to reduced oxygen supply to the brain.
The Parkinson's medications also have a role to play in your dizziness because they lower the blood pressure.
At the moment, I think there is no need to change your Parkinson's medications. Just remember to drink more fluids the next time you return from european countries.
Dr.Chew
PostPosted: Sun Jan 31, 2010 2:12 pm Post subject: Reply with quote
I have the same problem and actually got off requip because I fainted about 20 times a day and this is not an exaggeration. Eating is the only thing now that causes a major problem for me and I know during digestion a lot of blood is diverted to the digestive system so I have to drink a lot of fluids and eat salty foods or just eat a little salt with the water. I posted about learning how to do a controlled fall because I have this problem and it was terrifying for me and my SO as she can't stop me from falling - only keep my head from hitting the ground. Now that I can do a controlled fall I am much more confidant but still try to drink a lot of fluids. I too have major problems in the summer 90m degree high humidity environment. If we go to an outdoor activity many times I've had to stay in the car with the air conditioning on and I came close to having a heat stroke. So do be careful. This is a dangerous situation. Drink a lot, eat some salty food and learn how to fall so you don't get hurt.
Sunday, January 24, 2010
Hero Teo – the atypical Parkinson’s patient
Hero Teo – the atypical Parkinson’s patient
It has been well documented in the literature that Parkinson’s is associated with a certain type of personality. They tend to be “introverted” and “self-controlled”. In my own experience, I have also observed such “Parkinson’s personality”. Due to their submissive nature, Parkinson’s patients are the most pleasant and obedient patients whom I have treated in my clinic. In general, they are not outgoing. Most of the time, their daily activities are confined to their home, and they keep a distance from the society.
It is difficult to determine the exact origin of the Parkinson’s personality – it could be the direct manifestation of the illness, the reaction to the physical disabilities or society (social stigma). Some researchers have even suggested that it the characteristic personality of Parkinson’s patients that has predisposed to the illness (i.e. increased the risk of getting Parkinson’s).
However, this “Parkinson’s personality” rule certainly does not apply to all patients. I personally know a very small number of Parkinson’s who are pleasant, submissive but very outgoing. These exceptional Parkinson’s patients have even reached out to the whole society, while declaring their illness openly to the whole world. In fact, the existence of such “atypical Parkinson’s personality” is a blessing for the Parkinson’s community, as these “atypical” Parkinson’s patients have overcome the social stigma and brought revolutionary changes to the Parkinson’s care in this country.
So far, I have met three such “atypical” but remarkable Parkinson’s patients. You have heard of the heroic stories of the late Mr. Lloyd Tan and Mr. Chee Liew Seong, who have been the key players in the history of Parkinson’s support group movement in Malaysia. The very fact that Mr. Lloyd Tan was subsequently discovered to have parkinsonism-plus syndrome, a much more severe illness than Parkinson’s, made his personality even much more remarkable.
The third hero of the Malaysian Parkinson’s community is Mr. Teo Kim Hoe, 71, who is much better known as “Hero Teo”.
“As far back as 1998, he was already noticed to have slowness of movement, and a hunched back with his head bent downwards (stooped posture). Even at that moment, his relatives had commented that the way he walked was different from previously – he had a tendency to walk on his toes. Once, my daughters and I were looking for him at a shopping centre. He walked right past us without noticing us at all, as his head was bent downwards. That was how we knew something was not right about him. But, we did not have any clue about what he was suffering from,” recalled Mrs. Teo.
Mr. Teo was diagnosed to have Parkinson’s in 2005. He was already on some Parkinson’s medications when I first met him in 2006. At this moment, his symptoms were fairly well-controlled. It was during this first meeting when I discovered that he had an inherited form of Parkinson’s, which is generally rare in this region. He has a total of eight siblings, two of whom also suffer from Parkinson’s.
Right from the first time I met him, I had noticed some remarkable characteristics in him. The most obvious was his strong optimism in coping with his illness. Just like other Parkinson’s patients, Mr. Teo has experienced many complications such as dizziness due to low blood pressure, insomnia and nightmares. Last year, he was admitted to my hospital for sudden onset of slurring of speech, dizziness and limb weakness. The brain scan confirmed that he had suffered from stroke. Despite this, he persevered and recovered completely within one week. His “never-say-die” attitude has helped him to pull through all these complications.
