It has been a busy September. We started the month with a trip to the Seattle area to visit family (here we are after a great brunch at Big Fish Grill), and now we are ending the month in Michigan where we just finished attending the Grand Challenges in Parkinson’s conference and will visit family before heading home to Sarasota.
This month we had appointments with our new Primary Care Physicians and our new Dentist and continued updating our home, painting some furniture and a hallway.
We also made a trip to Tampa to meet with my new Movement Disorder Specialist, Dr. Robert Hauser who heads up the University of South Florida Movement Disorder Clinic. Dr Hauser is involved in research and we discussed my participation in the Nilotinib study after I have been on my new medication routine at least 30 days. What new medication routine you ask? We are going to reduce the amount of pramipexole (Mirapex) that I take over the next month or so to see if that reduces both my daytime sleepiness and my shopping impluse control disorder (ICD). I, of course, don’t see anything wrong with ordering items from Amazon almost daily but I was overruled by the Dr., the PA, and Mara😀
Because of the possibility of dopamine agonist withdrawal syndrome, we will be reducing the dosage very slowly over the next several weeks. So far (3 days) I haven’t noticed any effect yet. Once we stabilize or completely stop the pramipexole we will look at alternatives for maintaining my dopamine level without increasing my off time.
In between our travels we continue to work on our tennis game, playing at least 7 – 10 hours a week when it wasn’t raining – it’s been a wet September in Florida. I recently read a guest post by Jan Jackson on the Out-Thinking Parkinson’s blog titled Tennis as Therapy for Parkinson’s. She is playing tennis 2 -3 hours a day almost every day of the week and seems to be holding off progression of her PD symptoms. Maybe I need to step up my time on the court!
I also continue to cycle for PD twice a week where we continue to push the high intensity intervals for 45 minutes each time. The need to exercise was discussed by several of the speakers at the Grand Challenges conference and the concept of HIIT was mentioned almost every time. I will cover the Grand Challenge conference in the next post. This was our third time to attend, you can read about the previous conferences here and here while you wait for the next post.
“It does not matter how slowly you go as long as you do not stop.” – Confucius