ON / OFF EFFECT OF MEDICATION & SLEEPLESS NIGHTS - Attn. LIN


#1
Hi Lin,

I fully understand your worry about bladder control. 4 years ago I was trying to cope with everything at once:- I needed a hysterectomy because of very heavy bleeding and a lot of pain and discomfort, I also needed surgery to correct a prolapsed bladder (I spent most of my time busting to go to the loo, but unable to because my bladder wasn't in the right position and then all of a sudden, well, I'll leave you to guess the rest!) I was also going through the menopause and then to top it all I was told I had Parkinsons at the end of 2008 when I was 56.

Well three years ago now I had the hysterectomy and the surgery to sort out my waterworks, which made me feel much better, but now I'm starting to get a bit of problem with my waterworks again due to PD I think. Oh and in the meanwhile I've started with osteo arthritis as well. So I've gone from being realatively healthy to a walking disaster area, or perhaps I should say a shuffling disaster area!

Anyway, my physio lady, the other day suggested discussing the PD problems with the Parkinsons Nurse, so I've got an appointment with her later on this month.

I wanted to ask you, when your tablets aren't working do you experience pain as well as immobility? (I do). And also I talk about the on / off effect you talk about freezing, I'm not really sure whether this is the same thing or not?

In the meanwhilke hope you're having a reasonable day, (I've had three dispersible tablets today).

Leogirl x

#2
Hi leogirl - three and four years ago sound to have been very uncomfortable years for you.

At the moment, I seem to spend more time 'off' than 'on'! To describe 'off' periods is extremely difficult. Quite often just after taking a stalevo, I suddenly feel the muscles in my back twisting and stretching and tightening. It is very uncomfortable. I keep getting stuck in places that I can't get away from eg. the sink in the kitchen. Sometimes I have to crawl on the floor. 'Off' usually means a time of staggering/crawling aimlessly and painfully, trying to get to safe places with everything close at hand. But usually, I find that things have been left a million miles away for me to fetch from the bedroom or kitchen. - eg how long does it take you from one end of the house to another? !'Off' sometimes means panic attacks.

My sort of 'freezing' means you get stuck/glued to the spot and can't move in any direction. It often happens to me in supermarkets. I get in people's way and they dont understand my mobility problems.

I have arthritis too - very lumpy/bumpy fingers and nails. I don't take any meds for this -- yet!
I must go to bed now - I am so tired surely I will sleep!
I hope all this made some sort of sense.

Speak soon,

Lin
xx

#3
Hello Lin,

I've found an information sheet on this website entitled "motor fluctuations in Parkinson's" ands it pretty much describes my symptoms. It also answers my question about freezing / on off effect, apparantly, as I suspected, they are not the same.

Regarding the pain, when I switch off I feel my lower back tighten up and the pain sort of radiates from there because it is so much effort to do anything or to move. I can't manage to get down on my knees to try to crawl, (I would try if I could). I just have to make constant efforts to keep things organised in such a way that I can get to what I want or need. Needless to say, it doesn't always work! I can just about manage to move short distances by holding on to whatever is available to prevent me falling. Some places in the house where there is nothing to hold on to ie across the middle of the living room I use my walking stick, although there are times when I can't manage those bits at all.

What usually happens is I take a dispersible tablet and lay on the couch for at least half an hour until it passes, but those tablets don't really work if I've recently had protein, ie it doesn't do much good taking one after I've had my dinner in the evening.

I have to arrange going out anywhere around my off spells. Its happened a few times when Ive been out in a restaurant in the evening and my husband/friends/relatives have had to help me out to the car (with me feeling most embarassed because onlookers, I'm sure, must think I'm drunk!)

Anyway, I'd better go and do other things now, sitting at this computer quite often has a bad effect on me!

Hope your having a reasonable day Lin, take care.

Leogirl x :smile: