A photo of me at home

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

Wednesday, 21 August 2013

Living with MND - 2007


Just a quick note, after a few emails out about this blog, I am delighted to see such interest in it. I have passed on the stats to Gordon and he is well chuffed with his readership. Here's hoping there will be lots more interested readers. I am not sure if it has been mentioned before, but Jean is my Aunt, Gordon's wife. Anyway, another historical instalment below.
 

January
Attended Rehabilitation/ Rheumatology Clinic for assessment, and because I’m experiencing pain in the left hip, whilst in bed the Doctor decided that a steroid injection in left hip may help: after a week no improvement.

February
70th birthday “bash”

May
Physiologist tried “ultra sound” on my left hip: again no improvement.

August
GP prescribed “Nytol” (sleeping pill) to see it would help my disturbed sleep of having to turn every half hour. 

September
on a suggestion from the Physiologist I got a home visit from the Chronic Oedema nurse, who issued me with elastic stockings. After two years of swollen legs, ankles, and insteps within three days of wearing stockings the swelling was down to a very acceptable level.

December
The past year has shown very little deterioration. –A real blessing!

 

My Thoughts

On my 70th birthday party and as the large majority of the 50 guests had not seen me since MND had taken over my emotions: I put the following note on all tables.

Motor Neuron has affected my emotions

Imagine us all having a crying, and laughter jar. These jars have lids controlled by our muscles, which in turn control our emotions: with me however, the muscles are so weak that what you get is raw emotions: (a bit like a baby)

T he frightening part for bystanders is the intake of breath after I laugh: I think it’s because of weak diaphragm muscles: I bray like a donkey—don’t worry I’m not mad!!!

Conclusion—if I get a “gut feeling” I just have to laugh, it’s quite spontaneous. Don’t worry; I’m enjoying myself, so make allowances for me.

Jean had four breaks this year: the longest was four nights away. To accomplish this we had to do a bit of forward planning

1) We organised too get a “community alarm” installed.

2) Arranged for Crossroads Caring Team to be present for an hour at evening meals.

3) Jean prepared enough evenings meals suitable for either oven, or microwave and then put them in the freezer.

4) Lunch was mixed salad diced up and put in “a special preserve salad bowl” and kept in fridge.

5) Breakfast cereal was pre-packed in individual lots. Although I always use the manual chair in the house as I feel it helps retain upper body strength, but the electric chair comes into its own when in the kitchen as it frees up the left hand for carrying.

6) Finally Ross, our son came in for his tea, and “sleep over’s”

When on my own I really go into the “focus mode” which means I need my own space to chill out.

 Ross and I have an understanding he only helps if asked.

After all: if you don’t want to loose it use it for as long as possible.  

Exercise most days: but every so often MND kicks in to show me who’s “the Boss”

Because of my tenacious and disciplined lifestyle I hope it gives Jean a life, and not impinge on her time to much. 

The conclusion too Jean’s breaks were she certainly benefited from getting away, and for me it’s always good to stretch myself and take me out of my comfort zone. 

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