A photo of me at home

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

Wednesday, 18 September 2013

Life with MND - 2012 - Thoughts on Part 2


My Thoughts

I must say, initially a bit apprehensive of using the ramp on entering and exiting our new car. With the recent inclement weather, I’m not getting the chance to familiarise and practice. Plus there’s always the added combination of my age and losing dexterity and motor skills in my right hand which controls the joystick. However, it’s mid-July as I compose this part of my story and the few times I’ve been out, I seem to be managing ok.

 Let’s dwell momentarily and review difficulties in the past to how they are now.

Emotions - reported in 06:
My reflexes and reaction to sudden noises have improved. As has controlling the spontaneous laughter to a degree. Whether this is as time goes on I’ve become more blasé to my condition, I do not know. Oh! I still cry at anything patriotic, sentimental or I suppose, anything of excellence, like a singer reaching a high note, or an exceptional musician. 

Sleeping
Certainly improved over the past two years. Where in the earlier years the most I  got was half an hour before I’d have to turn because of painful hips, now I can get anything up to one and a half hours undisturbed sleep before having to turn.

Eating
Over the years eating has slowly deteriorated but now accelerated as lips weaken and progressive paralysis creeps into the right shoulder, arm, hand (the combination used for lifting cutlery to my mouth.) Still very much enjoying selective and well prepared meals with no problem swallowing.

Exercise
This is going surprisingly well. Starting in bed before getting up, followed by two ten minute sessions during the day and again when I go to bed in the evening. The bed exercises all involve shoulders, hips, and abdominal muscles.

Regarding having to call Jean to get me out of the new bed in the middle of the night, one may well ask how, with no voice? Well, when I lost the ability of getting myself out of bed on my own I must say I felt isolated and very vulnerable should I need to get Jean’s attention. Bearing in mind Jean has a phone by her bed, so before going to bed (because in bed I’ve no specks on) I punch our landline number into my mobile phone, then strategically position my mobile below the pillow. I very seldom I need to ring her, but it certainly gives me peace of mind should the need arise. Another problem solved for the present time!

I hope I’ve never shown any signs of feeling sorry for myself, but one thing I am is realistic and must acknowledge is my diminishing capabilities especially this year. Having said that, there’s been countless occasions this year when after a few attempts at a particular failed task I think positive and focus and see myself completing it, and hey presto it works!!
Mind, I’m selective what I apply this to as I’m under no illusion that MND rules, however, I feel it prolongs my capabilities of doing things for myself, for a further 2/3 months at this time. It would be so easy to give up, and ask for help.

Meaningful saying that have helped me.

Within reason, what the brain of a person can conceive, and believe a person can achieve.

You can fail many times, but are not a failure till you give up.

 

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