I was wondering how much has your PD progressed and in what time scale?
I've had PD 2 years and in the first 1yr and half it progressed slowly but over the last 6 months it has rapidly progressed to where when I am off I can barely walk or use my hands and arms.
I am 37 years old and on Stalevo 100mg x 5 a day and Rasalagine 1mg a day.... Atm i get 1/2 hrs on time and 2/3 hrs off time where I seriously can't function and am practically chair/bedbound until 30/1hr after taking my tab... This seriously can't be right? Can Pd progress so quickly?
How has you PD progressed?
Trev
Written by
stanny7
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It's different in different people. Some people live with it for over 20 years without major medication. Some are bed ridden in few years. BTW had you started exercise immediately after diagnosis?
I have had PD for approx 8 years. Finally got diagnosed 2 years ago, before diagnosis I was being treated for essential tremors. I have tremor in right hand and stiff right shoulder. Also, my writing became very small. I was told by neurologist to exercise everyday at least 20 mins. He sent me to therapy where I was also shown the BIG AND LOUD exercises. I do these exercises everyday. Also joined 24hour fitness, I go 5-6 times a week where I ride bike or walk on treadmill 30mins. To stay ahead of PD you need to exercise. It is easy to say “I can’t.” Start with 5/10 mins if you can and build from there
I have copies of BIG AND LOUD if you would like copies let me know
Could I have a copy? I can give you my email, fax number or postage, whichever you prefer, I have heard so much about this program. I would love to get a copy of it. Let me know .bthanks. Are you by any chance from the Sarasota FL area?
You can take more meds and it will help. I take Sinemet (Carbidopa-Levodopa) 2 25/100 and 1 50/200 extended release 6 times a day and 2 Reqiup 6 mg 24 hour release 1 time a day.
I was DX 3 years ago. My symptoms are advancing rapidly. I am 70 and got to the point where taking 50/250 CD/LD every 3 hours left me with 2 off hours between meds. My Neuro suggested Rytary but it is expensive. I started taking RYTARY every 6 hours during the day, and it made a big difference in my life. My down time is about one hour around med time and I do not go down as low as I was before. Everyone tells me I am doing so much better. I wake up in the mornings feeling much better. So far, I have not had any side effects. I will end with the fact that I I have been determined to be 100% disabled by the Veterans Administration, due to Agent Orange exposure, so the VA is now providing the Rytary at no cost to me. Keep looking for solutions. Yours will be unique to you. The only way to find what works best for you is to keep trying to find it. There does not seem to be any magic bullets.
Slow this past year, no change in meds I take Rytary ER 23.75MG 95 MG 3 times a day. 3 capsules every 8 hrs. The big and loud exercises are exactly that, you do them big and loud . BIG STEPS and BIG ARM movement. You can email me at hatrick150@roadrunner.com I am in CA.. Don’t give up.
My husband has been diagnosed for 5 years, but we knew something was wrong for about 4 years before. He take 1 sinemet 25/100 2 times a day. He has had his ups and downs, but now that he takes a med for nausea with his sinemet and has his Orthostatic Hypotension under control he can get out of bed and do things.
His main issue is tremors and fatigue, but he is advancing very, very slowly and we are pleased. He is 74. He has had LOUD therapy for voice and swallowing, and BIGS for balance and mobility.
My hubby too is 74...Dec. 75. He was dx 5 years ago too. We noticed at first lack of expression and then tremors. He had a friend who had it too so started a specific PD exercise program which I joined in with a little but mostly just rode stationary bike. He did well and we enjoyed it with others tho both of us suffer from fatigue. I have Fibro. and Epstein Barr virus. For quite awhile we improved but it got a little pricey and our main trainer moved away. We didn't continue, so tried riding bikes but I can't keep balance tho he does better and does yard work. I'd like for us to try the boxing program...looks fun but too far away. We go to a PD support group that is interesting. Like yours, my hubby takes Sinemet, and another in pm but not a lot. He gets too sleepy in the afternoon. I know exercise would help but getting it done is a chore. He's having more trouble getting up from chairs and we both use a cane to walk the dog which he needs more of. We all do. The loud therapy is good for him but even with that his breath runs out. I see examples here of increasing med. and he will take an extra if he feels shakey inside but not daily. I worry that he may fall. A friend from years ago just died by breaking his hip and getting an infection. We knew he had PD but didn't know it had been for 25 yrs. Being 82 that means he got it at 57. I doubt he wanted to admit it at that time. I never got a chance to find out about his meds....also a lady about our age has it and it seems she's getting worse faster. mentioned the support group but she and hubby haven't come. I'd like to know if she exercises anywhere. If it's with a therapy class that can be a support group. I really feel that's the better support. My hubby is also is having double vision and not sure why. Ithink there's alot more ahead of us and hope we all can be strong. Good luck with it. M.A.
Big and Loud refer to exaggerated exercises that you help recapture movements you are having issues with. All exercise helps maintain balance by keeping your muscles strong enough to control your body when it moves out of alignment.
Loud therapy is a course of vocal exercises that keep your voice from softening and helps keep your swallowing functioning.
A physical therapist can work with you using these programs designed for people with Parkinson's. The therapist will design a program for the issues specific to you. A prescription is needed from your doctor, and your insurance should cover part of it.
The Dallas Parkinson's support group they have group exercise and voice classes that are available for members. Probably some other large Parkinson's support groups offer this.
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