Hi there fellow shakey parkinsonians !!
i was diagnosed with my PD at the age of 32 im now 52, ive been pretty stable the last few years after my hole in the head brain operation (wide awake club)my medication stands at STALEVO & SINEMET 110 (1/2) Every 2 hours but the last 2 weeks have truly been a struggle to say the least, firstly i was thinking my body reacts differant when the winter months set in but this is differant, my body freezes up big time, cant move, talk and walking with 2 sticks is a must, i do the harlem shuffle quite well, this happens about 3-4 days a week . im wondering do i need to up my doseage which i know is low compared with others, or maybe my stalevo needs changing ?? i know i need to get in touch with marilyn my pd nurse for advice but thought id ask here to see if any of my parkinsonian friends have similar or had similar problems ??
hope you are all coping and stayin warm plus behaving yorself lol of which i doubt hehe
perhaps its come to the point where you don't have enough neurons left to turn levadopa into dopamine? II believe there are effective post-levadopa medications but I am not very familiar with them. hopefully someone with more experience of them will have something to say.
either way sorry to hear you are having difficulties and hopefully you are getting to see your neuro soon.
I can only share with you my routine which is working at the moment - if I could carry on with this regime and not get any worse - I would be a very grateful woman!
I take stalevo 100 at 7am 10am 1pm 4pm and 8pm. Extra to this I have requip xl 16mg a day and one sinemet cr at night.
Up until recently - I didn't think this was working, in fact I thought it didn't do anything at all!
The difference now is
1) exercise (20 minutes 5 days a week on exercise bike)
2) small meals - little and often not long after taking stalevo tablet (don't eat just before a tablet)
3) coffee (many, many thanks to friend on another site) - if you can feel yourself 'going off' two or three sips of black coffee work wonders - well it does for me.
Like I said - if only this could be guaranteed to work forever!
Have had Parkinson's 17 years and I HATE IT!!!
I have just tried your tip on black coffee and it WORKS !!! Many many thanks
I'm glad. Don't overdose on the stuff though! I only drink it if I feel I have to - so restrict to about three or so times a day. Also I use a cup not a mug.
My first stalevo of the day at 7am does not seem to start working until I have a cup of tea twenty minutes after taking the tablet!!
All in the mind??? If it works, don't knock it!!
lin - its great to hear your meds are working better.
am trying a little diluted black coffee.
also happen to be stationary-cycling.
have realisedd cant let pd be n excuse for letttng general health go to pot!
Thank you Lin !! seems to me you are on the same meds as i am , so im gonna check out yor tips about the smaller meals, coffee etc ..........ya never know might kick my meds in earlier and last longer
thanks very much
big welsh ((cwtchs)) xxx
took my first slow release sinemet cr 125 last night .added this tablet to my bedtime meds,whow what a difference not so achey ,mobility better in bed ,turning & moving round.woke up in morning feeling good,your right turnip i think meds are just as important through night time as well as day,would recomend to any one who suffers at night time, no ds aswell no problems to report ,better sleep.
ds means dyskinesia forgot how to spell !
Think i might let the wife have the velvet bean ,turnip, for her hot flushes & feeling tiredness. i feel great thanks to sinemet cr, might look at swapping over from normall sinemet to cr in the daytime, as im really sensitive,wait and see !
ah but............. using sinemet cr all the time was associated with increased dyskinesia...no idea why, would expect the opposite...you need to speak to a professional first
only useing sinemet cr at night time at mo,but if swap to cr in daytime would be a slower release & maybe steadier and not so much a big hit! what do you mean cr sinemet associated with dyskinesia.?thats what i thought a slow release would be better if im sensitive to meds, little better at smaller amounts ,instead of one offs!
thats what i would think too but some study came the opposite result - who knows what the truth is?
ok thanks turnip , feel good at mo,So why try and fix ,if not broken.
I am on sinimet cr 125 i was on 200mg and i had severe night time dyskinisias i was workiing at the time and i was finding that they could go on for 1-2 hours sometimes longer and getting up for work maybe a couple of hours later i was exhausted but thankfully i was reffered to a new consultant and the dose was lowered and along with mirapexin pr taken at night things at least at night are on an even keel, if only the days were the same.
been for 2yr check up today for dbs doing well i did say i have better days than others ,and my pd nurse asked what im eating said alot of cheese ! big no no