Hi hopefully I'm posting this in correct place. New be


#1

Just told yesterday I have early Parkinson's 58 years old Just after any tips I can get. About. Sleeping and waking up real early Also have ankloysing spondylitis Never meet anybody with this before. So would be nice to hear first hand knowledge i am a father of 4 young adults and married Never been on a forum in my life.


#2

 

Well now you are Ray :)

Sleeping for me can be tricky sometimes i get vivid violent dreams, I need a tired mind and a tired body or i can stay awake the night, sometimes it is difficult too switch off, i tend to take my last dose when i first feel that urge when i'm ready too sleep rather than staying up late just too take a pill to get off too sleep, i also have lessened the evening dose as that is the time i want too wind down rather than being full of beans on a full dose, if i feel very tired during the day and i do suffer from fatigue i'll take a short nap of 30/45 because that is what my body is telling my mind or both, i'll feel refreshed afterwards bit like a dynamo.

I guess it is a balance of knowing yourself best and just another thing you have to work out and work at that can be for me at least complex .to get deep meaningful sleep & rest


#3

Hi sea angler

thanks for the info. I'm not on any meds at moment. Good bit of info from u thanks


#4

Hi Ray b 

pd gives all kinds of problems but you will be fine.  Welcome to the forum , dinna take life to serious it doesn't kill you , you will do a lot of damage yet the main thing is not to stress good luck

ian


#5

Hi Ian thanks for the reply. I was just unsure about this extra early getting up 4,30. Am. And then I'm not tired all day. I'm on no tabs only for my back. 

Ray


#6

I am on med for back as well  ( naproxen )  good luck Ray 


#7

Welcome Ray...I have had the old Parky since i was about 56 but not diagnosed until 4 years later! i wake early too and am like a 200 year old! until the meds kick in then i am buzzing like a teenager...fab! It is such a weird disease with all of its various symptoms. I do not think about the future, enjoy the good days and S*** the bad ones! 

I take co-dydramol for back pain but mainly i use my wonderful TENS machine, would not be without it.

Keep posting matey... there is always someone around to have a chat with and all have one thing in common......MR PARKY!!!!!!!!

Keeeeeeeeeeeeeep smiling

Dolly x


#8

Thanks for the info Ian much appreciated ray


#9

Hi Dolly

thanks for replying. I just didn't know if the waking up was a symptom of just me. I have had loads of tabs for my spondilitis. My back is fused now with it. Pain in the back lol

The only thing I have with the parkinsons is a resting tremor in my left hand. Bit of a pain as I'm left handed. But it only slight. I noticed if I'm worried it shakes more. But I decided this parkinsons can sod off. Haha. Also when wake feel real I'm panicky  but don't no about what about. 

I noticed if I'm real tired overtired my hand don't shake. So got it Sussed now no sleep lol thanks for replying I appreciate it. 

Take care of yourself ray


#10

Hi Ray...you have a good SOH and that is so important when you feel  c*** !!!!!!

The symptoms are def worse when I feel anxious and like you I often wake up that way....but no idea why. My worst symptom is the heavy woozy head iI get before meds are due,  I def do not need to look at the clock! also neck spasms, thankfully I have a brilliant GP who gives me rregular accupuncture for that.

I agree Parky can **** off !!!!  Enjoy the good times, and keeeeeeeeeep smiling matey.....oh by the way I have a t shirt with Blame it on the Parkinsons emblazoned on the front.....causes a few giggles and a few funny looks haha

Best wishes

Dolly x


#11

Hi dolly

hows it's going. 

I just notified the dvla. So they sending a form out. All fun isn't it. 

Was down in England all week. Selling up and going home. Thanks for the reply 

ray


#12

Hi just wondered if there was anybody in Sutherland

new of any groups etc to go to.