26/05/2025 - 'I've gone from feeling fine to just 'okay' by David
When someone asks me how I'm feeling, I used to say that I was fine, like all Brits do, even though we are sometimes far from fine. These days, I just say that I'm okay, which I think, accurately represents how my life really is, nearly two years after my diagnosis. I'm not great, but I'm not terrible. Abi, an Occupational Therapist, has visited, and we completed a 6 monthly questionnaire about my symptoms. She documented that I'm finding it harder to turn in bed, that my limbs are very weak, and that I can no longer walk unaided and only walk about 20 steps with help. Filipa, a Neuro Rehab Dietitian also came, and we discussed my diet, my swallow, my bowel habits, and the impending PEG feeding tube that I'm having fitted next week. Alice and I have good days and bad days, and we've lucky enough to have had more of the former, since our lives were irrevocably changed. Recently however, events have taken us to our lowest point. A combination of the deteri...