Thanks sue i am just grateful i canask questions and would reallly appreciate anyonwees advice on how to keep positive when my body just keeps shaking.

Hi Adelaide,
You should definitely go back to your doctor or see a different specialist.I recently moved to London and saw a new consultant and hospital clinic two weeks ago,who specialise in treating patients with younger onset PD.I was told i was undermedicated on sinemet plus twice a day.They have recommended neupro patches plus sinemet plus 4 times a day plus azilect.I am just getting started with the new regime.
Given that I am 47 and diagnosed for 4 years,I was told that they regularly see patients who are not being given sufficient medication.I was previously seeing another hospital who i thought knew what they were doing. Remember the majority of doctors only ever see older patients with the condition and their needs are very different.Sounds like you may be in the same boat. You are busy with young kids and need the energy to cope. Whilst medications will eventually work less well in time, this must be balanced with your quality of life (or lack of).Best of luck.

Hi
thank you for your replies. I do need a change of meds at the moment i am replacing the two 8mg patches about 4pm each day which i think is wrong to do. I think it will be better to change meds when kids are back at school as i believe it is unfair for them to have to deal with the changeover time. Is anyone else on 16mg neupro and do you feel bloated and uncomfortable all the time and i have also become very animated with my arms. I have put on about 3 stone since on these meds. I would love to hear other peoples experiences on neupro. Thanks

Hi My husband has been on sinemet plus and the neuro 7 yrs and the neuro patch 2 yrs 6 mg . I thought that the patch was helping him mentally although his mobilty still very poor . He has had a few nasty episodes of hallucinations and disorientation, hearing and seing things and holding conversation while asleep .
I have put it down to some of the other meds he has been taking . such as digoxin or codeine which I have stopped giving him .

2 months ago he sarted dropping off and twitching badly about a half hour after taking the sinemet and has been reduced to 10mg thinking it was maybe too much for him . Of course it could be really not enough .

Luckily we have another appt with his consultantant on Monday because he has been dreadful , hallucinating eating food of the table which isnt there all sorts of things . It;s been very hot so I wondered if it might be be caused by dehydrating so have been giving him plenty of drinks cood lemonade etc .

Didnt put a patch on today and he started to improve see what tomorrow brings .

Hi,
I am at a cross roads medication wise, and don't know what to do.
Have been taking mainly Madopar, plus Selegaline and small amount of Miripexin ( slow release). I am almost at maximum dose now, with the Madopar
I'm finding it's wearing off quicker now, and I often have to take a dispersible dose of Madopar, as a rescue, when things get really bad. Mainly to cope with the dystonia in the abdominal muscles, which can be crippling.
My specialist is asking me to consider neupro patches, and I'm not sure.
I was given Ropinerole when I was first diagnosed, and while I did very well on it , I did have a big problem with oedema in the ankles, and that was when I stopped the Ropinerole and went on to Madopar. That problem was completely resolved
I know it's a different drug , Rotigotine, in the patch. Does anyone have experience of the efficiency of the patch method of receiving the drug? I'm frustrated now because it's so hard to plan things you want to do , knowing that you may not be able to do it when the time comes.
Any thoughts appreciated.

Am just flagging my question re - patch, up again, in the hope that someone will give me the benefit of their experience!