When I was diagnosed three years ago, I was determined to do everything in my power to stay off medication for as long as possible. As we all know, there isn't any medication which slows or stops the progression of Parkinson's and long term use often leads to troubling side effects like dyskinesia. Within weeks of my diagnosis, I was delighted to learn about Dr. Costantini and high dose thiamine. I still take high doses of thiamine each day along with a number of other supplements.
But by last December, I could still hope the supplements were helping to slow the progression of PD, but I knew that they had not stopped it. Very slowly, very subtly, I was getting worse. My handwriting was worse, my gait was worse, I developed dystonia in my toes while exercising, my shoulders were painful and tight at 1 o'clock every afternoon, my wife noticed that I was often in slow motion even when I didn't realize it, and simple things like cutting my food and opening containers became more difficult.
With a combination of shame, sadness, and resignation, I went to my neurologist in December and asked for medication. I began taking Sinemet.
I know we are all different, I am VERY afraid of dyskinesia, and I have no expectation that this will last forever, BUT I want "newbies" to know that at least for me, Sinemet has been a Godsend. I am 58 years old. I no longer have the luxury of assuming I will live to be healthy at 85+ like my dad and grandparents. I may not make it to 70. I may not make it to 60! There are few guarantees in life for me, but I know this: Today and tomorrow are SIGNIFICANTLY better with Sinemet. It eliminates every symptom of Parkinson's for me without any side effects.
I am very frustrated that the "gold standard" for our treatment is virtually the same in 2021 as it was in 1971, but it is what it is. I'm encouraged by Pallidothalamic Tractotomy (PTT), stem cells, gene therapy, and even by pharmaceutical trials, but at least for now, Sinemet is the best thing I have found. I will enjoy today because tomorrow is not guaranteed. I will take my medication. Gladly.