Friday, July 31, 2009

NPF Discussion : Leg Freezing

Anonymous
Posted: Sat Jul 25, 2009 4:44 am Post subject: Leg Freezing

My brother has freezing on his leg when his medication is wearing off.

There are way to prevent him from falling down until the freezing going off.

1. stop from going foward going backward

2. stay horizon the place where you are to release the freezing


3.Holding both leg and slap side of both knee to release the freezin.

Is it strange why the parkinson patient does not have freezing problem whilst on cycling?

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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Jul 30, 2009 9:48 am Post subject:

Well, the brain is an interesting organ! It is fascinating. Sometimes, we need to "trick it" to get the results we want. PD patients to well when they are cued, or there is a pattern that they need to follow, or there is a line that they need to cross, or there is a rhythm or beat that they need to in tandem with. These are some audio or visual tricks used for freezing. Spinning and cycling works the same way. IF the freezing occurs during wearing off however, they might benefit from increasing PD meds. Yours,_________________Hubert H. Fernandez

Thursday, July 30, 2009

complementary and alternative medication

Anonymous
Posted: Thu Jul 23, 2009 7:05 am Post subject: Complementary & Alternative Medicine

Due to sideeffect of the medication there are growing interest for parkinson's patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time. The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage. They try to minimize their usage of medication they take to minimize the physical or mental sideeffects on them. Kindly brief their potential benefits and risks for the alterative therapies. Sometimes the best treatment plans involve a wide range of interventions with their usage of the medications.
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Jul 30, 2009 8:54 am Post subject:

Sorry, I don't know much about CAM. Mainly based on my ignorance, I am always skeptical about alternative therapies. While they make wonders for individual patient reports, when studies are performed using a rigorous, blinded, placebo-controlled design, the results don't always hold up...the perfect example is intravenous glutathione. While we hear about miraculous recoveries of glutathione, when Dr. Hauser's group in Tampa performed a double-blind, placebo-controlled trial on this therapy, there was no sigiificant difference in the performance of patients who received glutathione versus placebo. So, until studies are performed and results are shown, I would always be skeptical, no matter how promising it sounds. Yours,_________________Hubert H. Fernandez

complementary and alternative therapies

Anonymous
Posted: Fri Jul 24, 2009 9:43 am Post subject: complementary and alterantive therapies

There are time when they and families feel hopless,times when feel desperate about medical situation. In these movement they tend to complementary and alternative therapies, no matter how unrealistic or far-fetched they appear or how they cost. Therefore, there are growing interest for parkinson's patients in alternative and complementary medicine or therapies who will live with disease for a longer peroid of time. The CAM offers helpful information related to non motor and motor symptoms i.e proper diet, exercise, constipation, fatigue, insomina, massage, pain managment, Tai chi, rehabilation,speech therapy,acupuncture,spa treatment & etc. As the result they try the above therapy to minimize their usage of medication they take to increase comfort or minimize effect of the physical or mental on them. Why there are some doctors who do not pleased for the above therapies as they are yet proven? Kindly brief their potential benefits and risks for the complementary/ alterative therapies Regards
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Dr. FernandezJoined: 20 Jan 2007Posts: 90
Posted: Thu Jul 30, 2009 9:00 am Post subject:

I just responded to your earlier message. But know I relaize that CAM means complimentary and alterantive therapies. The good news is that good and proper research is underway on Tai Chi and Exercise. So we will know the exact benefits of those very soon. Our preliminary data on exercise is very compelling though, so we advocate this for all our patients. As for the others, none of the current vitamins work, unfortunately. CoQ10 and creatine are still being studied. Our current (good) data are not impressive for glutathione, Vit E, vit. C, and accupuncture. I hope this helps. Yours,_________________Hubert H. Fernandez



