Day 48
Today is the 41st day of taking a full dose of my medication (Azilect) and the 6th day on a half dose of Pramipexole. My assumption is that I will not see effects until 2 to 3 weeks from the day that I begin to take the full dose. I am very hopeful because I just cannot accept that my current condition will be the "new normal."
Warning: My train of thought has always been a roller coaster and today's post jumps around a great deal.
How does that make you feel?
Last night my therapist, Nicole, asked me,
"How do you really feel about the diagnosis and having Parkinson's?"
I responded,
"Well, I am relieved that my symptoms are not worse and that the prognosis is pretty good and…"
Nicole cut me off and said/asked,
"You seem to be more honest in your blog, so other than the prognosis, which is pretty good, how do you really feel?"
I replied,
"I am fucking angry. Yes, I am pretty lucky for someone with Parkinson's, but I still have Parkinson's. It sucks. It is a major inconvenience and the cause of way too much stress in my life. I go out of my way to plan and prepare in order to avoid stress and anxiety, because I do not do well with either and now, I have a disease in which one of the actual physical symptoms is anxiety and it sucks. This disease is expensive, time-consuming and completely inconvenient."
So if you were interested in how I actually feel, there it is.
For the past year , I have had trouble falling back to sleep and after I woke up and this problem appears to be getting worse. Apparently, this is a common symptom of Parkinson's disease. I hope that the medication will eventually help with this because people used to be jealous of my ability to fall asleep anywhere anytime.
Another thing that I have blogged about prior is lower back and butt pain. I have always worked out and I have never had lower back problems and while my muscles have been sore in the past (especially after a trapeze class), my glutes never were. Below you will find a quote on lower back and glute soreness from a spinal health website.
"Parkinson’s Syndrome Sufferers may present with various combinations
of back, buttock and leg pain, numbness and muscle weakness, Symptoms
are often aggravated by an abnormal asymmetrical gait arising from loss
of spatial awareness muscle spasm and loss of limb control."
It reminds me of that old joke, "Does your face/ass hurt... ...because it's killing me!
This morning I contacted NYU and left a message indicating that I was interested in participating in the Transcranial Magnetic Stimulation study
Transcranial Magnetic Stimulation (TMS). TMS uses a small (palm sized)
powerful magnet to generate a localized magnetic field. This magnetic
field passes through the skull and into the brain without pinching the
skin; it interacts with brain cells and has the potential to change the
function of these cells and/or their connections and possibly improve
Parkinson’s symptoms.
Update: next Friday, September 18, I will receive training on Dragon software at NYU. Currently, I am using it only for dictation, but I want to learn how to use it to open files, save documents and enter passwords because using the mouse is is way too frustrating.
You might not think you do well with stress and anxiety but you are the male equivalent of Audrey -- or maybe a mix of Audrey and Boris Spassky (ok i just picked him cause i love his name) in so far as you always have a collected and thoughtful response to just about everything -- a sangfroid in the best possible way -- and you always are three moves ahead like a chess champion. So hell yes... curse it up let it out and then do what you do best... figure out what you are going to do about it... because with the exception of letting me choose the restaurant i have never known you to make a genuinely bad decision.
ReplyDeleteAnd re: our insanely f'd up prescription drug situation, if you need someone to make a drug run across the border for you or with you, i am game!
See you soon my man.
sam
my dad was diagnosed with Parkinson’s disease.his symptoms were shuffling of feet,slurred speech,degradation of hand writing, horrible driving skills, right arm held at 46 degree angle, things were tough for me, but now he finally free from the disease with the help of total cure from ULTIMATE LIFE CLINIC, he now walks properly and all symptoms has reversed, he was having trouble with balance especially at night, getting into the shower and exiting it is difficult,getting into bed is also another thing he finds impossible.we had to find a better solution for his condition which really helped him a lot,the biggest helped we had was ultimate life clinic they walked us through the proper steps,i recommended this www.ultimatelifeclinic.com to anyone who also needs help.
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