Walk with Jay

It was good to see Jay and I felt better for the walk.  We did the Dance Lane, Gudgeon Hole Lane walk and then back across the field, avoiding where possible the incredible amount of sheep faeces along the path.  I probably wouldn’t have walked without him, especially if I had to negotiate the last stone stile on my own.  No problem when I’m feeling ok but not good if I’m feeling a bit wobbly, which I was.

I haven’t been feeling good in the afternoons and I think I know the problem, which is too little Madopar .  Although I’ve been  told that I can manipulate the dose and take extra when I need it by the consultant, I’ve found in practice that if I build in the times when I can’t eat, i.e.30 mins before a dose of meds and an hour after I’ve taken them, then it limits the extra ones I can take in a three hour circle, let alone a 2 hour one, which is the minimum time I should leave between doses according to my Parkinson’s Nurse.  Such a regime, means that my waking hours are focused on medication and getting it right and not allowing the time I would like to get back to the things I enjoy doing, like photography and art.

I’ve been documenting what’s happening on a diary tick sheet with comments, which is a far more visual way of doing it than I was using before.

So I’ve been experiencing gut ache after the 1pm meds and I’ve been almost incapable of doing anything after the 4pm meds, and it’s been a hell of a long time to sit out the hours to bedtime. I live on my own,which means I have to be capable of preparing my own food and looking after myself.  So, as I had been given some freedom to experiment with the dose and timings I decided I needed to take two doses together and revert to a single full dose at 4pm which has been working much better.

I’ve now got to decide about the 1pm gut ache.  My experience of this in the past is it’s a sign of the ‘off’ period in the cycle, when I don’t have enough Dopamine in my blood stream. Now given that the purpose of this experiment is to cut out some of this unpleasant feeling in my gut, then this action, it seems to me is counter intuitive and I should be on a full dose at 1 pm, though my timings will probably need to be adjusted.

Just to add that the morning half doses seem to have been working up to now. But my experience is that this can change and is not always a fixed thing.  I’m just about to enter my 6 month of trying to get the medication right.  One thing I would say is my IBS (which I’ve never had before) has adapted somewhat to the effect of the Madopar on my gut, and I think I’ve learnt a lot more about what foods my gut can and cannot cope with alongside Madopar.

P.s I took my camera out to record the acers that are close to the house.  I’m very conscious that I could lose them this year if I don’t keep up the watering and I seem to have lost the spray end for my hosepipe.  The forecast is for a few more days of heat and sun.  I don’t think we’ve ever had a spell of hit weather like this that has lasted so long at this time of year