Be Your Own Best Advocate

In a former article about the "7 Healthy Habits of People with Parkinsons," the first habit I mentioned was the need for self-advocacy.

Recently I discovered just how important that can be. Developing a urinary tract infection (UTI) and being weaned off Rytary and starting selegiline created a perfect storm.

The course of antibiotics prescribed for the UTI was not effective. My primary care physician advised me to get to the ER immediately.

Becoming my own best advocate

After being treated for dehydration and the UTI with IV antibiotics, I was told I was to be discharged that afternoon and sent home with an oral antibiotic.

I questioned my continuing inability to stand or walk. Admission for observation was only agreed to after a meeting of the board of supervisors. I was informed that Medicare might not cover admission and I would be held liable for any charges.

At my request, our secondary insurance provided me with the necessary codes should we need to dispute the charges. It wasn’t easy to come across so forcefully, but I had no other choice. It was imperative to find the cause of my symptoms.

Advocating for myself changed treatment

Once I was admitted to the hospital, the underlying causes for my immobility became a priority. Since being diagnosed with Parkinson's in August of 2020, multiple changes to dosages and medications had been made.

I tolerated low dosages of Sinemet for a time but as it was increased in strength, I developed major side effects. A loss of consciousness led to a trip to the ER. My "off times" on Sinemet were causing more symptoms than were being alleviated. Changing to Rytary yielded similar results.

By keeping a daily log, my neurologist realized I was having more symptoms about an hour after a dose than before it was taken. I had no symptom-free time. On a half dose of selegiline I experienced violent headaches, double vision, and spiking blood pressure.

Changing the dosage

Subsequently all Parkinson’s medications were stopped. It was determined that I am highly sensitive to medications. My extremely small size also added to the intolerance to high doses. After a week of no medications I felt better than I had in years.

No Parkinson’s symptoms were apparent other than a very slight rigidity in the morning. I was slowly reintroduced to Sinemet at 2.5 MG twice daily.

Continuing with that dosage showed no adverse effects or additional Parkinson’s symptoms until recently. I once again developed tremors half an hour after taking it.

The hidden culprit

Seven years before my Parkinson’s diagnosis, I was diagnosed with a rare movement disorder known as orthostatic tremor syndrome. Not to be confused with orthostatic hypotension, this is a rare orphan disease that manifests as tremors upon standing.

The tremor stops when seated or in motion. Like Parkinsons, there is no definitive cause or cure. The only available treatment involves medications similar to those used to treat Parkinson's, although Sinemet is not generally prescribed.

I did well on the prescribed medications for several years. Orthostatic tremor syndrome does not develop into Parkinson's. However, I did begin to manifest some signs of Parkinsonism.

After experiencing 2 episodes of freezing, Sinemet was prescribed. Since it seemed to address the freezing, I was diagnosed as having Parkinson's. In hindsight I know the freezing only occurred if I stopped moving. I do not mean to imply misdiagnosis, but simply that the additional medications were masking an underlying issue.

Lessons learned

Rehab with intensive therapy was the next step to regain mobility under the auspices of excellent therapists and hard work. Even without the medication for the orthopedic tremor syndrome, I was able to be discharged.

My neurologist suggested reintroducing primidone to address tremors. After a week of a low dosage I needed to stop taking it due to side effects. Currently I am on 2.5 MG twice daily of clonazepam and tolerating it well.

Continuing with physical and occupational therapy is proving invaluable as I regain strength. Teaching me to relearn how to navigate in my home environment is a real confidence booster as well. Within 3 weeks I am getting back to where I had been several years ago. No freezing, falls or tremors at rest.

A cautionary tale

What I have learned is that I know my own body best and need to be an active participant in my health care even when it requires questioning accepted treatment.

This article is not meant to suggest that anyone stop medications unless under the diretion of your doctor.