Anonymous
Posted: Thu Jul 30, 2009 8:48 pm Post subject: Exercise benefits

Doctor, I wish you guys would study pilates for pd patients. My husband takes pilates twice a week. He takes 60 minute solo lessons and he really gets his butt kicked. It's not classic pilates but more of power pilates. During all moves, he is encouraged to inhale deeply and give a forceful exhalation upon exertion. Most of the moves require balance from the core. I know it has decreased his falls. Every muscle group is worked and stretched. I know his instructor is especially talented but I truly believe it should be a basic for PD patients. My husband has moderately severe to severe PD and has been doing pilates for 2 years. I hope we never have to rely on PT because insurance only pays for 8-10 sessions then the patient has to decline to receive another PT order. With pilates, we don't have to experience the decline except for the normal progression of pd.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Fri Jul 31, 2009 10:57 am Post subject:

Thanks for the wonderful comments. I have a number of patients who also swear by pilates. I think the exercise must be tailored to the person and what they can handle and suspect the research will show many effective strategies._________________Michael S. Okun, M.D

Anonymous






PostPosted: Fri Jul 31, 2009 2:54 pm Post subject: alternative and complementary medicine Reply with quote

My own experience yields at least one winner and it is evident, for me at least, in two to four days. I know that this is anecdotal but my grant check has not shown up yet. ;-)

The combination of alpha lipoic acid (400 mg) and acetyl-l-carnitine (3 g) boosts me across the board, purportedly by improving mitochondrial function. Dr. Bruce Ames has published on this a dozen or so times and the effect is impressive.
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Dr. Okun



Joined: 19 Jan 2007
Posts: 251
Location: University of Florida

PostPosted: Sat Aug 01, 2009 7:15 pm Post subject: Reply with quote

Thanks for the nice comments.

I have patients who take these supplements and swear by them. We just don't know if they are effective in PD, or against symptoms of PD as we don's have the data. We are therefore not recommending patients expend dollars on them, but at least in my practice I do not object if they would like to try them.
_________________
Michael S. Okun, M.D.
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Sunday, July 26, 2009

PNF Forum:Leg Freezing

teokimhoe



Joined: 03 Mar 2007
Posts: 144
Location: Malaysia

PostPosted: Sat Jul 25, 2009 8:02 am Post subject: Leg Freezing Reply with quote

When you have leg freezing whilst walking instead going forward going backward it is to prevent a fall.

Holding both leg and slap side of both knees to release the freezing

Stay horizon the place where you are to release the freezing.

The reason why you have leg freezing because you are under medication and it is wearing off.

It is strange why the parkinson patient does not have leg freezing problem whilst on cycling?


Is it we walking we concentrate our movement to balanc?


Is it cycling we paddle up and down with one leg after the other?
_________________
to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
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Rogerstar1



Joined: 14 Mar 2007
Posts: 416

PostPosted: Sat Jul 25, 2009 10:36 am Post subject: Reply with quote

It has been my experience that at least in the early years one's voluntary movements (typing, throwing a ball etc.) are affected most during 'off' periods. Autonomic movements like breathing, ducking to avoid or blocking a ball thrown at your face by instinct, moving a leg forward or back to maintain equilibrium and 'break' or prevent a fall are involuntary and hindered only after lengthy disease progression. Thus. willing myself to step off a curb or into a closed hallway or room is sometimes a problem if 'off'. Catching a fall by moving a leg to balance is still mostly an automatic reaction that I simply ...do. But, alas...that ability is slipping away, too. Best to you Tee-Man.

Rogerstar

bernard shaw



Joined: 19 Aug 2008
Posts: 321
Location: Austria Late UK

PostPosted: Sun Jul 26, 2009 12:42 pm Post subject: Bern Leg movements. Reply with quote

I too have these stupid periods where one leg will suddenly stop right in the middle of a step. I have used a walking stick for the last twenty five years and I am sure that it is the stick that stops me falling flat on my face. My last fall nearly a year ago I not only broke the little finger of my right hand but had to undergo an hours operation to fix the break and put the finger lesion back into place and five stitches to close the wound. Painful to say the least. I wish you much luck with your medication, my Neurologist increased my sinemet retard 200/50 by one extra tablet since then the leg movements are better. Keep smiling best regards from Bern
_________________
If your face wants to smile, Let it.
If it doesn't, Make it.
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Saturday, July 25, 2009

leg freezing

When you have leg freezing whilst walking instead going forward going backward to prevent a fall.

