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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Managing our PD Treatments

Terri Reinhart

The challenge of managing Parkinson's disease - written for PhRMA Conversations

 

I believe one of the biggest challenges we face with Parkinson's is the management of our therapies. The medical world tends to rely heavily on prescription drugs and surgical procedures such as Deep Brain Stimulation (DBS) to help us control our symptoms.

I do not feel qualified to write about DBS surgery as I will not consider this treatment. This was a decision made after much thought, research, and discussions with family and friends. I am sure others will speak on this topic.

While I am incredibly grateful for medications which make it possible for me to continue walking and functioning as normally as possible, they also create other issues. Drugs do not have side effects, they have effects, and we need to pay attention to all the effects of the drugs we are taking. In Parkinson's disease, this can be very challenging as so often we are taking 6 or 7 different drugs in our attempt to manage our health. Questions need to be asked: Are we being prescribed another drug because of our Parkinson's or is it given to us to help us cope with the effects of another drug? Are all these drugs necessary? Are there other ways to treat the symptoms with exercise, diet, or lifestyle changes?

It is often said, it takes a cocktail of drugs to treat Parkinson's. This cocktail can include a dopamine agonist, Selegiline (as a neuroprotective), Comtan (makes Sinemet more effective), Provigil (prevent daytime sleepiness), a drug to help sleep at night, and an anti-anxiety drug as well as Sinemet. It can be almost miraculous in helping people with Parkinson's to live a normal life or it can be a time bomb resulting in physical and behavioral effects such as obsessive/compulsive disorder (compulsive gambling, eating, shopping, sex), disinhibition, hypersexuality, delusional behavior, increased heart rate, and weight gain, among other things.

The most frightening part of this is how the effects can creep up slowly over time to the point where we don't realize the medications are causing these effects until they have damaged our relationships with friends, family, and coworkers, sometimes irrevocably.

So what can we do?

I would like to see a team approach to Parkinson's disease with neurologists, physical therapists, nutritionists, and psychologists working together with patients and their partners or advocate of their choice. Drugs need to be prescribed and monitored very carefully and alternatives to drugs should be considered before simply automatically prescribing one more medication. Experts agree that exercise can improve symptoms of Parkinson's disease and may even delay its progression. I would like to see more studies on the effect of diet on Parkinson's and also studies on the use of Cannabis with Parkinson's.

More than anything, I would like to see a change in attitude towards the management of Parkinson's and other chronic disorders. Can we find a balance between medication and lifestyle changes? Can we be less dependent on pharmaceutical drugs to make us “normal”?

How normal do I have to be, anyway?