A brave Lanarkshire mum battling a rare genetic disorder that has confined her to a wheelchair and affects her speech and eyesight, is chronicling her life journey by penning a book.
Kirsty McPake’s no-hold-barred account of her fight against cerebellar ataxia includes the story of how she tried to take her own life after her condition left her thinking she “wasn’t worthy of anything”.
The 40-year-old from Coatbridge is hoping her book, Calamity Kirsty: My Wobbly World which she has shared chapters of online and with friends, can raise awareness of ataxia, which usually results from damage to a part of the brain called the cerebellum, but can also be caused by damage to other parts of the nervous system.
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The disorder results in a lack of muscle control or co-ordination of voluntary movements, such as walking or picking up objects, and can affect various movements and create difficulties with speech, eye movement and swallowing.
Kirsty was diagnosed with the condition in 2000, but was shocked to hear it had been with her for “many years” prior to that.
She told Lanarkshire Live: “Doctors did MRIs, CT scans and blood tests for a while but couldn’t find out what was wrong with me.
“I often had wobbly legs and felt dizzy and initially they thought it was maybe an inner ear infection, before a few specialists speculated it could be something in the MS or Parkinson’s family.
“But when my parents put me into private health care the doctor told me it was probably my ataxia flaring up. I was stunned as I had no idea what he was talking about and he said I’d had it for years.
“Further research discovered that it was genetic and I had got it from my parents’ combined genes.”
There is no cure or treatment for cerebellar ataxia and Kirsty faces a daily struggle with her mobility.
She explained: “I need to pull myself up out of bed using the covers and can’t even walk from the bed to the bedroom door.
“I have an electric chair that I have to use in the house and a mobility scooter for when I go out.
“When I am out of my chair in the house I have to get on my bum to move around. In the past I would have been embarrassed by that but nine years ago I fell and broke my leg when I tried to walk so I don’t care what others think now.
“My vision is blurred and my speech can be slurred. I often choke, even just drink water, and don’t go out to eat in restaurants.
“My fiancé Jason built a walk-in shower for me and we’ve got handrails around the house.
“There are no treatments or medications for ataxia; the hope with the condition is that it stays how it is and doesn’t get any worse, but it won’t go away.”
Kirsty, who is no longer able to work, is a former psychiatric nurse at the Airbles Road Center in Motherwell and Coatbridge’s Coathill Hospital and told of how she almost “ended up a patient herself” as she reached a very low ebb.
She said: “About 16 years ago I tried to take my own life as I felt I wasn’t worthy of anything and didn’t want to be here anymore.
“The following day I thought to myself, ‘how selfish would you have been’, as I would have left my partner Jason behind.
“I later broke down and told my mum about it and she took me to a doctor who put me on medication that I still take.
“The doctor asked if I wanted to speak to a counselor but I said no as my family were, and are, a great support to me.
“My mum is like my counselor and my best friend Rae has been my rock; I wouldn’t be here without the love of my family and friends.
“Melissa, who is now 12, is my wee miracle. I never thought I would have children but she is my life de ella and I’m very proud of her.
Kirsty is now sharing her emotional journey with others as she writes Calamity Kirsty: My Wobbly World in the hope it will make people more aware of her disorder.
She said: “I started writing the book last month and I’m on chapter nine of what will probably be 13.
“Initially I just wrote it as a cathartic personal journal but my friend Rae and other people who read some of the chapters loved it and said I should do it as a book.
“I wanted to be as open as possible, so speak about my attempted suicide and how it’s very important to talk to someone when you feel low, whether it be family or friends or someone outside your circle like a doctor or counsellor.
“I’m looking to self-publish when it’s finished, hopefully on Amazon as an e-book which people can also order a paper copy of.
“I also hope to give a percentage of the book’s sales to the Ataxia UK West of Scotland Branch, who have been great with me and offer wonderful support.
“A lot of people are now in the position I was in 20 years ago and I want them to know that ataxia doesn’t define you; there is still so much you can do.
“I am very proud of how far I have come and hopefully my book can raise awareness and offer solace to people in the same boat.”
For more information on ataxia, visit here; and if you are suffering from mental health issues or suicidal thoughts, head online to Samaritans or Breathing Space.
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