Monday, June 22, 2015

Symptom update

Well, I think it is about time for a general update. I am still having some dyskinesias especially in the evenings or when under stress. I tend to hold my arms to try to steady them and people think I am cold. I am tired of being asked if I am cold. The next time this question is asked, I think I will say, "No, I have Parkinsons disease." I look forward to watching the reaction.

So I tried taking one-half Sinemet every 2 hours Instead of 1 every 4 hours). It helps a lot with the dyskinesias, but it is a pain to have to remember meds every two hours. Hmmmm......what to do?

In the meantime, I have started working out with Brian Terpstra's Parkinsons Rehab program, and my gait is so noticeably improved that three friends have commented that I look better! It really seems to help. Brian's methods are very targeted towards issues with gait and balance. He hopes to retrain one's brain to have another sector take care of function no longer possible in the PD-affected areas. Good old neuroplasticity! 

So I guess I am doing well. But the stress of waiting for the birth of our first grandbabies (twin boys!) is keeping me from reveling too much at my improvement.

Wednesday, June 3, 2015

New idea

An idea arose from our last support group regarding programming for PWPs. It was noted that our programs in our area are fairly doctor-dependent, and although the medical community is a great source of accurate information, the personal touch of people actually living with PD is  missing. SOOOOO my husband and I came up with the idea of a program we are calling P2P -- Person to Person. It will be a presentation that will follow the PD 101 session and will be especially intended for the newly diagnosed. (However anyone can attend.) We will discuss our reactions and fears after our diagnosis, the reality that we have discovered and how we have adjusted, and the steps we have taken to manage our PD. Plus LOTS of Q & A. I feel really good about this and hope it is well-received.
 
After all who knows better about living with Parkinson's?