Never Give Up.......Motor Neurone Disease.

Wednesday, September 12, 2007



Even walking now with the ‘Gutter Frame’ is getting progressively slower. Harder to stand up straight as back muscles getting very tired. Hands are loosing a bit more coordination with the left hand catching up to the right as far as muscle wastage goes. Also finding it more difficult to pull lower garments up when dressing by myself.
Now finding that more foods are not going down the same which is a bummer. Lower legs (both) are looking thinner with my left one being the main culprit. Have noticed (rather felt) that my backbone is becoming more noticeable.
Looking at having a ‘Peg’ fitted into my stomach to enable me to supplement my diet.
To all outward appearances I have gone downhill, but, on the inside, well, I am still the same. I still have all the normal thoughts and feelings that everyone else has and it is that which is helping to hold me together. I am still a husband and father, friend and supporter to other people with ALS/MND. I believe implicitly that life for me goes on despite what I have and that I will continue to enjoy and take part, as much as my body will let me, in events concerning family and society in general.
I will not have to battle with getting in and out of a high bath for very much longer as we have found a house with a ‘disability shower’ and ramps up to the doors which means I will be able to go out in my power chair and enjoy once more having a ‘walk’ into town or getting a breath of fresh air ‘walking’ with Jan.
So, I get on with life and take each new day as a bonus. My body may be breaking down but my spirit and resolve is just as strong now as it was almost two years ago. I will also repeat here that in myself I am not angry or bitter at what has happened to me. I can not change my future and ask for the old body back, that is not to be, but I can, in some small way, by being positive in my attitude and outlook on life help others with ALS/MND…..


  • Hi Robert,
    been a while since I stopped by you blog. Although food may be becoming a challange I hope the appetite is still strong. Wishing you well.

    By Anonymous Anonymous, At 3:45 AM  

  • Hi Robert. It is amazing that you can still have such a positive out look on life even tho it is throwing you a curve ball. As for your "peg", my cousin Kasey has one and we call it her "flip top lid"! It will make getting the important nutrients into you a hell of a lot easier. Look forward to meeting up with you soon. Sarah and Callum

    By Anonymous Anonymous, At 8:39 AM  

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