As some of you know I was diagnosed in August last year (2019), aged 50, and since then my progression has been pretty rapid. I can barely walk a just few steps with a zimmer, am rapidly losing strength in arms, and can no longer speak or eat at all. I need help with all transfers and trips to the loo and will soon be using hoists. My weakness is now such that slight deteriorations have a big impact as itís one step closer to total disability. And the loss of what very little remaining independence I have.

I would say I coped pretty well with everything until recently and the reality of what my future holds is really kicking in and suddenly Iím feeling so depressed, desperate even. I had a charmed life, being very happily married and a good life style. My wife is being amazing but is also struggling, naturally. I always said as long as I was alive and had a decent quality of life I was ok. But Iím not. Suddenly Iím stressing about getting to the toilet (even with carers coming in 4 times a day) and terrified of what lies ahead and am wondering if thereís any point. Iím sure itís not at all helped my being house-bound while we await our WAV. Iíve been outside twice in the last 2 months.

How do you stay positive and keep going? One or 2 of you have kindly offered advice to me previously, in private messages, for which Iím so grateful, and I was doing ok for a while but can honestly say Iíve never felt so low and so utterly hopeless and need some inspiration.

How do you manage? How do you stay positive? Do you know of any good blogs etc which have helped you and might help me? Iíve always been able to cope and stay positive on my own but Iím failing miserable. So sorry to sound so needy.