March 28, 2023 – Diagnosed with Parkinson’s

I may have mentioned that I have had a tremor in my left arm since before my discovery of metastatic prostate cancer.  Back then I had gone to a neurologist who wanted to perform some tests for Parkinson’s.  Instead I prioritized dealing with the cancer.

Well, with my prostate cancer seemingly under control 6 years later, I decided to seek a movement specialist to deal with my tremor.  Here in this part of South Carolina there is one movement specialist in Savannah.  There are neurologists, but not those who specialize in movement disorders.  As a result, it took me 6 months to get an appointment with Dr.Trumble.  We drove to Savannah and saw her.

She did what I now know that all movement specialists do—put me through a bunch of movement tests.  One of the key tests is my walking gait.  Others like moving my limbs in opposite directions, toughing my finger to my nose, etc.  The bottom line:  She said it is very highly likely that I have early stage Parkinson’s.  The tremor on my left side is part of it and is not simply an essential tremor.  She explained that the most popular treatment for the past 40+ years is Carbidopa/Levodopa, Sinemet, Duopa, or Rytary (extended release form).  It tends to counteract some of the Parkinson’s symptoms such as the tremors and brain fog.  She did not feel I should start taking this drug yet (ascribing to the “limited period of effectiveness” theory).

New Doctor

I then started my research.  I wanted a second opinion and someone who was associated with MUSC, where my oncologist resides in Charleston.  MUSC has more than one movement specialists, but I was told that one of the best was Dr. Lillia Lovera.  I called with a referral from my oncologist to get an appointment.  The earliest was almost a year into the future!  I took it and asked to be called if there was a cancellation.  Within a few hours I received a call from Dr. Lovera’s office to tell me there was an opening the next day!  Needless to say, I drove the 100 miles to MUSC the next day.

Dr. Lovera’s examination was more thorough and she ordered a bunch of cognition tests.  The bottom line was the same:  I definitely have Parkinson’s with some symptoms such as gait and slightly lower mental acuity.  She recommended that I start on Carbidopa/Levodopa right away because there is no evidence that early starting has anything to do with later effectiveness.  She said it should help with both the tremor and the mental acuity.  She also suggested that I get into an LSVT Big exercise and training program.

The LSVT program was every day for a month and it taught me how to better deal with balance issues and to improve my gait.  One thing that Parkinson’s does is make movement smaller, even to go so far as to making the voice smaller.  I did a lot of yelling, stretching, and getting up off the floor various ways. The real challenge was when the therapist had me stand on one of those hemisphere exercise balance device and close my eyes while she shoved me from different angles.  What a balance challenge!   It was a great program.

I am taking three Carbidopa/Levodopa pills per day.  It took a couple of weeks to not feel a little nauseous but I do think they help with the tremor and brain fog.  I am also taking Vitamin B-1 once sublingually per day.  I read a book on this and other Parkinson’s patients have said that it has helped a lot with symptoms.  I think it has a positive effect on me.  Last, I am taking two capsules of Rivastigmine per day to hopefully slow down the brain drain.  This is at the suggestion of the neurologist.

Plumbing Problems

Not long after the first diagnosis of Parkinson’s I encountered a new problem.  I couldn’t pee because the sphincter muscle locked tight.  The solution was for me to self-catheter to push through the muscle. My urologist and neurologist had no direct explanation for this because it could be caused by injury from the kidney stone removal or by Parkinson’s.  For several months I carried catheter tubes around with me to use every two or three hours.  I was okay with this because there is nothing like the pain of not being able to pee.

PSA

While all of this was happening, my PSA stayed “unmeasurable”.  My oncologist had retired and I was being treated by a wonderful student doctor while MUSC was trying to get a replacement.  This went for almost a year until they hired Dr. Thai Ho from the Mayo Clinic in Arizona.  I finally had an appointment with Dr. Ho in July, 2024.  He told me I should have been having CT scans every year at minimum and set me up for a scan in March, 2025.  My last scan was three years before, which I had insisted back then.  My thinking back then was the same as his:  We were relying too much on PSA as a measure of my health.

Les