Another unique characteristic of Mr. Teo is his openness in facing his illness. With the help of his son-in-law, he started his personal blog (“Hero Teo – Chronicles of a PD fighter” - www.heroteo.ikonxept.com) in 2005. In fact, Mr. Teo is the first Malaysian Parkinson’s patient (and the only one) who has started a blog.
In his blog, Mr. Teo has described his illness in a very illustrative and comprehensive manner - almost every aspect of Parkinson’s is included. Despite not having any medical qualification, he has discussed many medical issues which are considered to be difficult for the general public. Once, he sent me an email, asking me about non-motor symptoms of Parkinson’s, something no Parkinson’s patient has ever discussed with me.
When I asked him why he decided to set up a blog, he said, “I have always wanted to tell the world how I fight my Parkinson’s. By creating a blog, I hope to send a strong message to all the readers that there are people suffering from Parkinson’s who need the support of the general public. Malaysians need to be aware of the existence of Parkinson’s, and its physical, emotional and mental complications. Through this blog, I can share my experience on how I cope with and understand my illness.”
“Don’t you worry about revealing your illness to the whole world? I am sure that you know about the social stigma associated with Parkinson’s, and the prejudice that people might have against you,” I asked.
“Even though I have Parkinson’s, I don’t consider myself to be a disabled person. I know that nowadays we have effective treatment for Parkinson’s which can help me attain a fairly good quality of life. Furthermore, by revealing my illness to other people, it enables them to understand and help me solve my problems. These are the reasons why I don’t feel embarrassed to tell the whole world that I have Parkinson’s,” he replied.
I have to admit that I was amazed and impressed by his reply. The truth is, the negative perception of Parkinson’s patients towards their own illness is one of the reasons that contribute to the social stigma. Many Parkinson’s patients consider themselves to be disabled or physically inferior, even before they face the general pubic. Coupled with the wrong perception of the general public about Parkinson’s, the social stigma of Parkinson’s is intensified. In other words, the Parkinson’s patients’ own perception of illness does have a significant influence on their long-term well being and social life.
Throughout all these years, Mr. Teo was the very first Parkinson’s patient who has a very “physical” approach in coping with the illness. I have met many Parkinson’s patients who are involved in relatively light physical exercise programs such as Tai-chi and Wai-dan-gong. In contrast, Mr. Teo attends a much more strenuous physical exercise program for five days in a week at a local health centre. During each session, which lasts about 3-4 hours, he carries out all sorts of exercise programs such as muscle stretching, running on treadmill, balancing exercise on “fit-ball”, kick-boxing and spinning (i.e. stationary cycling). He even hired an instructor to teach him Yoga twice a week at home. In fact, I have never met any Parkinson’s patient who is so aggressive in carrying out physical exercises.
“I believe that in addition to the Parkinson’s medications, complementary treatment such as physical exercise is also useful in maintaining good muscle tone, strength and posture. This is why I have hired two trainers to help me with my exercise program,” commented Mr. Teo.
Even today, Mr. Teo is still physically fit, despite his age and having Parkinson’s for ten years. As I write this article, Mr. Teo and his wife are preparing for a holiday I Hong Kong. In fact, he has been traveling to many countries over the past few years, such as Thailand, Singapore and Australia. I am glad that he is making the best out of his old days.
Don’t mess with me – Mr. Teo doing his kick-boxing exercise
I have to admit that my personal experience in treating Mr. Teo over the past two years has been really special and encouraging. At least I know that there is a minority of Parkinson’s patients who are different from the rest, and attempted to make life better for the others.
Mr. Lloyd Tan, Mr. Chee Liew Seong and Mr. Teo Kim Hoe are the heroes of the Malaysian Parkinson’s community.
Posted by teo at 8:31 PM
It has been well documented in the literature that Parkinson’s is associated with a certain type of personality. They tend to be “introverted” and “self-controlled”. In my own experience, I have also observed such “Parkinson’s personality”. Due to their submissive nature, Parkinson’s patients are the most pleasant and obedient patients whom I have treated in my clinic. In general, they are not outgoing. Most of the time, their daily activities are confined to their home, and they keep a distance from the society.
It is difficult to determine the exact origin of the Parkinson’s personality – it could be the direct manifestation of the illness, the reaction to the physical disabilities or society (social stigma). Some researchers have even suggested that it the characteristic personality of Parkinson’s patients that has predisposed to the illness (i.e. increased the risk of getting Parkinson’s).