Holding both leg and slap side of both knees to release the leg freezing

Stay horizon the place where you are to release the freezing.

The reason you have leg freezing because you are under medication and it is wearing off.

It is strange why the parkinson patient does not have leg freezing problem whilst on cycling?


Is it we walking we concentrate our movement to balance ?


Is it cycling we paddle up and down with one leg after the other?

Saturday, July 18, 2009

secret recipe behind the mask

Secret recipe behind the mask

I often smiled as I watched the video recording of my kick-boxing exercise which I have uploaded to YouTube a few weeks ago. My trainers and videographer told me the same thing – “You do not look like a Parkinson’s patient at all”. Even my doctor shook his head in disbelief and said, “This is shocking. I can’t imagine a 70-year-old Parkinson’s patient doing such a strenuous exercise such as kickboxing. I am sure that you are the only Parkinson’s patient in Malaysia who is doing the kickboxing exercise.”

As early as 1998, I already had both the motor and non-motor symptoms. Since my diagnosis in 2002, I went through a period of depression, anxiety, denial and anger. Subsequently, I bounced back after discovering a secret recipe for fighting Parkinson’s, which consisted of: knowledge (is power), exercise, medications, nutrition / supplements and prayer. In my quest for knowledge, I browsed various Parkinson’s websites, raining them with questions, questions and questions. I even started the first Parkinson’s blog in Malaysia (http://www.hwroteo.com/). I tried to learn everything about Parkinson’s in order to overcome all complications - the Chinese heroes won their battles by understanding their enemies first.
.
Animal experiments showed that exercises may be neuroprotective. Rats which were forced to exercise had a lesser degree of brain damage after they were exposed to poison. In mice which were made to undergo treadmill exercises, there was increased production of dopamine.

Parkinson’s patients are comparable to the car. The medications are needed to help patients to start walking, while fuel or battery is needed to help start the car engine. Exercises are needed to improve the patients’ physical mobility and endurance, while driving helps to recharge the battery. Thus, exercises help our “engines” warm up before leaving home and keep the “cars” going everyday. Even healthy people such as Bruce Lee, the Chinese kungfu master, know that exercises are beneficial.

As such, since 2005, I decided to “get physical”. I am spending 3-4 hours everyday at the California Fitness gym, doing a wide range of “heavy” exercises such as kick-boxing, weight-training and spinning (indoor cycling). Twice a week, I do yoga exercises at home with the guidance of a trainer.

Since this year, my physical condition has drastically improved. I sleep and eat well (I eat to live a healthy and good life). I enjoy driving around the Kuala Lumpur city with my wife everyday and going overseas for holiday. I managed to reduce the daily dose of Parkinson’s medications recently. Sometimes, I wonder whether I am just a “normal person” behind the mask.


Am I a Parkinson’s patient? – Try taking my “killer” punch and you’d wonder whether I really have Parkinson’s.





I know that it is technically difficult to prove that exercise has neuroprotective effect in Parkinson’s patients. Despite this, I believe that exercise has slowed down my disease progression. I hope that my video recording will bring hope and happiness to all Parkinson’s patients in this world, by reminding them that they can still live a physically active life.

Mr. Hero Teo, Kuala Lumpur, Malaysia
10th July 2009.



Hua said...
Hero,You certainly don't look like a Parkinson's patient. Keep up the good work!I'm Hua, the director of Wellsphere's HealthBlogger Network, a network of over 2,000 of the best health writers on the web (including doctors, nurses, healthy living professionals, and expert patients). I think your blog would be a great addition to the Network, and I'd like to invite you to learn more about it and apply to join at Wellsphere.com/health-blogger. Once approved by our Chief Medical Officer, your posts will be republished on Wellsphere where they will be available to over 5 million monthly visitors who come to the site looking for health information and support. There’s no cost and no extra work for you! The HealthBlogger page (http://www.wellsphere.com/health-blogger) provides details about participation, but if you have any questions please feel free to email me at hua@wellsphere.com.Best,Hua
July 31, 2009 10:33 AM

