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