Life with MND - 2013 - August

August
Physiotherapist gave me neck exercise to try and stop head dropping. Although I do them religiously four times a day, I’ve a gut feeling that it’s a bit futile, as functions lost with this disease are gone for ever. Mind, tilting mechanism recently added to existing chair has definitely helped whilst on computer or giving back eye contact when visitors in.

Occupational Therapist got us ‘back up’ for transferring from chair to shower /toilet /bed. It’s called Arjo Stedy in the hope it may put off using hoist in the coming few months. Outcome is, it certainly solves the toilet issue at this time. 

When family and friends visit now they may well think I’m not interested in their conversation, because of no eye contact, but thankfully I’ve still a great interest in other’s and through circumstances now a very good listener. As core tiredness progresses I’ve got to ‘weigh up’ that any remarks I make on my Lightwriter are worthy of the effort involved.

Biting tongue or cheeks in the past month seems to have become the norm, whether, chewing, sucking food, yawning, or at times just swallowing saliva (and as people know, once ulcers are established it’s hard to avoid them). At this time using TCP (liquid antiseptic) mouth wash three times a day. For the ‘professionals’ to ponder.... would a gum shield help?

Another noticeable deterioration as MND trundles on, is the first attempt when I bend head to take a drink at any time, is aiming mouth with straw.

I still get bouts of ‘runny nose’ mimicking a cold, usually at meal times or drinking a glass of juice. Mind is convinced this is a body safety valve for getting rid of phlegm.

Through ‘being a creature of habit’ and regular exercising, it is very noticeable that hardly a week passes now without losing another function. Character building and frightening to say the least!

To end on a brighter note and as body deterioration progressively worsens. The up side to this ‘hellish disease’ is I now embrace and appreciate all that has been good in our country and in my lifetime and certainly don’t dwell on negative thoughts of putting the world to rights. After all, good far out weighs bad, and leaves time for constructive thoughts.