Excessive sleepiness/fatigue

Hi, my mum is 62 and has advanced Parkinson’s disease. Has anyone experienced extreme sleepiness during the day? My mum can get so tired and I wondered if it’s a side effect of her co carledopa and if anyone has any tips of how to make it better?
She also fell asleep before her carer came for her bed call the other night & she was completely unresponsive. If my mum does fall asleep she’s a really light sleeper so was very worrying. She ended up having to phone an ambulance. She made a full recovery but the paramedics couldn’t explain the 30mins + of being unresponsive either. Anyone else had experience of this?
We’re waiting for her to start on the apomorphine pump so really hope this helps as her quality of life is so poor at the moment.

Hi @alisonlouiset,

I’m sure you’ll hear from other members soon about their experience with fatigue, however, it’s very common for people with Parkinson’s to experience fatigue - almost half of people with the condition experience this symptom.

The effects of fatigue and Parkinson’s vary from person to person. They can change from day-to-day or even hour-to-hour which could explain why your mum gets really sleepy during the day. We have more information on this via our website here - https://www.parkinsons.org.uk/information-and-support/fatigue.

If you’d like to speak to someone over the phone about this, you can always give our helpline a call and speak to one of our advisers who’s be happy to speak to you in more detail on 0808 800 0303.

Best wishes,

My dad has this. I started a chat re coffee as nee here but we have found it really helps him. It seems to make his meds work better and I can tell how many coffees he has had by how he looks and how tired he is.
In hospital at moment and a couple of days ago was far too tired to do anything with the physios, I gave him a black coffee into his ng tube and 20 minutes later he decided to get up and go for a “walk”.
It’s worth a try

Thanks so much for your reply. Comforting to know my mum isn’t the only one experiencing this. When I was younger my mum used to get migraines if she took coffee so she switched to decaf for nearly as long as I can remember now. It’s definitely worth a try though. Hopefully wouldn’t give her migraines anymore and would work like it’s doing for you dad. Thanks again

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Very welcome. Also make sure that she doesn’t get dehydrated as that happens easily and has very adverse effects.
Good luck. I look forward to seeing updates. Maybe try a small amount a few times a day, around tablet times and see is any improvement 20-30 minutes after and go from there.

My husband has this currently during the morning. I have great difficulty getting him to respond when his medication is due. I have tried various things with overnight medication, ie letting him sleep through, or giving him levodopa if he wakes 4-hourly. Neither seems to make a difference to the morning comatose period. My problem has been how to safely give his medication. I am putting the contents of his pills in infant smoothie mix and following with water. I turn his head to the side to prevent choking and he has a small bolster pillow that keeps his head elevated. But it can be funny too. He likes me checking his mouth with a torch when he is concerned about it, so I use the torch to see if the medication has lodged anywhere. And he can hear me tell him what I am doing. No doubt this is not ‘regulation’ but one thing we learn with Parkinson’s is to be creative with safe solutions to a wide range of problems. No one has suggested another drug to deal with these morning sleeps and we prefer not to mess with what works for us now.

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I experienced this a lot when I finished work and mega stressed, plus on Premepexol. Quite a combination, however brain stimulation has helped me to now go through the day and sleep better at night. I started off slow tasks, eg writing, bit of talking, bit of tv, walking every day, I have a dog. Spending time with grandson. You will be surprised how little variations in short measures ignite the brain waves. Slow simple steps j

I should add that my husband is 81 and has Lewy Body dementia so his challenges are many.

I also use a torch when doing dad’s oral hygiene (no tube) and often I take photos/videos so we can both see exactly where we need to concentrate to get his mouth clean. He now is interested enough that sometimes I hold the torch and a mirror and he then uses the swabs to clean his mouth, and it allows him to have some control over his care. It’s easier as apart from PD he is very compos mentis

I agree with Jules47, dad writes a day book, we watch videos I take of what is going on at home re dogs, birds, countryside, music etc and we do visits etc to stimulate him. It’s amazing how a few good experiences can have an effect for days.
Good luck

Your dad is very lucky to have you. I like the idea of the videos. I’m presuming he is in care. My husband works on a memory book with a carer who helps us a few hours a week. I like to tell him the news of the day too. Keeping him in touch with politics and the outside world. Even with dementia we enjoy talking. Of course, things kept changing dont they? Some symptoms disappear and others emerge. It keeps us on our toes. :laughing:

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Hi Vanessa,

Dad’s not in care, (in hospital at the moment) after his operation next week he will go home. I have arranged for someone to help mum first/last thing with dad’s care (but hoping he will continue to improve to assist) and I will be there at points during the day to ensure his care continues.

They definitely keep us on our toes. Dad had an amazing day yesterday. Absolutely loved it. His humour was back and a big twinkle back in his eyes. Tired today but still good and heading back into better health. :crossed_fingers::crossed_fingers::crossed_fingers:all round

Keeping the enthusiasm and stimulation is so important and it keeps things interesting for us. Take care, have a lovely weekend

I’m so pleased your dad is on the mend. And that he can be home soon.
Take care. :laughing:

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