Would Should I Do

[pete01]

I have been a member of this forum for about 2 years and have learned a lot from others as to how they are coping with their symptoms and the treatments they are using. I have the rigid type of Parkinsons disease which started originally on my left body side, but now has progressed to the right side. Areas affected are predominately the legs and feet and toes. I take Stalevo 50/200MG, carbo - levadopa 25/100mg, Amantadine 100MG and Cyclobenzaprine 10mg. The Stalevo is scheduled for 6AM, 10AM, 2PM, 6PM, 10PM and at midnight. My problem with this schedule is that my ON periods only last about 2 hours. Therefore I have to take a dose of Stalevo somewhat earlier than what its scheduled for, if I want to allleviate the stiffness in my legs and feet. Each OFF period is somewhat different in intensity of discomfort and to the length of time I am in a locked up rigid state. My disease has progressed to where, I start to have sometimes, very intense. where the muscles in my left leg draw, jump and spasm. This situation usually lasts for 1/2 hour and gradually dissipates. During these tremor times I cannot be on my feet at all. I also take Lorazopam for underlying Anxiety difficulty. In addition I am following the B1 Thiamine HDL program, but have not been able to get to the correct dosage level for my body. I also take Mannitol, about 1 tablespoon per day. I am hoping that something starts to work soon,as these tremors are something else to deal with. Good luck to everyone and hopefully we can find a cure to this dreadful disease.

[Erniediaz1018]

Check out some of Stevens posts @ healthunlocked.com/user/ste.... I think they might be helpful.

[pete01 in reply to Erniediaz1018]

I couldn't find any materials on here written by STEVENS

[Erniediaz1018 in reply to pete01]

healthunlocked.com/parkinso...

Try this. Stevemast is guys name. Click on link

[Juliegrace]

It sounds like the 30 minute episodes could be severe dyskinesia. I experience something similar when my meds are waning in the evening since I do not take them at night. Is your doctor open to you adjusting your med times? You could try smaller doses closer together. For example, I take one 10/100 carbidopa/levodopa every two to 2-1/2 hours as needed or sometimes I only take 1/2 of a pill. I believe many members here take meds three hours or two hours apart. It's great if you can go four hours but if you're struggling, moving your doses closer together may help.

[Pelley]

On time has been progressively diminishing? Adding to your drug "cocktail" and it is a crapshoot as to how long they work or how often?

Time to talk DBS with your neuro or find one that will! It has truly been a life saver. It is just shy of a miracle.

[janers]

I found taking a daily magnesium supplement stopped my muscles from cramping. Best wishes

[pete01]

THANKS TO ALL, WHO HAVE ANSWERED MY POST. THE nuero that I have in the city where., I, live has said that they have done about all they could do for me at their level and have referred to a Parkinsons movement specialist for further evaluation.

[ruff1]

Topical magnesium for muscle cramps / really good 😀

[elka68]

Pete, I really empathy your situation. I am supporting my spouse in this agony called

Parkinson's for last 8 years and last 3 years have been constantly more and more

challenging. From what you described my spouse has similar symptoms, but no

tremor. We have been using Magnesium in liquid form on his legs and feet and that is

what was and is the most effective. Just suggestion. As you know there is no the same

prescription and advice for everybody, each Parkinson's patient needs to "find what

helps and works". Yes, I would try liquid Magnesium. My thoughts and best wishes

to you.