What unusual or bizarre things have you discovered about Parkinson’s?

[Oceanwind]

I’m trying to get a good list of weird or surprising facts you have come across or observations you’ve made from personal experience about Parkinson’s disease or anything related to it. I’m hoping to write about this for Parkinson’s Awareness month (April).

For example have any of you PWP‘s or caregivers/spouses of PWP’s notice any especially strange or surprising therapies that are working for you/your PWP that are not prescribed/suggested by doctors?

Or maybe you’ve just read something fascinating that you’d never heard of. I’ve picked up all sorts of strange things from Parkinsons’s members’ posts on this site, or from other Parkinson support sites. Another example: I learned that if you eat mustard or pickles when you have a toe cramp (dystonia) it can help relieve it.

Or, if you are dragging your left or right foot when you walk, it helps to listen to music with a good beat/rhythm and that will improve your gait.

Or simply a fact that surprises you. Example: I learned yesterday that in Japan more women than men get this disease.

I hope you can share some of your own findings!

[park_bear]

Cinnamon helps

healthunlocked.com/cure-par...

[Oceanwind in reply to park_bear]

I was thinking about what I learned through you a few years ago— about Qi Gong. Is there any scientific study backing that up that you can provide a link for?

[Raphaekg in reply to Oceanwind]

There is some supportive evidence for benefit. See..pubmed.ncbi.nlm.nih.gov/327...

[park_bear in reply to Oceanwind]

There are many such studies. Here are the Google scholar search results: scholar.google.com/scholar?...

Here is a recent systematic review and meta-analysis: journals.sagepub.com/doi/ab... "Results of this meta-analysis showed that Qigong had significantly positive effects on motor symptoms (SMD = 0.59...), walking ability (SMD = 0.78...), and balance (SMD = 0.72...) in patients with Parkinson’s disease." SMD = Standardized mean difference "Level of motor symptoms was assessed using the Movement Disorders Society-Unified Parkinson’s disease Rating Scale Part III scale."

These studies typically had people doing Qigong for an hour a couple of times a week. So they did not test what I would regard as dedicated practice. Accordingly, the impact was small.

[Oceanwind in reply to park_bear]

Thank you so much for your thorough reply—On both the cinnamon and the Qigong! I really appreciate your input.

[Moondaughter]

In homeopathy school I was taught to pay attention to the"strange, rare and peculiar symptoms" .I find this really interesting.. came across this yesterday........though it seems contradictory to what your post said about pd in Japan raising more questions than answers for me . neurosciencenews.com/parkin...

[Farooqji]

Ibogaine HCl

[felixned]

According to the report referenced below, researchers at the University of British Columbia have demonstrated that in patients with Parkinson's disease, the placebo effect produces the same results as pharmaceuticals.

pubmed.ncbi.nlm.nih.gov/120...

Personal observation: I see significant improvement in the predictability of C/L-dopa medications effect on my PD symptoms after my gastroenterologist put me on Motegrity ( Serotonin 4 agonist) to address intestine motility issues.

[Oceanwind in reply to felixned]

Thanks! I found the placebo effect most intriguing.

Also thanks for your personal observation: will see my neurologist next month so I’ll ask him about Motegrity , as motility issues are my biggest problem.

[park_bear in reply to Oceanwind]

High-dose thiamine was helpful for me in that regard.

[Oceanwind in reply to park_bear]

Me too for a short while. Maybe I need to take more! My big problem is I have pill and tablet-popping fatigue along with swallowing issues.

[TheGimba]

Great question. When my husband is having an "Off" period and is feeling really bad I try to distract and engage him in a conversation about a topic that he is really interested in. The more entertaining and engaging I can be, the better the chance that he can snap back into functioning. It doesn't always work but often it does. He likes alternative media and we are both intrigued and disgusted by global corruption. Whatever works, LOL

[Oceanwind in reply to TheGimba]

That’s great! I wonder if that would work on me.

[johntPM]

If you are a PwP on medication, and you feel OK in the morning before you take your first pills of the day, this is a good sign that your body is still producing useful amounts of dopamine.

[134A in reply to johntPM]

I’ve often wondered the same thing! Does anyone else have an opinion?

[Johnmo in reply to johntPM]

I get the same. Its so good to feel normal on my own dopamine. I put off the drug 'high' of my morning dose of levodopa.. And try to master the conservation of what little natural I have left. Trouble is it's just wishful thinking. I can't actually do much. The Akathesia and Bradykinesia kick in.

[Rhyothemis in reply to johntPM]

Interesting. Cortisol is highest in the morning.

[Rhyothemis]

One weird thing I came across recently in the literature is that erythrocytes (red blood cells) have a dopamine transporter and that methemoglobin levels are increased in later stage PD.

link.springer.com/article/1...

[Oceanwind]

thanks for sharing this .....but I don’t understand it as I don’t have a science background like you seem to have. Maybe you or somebody else with knowledge in this area could please translate this into layman‘s terms? (I wish I had studied medicine!)

[laglag]

I have had excellent results from Rock Steady Boxing (RSB). I joined in January 2007, a couple of months after they first opened in Indianapolis. I now go to an affiliate 4.5 miles from my home rather than 20 miles to headquarters. There are now over 800 affiliates all over the world. It has been a Godsend. I go 3 days a week & if I miss my more than a couple, I can tell a difference. We do a variety of exercises as well as non-contact boxing. The be boxing is good for hand-eye coordination. We do aerobics, weights, jump rope, fine motor skills, etc. The routine is rarely the same. Believe it or not, we have a lot of fun and get a great workout at the same time. Another good thing, everyone has PD so you can relate to how others are feeling and give each other ideas and motivate each other. If you have any questions, I'll try and answer them.

Keep fighting! 🥊

[Mirl]

Wij hebben ontdekt dat TRE (ontladen door trillen) helpt bij stijve benen. Wat ook Zeer interessant is zie pdrecovery.org