A photo of me at home

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

Saturday, 12 October 2013

Life with MND - 2013 - April


April
When oh! When is the weather going to warm up.  Since having this disease I’m a bit like many reptiles in that, before they can get active they have to warm up. In my case, if I venture outside, ideally I like a temperature of at least13c, otherwise remaining active muscles are inclined to go stiff and are reluctant to move.

Although this has been a constant year of adaption and adjustments as the MND progressively weakens muscles to the point of uselessness, by far the biggest decision was calling in a care team. I certainly approached the thought of carers tending my more personal needs with trepidation. But any negative thoughts were quickly dispelled with the efficient and caring qualities of Carers (to date we’ve had14/15 different one’s all with their own personalities and idiosyncrasies, but efficient in what they do). This decision didn’t come lightly, but in fairness to Jean and myself, it had to come.

I try and involve exercises of some description every day.  ‘Lose it or use it’ is a casual phrase often used, but it is certainly true of muscles and joints. Muscles it’s said can start losing tone in 24hrs if unused. I find it difficult to keep shoulder muscles supple in that I need assistance to exercise them. My arms have certainly shortened, which I believe is referred to, as (contracture).

I still stand up many times throughout a day with the aid of hand supports. I feel it benefits circulation and digestive systems and it’s so nice not to be looking up at people, but have eye to eye contact even for a very short time.

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