However for those of us with sleep apnea, sleeping on your back can be life threatening. It sounds like you are experiencing repeated Sinemet withdrawal with freezing throughout the night. Good that it's not interfereing with your sleep, though. I try to confine the withdrawal to one episode/day.

My PT told me to sleep on a large bath towel and pull on one edge to roll myself over. I've never tried it, but who knows? Might help.

Bed rails are the first sugestion I have used when this difficulty has me not being able to turn in bed. Now I have put a nylon rope over the top of me connected to both sides to pull the area of most weight to roll as the case may be.

This gives me connection to the rope where ever I am in the bed and because of the double commection it never goes under me and is readlly available.

As most know I don't have Parkinson's but Lynphoma in my bowel and stomach area so turning can be painfull for me as well.

With grabbing the rope it allows me to rest if need be then try again.

It works well for me becaouse I am getting a mean expansion problem lol

My neuro refers to the withdrawal period as just wearing off effects. Ha! He should try it. My response has been more and more to crave sinemet every three hôurs the whole 24 hours.i range from 2.5 to 4 hours, but 3 is the average, including all night. Otherwise, I don't sleep. I don't know what this will do for or to me in the long run, but I am much closer to functional now. I had lost the ability to walk, had to sleep in a powered recliner which I still love, but basically would flunk an activities of daily living test across the board. Now with enough rest I can move again, bathe, cook,etc.Have I sold my soul to the devil?


Sasha

Towel underneath idea sounds really good, will try this..sounds like it would work to me. I have used draw sheets to move and turn people for years and can turn people 300 lbs with them and some leverage.

Madam Lash, This list from Rehab Equipment Exchange is so totally cool! This is how I think, that we should help one another by keeping this stuff moving. In our case, it would be a roomful of nutritional supplements to give away. I've thought about creating a sample library, but that's complicated...

Anyhow, I shall contact the exchange and see what they still have. We haven't been able to do anything about the sleeping aid and the Volkner Turning System remains the apple of Jan's eye.

Oh, and for you folks with overnight arm mobility, a hospital bed overhanging grab bar/trapeze is pretty wonderful. It only works when you do, but there are times when it's just right and so right then.

Actually, in my experience, a low dose of Sinemet causes freeze-up. The worst time of day for me is the withdrawal freeze-up that begins ~two hours after my last dose, and has eased off enough by 3.5 hours that I can get up and move around, and do fairly well until morning without the drug. Have been on Levo-Carb for 11 years. Once I start with 100mg Levo-Carb in the morning, I have to take it every two hours. If I go longer than twenty minutes over time, I will have to go through an extra withdrawal freezup. I do best if I can keep it under 600 mg a day, and at 500 mg/day I have the shortest withdrawal. At 700mg/day, the frozen withdrawal lasts longer. I do much better with chewed-up fast release Levo-Carb than with extended release, even though I always chewed up the controlled release for many years. I had a terrible time not being able to turn over in bed, and with frightening freeze-ups, but am doing much better now than I have for years. I have stopped all supplements, drink a lot of water with my pill, and am careful to eat only an hour after or before a dose of Levo-Carb, and not much protein, even legumes, during the day. I used to have terrible dystonia, but that's gone now, T.G. Still get dyskenesia, but my feet don't curl up any more, and I don't fall like I used to. So I think that by taking a low dose of Sinemet in the night, you are just perpetuating multiple freezeup withdrawal episodes. Good luck.

Hi Rick,

I'm fairly new here but I sense you've had a lot of experiance with PD. I notice there are a myriad types of symptoms and medications and doses vary wildly. I myself was diagnosed 3 1/2 years ago and was told I was moderately advanced. I've been taking Simenet (25/100?) 2 tabs a dose/ four times a day and Requip (5 mg) 3 times a day plus 1 Amatadine(sp?). The last time I visited my doctor for my quarterly botox foot cramp shot I was extremely dyskensiac and he suggested DBS surgery.

Is his suggestion premature? Should we experiment with different doses? I know you're not a doctor but many times when I ask my doctor questions he shrugs and doesn't have very satisfactory answers anyway. The last thing I asked him about was acupuncture. He said it helps some people with pain...!!! It's helped me out with the rigidity and I feel at times I've even been less dyskenesiac.

NorCalGal

As you know, I am not a doctor etc. But I will share my opinions. DBS is permanent so I intend to resist the temptation. I also see it as very experimental. What I have opted to do is to consolidate on sinemet and sinemet alone. I know it has problems but it has been around long enough that I kind of know what they are. Also, much of our problems seem to come from drug interactions and side effects, so polypharmacy is not desireable. Further, I can adjust dosage with some precision, getting down to 25 mg with a quarter tab. And if needed I can segue into mucuna with minimum trouble since it is so similar.

I came to this approach via a heavy load of requip (28 mg per day) and increasing dykinesia. Quit it about three years ago and have been on only sinemet for the last year and half. Taking a heavy load of it as well, but I was at 28 mg of it as well and have successfully cut that to about 20 mg and still titrating down. I currently take 4 mg of CR sinemet every three hours starting at 6:00 AM and ending at 6:00 PM. This regularity gives me a backdrop to experiment against with new herbs and such. BTW, if you intend to try any amino acids that compete with sinemet, now is the time since as the competition grows it becomes harder to manage.

Good luck and learn to use the search function here. There is an incredible amount of date available if you dig around.

-Rick