Why do I feel stuck?

As my Parkinson’s disease (PD) symptoms worsen, my desperation to find relief increases. I constantly tell myself that if my symptoms don’t progress from where they are now, I can handle my dealt cards. However, I feel my ability to stay strong will be increasingly challenged as time goes on.

Between a rock and a hard place

The idiom “between a rock and a hard place” is an American manifestation of a phrase found in ancient Greek mythology. In Homer’s “Odyssey,” Odysseus must pass between Charybdis, a treacherous whirlpool, and Scylla, a man-eating monster on a cliff. My situation is not as dire as facing Charybdis or Scylla. However, at times, I do feel that way.

When I consider my potential supplements, I feel stuck between a rock and a hard place. I am so overwhelmed with all the treatment and “cure” options (medical as well as naturally occurring) available for PD. They come to me via emails from well-intentioned friends, social media, and postings to my PD columns and blogs.

Although I continue to do the holistic things within my control to battle this disease (mainly gluten-free and vegan diets as well as regularly exercising, reducing stress levels, and getting plentiful sleep), I don’t think these actions alone are enough to battle this disease.

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Taking prescription medications (my Scylla) goes against my grain. I also do not want to load up on vitamins and herbs (my Charybdis) since I feel these supplements end up passing right through me without having any impact on my symptoms. They drain my wallet, and I end up hopelessly wishing each item will be my miracle remedy. I’ve intended to avoid medications and other forms of treatment by continuing with my current diet and exercise regimen. However, this no longer appears to be an option.

What about medications?

While I do use Sinemet (carbidopa-levodopa) and Neupro (rotigotine), I am concerned about the long-term effects of these medicines on my body. I am also not a fan of Big Pharma remedies. I do not believe it is in the best interests of pharmaceutical companies to find a cure for PD because their monthly revenue streams would collapse if patients no longer needed to take daily medications to keep symptoms at bay.

Even with a prescription drug plan, medication costs are astronomical. Although some pharmaceutical companies may offer aid to help cover the cost of their medications, it is often short-term help. In September, a Sinemet shortage happened in the United Kingdom and other countries, which added to the stress of prescription medication reliance.

‘Naturally occurring’ remedies?

Many have jumped on cure bandwagons, giving so many of us suffering individuals false hope. I believe most of these claims are from shysters and snake oil salespeople without scruples or compassion. These companies and individuals post such convincing testimonials about how some obscure herbal remedy or supplement has cured their PD. These frequently appear on my PD blogs and articles.

I have also read articles that I believe come from valid sources concerning the efficacy of the following treatments:

• Thiamine
• Glutathione
• Cat’s claw
• Cinnamon capsules
• Mucuna pruriens
• Essential oils
• Ubiquinol (CoQ10)

I tried each of the above individually, and none has resulted in any discernible symptom relief.

There are so many challenges when trying to decide on “naturally occurring” supplements to take. Should it be taken orally? If so, in capsule or liquid form? What about intravenous? Which brand to choose? All may not have good quality control, so who do I trust? Such is the dilemma one faces when choosing the “naturally occurring” path.

Other options?

I saw a TV commercial for a local practitioner offering therapy for PD using one’s own stem cells. Their website had a compelling video of a patient’s testimonial on how much this treatment had helped him. The cost? $10,000. If this treatment was guaranteed to help my symptoms or stop my progression, I would beg, borrow, and steal to come up with the $10,000 to do it. Since there are no guarantees, this option is a nonstarter.

Stuck in the middle

PD symptoms vary greatly from one patient to another, and certain treatments will work for some while not for others. As such, like many others with PD, I am still searching for that elusive miracle that will stop the disease in its tracks and allow me to feel normal again.

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Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to Parkinson’s disease.