This site is dedicated to Pauline's 'rage against the dying of the light'
I have MND in the ALS form with bulbar and limb involvement. This means that my speech is not easy to understand, I sometimes unintentionally cough up and spit out food and drink, my muscles are doing their own little dance most of the time which makes me tired. I am fast losing strength and dexterity in my arms and hands which makes everyday things such as feeding myself or using a phone challenging and exhausting. My legs are getting weaker so I need help to stand and support when I walk; I have fallen a few too many times! I have a PEG feeding tube, but only need it to top up my liquid intake - no I don't pump wine or G&T into it lol ;-D
MND is progressive, so in the future I will lose my speech completely, I will need to be tube fed, and I will lose the use of my arms and legs, so I will end up in a wheelchair or, worse, bedbound - HELL NO! Finally my respiratory muscles will weaken to the point where I can’t get enough breath in and out to sustain life. Most people with MND die of respiratory insufficiency.
Why am I telling you this? I don’t want your sympathy, if you know me well you will know I’m not a woman to be pitied. I want to raise awareness of the disease. Even as a former healthcare professional I knew very little about MND. But its actually more common than you think with 1:300 lifetime chance of getting it. There’s around 5,000 people living with MND in the UK at any one time. The number is so low because it drastically shortens life, with a third dying within a year of diagnosis and over half dying within 2 years.
Am I afraid of dying? No but I’m afraid for those I leave behind, especially Mr Taff (my amazing husband Gareth, the love of my life and he who is always right) so I’m making sure they are looked after as much as I can. I’m also afraid of merely existing, so I plan to live as fully as I can with the time I have left. Every day counts (even the bad ones) - LIVE, LAUGH, LOVE! I’ve had a rich and wonderful life with some pretty amazing experiences, shared with fabulous people, so I consider myself very lucky -QUALITY NOT QUANTITY!
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