Health update Saturday 25th January 2020

The first parts of my body that were affected by MND were the muscles that operate my lungs and my hands and arms. During 2018 I was still able to walk, but during 2019 my legs became weaker. First, I started to lose the strength in my legs to walk up steps (so that there was no way I could walk up flights of stairs). At this stage I also lost the strength to stand up from being seated in a chair, even when I could push myself to a standing position using my arms. In June 2019 I spent 29 days in Frimley Park Hospital during which time I needed help from 2 nurses to stand up from sitting in a chair or on a bed, although I could walk the length of a ward once I was standing up.

After I was brought home on 1 July 2019, The NHS put in place a system for looking after me, with a live-in carer from one agency, and daily visits from carers from another agency to help with such tasks as using a hoist to lift me when I need to be moved — see below. By this time I had a red button arrangement in place, under which I wear a red button attached by an elastic to my wrist; I can press this if I have a fall, and help can be sent.

I was now just able to stand up from sitting in my MNDA armchair using the electric motor that raised the seat to its maximum, but in July and August 2019 I gradually lost that strength so that I could no longer stand up from sitting down, and my legs gave way several times so that I collapsed on the floor while walking from the living room to the bedroom. We had to use the red button to call the paramedics to lift me from the floor.

The carers then had to start using a hoist to lift me from my armchair onto a wheelchair when I needed to be taken from the living room to anywhere else. I was from this time spending all my time sitting in the armchair. The lack of use of my legs led to prolonged swelling in my calves, a condition also called oedema. This led to a skin condition which by the end of 2019 needed medical attention. In January 2020 there were visits by the district nurse twice a week concerning this condition and the necessary large dressings.

My left calf on 25th January 2020:

My right calf on 25th January 2020: