A photo of me at home

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

Thursday, 3 October 2013

Life with MND 2012 - Final thoughts for the year


My Thoughts

T he negativity of the bodies deterioration is concerning, but it amazes me how much positivity I have most days. Oh! There are the few days when negativity creeps in.

As I compose this part of my story it’s the few last days of 2012. It’s not been a good year, as the MND now leaves very little room for adapting or maneuverability as it “bites” which has meant a year of constant adjustment as muscles weaken to the extent of uselessness.

In spite of the year through Jean’s constant attention when required, dedication, and self-sacrifice of her time, plus, having the house adapted to a good level to accommodate most of my needs has given me a fair quality of life under these worsening circumstances.

My illness is now in steady decline and interspersed with good days and then sharp downturn days, this scenario can creep on for months finally ending in another function lost for ever.

For me personally the period of time since diagnosed (2005) has been long, and is viewed with mixed feelings—upsides and downsides.
Firstly upsides, quality of life has been acceptable.  I’d have missed family, who have been so supportive for Jean and me, and friends/neighbours who after seven years still regularly visit us, (and of course when visitors come it can involve the occasional dram) Jean and I got our first great- grandchild, Leon. He’s lovely! And to me this is what life is all about.

The downside with my illness is there has been no noticeable brain disorders, no noticeable deformity,  no loss of sensation in any body parts, and finally no pain (a real blessing in its self). In my type of MND, as in most other serious illnesses, one is inclined to dwell on his own deteriorations. Being a bit isolated geographically, plus patient confidentiality and considering Scotland's population of just over five million and in any year less than five hundred would get MND,  it has been difficult to get information.  However, as previously mentioned MND Scotland have now arranged support meetings in Inverness. To date there has been three, which we have attended.

In the latter weeks of the year typing from computer keyboard has been erratic, as arms and hands get harder to control, so now using programme downloaded onto computer as described in August.

Although 2012 has passed quickly, my illness has been a long drawn-out affair with regards deterioration of the body as it teases me, but relentlessly creeps on. Mind, again it’s been a “character building challenging exercise” to say the least as I’ve grappled with trying to keep a bit of independence. However in 2o13 I feel there will be no choice but to surrender to the inevitable hoist,  and a further loss of dignity.

My parting shot for 2012 would be---I now appreciate my life and the world as it is, and not as I’d like it to be.

Yet with all the negativity of 2012 I’m looking forward to spring 2013 when again I see leaves appearing on deciduous shrubs and trees and coming to life for another season.

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