Dystonia & Personal Health

by Noel Valero

Dystonia affects our lives but should not run our lives, or compromise other aspects of our health. We can all live long useful lives, although perhaps not the ones we envisioned for ourselves. In order to do that, we need to focus on our overall health and as well as on our Dystonia. The big “D” will not kill us, but secondary illnesses and infections can. We have to be on guard to prevent these secondary problems.

Personally, my neurologist and I were so preoccupied with the big D that we lost sight of the Carpal Tunnel Syndrome developing in my right hand until it was too late and surgery was required. Luckily, the surgery helped and I regained 50% use of that hand. Had I not been so preoccupied with my Dystonia, I might have acted more quickly and retained more of the use of that hand today. What I learned from this experience was that I better take really good care of my left hand, which is now picking up some of the load my right hand use to do, making it that much more susceptible to carpal tunnel syndrome. To reduce this risk, I worked with my orthopedist to put protective braces on that hand and do exercises to prevent losing any function with that hand.

With a chronic disease, many of us also have weakened immune systems so we can’t afford to let our guard down. All of us should get our pneumonia and flu vaccinations. Secondary bacterial and viral infections such as pneumonia, meningitis, or the flu are particularly dangerous to us. Since Botox is derived from bacterial toxins, there is also no way of knowing how broadband antibiotics will affect those of us on Botox treatments.

There are also two ways that Dystonia can affect our metabolisms. Some of us don’t seem to be affected but many of us either gain weight or lose weight. I am part of the latter group. I need 3000 calories just to maintain my weight. Sounds like a great thing, right? Unfortunately, it is not. I have to maintain a good diet of 3000 calories with no junk food, fatty fast food, and no sugar or high simple carbohydrate foods. Why? An excessive amount of sugar and simple carbs can lead to development of Type 2 diabetes.

Diabetes has a wide range of side effects, some of which includes loss of vision, peripheral neuropathy, or loss of circulation in the extremities. My non-Holiday diet consists of steamed vegetables, fresh leafy vegetables, legumes, lean meats (beef, pork, and poultry parts which have the word “loin” in it, seafood, complex carbs such as brown rice and sweet potato, and multigrain breads and bagels. Note that the above is also a “Heart Healthy” diet because the last thing we need is cardiovascular disease. This is a particular concern for those of us who gain weight because of Dystonia.

One obvious path is weight loss, however if the excess weigh is a side effect of a chronic disorder, losing the weight may be easier said than done. In this situation, any form of exercise to raise your heart rate will help. Walking on a treadmill or riding a stationary bike will help if you can’t walk outside or ride a real bike. My CD causes a loss of balance such that bike riding, skiing, and snowboarding are out of the question.

Finally, we need to be regularly monitored for our overall health; I see my internist four times a year for checkups and blood tests to make sure my glucose, blood pressure, hemoglobin, and cholesterol levels are within healthy ranges. Type 2 diabetes and/or cardiovascular disease can further complicate our lives or worse, shorten it. I just went through my first colonoscopy with good results. Mammograms should not be ignored as breast cancer is more dangerous than Dystonia. We can’t let our health guard down thinking there is nothing worse than Dystonia. There is something much worse: Dystonia plus a second chronic illness or a ravaging infection. If we forget to fight the complete fight to stay healthy then Dystonia has defeated us.

Noel Valero is the founder of American Dystonia Society and a person with Dystonia who says, "I want to share my thoughts and experiences with you as a fellow Dystonian."