|Graph showing relationship between drugs taken and perceived effects. Click for full-sized version|
Left vertical axis
L-dopa = co-careldopa, 125mg 3 times daily
Pramip = Pramipexoles, 0.7mg 3 times daily
Amitryp = Amitryptiline (now discontinued; not helpful)
Gabap = Gabapentin (a muscle relaxant), titrating (=slowly increasing dose) to 300mg 3 times daily
Clonaz = Clonazepam, 0.5mg once per day
Horizontal axis is time.
Right vertical axis is my digitised perception of sleep quality, muscle (neuropathic) pain, motor control problems (fumbling because hands won't do what I want) and slowness (bradykinesia). 0 is normal and 10 is as bad as can be.
Once set up and understood by me (thanks to Dalmae, my daughter-in-law who knows spreadsheets inside out), these records are quick and easy to update and charts like that above will be the core of this blog from now on.
Conclusions so far: need to stop short-term experimentation with doses and persevere with main drugs, adding or subtracting other hopefuls from time to time. Short-term stopping and starting (see February, above, when I became convinced that the meds weren't helping!) are a mistake. At present, I am titrating gabapentin to a higher dose, as agreed with Dr Rhys Davies, my neurologist whom I saw last week. This may be having a useful effect. Time will tell. I have - at last - got an appointment to visit the main hospital Pain Clinic where they may have some useful advice to offer on pain management. Meanwhile I continue muscle-stretching exercises (an eclectic mix of qi gong, pilates and standard physiotherapy) which I have been doing almost every day for over 2 years. And, of course, there's hard physical work to be done on the farm which I continue to find helpful. Inactivity, particularly sitting, remains problematic. Hacking out hundreds of bramble roots is a current favourite as is getting massive branches of ivy out of the poor trees.
So what neuropathic disease do I have? The best we can do at the moment seems to be a form of Parkinsonism but clearly not Multiple Systems Atrophy in which decline is rapid. My condition seems to be stable on my regime of drugs and exercise. Not ideal but I can live around it.