[clementine]

Good evening to everybody from the Cotswolds in the UK.

I am a brand new member and unfortunately qualify as diagnosed with MND officially three weeks ago. I however had noticed ‘signs’ approximately 12 months ago which very slowly progressed to January this year, whereupon I had a flu virus, not sure if Covid or not However, after this time I noticed a somewhat more rapid increase in symptoms starting from my hand changing slight shape to Midsummer needing a stick to walk as my leg felt ‘heavy’. I won’t bore you with the details of the inadequacy of our NHS system in diagnosing this heinous disease But I am now At a point where I have left side paralysis, weakness and a pretty useless spastic left hand. My right side is currently functional and I feel grateful that my lungs and my speech have not yet been affected.

I have enjoyed And found comfort in reading everybody’s personal experiences on living with ALS and I concur that a positive outlook is imperative for a longer existence. I am now and always have been a believer that “you are what you think you are” and even though I feel out of control because we all know the out come for this disease is bleak whether it’s two years or 10 years, I personally feel that a positive mindset is imperative for longer life.

I do my best to be as healthy as possible as I always have enjoyed eating good food, always organic and try to focus on more fish than meat quite happily. I train a minimum of four times a week, specifically Pilates, Reforma tables which give me immediate relief, giving me immediate relief from aches and pains and flexibility. Trying to be positive and forget I am ill is a struggle As meeting with professors recently where I was told that 50% of patients die within the first two years, fact, is a concern but I will continue to fight to try and defy or at least not be one of those percentage.

It does fill me with great hope however when I read everyone’s account on here by saying they are 10 years down the line but may I ask what quality of life you have? are you are wheelchair-bound? still walking? As you see I am not as brave, as whilst I could cope with being wheelchair-bound I cannot cope with the idea of losing my liberty to care for myself, not being able to look after my personal needs. I am not that brave. This is what terrifies me the most losing the use of both hands will be my deciding factor. How people cope with this is beyond me, I admire so much….

 

 

 

[clementine]

Hi Chuck, reading your contribution stirred lots of emotion for me. I have had symptoms for a year, officially diagnosed six weeks ago. March this year I was running round the fields, now I struggle to walk to the bathroom. I too led a very active life prior to this heinous disease. I can relate with you with regards to limited movement, as I have the use of one hand luckily my right hand, as right-handed, my left hand is spastic. Up until four weeks ago I had some use of it but now I have none. I look at it and I think it looks so ugly and I am struggling with what the future holds, I cannot bear the thought of being in a wheelchair I’m sorry to say, as I cannot bear the thought been denied the right of privacy. I do not want an existence, I want to live my life for which of course is not possible, I wish to stay in control but for how long. I too tried Riluzole but lasted one week as actually made me feel like I was dying and I could hardly breathe so that was a no go. If it was not for my daughter I would be planning my exit more consciously even though I think about it daily.