Dyskinesia Trial

[Blue-jeans]

My sister and I were today invited to participate in a month long medication trial for Dyskinesia, I don't qualify as I don't 'squirm' So Jenny will have to go alone. She has participated in two trials, and says they are like rest holidays with benefits! I'll share any info I get on this!

[mktbob55]

Please keep us informed

[Blue-jeans in reply to mktbob55]

will do, but these meds will probably only be on the market in 3 to 4 years time!

[Beemacs]

Where is this trial? Dyskinesia is driving me (& my family) CRAZY!!!

[Blue-jeans in reply to Beemacs]

I South Africa I understand, my sister is badly affected by the squirms and rolls I don't have it, I'm convinced it's overmedication that does it!!!!!

[Beemacs]

I call it the wiggles. I think it's too much meds, too but, I haven't figured out the right dosage to keep me moving without having dyskinesia.

[paddyfields]

It was suggested to me that over 150 mg levadopa in one go is some times the cause in those susceptible I had already come to this conclusion myself when I started taking extra in the morning in one go. It was this that finally persuaded me to start on the Neupro 24 h patches which smooth things out as well as being a increase in meds

I am usually all right if I take an pill a bit sooner or add one before strenuous exercise

Either I don't get the squirms (not very bad) or I've exhausted my reserves by the end of the walk etc.

[Blue-jeans in reply to paddyfields]

interesting I'm going to share this with my sister. coincidently she was on the trial for the Neupro patch about 10 years ago, but as far as I know it's not available in South Africa

[paddyfields]

I should perhaps make it clear I am still on four sinemet a day and 6mg patches as well. My dyskinesia was nothing like what others suffer but I was alarmed just six years on from dx to be starting. I see your sister has been a PWP for at least ten years. The one thing that stuck I my mind when I was researching after dx. was that over medication for PD can produce the same symptoms as under-medication. I am now 76 and we all know the tendency to over-medicate the elderly

[JWebb994 in reply to paddyfields]

Paddyfields,

I wrote quite a long reply about my under medication in another area. I am 74, almost 75, and there is now no doubt in my mind that I was under medicated since the problem is so much better now that I found a doc who would increase my meds instead of decreasing them.

[Hidden in reply to JWebb994]

i was taking sinemet 25/100 with a extender worked great for a few weeks but than i would crash 3 to 4 times a day the highs wre very high could rule the world but the lows were low of the low

stiffness fatigue sleepy unable to walk write

it would come on in less than a minute and last from 30 minutes to 3 hours

this is what can happen if you are over medicated best to take the least amount as possible

i don;t take my meds as Rx i take them as i feel the need

you can learn to read your body

it will tell you what and when you need your meds

i don't feel the need to feel on all the time

when i don't need to be on to do something i just relax and go with the symptoms i have only two things that bother me when i am off my right arm hurts and i can't move very fast

i find this it makes me enjoy the on times more

when a doctor says to take so many meds so many times a day he is making a educated quess you must decide by your on experince what works for you

[Joanne_Joyce in reply to Hidden]

Bailey, Maybe you should talk with your neuro about this. My new neuro explained that my previous med schedule was confusing my brain and that's why I was off and on so much. He explained about the importance of a smooth med cycle. I'm much better now that I've made the adjustment.

[cabbagecottage in reply to Joanne_Joyce]

in what way did you adjust your medications Joanne Joyce , My husband has always spent more time off and I do mean off almost coma like , than on.

I have asked if they think it's too much Sinemet flooding the brain but afraid now to stop . he has been in Sinemet for eight years. Sinemet plu ps xthree also Sinemet CR 250 at bedtime .

they have recently introduced a low does Memantine to help his thought process which I think given half a chance is helping . it's the switching off periods that is the biggest trouble . .

[Joanne_Joyce in reply to cabbagecottage]

I was taking Stalevo and alternating it with Myrapex every 2 hours. My new neuro said I need to take them together every 4 hourss. I hope your husband is seeing a movement specialist. It appears his present meds are not meeting his needs now.

[cabbagecottage]

john Was and still is a very stoic man . because of this I had no way of realising that really most of his life he had been just getting on with Mr Parkinsons . he would never ever complain but, , '! . there were times when I didn't quite understand something and ask if he was alright . he could never stand in a crowd I thought he was impatient !! couldn't hold his gaze while taking to someone . Could not go up a hill slowly . A drooped very painful shoulder and nightmares . Old take ages to answer me .

he held down a job as information and press officer and wax very well thought of . he worked instil they're eat age .

while coping with mum who had ahead a stroke he started to fail . Diagnose eventually firstly with high BP. Well would t anyone's BP w be high with what he was living it's . Stopped those meds a soon as we realised it might b parkinsons .

he started on Sinemet but they never helped in my opinion but the consultants insisted he was doing ok .. That was eight years ago h is now 78 . Other than parkinsons he has got Atrial fibrillation , he is ok .

whilst being assessed for CHC they gave him a mental health assessment , other than seeing a care of the elderly who also saw parkinsons has never seen one .

She diagnosed Parkinsons dementia . . I think it could even be Lewy bodies . She is trying him on Memantine now . They appear to help a little but the Sinemet makes him a complete mess . He is sleeping or might I say switched off and dystonic ..

took me two hours to get his dentures back in this morning . That's after cleaning his mouth he needs adhesive on the top denture . .

it's harder for the carer to make a diagnosis it's not me that has the illness. I hav done really well well so far but after all I am not the proffesional am I .

his memory is still excellent . Can still be witty .

[oceanflower]

Interesting that you were both diagnosed with Parkinson's. My sis and I also share neurological problems - she has MS and I have Parkinson's. We have the same neurologist, but he didn't seem that interested in the fact we both have neuro diseases. I wonder if there is a genetic link somehow....