Good too see you have noted improvement from those early days of the initial dose , My PD nurse asked me once 'do i think my body is asking for more' which i could only answer yes, so my dose was was slightly increased and I noted further improvement.
I am happy with where I am at now with the pills, but that's not too say everything is Perfect , there are lots of variables to each & every day or part of day or indeed night, Perhaps I or others could do with other help in other area's Physiotherapy or speech therapy to name just two beyond that of pills alone.
I don't think there's much truth in if ldopa doesn't work then you don't have PD, others are on other drugs which are not ldopa family associated or treatments of drugs at other levels their's might need adjusting would that mean they don't have PD either? very doubtful. or as i have said help 'beyond the pills'.
As our individual experience of this illness moves along we adjust to symptoms and manage, the symptoms adjust as does our awareness of feeling on or off we may become more reliant on the pills to stimulate that dopamine as natural stimulation is lost.
havent posted anything for a long time I have been quite well until Christmas time the medications im on appear to have stopped working. I had a PD nurse appointment in January this year...the result was to increase Stalevo at 12 noon and 4pm because the tremors in my right arm and leg returned.
My meds are Salevo125 8am 12 noon Stalevo 150 4pm and 8pm
Half Sinemet CR 25mg/100mg night, Clonazepam750mcgs night Aspirin 75mg daily Atorvastatin 10mg night
Adcal-D3 x4 daily. the increase in Stalevo didnt do much except to give meunpredictable tremor/dyskinesia
I saw my consultant 2nd June he added Rasigiline to try to smooth it out. I now feel dreadfull sometimes tremor often dyskinesia which is really disabilitating then I feel totally exhausted after and lethargic also weepy(not at all like me) and my speech is affected in that i cant always get my words out........so i shut up (also not like me:) ) I have an appointment to see pd nurse 31st August2016 and i see my consultant February 2017. has anyone got any advice please? is the next step DBS I am 59 and was diagnosed 10 years ago but have had pd since age 45 at least. thanks x
I am on madopar with entacapone running alongside I was offered stalevo to take as a combi pill rather than the two pills but reading i didn't think the combined dose was as effective in what it delivered so i declined it as currently madopar & entacapone is doing its job and is a little more versatile that i can alter the amount of madopar to suit me at different times of day and not me suiting the pill.
I was also offered clonazepam but also declined that to for the reasons i didn't want too feel like a emotional zombie on top the fatigue i already experience, It didn't seem like a good deal, I can find other ways around it without adding a extra pill.
Well for the last 3 days I have been able to open and close my hand as normal make a fist etc I thought I'd turned a corner but today my hand just doesn't seem as responsive and the dystonia has took over and it has gone back to it's claw state but not as tight as it was before I started the meds.
Guessing being able to open and close my means the meds have worked? Do you think an increase in meds will increase the movement and rid of this dystonia?
Was nice to be able to use my hand for the few days just for the simple things like picking up my drink etc... missing being able to use it already.
Very difficult to give advice/suggest anything except that, based on my own experience, keeping the number of different drugs (or even the dosage per drug) to a minimum and when you've been doing well on that, but after a while it's no longer effective , slowly increase the existing drug dosages rather than adding another drug, unless unpleasant side effects are the reason for change.
your no so good just now ! It's all swings and roundabouts this Dam PD , was planning. For a load of us parkys to meet next year somewhere in Britain don't know where but it would be good crack a hotel or something fill of us shakers , you up for it 1year to plan it ??
I have recently had problems with claw toes which has stopped me from walking. I feel i have no option but to take more meds. So i am taking stavelo 150 every 2 hours. i think thats about 0.015g daily, also got neupro patches. Anyone else taking this much or more?
Also on clonazepam which i now find essential and with no sideffects after a while. cured restless leg and helped sleep (though this is 2.47am!).
Seratonin reuptake inhibitors are likewise useful for stopping depression, bad temper and help me to think.
I am now in favour of trying duadopa pump instead of dbs because of cost, dangers and side effects of dbs.