However, this “Parkinson’s personality” rule certainly does not apply to all patients. I personally know a very small number of Parkinson’s who are pleasant, submissive but very outgoing. These exceptional Parkinson’s patients have even reached out to the whole society, while declaring their illness openly to the whole world. In fact, the existence of such “atypical Parkinson’s personality” is a blessing for the Parkinson’s community, as these “atypical” Parkinson’s patients have overcome the social stigma and brought revolutionary changes to the Parkinson’s care in this country.
So far, I have met three such “atypical” but remarkable Parkinson’s patients. You have heard of the heroic stories of the late Mr. Lloyd Tan and Mr. Chee Liew Seong, who have been the key players in the history of Parkinson’s support group movement in Malaysia. The very fact that Mr. Lloyd Tan was subsequently discovered to have parkinsonism-plus syndrome, a much more severe illness than Parkinson’s, made his personality even much more remarkable.
The third hero of the Malaysian Parkinson’s community is Mr. Teo Kim Hoe, 71, who is much better known as “Hero Teo”.
“As far back as 1998, he was already noticed to have slowness of movement, and a hunched back with his head bent downwards (stooped posture). Even at that moment, his relatives had commented that the way he walked was different from previously – he had a tendency to walk on his toes. Once, my daughters and I were looking for him at a shopping centre. He walked right past us without noticing us at all, as his head was bent downwards. That was how we knew something was not right about him. But, we did not have any clue about what he was suffering from,” recalled Mrs. Teo.
Mr. Teo was diagnosed to have Parkinson’s in 2005. He was already on some Parkinson’s medications when I first met him in 2006. At this moment, his symptoms were fairly well-controlled. It was during this first meeting when I discovered that he had an inherited form of Parkinson’s, which is generally rare in this region. He has a total of eight siblings, two of whom also suffer from Parkinson’s.
Right from the first time I met him, I had noticed some remarkable characteristics in him. The most obvious was his strong optimism in coping with his illness. Just like other Parkinson’s patients, Mr. Teo has experienced many complications such as dizziness due to low blood pressure, insomnia and nightmares. Last year, he was admitted to my hospital for sudden onset of slurring of speech, dizziness and limb weakness. The brain scan confirmed that he had suffered from stroke. Despite this, he persevered and recovered completely within one week. His “never-say-die” attitude has helped him to pull through all these complications.
Another unique characteristic of Mr. Teo is his openness in facing his illness. With the help of his son-in-law, he started his personal blog (“Hero Teo – Chronicles of a PD fighter” - www.heroteo.ikonxept.com) in 2005. In fact, Mr. Teo is the first Malaysian Parkinson’s patient (and the only one) who has started a blog.
In his blog, Mr. Teo has described his illness in a very illustrative and comprehensive manner - almost every aspect of Parkinson’s is included. Despite not having any medical qualification, he has discussed many medical issues which are considered to be difficult for the general public. Once, he sent me an email, asking me about non-motor symptoms of Parkinson’s, something no Parkinson’s patient has ever discussed with me.
When I asked him why he decided to set up a blog, he said, “I have always wanted to tell the world how I fight my Parkinson’s. By creating a blog, I hope to send a strong message to all the readers that there are people suffering from Parkinson’s who need the support of the general public. Malaysians need to be aware of the existence of Parkinson’s, and its physical, emotional and mental complications. Through this blog, I can share my experience on how I cope with and understand my illness.”
“Don’t you worry about revealing your illness to the whole world? I am sure that you know about the social stigma associated with Parkinson’s, and the prejudice that people might have against you,” I asked.
“Even though I have Parkinson’s, I don’t consider myself to be a disabled person. I know that nowadays we have effective treatment for Parkinson’s which can help me attain a fairly good quality of life. Furthermore, by revealing my illness to other people, it enables them to understand and help me solve my problems. These are the reasons why I don’t feel embarrassed to tell the whole world that I have Parkinson’s,” he replied.
I have to admit that I was amazed and impressed by his reply. The truth is, the negative perception of Parkinson’s patients towards their own illness is one of the reasons that contribute to the social stigma. Many Parkinson’s patients consider themselves to be disabled or physically inferior, even before they face the general pubic. Coupled with the wrong perception of the general public about Parkinson’s, the social stigma of Parkinson’s is intensified. In other words, the Parkinson’s patients’ own perception of illness does have a significant influence on their long-term well being and social life.
