I’m reaching out for some advice and personal experiences regarding two specific challenges I’ve been facing: tremor management and sleep disturbances.
My father was diagnosed with Parkinson’s a few years ago, and while we’ve learned a lot about the condition, we’re still struggling with a few ongoing issues. His tremors have become more noticeable, especially in stressful situations or when he’s tired. We’ve tried some medications prescribed by his neurologist, but the side effects sometimes seem to outweigh the benefits. I’m wondering if anyone has found particular strategies—be it medication adjustments, exercises, or even alternative therapies—that have helped in reducing tremors?
Another major issue has been sleep. He struggles with falling and staying asleep, which leaves him feeling exhausted during the day. We’ve tried adjusting his bedtime routine, limiting caffeine, and even mild sleep aids (under doctor supervision), but it’s still a challenge. Has anyone here had success in managing sleep disturbances? Are there specific therapies, techniques, or even changes in diet that have helped?
I’d love to hear your experiences and any advice you may have. It would mean a lot to us as we try to navigate these challenges together.
Good evening. I’m 70 years & diagnosed with Atypical Parkinson’s in June 2023 following a positive Datscan. I have had terrible problems with sleep & fatigue. Sometimes I get no sleep, on other occasions I wake up at 4.30am & cannot get back to sleep. I also have nightmares & most of my bedclothes end up on the floor.
My Parkinson’s nurse says the sleep issues I have are most likely caused by the Parkinson’s medication I take which is Co-careldopa aka Sinemet. Recently I have started taking Clonazepam combined with the prescription Melatonin. This does help me sleep but I still feel tired in the morning. I have tried other drugs which have not helped.
I do get gait freezing & stress related shaking & I have an internal tremor.
Exercise is good & there are free Neurological physiotherapy courses on the NHS at your local hospital gym. I have done one & found it helpful.
my main suggestion for sleep is amitriptyline. levels that are good for sleep will be between 10 mg and 45 mg per day. i’m currently taking 20 mg per day usually, and if i wake up in the middle of the night and can’t get back to sleep i take another 10 mg. this is a really great medicine for PD. it also helps with some of the random pain that PD causes. it’s also anti-anxiety and anti-depression. early on (long before getting the PD diagnosis) i tried high levels (above 100 mg per day) and that made it very hard to think. but lower levels (below 45 mg per day) seem to work great.
the difficulty with amitriptyline is that it has so many effects that there’s a good chance that some of the effects will be bad for any one individual. so you just have to try it and see if the effects fit your needs.
another thing that helps with sleep is to stop caffeine roughly 10 hours before starting sleep. in other words, take all your caffeine at the beginning of your day. the half-life of caffeine in the blood is about 6 hours, so you need to give it time to be removed from your system so you can sleep.
another thing that helps is avoiding light that contains any blue light at night. so if you wake up for two hours between for example 01:00 and 03:00, use only red LED lights. blue light will throw off your body clock but red lights with no blue in them won’t.