After a certain point in a Parkinson’s Warrior’s life, which comes at a different time for everyone, when medications are beginning to cause worse symptoms than they relieve. Carbidopa/Levodopa begins causing severe dyskinesia, and dopamine agonists begin causing addictive behaviors that can hurt relationships. It’s at that point when the person and their care team ask themselves, can Parkinson’s be managed without medication?
Well, first we need to define what “managed” symptoms mean. If you mean, can you feel normal or mask symptoms without medications, the answer is no. If you mean can you survive, then sure, yes. In the early days of my Parkinson’s, I didn’t want to take medication because that would have meant surrendering to the disease, and all the psychological distress that entailed. I can’t tell you how great I felt after my first dose of carbidopa/levodopa. It took me back to feeling normal. I could do so much more, including more intense exercise, which helped improve things even further.
But then I began having those horrible side effects. For some it might be to go off medications and focus exclusively on exercise, which is the only disease-modifying activity we know of. For me, it was to have deep brain stimulation surgery, which allowed me to reduce the amount of Carbidopa/Levodopa by about 90%. The C/L is still needed, not as much for movement as for mental agility, which DBS does not help with.
Yes, you can carve out a basic existence without medication, exercising daily, eating the right foods, and treating your body with massage and physical therapy, but why would you want to? You only live once, and ideally, you should try to live the best life you can each day. Speak with your movement disorder specialist and say you want to mix things up. Ask about how natural supplements might help. Ask about procedures like Duopa pump and DBS, which can help with symptoms. There is no right or wrong answer. Work with your doctors to see if they can get you going on something new – new medications are coming out all the time, and it might be worth trying out something different. You have little to lose and a lot to gain. Never give up!
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Nick Pernisco is the Parkinson’s Warrior, a person with Parkinson’s who has dedicated his life to helping others with Parkinson’s. Get the Parkinson’s Warrior book here. Join the discussion on Facebook.