Hello everyone


#1

I’ve been around on the site for a while now and thought I should get round to posting something, I am 56 years old and was diagnosed six years ago after noticing a twitchy thumb which I saw my GP about and was referred to a neurologist. Fast forwarding to now I’m currently on Requip and Sinimet to try and control the tremors and poor walking gait which are the two most noticable aspects for me. The meds are still working and the ‘on’ times are still okay with me being able to do most things, walking much improved etc. The ‘off’ times are getting rough as I can hardly turn over in bed or get in and out sometimes. I say to others nowadays that I am like two seperate people now.
I know I’m fortunate that the meds are doing as well as they are but I suspect they are lasting less time and taking longer to kick in than before. I have also recently been trying the Apomorphine pen injections and they are proving helpful.
Personal background, I got early retirement from my IT job a couple of years back, I’m married with two daughters and live in Devon. Ok, that’s about it. Good luck to us all !!

Graham


#2

Hi Graham
I take sinemet as well morning and bedtime but it never helps with turning and sitting up in bed. I think that is down to lack of core strength in my body and a painful shoulder (probably osteo arthritis) Im treating myself to a gym membership for Xmas as I think the regular excercise and swimming will do me more good than the meds and only have positive side effects.
Trefor


#3

Hi Grahamp62,

You should try silk/satin sheets and pyjamas for help with turning over in bed.This has made a great difference to me,it was my pdnurse who suggested this and it certainly has helped,you do need satin pj as well .Hope this info helps.cheers Anne29


#4

Hi Trefor
Thanks for the reply. I’m sure the gym idea is a good one as most people seem to agree exercise is very important and can help in many ways. I do try and get in some walking but I find if I do the effect of the meds wears off more quickly and I can be left having a bad time to get home again. I get very painful lower back problems when my walking is off. It seems very odd but I often find it easier to jog along than walk normally … !?

Graham
+


#5

Hi Anne
Thanks for the reply. My nurse also mentioned the silk/satin sheets idea which I may yet try. I’m not sure it will do much though as it is more a case of getting stuck in a position somehow. Kind of hard to explain really … sometimes I think it seems more of a mental block as I always seem a bit worse when I actually head upstairs.

Graham


#6

Hi Anne29,
Thanks for the tip. I bought the satin sheet but found little if any improvement. I didn’t realise you had to have satin pyjamas as well. Seems obvious in retrospect. Gerrard


#7

Hi,no i didnt realise either and it did not work with me till I tried the pyjamas,they made all the difference,Hope they help you.
Cheers AnneD


#8

You sound very positive It was a treat to read your post it makes me feel better to know that some of us are coping with out symptoms pretty well t not to go against those who cant. I have moments when Im off I’m feeling sorry for myself. I wish you all the best things that life could bring
t. hose who aren’t sometimes get moments when I’m! feeling rryt!


#9

Sorry about last sentence should have been deleted b


#10

Graham Hi speak to your neurologist or nurse. I could hardly turn ovrt in bed due to stiffness then I wax given sinemet slow release to take before bed say 11pm and it has been great help. Wake up no stiffness. As for your on, off times again if you are too long off and meds take a while to kick in then ask for a tablet to take with sinemet to help it last long. I was told you should live with parkinsons not let it rule you. So dont put up with things.


#11

Hi Stouty

I already have the slow release sinemet 25/100 tabs and I’ve tried one or two at nights but I don’t really see much effect. I’ve also tried rasagiline which my pdnurse suggested but didn’t expect to do a lot (which it didn’t …) My sleeping has never been good but now when I’m awake at night the tremors make getting to sleep harder than ever. I am living with it but it sucks!

Graham


#12

I take half sinemet CR 25mg/100mg prolonged release tablets x2. It could be diff to what you take. If not spk to the nurse. A good sleeps helps with coping with Pd. Hope it gets sorted