Friday, July 17, 2009

stooped posture

Anonymous
Posted: Sun Jul 12, 2009 7:40 am Post subject: stooped posture

Being a person suffering from Parkinson's Disease (PD), I notice other PD patients, including myself, suffer from a stooped posture, particularly while walking. I would like to share with you my experience in the causation of the posture suffered by most, if not all PD sufferers. I notice that my muscles surrounding my shoulders right down to my arms, are generally very stiff. Because of the stiffness in the said muscles, I have difficulty in swinging my arms when I walk. The swinging of the arms on opposite sides of your limbs, i.e. you swing your right hand when you walk with your left foot and vice versa, during walking gives us the counterbalance required to maintain a correct posture while walking. Due to the lack of arm motion due to the stiffness of the muscles in the shoulder region, the body will naturally be off balance. To compensate for the lack of balance, I find myself exagerating the arm swinging movement, in that I need to push hard with my shoulder to swing the hands forward and backward. This in turn lead to the muscles in the shoulders and upper back to tense up. This result in the body having to stoop forward to maintain the balance of the body during walking. I would be grateful for your input and comments on this.
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Thu Jul 16, 2009 8:57 pm Post subject:

These are all excellent points, however it is not clear the gait is the culprit (or the armswing) underpinning the posture in PD. There are several theories and it may infact vary from patient to patient. Dystonia, muscle rigidity and in rare cases even co-existing muscle disease has been reported. We don't have a great treatment so we recommend medication optimization, PT, OT and stretching!_________________Michael S. Okun, M.D.
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Genetics and parkinson's

Anonymous
Posted: Sun Jul 12, 2009 7:53 am Post subject: Genetics and parkinson's

I notice that I have been suffering from feelings of anxiety and impulsiveness for the pass few years, and this feelings have been particularly strong after I had been diagnosed as having Parkinson's Disease (PD). I overeact even to the most trivial of things, and I would lose my temper and take it out on my family members. I tend to get very sensitive over every tiny issue that crosses my mind. I get depressed and I have the feeling/urge to express myself over and over again on the issues I have problem with. This results in me repeating the same issues over and over again until my "urge" dies down. Furthermore, when I have this "urge"to express myself, I tend to get very emotional and impulsive, whereby I feel the need to immediately do the things to rectify the situation. I will feel very unsatisfied and unfulfilled if things does not go my way. I noticed that my children, particularly my son and one of my daughters, suffer from anxiety as well, and he/she can be pretty impulsive too. Is my feelings of anxiety/impulsiveness a result of PD? If so, please enlighten me on the causes associated with it. Since my son, who is only 36 years old, exhibit the symptoms of anxiety, can it be passed on genetically? For your information, I remember my mother has the same behaviour too
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Thu Jul 16, 2009 9:00 pm Post subject:

It is impossible at this time to say but there are many researchers that believe anxiety, impulsiveness and mood disorders may be genetic and run in some families.

Tuesday, July 14, 2009

strength and mobility

Anonymous






PostPosted: Sun Jul 12, 2009 7:46 am Post subject: strength and mobility Reply with quote

I notice from my exercise, that I do possess strength, for example, I have the strength to hit, box and kick during my exercise. However, I do have difficulty in moving well. Mobility seems to be the problem here. I don't seem to be able to move fast with strength simultaneously. Although I can execute some moves sufficiently strongly, but I lack the speed in execution. Can any one enlighten me on why although I possess strength, I experience difficulty in mobility. I have checked with other patients suffering from Parkinson's Disease and they seem to have the same symptoms as me
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Dr. Fernandez



Joined: 20 Jan 2007
Posts: 90

PostPosted: Mon Jul 13, 2009 7:47 pm Post subject: Reply with quote

You are correct.

Most PD patients will have a greater problem with dexterity, mobility and coordination rather than brute strength.

