It has been another of those crazy days where one’s mind wanders all over the show. Yesterday was painful, I mean literally, and then I had a blow-up with one of the staff, I was fragile. Then Leigh came and it was so good to see someone I was determined to strong, she needs a lot of encouragement too. Then she showed me all the goodies she had brought me. I broke apart. We went and sat outside and just talked.
With all that, I had a lot to think about. Then the “what’s in a name” slid into my head. I think it was Karl’s visit that triggered it, especially when I thought it was possibly the last time I would see him. His older brother is so angry or disgusted with me that he changed his name, he now goes by Johann. I have not seen him, other than in photos that I see on the Internet, for more than twenty years. I remembered how we struggled to get him to sleep as child and would carry him and tell him stories. Karl, the middle son, simply got married and they had the children without letting me know. I do like the names they chose for the children, Jacob and Hannah, good family names. So I wondered how long people would still remember my name? Maybe a year or two? Of course that is true for most people. Roland was different in many ways, he was born after a few years at home with a midwife. She remarked how red his hair was! But the first thing he did when she lifted him up, he promptly emptied his bladder all over her uniform. And the midwife, she just laughed. I don’t blame the boys for how they reacted, I just miss them a lot. This certainly has been another melancholy day.
The Support Group
I knew I had to get my mind focused for the support group meeting. I had abandoned the previous meeting because it was difficult for me to use Zoom on my phone. I was flustered and eventually crashed out of the meeting.
I had asked Lisa, the office manager at Parkinson’s BC, to do a dry run on Zoom with me before the next meeting – I would use my tablet instead. After some trial and error as I searched for the various controls on the tablet screen, that were in different places from her iPad, I finally got it. Then last night I did another dry run with Gerda and that helped to give me confidence.
The meeting went well after a shaky start. I had been reading The New Parkinson’s Treatment book so my mind was sharp and focused. There were 9 ladies in the group of varying ages and Parkinson’s. Because of my biomedical engineering background and would know a bit more and would be able to contribute.
While they were trying to get everyone logged in the sound working, I was thinking just how old and ugly I have become. I had also just read a few chapters in the Ending Parkinson’s book co-written by Prof Bastiaan Bloem. I had watched many of his vlogs and YouTube videos and liked his style. He first explained the concept how Parkinson’s spreads to the brain from the gut via the vagus nerve. I no longer think that that theory is correct.
The other author, Ray Dorsey, was on my mind. 1) He makes the point that Parkinson’s is caused by pollutants like cleaning fluids and pesticides. So to end Parkinson’s disease we need to lobby the powers that be to ban the manufacture and use of these chemicals, just like other groups did.
2) He further said that we don’t actually cure diseases in spite of all the money spent on research – those of us that already have the disease should focus on treating the symptoms.
New Thinking in Parkinson’s
While the Ending Parkinson’s Disease left me a bit negative, I think the authors are right. But at the moment I am just a bit more concerned about my own immediate future than getting involved in PD activism. I admit this is narcissistic but time is short, and I can perhaps leave a system of dealing with Parkinson’s here at Kiwanis as a legacy (who am I kidding, but I pretend it is possible…)
I came across an interesting group on YouTube, #nosilverbullet4pd. They have been able to get some speakers who have been proposing a new way of looking at Parkinson’s. I feel encouraged to believe that this kind of thinking will lead to better treatment for PD.
For example, Dr. Sackner-Bernstein makes the point that dopamine is in fact toxic for neurons and is not depleted in PD, and we should look at a radically different approach to treating the symptoms. I hope he gets funding for his research.
In particular I found a talk by Dr. Aspay (“The missing ingredient for successful disease modification”) very interesting:
Dr Aspay makes the point that our research if like a forensic detective combing through the ashes after a fire. When find an artifact we consider possible scenarios of how the artifact relates to the fire, if at all. Sometimes we get it right but more often not at all. We use our theory to plan clinical trials which is expensive, time consuming and doomed to fail because the theory we had come up was wrong to start with. As an example he quoted the vagus nerve theory I had learned from Prof Bloem.
Well, there you have it, at least I’m managing to end this post on a more positive note.