Life With MND
Jean
I have Progressive Muscular Atrophy. It’s a rare form of MND with purely lower motor neurone (LMN) signs. It occurs in around 5-7% of all reported cases of MND. As it is five times more common in men than women it makes me one of a rare breed!
"Whatever is ahead of me, is best not to dwell on and in the meantime, life is for living."
Jean Waters
Jean Waters
It took nearly eighteen months before I was diagnosed with MND, passing through the Orthopaedic Department before reaching the Neurologists. For a few months I lived with the possibility of having Multifocal Motor Neuropathy, until the inevitable diagnosis was reached.
The downside of a diagnosis of MND is self evident. The initial emotion was one of grief, inner turmoil and a complete sense of doom. After a few months when logic was restored, it was obvious that I hadn’t the fastest progressing disease and the intense emotions lessened. I am now two years down the line, walking with difficulty, weak arms necessitating retirement, but still with purely LMN signs.
Is there an upside to this disease? On reflection, I think there is. I am fortunate to have been given time, something so many people living with MND don’t have and I am grateful. It has enabled me to forge relationships which under normal circumstances, would never have happened.
A friend with secondary breast cancer and I formed ‘the small print survivors' club’ and met regularly, able to talk about common concerns and anxieties and spin humour into our predicament. Sadly, our little club is down to 50% of its original membership, but it was an experience I will never regret having and was so beneficial to us both.
Enforced retirement led to new doors opening. I have liaised with our local hospice and used my medical training to provide updates for the staff, including talking to them about MND in all its forms. I have met other people living with MND, carers and professionals, forging new links, both locally and nationally.
I can empathise with other disabled people in a way that I could never have done without my first-hand experience. The support and practical help which I have received has been fantastic and has come from some of the most unexpected sources. Whatever is ahead of me, is best not to dwell on and in the meantime, life is for living.
My family won’t allow me to wallow. As my son said on learning of my encroaching disability: “Never mind Mum, just think, when you are in a wheelchair, we can set some blades beneath it and it will save me mowing the lawn!”
The downside of a diagnosis of MND is self evident. The initial emotion was one of grief, inner turmoil and a complete sense of doom. After a few months when logic was restored, it was obvious that I hadn’t the fastest progressing disease and the intense emotions lessened. I am now two years down the line, walking with difficulty, weak arms necessitating retirement, but still with purely LMN signs.
Is there an upside to this disease? On reflection, I think there is. I am fortunate to have been given time, something so many people living with MND don’t have and I am grateful. It has enabled me to forge relationships which under normal circumstances, would never have happened.
A friend with secondary breast cancer and I formed ‘the small print survivors' club’ and met regularly, able to talk about common concerns and anxieties and spin humour into our predicament. Sadly, our little club is down to 50% of its original membership, but it was an experience I will never regret having and was so beneficial to us both.
Enforced retirement led to new doors opening. I have liaised with our local hospice and used my medical training to provide updates for the staff, including talking to them about MND in all its forms. I have met other people living with MND, carers and professionals, forging new links, both locally and nationally.
I can empathise with other disabled people in a way that I could never have done without my first-hand experience. The support and practical help which I have received has been fantastic and has come from some of the most unexpected sources. Whatever is ahead of me, is best not to dwell on and in the meantime, life is for living.
My family won’t allow me to wallow. As my son said on learning of my encroaching disability: “Never mind Mum, just think, when you are in a wheelchair, we can set some blades beneath it and it will save me mowing the lawn!”
