I don’t normally do forums or other internet socialising, I always feel like a fish out of water. So here goes.
My name is Pete. I’m a single Mancunian who was graciously allowed to move to the Peak District many years ago. I worked in the NHS for 25 years until I was granted early retirement on ill-health grounds due to complications arising from the late-diagnosis of Coeliac Disease.
In November 2020, I was investigated for severe abdominal pain for which no cause could be determined. However, I began to lose weight gradually but consistently. Lots of incidental problems started happening: I began waking in the night short of breath; I felt something was wrong with my swallowing (despite having a normal swallow assessment); I was struggling with my diction (although nobody else could hear this but I felt I was struggling to form certain words). Despite the pandemic these were investigated and no problem could be identified. The problems continued and others were added to the list.
The swallowing gradually worsened and the weight loss became visible. I saw the neurologist, investigations were requested including a further swallow assessment which resulted in my urgent admission for further investigations and, In October 2021, I was discharged from hospital with: a diagnosis of Bulbar onset ALS; an NIV; a cough assist machine; and referrals to just about every branch of healthcare professional you can think of (apart Obs & Gynae and sexual health of course).
I have spent the last 6 months trying to reorganise my life and prepare for changes in my condition to try and retain as much independence as possible. My thanks have to be given to one of the best co-ordinated teams I have ever seen in the NHS and the help of relatives, friends and neighbours.
My name is Pete. I’m a single Mancunian who was graciously allowed to move to the Peak District many years ago. I worked in the NHS for 25 years until I was granted early retirement on ill-health grounds due to complications arising from the late-diagnosis of Coeliac Disease.
In November 2020, I was investigated for severe abdominal pain for which no cause could be determined. However, I began to lose weight gradually but consistently. Lots of incidental problems started happening: I began waking in the night short of breath; I felt something was wrong with my swallowing (despite having a normal swallow assessment); I was struggling with my diction (although nobody else could hear this but I felt I was struggling to form certain words). Despite the pandemic these were investigated and no problem could be identified. The problems continued and others were added to the list.
The swallowing gradually worsened and the weight loss became visible. I saw the neurologist, investigations were requested including a further swallow assessment which resulted in my urgent admission for further investigations and, In October 2021, I was discharged from hospital with: a diagnosis of Bulbar onset ALS; an NIV; a cough assist machine; and referrals to just about every branch of healthcare professional you can think of (apart Obs & Gynae and sexual health of course).
I have spent the last 6 months trying to reorganise my life and prepare for changes in my condition to try and retain as much independence as possible. My thanks have to be given to one of the best co-ordinated teams I have ever seen in the NHS and the help of relatives, friends and neighbours.
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