Not sure whether I'm living as well as I can


#1

My neurologist says I only have mild Parkinsons. I’m on 3 x 125 madopar a day, which I take at 8 a.m, which is a couple of hours after I wake up, 1 p.m and 6 p.m. The madopar usually takes about 90 min to take effect, although sometimes it does not seem to kick in at all, and then the effect lasts for a couple of hours, so I have around 6 hours a day of ‘on’ time.

But I don’t feel I am getting the most out of the medication and functioning as well as I should. I’ve met people with PD who run, play tennis, walk long distances, etc. but I can’t do any of those things. I basically get about 6 hrs or less each day when I’m not walking with a shuffle.

I do 45 mins exercise each day: I spend 5 mins on an exercise bike - which is an effort, then I do the Parkinson’s Warrior exercises, plus a couple of extra exercises shown me by physiotherapists. Then I do the Canadian XBX exercises – that’s an old exercise routine which doesn’t need any equipment, and a set of yoga stretches. I make myself do it, but it is challenging.

But I can’t swim, walk far with comfort, do vigorous housework, or garden, or basically anything that would give me some enjoyment in life. I know other PD sufferers who supposedly have worse PD than me, who swim, run etc. Should I be on more medication, or am I doing something wrong?


#2

I can relate and not helped by everybody you speak to has a different opinion on this. I’m still experimenting and trying to understand what I can and can’t do. On the walking front, I really struggle to walk anything like normally. It really p*****s me off as I love going for walks. However I have found that using walking poles actually allow me to walk in a much better way and for long distances. Seriously try it. It gets you out in the country side, solves the exercise problem and is free.


#3

Thanks for the suggestion of walking poles. Someone suggested these to me a while ago, but I’d forgotten.

I did try alpine walking sticks, but absolutely hated them.