"...Parkinson's...is a cluster of different disorders..."
"Our proposal also implies that we will need a wide variety of different therapies and each will need to be applied to the right patient sub-group, and to the appropriate disease stage if they are going to be effective."
Thank you for posting the link. I had a head injury, a hairline fracture, resulting from a fall where I banged my head hard. Was many years before my PD was diagnosed, and I wonder if that was a 'trigger'.
"These attempts also typically viewed PD as a uniform disease, and subsequently treated all patients with the same therapeutic regimen."
I have read the same thing about research. That instead of grouping participants in studies by number of years they've had PD or if they are on meds, groupings should more align with symptoms.
I’ve been talking about this idea for years, but I never heard anyone with credentials express it. (I also do not have the credentials, just 11 years of close observations.) I have participated in about 20 trials, some quite complicated, and it consistently appears to me that outcomes depend on inputs, which is to say that the nature/experiences/and where we are on the disease path has a great deal to do with our responses to the interventions. My REM experiences, which have been controlled by Clonazapam for years, are back. I hallucinate, not scary, but “real” enough to make note. My massive exercise is less effective than it used to be. And on and on. I also wonder about my family. My dad died of ALS in 1972 at age 56. My brother died of ALS in 2012 at age 70. I was diagnosed with PD in 2008 at age 62. I was initially told they were unrelated. I wonder.
Thank you for posting this article. Much to think about.
It’s Nan, not Nancy. I go through yoga for my back, knees and toe joints as I had knee and toe surgeries a couple of years ago and they never quite healed. I ride my bike 4-5 days/week for an hour at 80-90rpm as per the Pedaling for Parkinson’s protocol. I try to walk 10,000 steps/day. Then I do the yoga again at the end of the day.
I have to say, I'm surprised you're progressing like you are with one hour of high-intensity aerobics (and all the rest) like you're doing. Are you going to try to increase your exercise?
The yoga and walking are surgery rehab, which were not related to PD. By doing the cycling I have climbed Mt. Kilimanjaro, Annapurna Base Camp, Machu Picchu and this summer, Mt. Blanc, etc. etc. I adjust for other problems, but I think I’m doing quite well at 73 and 11 years into PD.
My father died of PD at 93 in 2015, my mother just shy of 85 in 2014 from Alzheimers. I do believe environmentally related--exposure to toluene and other chemicals like lacquer and lacquer thinner-through my father's work in the house is the cause of my father's and my PD and my mother's dementia. Perhaps there is a chemical you were all exposed to?
Your exercise routine is impressive and inspiring given your age but more so the number of years since PD diagnosis. I have been practicing yoga (3-5 days per week) and walk 2 - 2.5 miles (4-5 days per week), plus daily Big exercises and a few days a week light weights. I am encouraged by your routine and success. Thanks for sharing,
I’ve heard it said again and again that PD is a disease of aging and if we all live long enough, nearly all of us would get it. It sounds like your parents had very long lives, which makes me doubt that chemicals had much to do with their eventual diseases.
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