I’m sick of this existence already and only diagnosed in the last month, although living with this progressively for six months. Cried yesterday, it me an hour to change my bedsheets, cried today because I can no longer tie my hair up.
I wonder what I will cry about tomorrow or maybe later today! I’m sick of this existence. I Only have the use […] View
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….
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.
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This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.