What a wild experience the last 12 months has been! From my initial DBS discussion with Dr Tuite until now we have been through an intense screening process, multiple COVID delays, and finally three difficult but successful surgeries. The last seven weeks have been one of the most challenging but rewarding times of our lives. The medical and research teams that we worked with are unbelievable! We are optimistic things will continue to improve!
February 25th, we went to my first DBS programming appointment where they turned on the right sided brain stimulator that helps the left side of my body. We hoped for a drastic, immediate effect with the stimulation but did not know exactly what to expect. During my appointment, the doctors reassured us that the lead placement looks excellent and that the location of placement in the GPI part of the brain (globus pallidus) can take a little time to become fully effective and find a good balance of DBS adjustments and medications. It always takes a little time for my meds to work after having to be off them overnight, so it was a waiting game.
After my appointment I took a nap and the benefits of stimulation were already starting to present themselves. Every day since then I have felt stronger, started sleeping better and generally felt more ‘normal’. DBS has already been giving me the freedom of living without the fluctuations of feeling “off” one minute and then dyskinesias (abnormal movements from the medications) the next minute. March 18th I return to the U of MN for the left side programming, watch out world!
Nine days later and I am starting to ramp up my workouts and I am seeing daily improvements. After a couple months of recovery, I am refocused and ready to go. Going forward I am going to ask all of you to help me to remain focused on keeping active, so I will publish my weekly results for accountability and support. I know that Mike Panteleo (trainer extraordinaire) is excited to hit the ground running and continue to push me when he returns from Florida this week!
Weekly summary (March 1st- March 7th):
# of exercise days: 7
Peloton Miles: 81
Miles Run: 3
Next Race: Goldies 5k (4/17/21)
Exercise is the only countermeasure to slow the progression of Parkinson's disease. Our journey started in July of 2014 when Jason was diagnosed with PD at the age of 36. Since that day we have been living an extremely active life style. This blog will be mainly focused on the activities that support the day to day changes PD throws at us!