The explanation for this is the area of the brain affect in PD. The early degeneration occurs in a group of cells called the "basal ganglia"...they comprise the seat of the "extrapyramidal system" of the nervous system and they are responsible for smoothness of movement and coordination. Thus, when they are damaged, PD patients experience stiffness, slowness and worsened dexterity.

In contrast, stroke, for example affects the "pyramidal system"...they are also responsible for execution of movement but the majority of strength is carried by this system. Thus, patient who suffered from a stroke often are weak or paralyzed in the body part corresponding to the damaged portion in the brain.

You can see it as the 'pyramidal system' is responsible for strength and crude movement, while the extrapyramidal system (involved in PD) is responsible for fine tuning of movement.

Yours,
_________________
Hubert H. Fernandez

Sunday, July 12, 2009

NPF Discussion: Secret recipe behind the mask

Anonymous
Posted: Thu Jul 09, 2009 5:48 am Post subject: Secret Recipe behind The Mask

Parkinson’s medications merely relieve the motor symptoms (i.e. tremor, rigidity, akinesia) but do not have any specific effect in slowing down the disease progression. As such, being a progressive and degenerative neurological disorder, Parkinson’s leads to increasing severity of symptoms and gradual decline in the quality of life. Typically, Parkinson’s patients need to increase the daily dose of medications almost every 1-2 years, in order to maintain their physical function. Last year, I needed eight tablets of Requip (2 mg) and three tablets of Sinemet CR (250) daily. My doctor told me that I needed that much of medications to keep me going in the gym while doing long hours of strenuous exercises. Over the past two months, I have been sleeping well (for 6-7 hours) every night after I started on a “sleep cocktail” – Xanax ½ tablet, Seroquel ½ tablet, Lexapro ½ tablet and Stilnox ½ tablet. Prior to this, I could sleep for only 4-5 hours per day. With the better sleep quality, I feel much stronger now. My physical endurance has improved. It is much easier for me to carry out strenuous exercise at the gym nowadays, for up to 3 hours daily. Ever since my stroke last year, I had been finding it difficult to focus on the road while driving. I wonder whether this was due to phobia (I had stroke while driving) or my Parkinson’s. However, the good news is that recently I have started driving again without any difficulty. I have also managed to cut down my medications to two tablets of Requip (2 mg) and three tablets of Sinemet CR (250) daily. Isn’t it strange that I have been able to reduce the daily dose of Parkinson’s medications, while other Parkinson’s patients have to keep on increasing their daily dose? Is it because of the status of Parkinson’s as a “designer disease” – the manifestations (some have predominant motor symptoms, others have predominant non-motor symptoms), physical disability (some are serious, others are not) and speed of disease progression vary a lot among patients. Or is it possible that my profound understanding of the symptoms of Parkinson's, exercise and supplements have successfully slowed down the progression of disease (i.e. disease-modifying or neuroprotective therapy)? My exercise trainers are very surprised that I have been doing much better in the gym compared with more than two months ago. Even my doctor, relatives and friends agree with this. Sometimes, I even feel like a “normal person” behind the mask. I think that I have my own recipe for coping well with Parkinson’s. Kindly give your comment. Regards
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Dr. OkunJoined: 19 Jan 2007Posts: 251Location: University of Florida
Posted: Sat Jul 11, 2009 1:40 pm Post subject:

Thanks for the post. Exercise if like a drug for many PD patients. Your story is interesting. Many patients do not in fact have to increase their doses every year or two. The changes are quite variable between patients and we discourage generalizing based on someone else's experience. It is not clear why you need less medication, but perhaps you were slightly overmedicated before or the exercise and other strategies are helping. Regardless keep up the great work._________________Michael S. Okun, M.D.


Dear Mr. Teo,

It is really remarkable that you have been able to reduce the daily dose of Parkinson’s medications (i.e. Requip). This is in contrast to other Parkinson’s patients who regularly need to increase the daily dose of medications. I believe that there are several explanations for this interesting phenomenon.

