Losing sleep with Parkinson’s

[ParkinsonsEurope_Jen]

If you’ve got #Parkinson’s, you probably had trouble #sleeping sometime this week. The #EPDA is developing guidance for how to get a good night’s sleep. As part of this we need your assistance too. Can you help us?

We’re looking for people with #Parkinsons or their #family members and #carers, from all nationalities, to volunteer to share their #sleep stories.

It can be anything from providing an idea for sleeping well, to keeping a diary, or helping us write an article on what it’s like. Your ‘sleep experiences’ would really help us.

Leave a comment on this post, if you are interested in contributing and we will contact you via private message. We look forward to hearing from you – thank you!

[Max2]

I am willing to share my story and have had sleep problems in Parkinsons. I was diagnosed eventually in January 2008 but had symptoms and changes for several years. In the early years sleep was a huge problem and still can be but it is less frequently a major issue now. I expect it may change....

[ParkinsonsEurope_Jen Administrator EPDA in reply to Max2]

Hi Max2! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[beang]

I have a story.

[ParkinsonsEurope_Jen Administrator EPDA in reply to beang]

Hi beang! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[SGlass]

I’m willing

[ParkinsonsEurope_Jen Administrator EPDA in reply to SGlass]

Hi SGlass! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[jackedmonston]

I have been having sleep problems for months. Have home sleep study scheduled with Mass General. Willing to provide info.

[ParkinsonsEurope_Jen Administrator EPDA in reply to jackedmonston]

Hi Jack! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[Lookingforhealing]

Interested. Husband has chronic insomnia and PD.

[ParkinsonsEurope_Jen Administrator EPDA in reply to Lookingforhealing]

Hi Lookingforhealing! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[pdpatient]

@epda_jennifer. Pl include me.

[ParkinsonsEurope_Jen Administrator EPDA in reply to pdpatient]

Hi pdpatient! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[nabus]

Falling asleep is not usually a problem but staying asleep is. I’m trying to avoid pharmaceuticals and have tried natural remedies. Currently I use a Cannabis product with CBD/THC with some success but I’m still not getting the amount of quality sleep experts say we need. By all means contact me if I can help.

[ParkinsonsEurope_Jen Administrator EPDA in reply to nabus]

Hi nabus! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[AlLD]

Yes, include me in the study

[ParkinsonsEurope_Jen Administrator EPDA in reply to AlLD]

Hi AILD! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[AlLD]

Include me in sleep study

[ryzlot]

I AM USING THC/CBD AND IT IS WORKING WELL - Count me in

[ParkinsonsEurope_Jen Administrator EPDA in reply to ryzlot]

Hi ryzlot! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[ParlePark]

Sleep is much better after stopping Amantadine. If needed, I take 10mg melatonin, small amount of 1:1 Cbd/thc. If if really bad .25 Clonzapam, but rarely require Clonzapam.

[ParkinsonsEurope_Jen Administrator EPDA in reply to ParlePark]

Hi ParlePark! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[maungwin56]

I was diagnosed with PD in 2014. At that time, I have sleep problem already and I have been using CPAP since then. I tried herbals, melantonin but not working. I also used Temaze which I stopped later because I have to keep increasing the dosage. My neurologist gave me Endep and later on my psychiathrist chaged to Tofranil and it worked for a while with 25mg. { they are same group )Then, a year later I have to increase to 50mg. Now, I am on 40mg. I get 2hrs sound sleep with CPAP on and wake up. Then , back to sleep for 2 hrs . After that, one hr on my left side and one hr on my right side. I call it a good night sleep because most of the nights after waking up in the middle of the night, it is hard to get sound sleep again.

[ParkinsonsEurope_Jen Administrator EPDA in reply to maungwin56]

Hi maungwin56! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[Missy0202]

I am happy to help

[ParkinsonsEurope_Jen Administrator EPDA in reply to Missy0202]

Hi Missy0202! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[Hiawatha1]

Jennifer, please include me in your sleep study.

[ParkinsonsEurope_Jen Administrator EPDA in reply to Hiawatha1]

Hi Hiawatha1! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[horsplay]

I'll be happy to help.

[ParkinsonsEurope_Jen Administrator EPDA in reply to horsplay]

Hi horplay! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[Gigglers3]

Very interested in your sleep campaign - please include me. Regards, Gigglers3

[ParkinsonsEurope_Jen Administrator EPDA in reply to Gigglers3]

Hi Gigglers3! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!

[GillRob4]

I am happy to take part, my sleep is dreadful and have tried many different things.

[ParkinsonsEurope_Jen Administrator EPDA in reply to GillRob4]

Hi GillRob4! Thank you for your interest in getting involved in the EPDA sleep campaign. I have sent you a private message. Thx!