Kevin Stokes. Male Aged 66 yrs. Diagnosed Motor Neurone Disease April 2022
LIVING WITH MND
It is important to note that since my diagnosis in April 2022 the working assumption (since confirmed) has been that it was heredity. I was also aware that trials were underway on drugs for the main heredity mutant genes. Since April there has therefore always been a ray of hope – something that the majority of MND sufferers do not yet have. This has naturally helped me stay positive and be proactive in keeping my body ‘going’ as much as possible. Starting the Tofersen trial has only strengthened my resolve to be a ‘medical miracle’.
I accept that sufferers currently without treatment may well have a different outlook. In no particular order some of the main issues living with MND from my perspective have been:
- Sense of hopelessness that the disease will just take hold more and more and nothing one can do about it
- Speed of deterioration which makes getting used to disabilities hard and therefore difficult to plan and organise for
- People not knowing what to say to you
- Becoming more and more dependent upon loved ones and carers and an increasing sense of being a burden
- Fear of being trapped in a body that does not react but still being mentally alert
- Just everyday issues facing anyone with a disability i.e., accessibility issues, adaptations to the home, lack of independence
- A system that is geared towards your deterioration rather than helping you stabilise if possible. I accept that until recently there has not been an effective treatment so not surprising this has been the stance.
- On a positive note, Tofersen has changed the landscape and given all MND sufferers hope as
the speed of medical advancements takes off. Even more reason to keep going as much as
one can.
NEURO PHYSIO
Firstly, let me add for the record how fantastic Carol has been over what is just over a year. Not
only in her professional expertise in keeping my body going as much as possible but also in her
quiet counselling, ready ear, and ability to motivate.
Particular plus points have been:
- Encouraging and challenging me to achieve my best in all the exercises
- Determination to keep me doing what I can for as long as I can
- Adapting physio and exercises to a deteriorating situation without drawing attention to such
- Explaining what is happening to my muscles, what action they control, connectivity and how
they were being helped. - Despite muscle wastage maintaining movement and neural connectivity to my legs
- Helping to maintain whole body flexibility
- Maintaining walking ability for as long as possible
- Changing the routines to tackle areas in different ways
- Knowledge to get to the root cause of tightness rather than address the symptom
- Keeping a watchful eye on the whole body and looking for any new tightness
- Advice on home exercises
- A sounding board for issues relative to living with a disability in practical terms and advice
on what might help - Being and keeping me positive
- Being a proactive and willing partner on the journey that I am now on
- After each session giving me a sense of achievement – and feeling I had made progress
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