Firstly, all of us are aware that you have been more significantly affected by the non-motor symptoms (e.g. depression, anxiety, insomnia) than the motor symptoms. As a result of these non-motor symptoms, you had been having significant lethargy, lack of energy and poor concentration. These symptoms had affected your driving performance, and could have been mistaken for Parkinson’s (explaining why you needed a relatively higher dose of Parkinson’s medications previously).

The very fact that your physical endurance and driving performance improved after starting the “sleep cocktail” suggested that sleep deprivation was one of the major causes of your disability. Any elderly person who does not have enough sleep is likely to suffer from lethargy and poor concentration. Furthermore, treatment with Lexapro (an antidepressant) has also improved your depressive symptoms.

In other words, the recognition and successful treatment of your non-motor symptoms have led to lesser degree of disability.

Secondly, I believe that a combination of optimistic attitude, sound knowledge, good exercise program and effective medications have contributed to the recent improvement in your condition. It is tempting to speculate whether your “heavyweight” exercise program and supplements (anti-oxidants) have successfully slowed down the progression of disease. Exercise is known to improve physical functioning, quality of life, walking mechanism and balance in Parkinson’s patients. Animal experiments have suggested that exercise can potentially minimize toxic damage to brain cells. Nevertheless, currently there is no scientific evidence that exercise and supplements have neuroprotective effect in Parkinson’s patients.

Yes, I fully agree that you have a successful and extraordinary recipe for coping with your illness. This “HeroTeo recipe” has certainly helped you to feel like a “normal person” behind the mask.

Ideally speaking, this is what we hope every Parkinson’s patient to feel like – that apart from their illness, they are normal people. However, I have to admit that this is much easier said than done. Nevertheless, even if Parkinson’s patients are not able to feel like normal, this does not stop them from living a normal life just like anyone else.
Dr Chew

NPF Forum Heroteo Weight Trainning

teokimhoeJoined: 03 Mar 2007Posts: 142Location: Malaysia
Posted: Tue Jul 07, 2009 5:56 am Post subject: Heroteo Weight Training Exercises

http://www.youtube.com/watch?v=wV9FKmVFrvM_________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
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'


wheelersceJoined: 02 Mar 2007Posts: 779Location: MI
Posted: Sat Jul 11, 2009 4:55 pm Post subject:

Mr. Teo, You are one determined guy! Thanks for sharing. Sue W.

PatientslikeMe : Secret Recipe behind the mask

http://www.patientslikeme.com/forum/show/48679

NPF Forum Secret recipe behind the mask

teokimhoeJoined: 03 Mar 2007Posts: 142Location: Malaysia
Posted: Fri Jul 10, 2009 1:15 am Post subject: secret recipe behind the mask

Parkinson’s medications merely relieve the motor symptoms (i.e. tremor, rigidity, akinesia) but do not have any specific effect in slowing down the disease progression. As such, being a progressive and degenerative neurological disorder, Parkinson’s leads to increasing severity of symptoms and gradual decline in the quality of life. Typically, Parkinson’s patients need to increase the daily dose of medications almost every 1-2 years, in order to maintain their physical function. Last year, I needed eight tablets of Requip (2 mg) and three tablets of Sinemet CR (250) daily. My doctor told me that I needed that much of medications to keep me going in the gym while doing long hours of strenuous exercises. Over the past two months, I have been sleeping well (for 6-7 hours) every night after I started on a “sleep cocktail” – Xanax ½ tablet, Seroquel ½ tablet, Lexapro ½ tablet and Stilnox ½ tablet. Prior to this, I could sleep for only 4-5 hours per day. With the better sleep quality, I feel much stronger now. My physical endurance has improved. It is much easier for me to carry out strenuous exercise at the gym nowadays, for up to 3 hours daily. Ever since my stroke last year, I had been finding it difficult to focus on the road while driving. I wonder whether this was due to phobia (I had stroke while driving) or my Parkinson’s. However, the good news is that recently I have started driving again without any difficulty. I have also managed to cut down my medications to two tablets of Requip (2 mg) and three tablets of Sinemet CR (250) daily. Isn’t it strange that I have been able to reduce the daily dose of Parkinson’s medications, while other Parkinson’s patients have to keep on increasing their daily dose? Is it because of the status of Parkinson’s as a “designer disease” – the manifestations (some have predominant motor symptoms, others have predominant non-motor symptoms), physical disability (some are serious, others are not) and speed of disease progression vary a lot among patients. Or is it possible that my profound understanding of the symptoms of Parkinson's, exercise,diet and supplements have successfully slowed down the progression of disease (i.e. disease-modifying or neuroprotective therapy)? My exercise trainers are very surprised that I have been doing much better in the gym compared with more than two months ago. Even my doctor, relatives and friends agree with this. Sometimes, I even feel like a “normal person” behind the mask._________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
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wheelersceJoined: 02 Mar 2007Posts: 779Location: MI
Posted: Sat Jul 11, 2009 4:43 pm Post subject:

