Night and Day… Literally… How is it possible that at night, walking home from a celebration party I left early because I felt weak (sorry folks!), I had to call my daughter to help me walk home because I could literally only shuffle with my feet scraping the ground and walk with the tiniest steps, then, after a relatively good sleep, I woke up and felt great, did Yoga, had three glasses of water, one date (the fruit), and one espresso, turned my pump up high, and I was able to fast-walk 5k with Nordic Walking Sticks in just under 51 minutes. How is it possible?
Only someone with PSP, PD, or a related Parkinsonism disease would be able to understand this phenomenon (and maybe some caregivers and medical professionals who have documented this, as you can see in the link). This is something that so many people with the condition feel, and it is completely perplexing and confuses a lot of other people. Some actually accuse or think people are ‘faking it’. They say it’s all in the head. Of course it is—it’s a neurological disease 🙂
I have now learned that my falls, freezing, and shuffling, while gradually worsening overall, correlate generally to evenings when I am most tired, to high-stress situations such as work (which I’ve had to put the brakes on), but also seemingly to social situations with lots of people, which I think makes me feel self-conscious.
Anyway, this morning I felt really good, and as I said, I set off alone on a fast walk. It was fluid and felt great, and being stubborn, I decided to go for 5k walking in 50 minutes, which I missed by 47 seconds.
This confusion, I think, was reflected in the discussion I had with the Professor on Friday that I mentioned yesterday. He saw my strong cognitive skills and questioned the diagnosis of PSP, but when he examined me, he was very clear that the ‘probable’ diagnosis looks accurate. It’s so strange. This is the journey many, many patients go through, and while it gradually degenerates—tragically much faster with PSP but also with PD—it can be massively fast-tracked by a fall, a choke, or an infection.
This is the conundrum, and you have to keep pushing because if you stop the exercise, it simply becomes a self-fulfilling prophecy and it eats you.
It’s so strange, and I wish I could explain it, but there is still so little known about Parkinson’s Disease and even more so virtually nothing known about its mutant cousin PSP (and other atypical variants).
That’s why I’m committed to fundraising to try to get awareness raised in Israel and, even more so, to get funding for clinical trials in the country. I’m going to badger people about this in a couple of weeks while the hospital I’m working with (TLVMC, the home of my late Neurologist Professor Giladi, in whose memory I will raise funds) finalizes the arrangements.
I will take the good from this… like when I got 1 out of 3 table tennis games off my son at the weekend and when I scored 134 bowling left-handed (I was right-handed) and with a walking cane/stick.
The fight continues… and I hope for your support when I kick-start the fundraiser…
