After 9 years of Parkinson's Disease diagnosis, and 4 years of HU, and trying supplements of every 'improvement' story, I think I have it all wrong.
I have Rigid PD, no tremors. Cogwheel rigidity and extreme speech impairment.
Now after 9 years I have some trembling in the knees if unmedicated till late afternoon. I take CL at 12, 15, 18, 23.50 (CR). For every dose, I am off 1 hour (12pm, on by 12.30, off by 14.30)
I would like to invite other Rigid PD who have stopped / slowed / improved PD symptoms to share their regime and protocols. This will help other Rigid PD sufferers, I feel.
I have nothing against Tremor PD, it's just that I think I have a better chance of improving if I follow a type of PD similar to mine.
Written by
JayPwP
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you mind sharing what else you are doing to address rigidity? I have personally found stretching ,that focuses on specific areas where my rigidity seems worse (neck, back shoulders and hips) followed by massage is the best way to get relief. Sitting and sleeping make it worse so I try to walk as much as possible. I purchased some Nordic Poles to help with posture and stability while walking and there is also a program based out of Phoenix (PWR) that specializes in teaching PwP how to use them to maximize the benefits. They also offer on line classes. I’ll look up the link and post in a few minutes. My wife and I attended their in person program in the Scottsdale area two years ago and found it beneficial. Movement is the only thing that seems to help me manage symptoms which further validates the cruelness of PD. The days I don’t do anything are the days stiffness is noticeably worse. Haven’t found C/L or any supplements to address stiffness but I added Baclofen (muscle relaxer) which seems to help with cramping at night. Best of luck to you. Z
May I inquire as to how often do you take baclofen and what is the dosage. I use it too, but sparingly, it helps with my TMJ, and yet I'm afraid to take it every day. I don't want to feel drowsy or is it my imagination?
I take it everyday but I take it in the evenings before bed. It’s been very helpful in reducing the severe cramps I was having in my back and legs. I’m 6’3”/240lbs so my dose of 10mg may be comparatively high. One of the more common side effects is drowsiness with most muscle relaxers, however, I have taken another one called Skelaxin (sp) that had very minimal side effects. All the best, Z.
the program I referenced in my previous response is call Parkinson’s Wellness Recovery. They offer on line classes focused on improving rigidity through various exercises (stretching, walking etc) and they offer an annual clinic which my wife and I attended two years ago which was beneficial. I strongly encourage purchasing their Urban Poles for walking and incorporating that into your regimen. They have a physical location in Tucson, Arizona but certify folks all across the globe to teach their program. My RSB program here on the east coast of the US even has someone nearby and affiliated who is certified in PwR.
I also find Nordic walking very helpful. Also, swimming helps with rigidly in my back as does horse riding, but PD WARRIORS exercises are excellent and perfect when it's difficult to go out of the house.
If you want to get better then start by walking as fast as you can, for a maximum of one hour, every second day. Within two years you will be free of PD movement symptoms!
The reason why nobody tells you this is that nobody but you gets anything out of it!
Except, ME! I want you to get better.
I have had PD since 1992 and nobody would ever know!
Start to walk on grass if possible, because if you fall, you will not hurt yourself.
There is, and always has been, only one way to reverse PD symptoms, and that is by doing FAST WALKING!, every second day, for a maximum of one hour!
You must walk as fast as YOU CAN for as LONG AS YOU CAN., but only for a maximum of one hour, every second day!
Within two years yo will be free of PD symptoms! I have had PD since 1992. I learned to do the fast walking in 1994 and by 1996 all my PD movement symptoms had disappeared!
I do brisk walking up to twice a day. I still feel stiffness and rigidity if I sit or stop moving for a long time but I believe walking and stretching help. Is there a reason why you do it every other day? Are you able to stop med? I tried but went back to sinemet.
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