Hi, Teo, I'm glad you're doing well. As you say, PD is very individual. Not many of us could work out 3 hours a day, but I'm sure whatever exercise we do, with other good health habits, is beneficial. Best regards, Sue W.
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StargazerJoined: 26 Dec 2007Posts: 214Location: Eastern Washington
Posted: Sat Jul 11, 2009 5:33 pm Post subject:

Teo I find your post very interesting, the group of meds you take were they all prescribed by your Dr.? I do not even know what some of them are for I must look them up. I also find your statement, " Sometimes, I even feel like a “normal person” behind the mask." I look at my pictures that have been taken that is exactly what I think, why do I look like that I feel great or am happy. Teo keep it up you are doing it right as Sue said most of us do not have the 3 hour time but I realize even a hard day of work makes me feel much better. Thanks for sharing. Deeann
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Rogerstar1



Joined: 14 Mar 2007
Posts: 413

PostPosted: Sun Jul 12, 2009 3:24 am Post subject: Reply with quote

Teo-
You must be doing something right if you're feeling better and doing bertter. I wonder what would happen if you cut back a tablet of the CR 250 Sinemet. Or, for that matter if you were to add a half tablet or shorten interval and add a fourth. Any thoughts on this? What are your intitial wearing off symptoms?
Thanks for sharing and contrinued success with your program. Roger
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NPF Discussion: recipe to stay normal

Anonymous






PostPosted: Tue Jul 07, 2009 9:16 am Post subject: My receipt to stay as normalReply with quote

As Parkinson is a progressive disease the medication of Parkinson are not the treatment but they are only help to relief the symptoms i.e tremor, rigidity,akinesia postural instability (T R A P).

It is a chronicles disease, a degenerative neurologic disease. Degenerative disease means declining in quality thus the disease increases in severity over time.

It is a designer's disease some are more serious and some less serious . The similarities among these diseases can make diagnose difficult and frustrating.

My early prescription are eight Requip 2 mg and six Sinemet daily. I received a heavy doses as was told I amo doing long hours exercises at gym centre. I am taking the prescriptions for the past of eigth monhts.

There have been increased interest that exercises, diet,nutrition,supplements and understanding of the disease besides medication are the disease modifying or neuroprotective therapies that they slow the progression of parkinson's.,studies consistently report that those with PD who exercise regularly tend to do better than those who do not.

Healthy diet can help us achieve or maintain normal body weight, increase our energy level, boost our immune system, decrease risk factors for certain conditions or illnesses, and reduce constipation. It can be particularly helpful for people with PD to pay close attention to issues of diet and nutrition as poor nutritional status can result in, and contribute to, many of the common complaints associated with PD. For example, difficulties with swallowing can prevent people with PD from getting adequate nourishment, which can lead to a worsening of motor symptoms and increased weakness resulting in falls.

In addition to promoting overall physical and emotional health and well being, exercise tends to minimize some of the primary and secondary symptoms of the disease. Though exercise is not a cure, it can help people with PD maintain muscle tone and function, remain flexible, and improve overall mobililty.



At present I optimize my prescriptions to 2 Requip and 3 Sinemet daily.

Is it my understanding the symptoms of parkinson's and the management of the disease slowdown the disease progression?

Is it I am putting on masked face that I look as normal ?

