Tuesday, February 21, 2012

Letter to an Old Friend With A Husband Newly Diagnosed With Parkinson's Disease

Hi Anni, Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.

As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association.

 But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health.

 Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.

There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.

Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge. There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come.


Peter Dunlap-Shohl said...

The ever-thoughtful Adele sent the following addendum to the thoughts above
1. If the first Parkinson's medicine you take is a dopamine agonist (I take Requip), it may make you feel quite ill. Keep taking it. The sick, nauseated, hungover feeling will fade after an hour or two each day. Eventually, your body will be used to it and you won't feel bad anymore. Candied ginger and saltine crackers are useful things to keep on hand while you are adjusting to the medicines.

2. When and if you take any of the carbidopa/levodopa drugs, like Sinemet or Stalevo, it is very important to limit the amount of protein you eat. Some people can get by with just limiting meals to two hours before or one hour after taking their carbidopa/levodopa. I cannot. If I completely limit my diet to no meat, no cheese, no milk, and no whole legumes (peanut butter and hummus, in small quantities, each seem ok to my system), then I can pretty much eat whatever else I want to eat whenever it is convenient. If I have even a little of these protein foods, I can guarantee I will feel totally Parkinsonian for the next 4 to 6 hours. I "knew" this. I had discussed it with my doctor, seen a nutritionist, and read a lot of articles and parts of books, but until I actually stopped eating the big pieces of protein, I never realized how much better my medicine could make me feel.

Peter Dunlap-Shohl said...

The protein problem can be quite a conundrum. I've been told by Dieticians we need a serving a day that is about the size of a deck of cards. So what to do?
the best approach, for me at least, is to save protein for the final meal of the day. That way if I am not able to move well I've had plenty of time earlier in the day to take care of what needs to be taken care of.