Life with MND - 2013 - October

October

On the1^st,  the district nurse took bloods and because of downturn on26th Sept. I’ve needed Jean’s assistance with a bottle regarding bladder movements, so thought it time for nurse to explained about catheter, if I’d to go down that road.

For 17 nights I couldn’t turn in bed, because duvet too heavy so got Jean up between 0200hrs and 0500hrs and spent rest of night sleeping in chair.  Because sleeping in both bed and chair was to an acceptable level, I wasn’t particularly tired throughout day, with 20 minute naps in morning and early evening, and the usual 45minutes after lunch.  Switching to lighter duvet on 15^th meant back to my normal routine of getting up at 06-30hr and more important, Jean got back to undisturbed nights from me again, although her own illnesses gets her up most nights.

Although I’ve upped Jean’s work load considerably over this month with silly wee items as arms reach the point of being virtually useless she remains uncomplaining,  to tending my precise needs for perfection in placing items, which for  the non- disabled must be hard, but it’s essential to retain the semblance of independence I have left.

On the 28^th we had a meeting with Doctor concerning PEG (explained more in blog of September 2013). Herewith condensed information to him:

With Jean’s preparation of food I’ve no problem with swallowing.

However for the following reasons I think a PEG would be beneficial:

1) all food is sucked not chewed, because of constantly biting inside of mouth.

2) My trusty right arm which lifts the spoon to my mouth is incapable of always reaching it.

3) Also my intake of fluid falls short of satisfactory, and the now continual chin on chest due to weakening neck muscles restricts swallowing to a degree.

In the last few days have had to ask Jean to spoon feed me.

On the 29^th had a ‘home visit’ from Claire, our speech therapist, and Wilma  from Glasgow with a variety of communication options should I  require them in the future.

District nurse gave me the winter flue jab, and fitted a catheter.