Subcutaneous Levodopa/Carbidopa Pump Study Extended!
As you may know, for the last two years I have been involved in a study in which I am receiving my carbidopa/levodopa subcutaneously (under the skin) via a pump. This is similar to the pumps used to treat diabetes. The results have been miraculous. My dyskinesias and tremor have almost completely gone away, and I am no longer dragging my right foot when I walk. My off periods (times in which the medication is not working) have gone from 8 hours per day to 1! Unfortunately, it does not seem to help with fatigue. Chronic fatigue is one of those things that you can only understand if you have it.
The thought of going back to the way I was before using the pump is unfathomable. People ask me questions like, “What will you do if it is not approved by the FDA?” or “What if it is approved but not covered by your insurance?” I shrug off these questions and smile. While I am not living in denial, one thing I have learned from the Parkinson’s community is that you live for today. From time to time, I wake up thinking about it and then, my mind is full of dread. This is when that little voice inside my head asks, “Can you do anything about this?” Of course, the answer is no. The next thing the little voice asks is, “What can you control?” So, I get up and go to work. The voice inside my head often adds, “And be grateful for today.” He can be a real smug asshole, but he is correct. Author's note: “Microsoft Word just notified me that the word “asshole” may be offensive to some readers.” The little voice inside my head responded and told Microsoft Word to “Fuck Off!”
Fortunately, the clinical study site coordinator called and informed me that the open label phase has been extended until the treatment is approved by the FDA! I am grateful for this news and as Michael J. Fox says, “Gratitude makes optimism sustainable.”
Pinched Nerve
Starting in late August, I have had great difficulty walking due to pain that starts in my hip and radiates down the side of my leg. Two sets of Xrays, 2 MRIs a steroid injection and over $500 in copay later, I was diagnosed with a pinched nerve. On December 16, I will undergo a IR Epidural Transforaminal Nerve Root Block. Hopefully, this will relieve some of the pain.
The Holidays
Like many other people, during the holidays, I take an inventory of people and things that I am grateful for. This year, I am grateful to have such wonderful friends, family members and colleagues. My son, Ocean and wife Kate are constant source of support.
I am also grateful for my sobriety. October 31, 2022 was the 25th anniversary of my sobriety. I will always remember my last weekend of drinking and making the decision that it would be my last. I find that when I look back on the things I have done, there are very few that I accomplished on my own own. My sobriety is no exception. Recently, I remembered that I did not walk away from alcohol all on my own. The fact is that my friend Ginger came to visit and somehow managed to convince me to quit. It was when I saw her in a taxi, pulling away from the curb that I decided to quit. Ginger, I know that it is 25 years too late, but thank you and I am sorry. I am grateful for our friendship.
Dear Reader, (homage to S.K.) thank you for making it to the end of this post, but I think that this is a good place to end it. It would be great if you could leave some comments below. The only comments I ever get are from scam artists selling miracle cures.
I wish you and your family a happy and safe holiday season.
