Life with MND - November 2013 - 1st to 7th

November
Catheter fitted last day of October, removed 1^st November due to severe pain whilst passing urine. The nurse came to the conclusion it may be spasms caused by the MND, but needs further investigation.

4^th had ‘home visit’ from physiotherapist mainly regarding weakening neck muscles.

5^th visit from Occupational therapist, and technician both affiliated to wheelchair care with a new chair previously measured up and adapted to my changing body form and posture.

Having thought long and hard about the new chair prior to its delivery I emailed the O T- here is a condensed version.

As MND  reaches a critical stage, for me quality of life and getting the best out of every day and retaining the last semblance of independence is my ultimate aim, and if I find the new chair restricts me in any of the above then I will keep my ‘old faithful’ electric chair.

The new chair arrived, but I found the (strongly advised request in the home) to use the footrests and shoulder restraints to help keep my head up, deprived me of so many pleasurable daily pursuits that I’ve opted to keep my original chair. However, wheelchair care from Inverness – bless them! Who always have my interests and welfare to the fore, have said it may be possible to put a taller back which can recline onto my old chair. This would open up a world again in that, getting eye to eye contact and watching  TV .

I’m not concerned about the fitting of the PEG (mentioned in previous posts), but being hospitalised and communication in an alien environment with what I’m sure is a very busy staff is a concern. But, as always, forward thinking kicked in and I prepared an informative sheet for hospital staff of key words and signs. Here's hoping....

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.