When I am speaking about Parkinson's or John's and my journey together through Parkinson's people often want to know but are afraid to ask...... How is John doing after 20 years with Parkinson's?
So here is an update on John and his continuing remarkable journey showing his resilience. You may note from my blog earlier this year that John was suffering from lingering problems after a very serious struggle with Covid last December. Add to that the stress of moving across country and many of our friends last saw John at a point when he was struggling.
Since learning he had Parkinson's in November 2002 there have, of course, been ups and downs. We have taken each of these opportunities to learn from John and his body and try new things. Many of the alternative things we have tried are discussed on this blog. The early part of this year was really tough. John had very bad orthostatic hypotension and got very dizzy upon standing. We learned this was both a Covid side effect and a side effect of MAO inhibitors which he was taking at the time. He was also extremely fatigue and "losing power" in his legs by early afternoon. These problems persisted from January all the way through early June after our move to the farm in Kentucky.
We started working with a functional medicine doctor and found a few new things he could try for energy - Magnesium, Adrenal Cocktails, KetoneIQ, NMN and Endourage CBD. We also learned from some autoimmune tests that he had antibodies to intrinsic factor (B12 absorption) and 8 different antibodies for gliadin and gluten. While he was eating fairly low carb he had not really avoided wheat. So he started avoiding all wheat and making sure there was no wheat hidden in anything he was eating. We started focusing on sleep quality, walking daily outdoors on the land and he kick started his Chi Gong and Wim Hof breathing practice again. And added in the Sugar Shift yogurt I mentioned in the Covid blog post.
But one of the most impactful things he tried over the 7 months leading up to our daughter's wedding in July was the Prolon Fast Mimicking diet. In Parkinson's something called "autophagy" isn't working well. Autophagy is the process by which the body eats up and recycles non-performing or dead cells and breaks them back down to raw materials that can either be used or disposed. John has always had an overactive appetite, feeling like he was never satisfied from his meals. The Prolon Fast Mimicking Diet enabled him to do a 5 day "fast" mimick by providing a scientifically validated approach to calorie restriction that still allowed the body to kick off autophagy. He tried his first 5-day Prolon in March and noticed some good improvement especially on the 5th day of the fast. We discussed this with the functional doctor and decided to try the Prolon fast mimicking every 5 weeks through the summer, planning his 4th time fasting to end on the day of our daughter's rehearsal dinner. Each time John did the fast we could see improvement on each day of the fast with the 5th day always being the best. But sometimes we found on the day after the fast when he would FEAST, he would really crash in energy. So he started focusing on carefully adding back food, not too much and especially not too much protein on the 1st and 2nd days. This seemed to work a lot better.
When we returned to Denver for the wedding week, John was feeling great. He had really made a remarkable comeback from the Covid setback earlier in the year. This is a picture of John walking our daughter down the aisle. Just a few months earlier he wasn't able to walk very far without a cane. When they rounded the corner to walk up the center our youngest son could see John and started to cry with JOY! He had helped us move in May and was overcome with Joy at Dad's "come back".
Here is another of my favorite photographs from the wedding that just says a lot to me about our journey together in this life. After all, it is really love that heals and love that has driven me to learn all that I have to help John and all our PD friends we have made through the years. So I'm here to tell you, don't give up, there are things you can do to make a difference, one small thing at a time.
It is now November 2, 2022 - I just realized, it is the actual anniversary of the day the doctor told us that John had Parkinson's. I don't think that doctor would ever have expected John to be doing so well 20 years out. And he has been feeling better each week than the week before. We are grateful for each day and each little spark of progress.
With gratitude, Martha