Is it parkinson's a designer's disease that parkinson patients find difficulties doing hourly daily exercises?

Is it my hourly heavy exercises daily help me to put on masked face as normal?

My physcial exercise trainers surprise that I am doing better than the normal during my physcial training exercises.

My doctor, relatives, friends agree too.

The above are my recipe for living well the disorder disease.

Kindly comment

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Dr. Okun



Joined: 19 Jan 2007
Posts: 251
Location: University of Florida

PostPosted: Sat Jul 11, 2009 1:36 pm Post subject: Reply with quote

Thanks for your comments.

There are often many motor and nonmotor symptoms in PD and they usually stretch beyond the TRAP symptoms you mention. PD is a designer disease in that it is different in different people and treatment approaches must be tailored.

Exercise may improve the symptoms of PD. How much and how often and in which patients is unknown.

Exercise is thought to maybe modify disease progression or be neuroprotective but this is also unknown.

Some people believe exercise or instrument playing (trumpet or clarinet) improve facial expression but there is little data on this phenomenon.
_________________
Michael S. Okun, M.D.
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Wednesday, July 1, 2009

Box and Kick Exercises

teokimhoeJoined: 03 Mar 2007Posts: 138Location: Malaysia
Posted: Wed Jul 01, 2009 5:44 pm Post subject: Box,kick and hit exercises in Gym centre

http://www.youtube.com/watch?v=sTpu_zBvDME_________________to help the PD patients aware the diseases and encourage to set up support groups to educate the patients and their immediate families
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seaJoined: 14 Aug 2008Posts: 132Location: New York City
Posted: Sat Jul 04, 2009 11:47 am Post subject: boxing with PD

Mr. Teo, Thank you very much for posting the video of you boxing and kickboxing. It is very inspiring indeed, and you seem to be doing really well. It's great to see! Also, you are lucky to have an understanding and effective trainer. Good for you, for doing such exercise.
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Rogerstar1Joined: 14 Mar 2007Posts: 412
Posted: Sat Jul 04, 2009 12:01 pm Post subject:

You're looking good Teo!.....:-). Rogerstar1
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wheelersceJoined: 02 Mar 2007Posts: 776Location: MI
Posted: Sat Jul 04, 2009 2:45 pm Post subject:

Teo, Thanks for sharing, this is great. I'm sorry you're the only Parkinson's patient in Malaysia to benefit from this,though. Best regards, Sue W.

23andME PD Genetic Research

adiazJoined: 09 Feb 2007Posts: 15Location: Miami, FL
Posted: Wed May 06, 2009 4:30 pm Post subject: 23andME PD Genetic Research

The National Parkinson Foundation and 23andMe are partnering on a genetics research initiative and you can participate! All it takes is $25, a small saliva sample, and a willingness to participate in online surveys. The partnership between NPF and 23andMe will allow up to 10,000 people with Parkinson's to receive a reduced membership rate to the Personal Genome Service. The goal is to use the genetic information of those with Parkinson’s to enhance our understanding of the disease and accelerate new discoveries and therapeutic breakthroughs. What else can you learn from your genes? We encourage you to visit the 23andMe web site to learn more about their project. The reduced rate of $25 (reg. price: $399) is only for people who have been diagnosed by a physician, but we encourage non-patients to spread the word to people with PD. This discount is due to the generous support of Google co-founder Sergey Brin. If you are a person with Parkinson's disease and decide that you would like to participate in this innovative research project, fill out the online form to request a code to use to access the $25 price.
To request a discount code visit: www.parkinson.org/23andMe For details on the project visit: http://www.23andme.com/Parkinson's and Genes Just a few years ago, genes were thought to have little influence on Parkinson's disease. But now a growing number of Parkinson's-causing mutations are being discovered. We think we can learn even more with the help of 10,000 people willing to share their experience A New Kind of Research You can help revolutionize the way Parkinson's research is conducted. Parkinson's is a complex disease with both genetic and environmental components. By participating in this initiative, you'll be joining an unprecedented effort to understand how the two work and interact. You'll also see the progress of this research as it moves ahead.