Throughout all these years, Mr. Teo was the very first Parkinson’s patient who has a very “physical” approach in coping with the illness. I have met many Parkinson’s patients who are involved in relatively light physical exercise programs such as Tai-chi and Wai-dan-gong. In contrast, Mr. Teo attends a much more strenuous physical exercise program for five days in a week at a local health centre. During each session, which lasts about 3-4 hours, he carries out all sorts of exercise programs such as muscle stretching, running on treadmill, balancing exercise on “fit-ball”, kick-boxing and spinning (i.e. stationary cycling). He even hired an instructor to teach him Yoga twice a week at home. In fact, I have never met any Parkinson’s patient who is so aggressive in carrying out physical exercises.
“I believe that in addition to the Parkinson’s medications, complementary treatment such as physical exercise is also useful in maintaining good muscle tone, strength and posture. This is why I have hired two trainers to help me with my exercise program,” commented Mr. Teo.
Even today, Mr. Teo is still physically fit, despite his age and having Parkinson’s for ten years. As I write this article, Mr. Teo and his wife are preparing for a holiday I Hong Kong. In fact, he has been traveling to many countries over the past few years, such as Thailand, Singapore and Australia. I am glad that he is making the best out of his old days.
Don’t mess with me – Mr. Teo doing his kick-boxing exercise
I have to admit that my personal experience in treating Mr. Teo over the past two years has been really special and encouraging. At least I know that there is a minority of Parkinson’s patients who are different from the rest, and attempted to make life better for the others.
Mr. Lloyd Tan, Mr. Chee Liew Seong and Mr. Teo Kim Hoe are the heroes of the Malaysian Parkinson’s community.
Posted by teo at 8:31 PM
Friday, January 22, 2010
climate changes and blood pressure
nonymous
PostPosted: Wed Jan 20, 2010 6:41 am Post subject: climate changes and blood pressure Reply with quote
I was on three weeks holiday in Europe recently.
It is winter in Europe and am flying from tropicial country, Malaysia.
I have low blood pressure due to sideeffect with Parkinson's
medication.
I do not have problem during my stay in Europe.
I have problem on the second day when I fly back from Europe as I feel dizzinness and fainted after comming back from shopping.
Kindly advise
I
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Kathrynne Holden, MS
Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
PostPosted: Thu Jan 21, 2010 3:43 pm Post subject: Reply with quote
.
Dear Friend,
I am not certain that the dizziness was due to the climate change.
Although that might be the case, I think it is more likely that perhaps you might have been experiencing some other concern, such as dehydration. With low blood pressure, it is important to drink plenty of fluids to build up the blood volume as much as possible; and travel can change our habits, schedules, and the way we normally eat and drink. If you had not been drinking as much fluid as usual, I think that would be a more likely cause of the blood pressure drop than the climate change.
However, I suggest you address your question to “Ask the Doctor,” as they may have other information they would like to suggest.
_________________
Best regards,
Kathrynne Holden, MS
--
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/
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View user's profile Send private message Visit poster's website
PostPosted: Wed Jan 20, 2010 6:41 am Post subject: climate changes and blood pressure Reply with quote
I was on three weeks holiday in Europe recently.
It is winter in Europe and am flying from tropicial country, Malaysia.
I have low blood pressure due to sideeffect with Parkinson's
medication.
I do not have problem during my stay in Europe.
I have problem on the second day when I fly back from Europe as I feel dizzinness and fainted after comming back from shopping.
Kindly advise
I
Back to top
Kathrynne Holden, MS
Joined: 22 Jan 2007
Posts: 94
Location: www.nutritionucanlivewith.com
PostPosted: Thu Jan 21, 2010 3:43 pm Post subject: Reply with quote
.
Dear Friend,
I am not certain that the dizziness was due to the climate change.
Although that might be the case, I think it is more likely that perhaps you might have been experiencing some other concern, such as dehydration. With low blood pressure, it is important to drink plenty of fluids to build up the blood volume as much as possible; and travel can change our habits, schedules, and the way we normally eat and drink. If you had not been drinking as much fluid as usual, I think that would be a more likely cause of the blood pressure drop than the climate change.
However, I suggest you address your question to “Ask the Doctor,” as they may have other information they would like to suggest.
_________________
Best regards,
Kathrynne Holden, MS
--
For a Parkinson Tip of the Day visit:
http://www.nutritionucanlivewith.com/
Back to top
View user's profile Send private message Visit poster's website
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