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.
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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.
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.
The recommended regimen is to walk as hard as you can, for up to one hour, every second day.
If you do anything different then that is your choice and it is not guaranteed to work.
I am now fast approaching 90 years of age and I am still walking, albeit, not as well as I have done in the past. At my age, all I have to do is keep moving and walking as much as I can.
I show no signs of PD and have not done so for many years now!
I'd like to follow the regimen that you do. Can you please send me the links where I can watch your instructional videos and other recommendations. I read some of your posts here and I really appreciate how you share your experiences and try to help us. Thank you very much.
Age 76 diagnosed 20 years ago biggest problems freezing, unable to move , muscle cramping pain in shoulders , lower back , arms and knees , shallow breathing and mucus in lungs.
Tylenol - Arthritis 5 doses x 1 tablet - maximum of 6 per day (pain)
Cannabis salve (homemade) as required topical only ( main go to for pain)
A535 salve as required topical only (pain)
Voltaren salve as required but limited (pain)
NEW weaning on just started (trying ) :
Tamsulosin two tablets 0.4 mg each (muscle relaxant )
Gabapentin 100 mg x 3 capsules each evening ( nerve pain )
INVESTIGATING
under the skin continuous pump injection of CD / LD
PLEASE do not suggest any medication or supplements or devices . The list of what medications I have already tried and can not take due to side effects or supplements and devices tried with no positive affect is much, much longer than the list of what I take.
How do I stop Levodopa. I take it 3x a day. Sometimes I skip a dose and nothing happens. I walk around outside most of the time, use threadmill when it's cold or raining. I also do intermittent fasting, skipping breakfast. I still experience stiffness, rigidity and fatigue but I'm able to manage it somewhat with stretching, resting and meditation. When I'm over skipping med, I feel my symptoms coming back but could it be just psychological because I'm aware I'm skipping and trying to stop? Do I take supplements to compensate skipping med? I appreciate your feedback, Thank you.
Happy Birthday John! May you have many walking years to come. Your story is an inspiration to a lot of us, certainly to me. Stay healthy and God bless.
Thanks JayPwP. I heard of breathwork but don't know much about it. Is this a breathing exercise 4-7-8 or a more involve practice that I need to read more or enroll in a class? I'm interested in finding out more. Thank again.
I'm stiff/slow dominant. I learned the 18 tai chi Shibashi moves a few year ago. They help stretch and relax. In the video she replicates each one too often for me but perfect execution and speed for PD.
Maybe we should insist on a new name - many potential cures are tried on all people tremor and rigid and more categories and discarded cause they don't work on enough people. DBS, Rytary and a few other things help a lot for me = PW/RPD. Hopefully rytary available world wise soon.
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