It’s been a while since my last update about life with Parkinson’s disease. As far as health is concerned, I’m doing well. My drugs are still effective; I walk 4 miles a day (with my trusted cane), meditate and stay as far away from stress (good and bad) as I can. However, I have noticed a slight tremor in my left hand as opposed to my main tremor in my right hand. There are some differences in its development for I remember all too well how my right hand started to shake. Though PD is mostly confined to one side of the body, it can develop in the adjacent side. My instinct tells me that the left hand will stay inconsequential as it is.
In September, I will enter a research clinic and do a 26 day clinical trial for the same drug I tested last fall. This will be the second phases of the study with improvements to the drug as a result of the first phase. The emphasis is to lower the side effects of Parkinson’s stalwart medication, ‘carbidopa-levodopa’. This is the top PD drug but after taking it for 5 years or so the side effects become enhanced and there is a notable uncontrollable physical consequence causing one to self-estimate dosages according to the severance of side effects.
In addition, a second emphasis is to make the drug last longer. I take it three time’s day, but it would be great if I only had to take it once in a 24 hours period.
I will have my laptop with me for the month so I’m planning on doing a lot of writing and sharing of what the day to day routine is like during a clinical trial.
My appointments with my neurologist in North Carolina was every 3 to 4 months. Each appointment cost $100. Considering how thorough he is with my examinations, I thought the fee was in line. When I moved to St. Augustine, I knew that one of the top neurological centers for Parkinson’s is in Gainesville, Florida. So I called up and set up an appointment and they notified me that the fee per visit is $250. This to me is one colossal farce. What good is being the best if your patients can’t afford you? This was not unlike my learning curve on drug prices, a prescription can cost anywhere from $12 to $700 for a one-month supply… the same pill, the same dosage, the same doctor but different pharmacy’s. You’ve got to shop and compare prices. I’ve now decided that I will keep my neurologist in Raleigh and travel up to North Carolina every 4 months to see him until I can find another doctor close to home
It was bound to happen, but I had hoped it wouldn’t. I went to see a customer to give an estimate for work she requested. I wasn’t in the house for 5 minutes and she asked me to leave. So I left perplexed and then my phone rings and I answer. She was not aware that I own the company until she heard my voice. She had called to report me because she thought I’d been drinking. After apologizing profusely and I accepting, I arranged to go back. But why does it have to come to this? Parkinson’s is a double edge sword for it is a physical disability but also it affects cognitive thinking. So I chose my words wisely which may cause one to think I’m indifferent or I don’t care and this is what she noticed. I guess that is why I love to write, I can take as much time as I want to.
In most cases, people are generous with their compassion; a slight smile, a bow of the head or coming right out to ask what is wrong. And the biggest change in attitude came from me. Before Parkinson’s I went around unaware or indifferent… I just didn’t see, I don’t mean with my eyes, I mean with my heart.
To find out more about my struggle with Parkinson’s decease please go to my page on PD at Parkinson’s Disease.
© 2015 JC