Life with MND - 2013 - June - Part 1

June

The Physiotherapist introduced ‘breath stacking’ as a exercise to help the respiratory system, but being a believer in euthanasia and considering prolonging an already diminishing life style I was reluctant to get wholeheartedly involved in it.

However after many hours of seriously thinking and analysing the situation, and considering the dedication and great ‘backup’ from Jean, family, friends and the ‘care team, plus having no pain and sleeping well,  these all helped sway me to deciding quality of life is still good - and so I’d go for the exercise: meaning deep down there is still more living to enjoy!

However I’ve faced lots of body deterioration in a long road travelled since diagnosed and to try improving the respiratory system is contrary to my beliefs, after all I’ve already decided if ever on life support machines I’d opt for  no DNR (do not resuscitate).   

I had two low and negative days in May. I always say out of adversity if looked for one will find positivity. In this case it was the appreciation of all the positive days I seem to be blessed with.

After keeping a diary since joining the Civil Servant in the mid sixties reluctantly I’ve had to give up attempting to write it up, because I can no longer control left hand. I now type important details on the computer.

Muscles that support the upper body and head have been weakening for a period, but most noticeable now as its affecting my vary-focal spectacles. As head drops down, it puts the spectacles out of focus. Consequently I’ve continually to lift my head to see clearly. It’s so important to approach problems with an open mind for answers and on the 15^th I suddenly thought ‘why not try my discarded bi-focal spectacles’. Low and behold, I found them far more amenable than the vary-focals to the degree that I’ve reinstated them and now wear them daily at some time.   

  Unlike respiratory exercise where there’s a bit of negativity I will tackle posture improvement with gusto whilst muscles still able to respond.

Whether it’s because I’d stopped using an antiperspirant on the groin area or not, but I formed a skin rash. We called in the Doctor who prescribed a cream. With very little movement in that area in the chair, but especially in bed,  I’m inclined to think it’s caused by sweating. An ideal setup for a fungal skin infection to incubate.  Anyway after ten days the cream cleared up the rash, and never having a similar infection in the past 7 years of wheelchair confinement I’ve reverted to try using the antiperspirant again, but will monitor closely. Two weeks on, I’ve had to revert to prescribed cream, so it looks like it may be  a recurring problem.