A photo of me at home

A photo of me at home
A new photo of me and Jean at home

Thursday, 3 October 2013

Life with MND 2012 - Part 3

Apologies for the lack of updates, but the techie had the temerity to go on holiday - some more historical notes from Gordon.....
 
July
I no longer try to hold a audience with my Lightwriter—it just takes to much effort now as a core tiredness creeps over the arms and body. Whilst in the past I always felt if I was “bright and breezy” any people visiting left in a similar way.

By an evening, I can now get exhausted and this can be seen on occasions when it appears lips weaken and I tend to dribble from mouth, thankfully this condition never occurs in bed.

My electric chair is now fitted with new arm rests, the left one is channelled to retain arm from slipping off (I can now brush hair again instead of asking Jean) also fitted was a head restraint when in the new car. 

The higher “grab rails” on the new bed has thrown up a few problems (so what’s new) but are essential to allow the upper section of bed to raise me into a virtually upright position so Jean is then able to get me into a sitting position on the edge of the bed.  The main problem was solved satisfactorily by the use of a bungee cord secured to the duvet at the base of the back “grab rail.”

August
We had inaugural meeting with Crossroads Carer Organisation regarding Jean’s pending four nights in September at our timeshare in Aviemore. At this meeting I gave her information of my needs.

As I gain confidence on entering, and exiting our car it’s opened up a new world ending the mundane, and predictable weeks of the past four months. To the extent that we attended the initial support meeting in Inverness with MND Scotland for patients and their carers, interesting to say the least!

The ongoing irritation of occasional runny nose whilst at meals is still persisting.

September
Weight still stable at 11stone.  Well it’s time for Jean’s wee break. Ithink I’ve thought of everything in anticipation,  but Allison coming up just in case!!

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