Which sleep issues do you find hardest to manage?

Which sleep issues do you find hardest to manage?

Hi everyone, :wave:

Sleep and night-time problems are common in Parkinson’s and can affect you at any stage of the condition.

We’re very interested to hear from you and the impact Parkinson’s might have had on your sleep. We want to support you and ensure the information on our website is relatable and relevant.

You might want to share:

  • How Parkinson’s has affected your sleep
  • The impact of any sleeping problems on your day to day life
  • Tips and techniques that you have found have helped you with sleep
  • Apps and technology that help you sleep
  • Treatments for sleep problems you have tried
  • Useful resources or articles that have helped you understand Parkinson’s and sleep

We’re looking to improve the information on our website - any experiences, tips or pieces of information you share will help us ensure the content is relevant to the Parkinson’s community.

Please feel free to share thought and experiences on this thread.

Early on when I first had sleep problems, I was advised not to lie awake in bed worrying about not sleeping. So I got up, mooched about … cup of tea, biscuit … started to do little things etc and time slipped away and my day had started.
I now try not to eat or drink and not to do anything that I will get interested in. Boring myself into going back to bed and sleeping sometimes works.

This is going to sound completely nutty. I invested a couple of hundred Australian dollars in a red light helmet from the Dover Men’s Shed in Tasmania. I find that if I use it for about 20 mins before bed time I sleep really well. Before, I was waking up at 4am every morning and couldn’t get back to sleep. Now I go through until at least 6am and if I do wake up and need to pee, I get back to sleep almost immediately. Studies are being done on light therapy in Australia. I spoke to the researcher in charge at a recent conference. She is very optimistic. My neurologist was also very positive.
It may well be a placebo effect - but who cares if it works.

I had on and off episodes of insomnia before dx and in the first year and then the odd occasional one or two bad nights, that was until April of this year. Since April I get if I am lucky 4 hours sleep a night, I still work a full time job as a project manager and I don’t how or why sometimes (financially I need to and it also keeps my mind active). I am mentally and physically drained and weekends are becoming a complete wash out as I am so tired, which I know is a source of frustration for my Wife, though she is very good about it… I have tried all sorts aroma therapy though I have appaling sense of smell. Light therapy, warm baths, meditation, audio books, tai chi (my balance and posture has improved :sunglasses:) and all to no avail. I have an appointment with the sleep clinic this week so fingers crossed for something to help. Sleeping pills are a no had them got a longer sleep but brain was like much and I couldn’t concentrate on anything. Here’s hoping for a change someday soon :smiley:

Hi @Mosie, @Tenorhorn and @jps1926,

Thank you for sharing your journey with sleep and Parkinson’s. We really appreciate you taking the time to share, and it’s good to hear you all have approaches that are offering some help.

We were eager to find out about your experiences with sleep so that we could make our current resources on the topic more relevant. Hopefully we’ll be updating the current webpage on sleep next week, so keep an eye out for some more information and tips for tackling sleeping problems within Parkinson’s.

In the meantime, do keep encouraging others to shares their experiences of sleep and Parkinson’s so that we can make our resources as useful as possible for everyone affected by Parkinson’s.

Best wishes,

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I have had sleep problems for the last year. My progression has been quite slow until I have finally associated my sleep problems to Parkinsons. I just thought it was other stuff that was causing my sleep problems as I didnt know it was part of Parkinsons. I go to bed about 10 pm I read for about 20 minutes. I then go to sleep, by 11.30 pm I am awake I go back to sleep after about 15 minutes, And then I wake up at about 2,45 am and then i awake on the hour every hour until i finally give up at 7am. I am shattered the next dat and I still work running my own business . Anyone have any tips on how I can sleep better? Sleepless in Tring

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Sleep Issues with PD.

I have had PD for over 10 years now. And had my own issues on ways to get a good nights rest. I have even tried hypnosis. But nothing seemed to work. Plus I had bladder problems, requiring at least 3 “urgent” trips to the bathroom every night. Both problems are largely resolved now. I now listen to the radio via ear phones ( in the ear type) in bed, and within 10 mins I am fast asleep. And have had medication from the GP, allowing me more control of my bladder, with only1 trip to the bathroom.

Sleep Problems
I have been diagnosed with PD 9 years ago. My sleep has deteriorated over the period especially since I began using Neuro-patches 1 year ago.

I go to bed about 10pm and go to sleep quickly but wake up approx. 2 hours later feeling wide awake. I find staying in bed difficult as stiffness prevents turning over easily and I have never been comfortable lying on my back. I have had a bed lever fitted which helps my movement in bed. After waking up I get out of bed to watch television for an hour or so then return to bed for another 1 to 2 hours sleep before I
wake up and watch television again for an hour or so before returning to bed for one last sleep for about an hour. In addition I have to get up to use the toilet several times.My GP has prescribed various medicines to try but no effect. I do not sleep during the day other than an occasional cat nap in a chair after lunch. I have tried using the programme “sleepio” with no success

Any advise to improve my nights rest will be appreciated.

I seem to sleep well. I was diagnosed 20 years ago. Sleep on the floor in a sleeping bag (I use a wool mattress topper for insulation), no heating in the room, no street-lighting or little lights on devices within bedroom, curtains open so I can see the stars, fresh pillow cases every week, mite-proof pillows. Take Stanek 150mg at 6.00pm, go to bed at 6.30pm sleep soundly until midnight, go to the loo, have another tablet with some green tea, then go back to sleep and sleep soundly until 5.00 am when life begins. I also really enjoy my dreams.

HI Tenorhorn

I know it is a long time since you posted , but I was wondering how you got on with the hat.
A reply from anyone, who uses a red hat would be appreciated, since I bought one 3 months ago.

Try mindfulness clips on YouTube - Michael Sealy Body Scan helps.

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Every night My Pillow issue is mandatory :confused:

Hello Frosty. How did you resolve your bladder problems? I have no problems getting to sleep but then I wake up every couple of hours with a strong urge to urinate. It is often very hard to start urine flow and then I pass only 30-40 mL each time. I have consulted a number of specialists, including two urologists. I have tried a number of pharmaceuticals without success. I also have scheduled a series of Percutaneous Tibial Nerve Stimulation (PTNS) treatments but can’t commence this until next year!

I’m just now considering a red light helmet as well. I’ve been reading up on them.