JJ
Forum Replies Created
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My restful sleep problems began when I started getting moderate-severe dyskinesia from the PD meds and for the past 2 years I have tried several fixes, most of them inadequate. Exercising has been my best defense against PD for 15 years, but the night “hard” tremors are both persistent and relentless. I have learned to control the dyskinesia during the daytime with yogurt, kefir, and exercise, and have reduced my Ropinirole Rx by 1/3 and now take 1 L-Tyrosine mid-day, while adding Carb-Levo Extended Release to my daily Rx dosage. Overall, the “hard and painful shakes” are much reduced and perhaps this will continue. :))
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As an update to my prior input on quality of sleep, the disturbances have become routine: I wake after 4 hours and take 1/2 each of the ER C/L with 1/2 of the IR C/L, and experience hard unstoppable shaking until the med kicks in. Drinking water in the middle of the night necessitates a bathroom trip which increases the tremors. All in all, it sucks. ER C/L has not helped my dyskinesia episodes and I hope to stop taking them next week. I also take 10 mg of Melatonin. and CBD has not helped. Am hoping to participate in MRI directed US if accepted, and look forward to the Parlinson’s Glove Tx release by the FDA, hopefully, this year. My motto is “Never Give Up”. Please share your efforts until we beat this monster. :)) https://www.youtube.com/watch?v=GySCSlEBC6M
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Brutal–heat heightens my symptoms, increases inflammation, and dyskinesia. My simple and somewhat effective aids: I put an ice pack next to my pillow and use it as desired when inflammatory signs/symptoms come on–at feet, or shoulder (from dyskinesia) or neck. One pack lasts me through the night. I also have a “Cooling” pillow–inexpensive and reduces scalp sweats.
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Please share more information on who/how to contact: #s, names? Only information I find, so far, is Not Yet Recruiting.
Thank You!