Hi all
I have been a carer for my father who was diagnosed in February 2019. He has ALS.
It took 6 months to get a diagnosis but this was only after he had a serious fall in January 2019 and was admitted to A & E and after our insistence that he leave hospital with a diagnosis. He had the EMG a few days later and within a 10 days his diagnosis came through. He was relieved to hear it when he was told, because he could finally give a name to his condition, but oblivious to the devastation it would cause and the rapidness of it.
I have not been exposed to many diseases in my life, but I can’t think of a disease more cruel than MND. He is basically a witness to his own physical deterioration and powerless to do anything.
It’s wrecked a devastation on my father in the first 12 months to the point where he lost capability to do everything, walk, talk, eat; toilet independently. He wears a catheter which brings its own issues.
Things like being able to hug his grandchildren or saying he loves his grandchildren he can’t do. He can still smile though we seldom see that now. He has the ability to breathe independently;make facial expressions, he can cry, he can smile, he can still think intelligently, he still has that very methodical thinking.
His head has dropped to the left, these last few weeks so he’s looking more like the Stephen Hawking version of MND.
Thankfully we have had a good care package, through CHC, so I don’t have to do as much physical caring.
I felt like writing this, as he burst out crying this evening, and I can no longer find words of comfort. He lost his wife, (my mum 20 years) ago and she would have been his comfort blanket and thats something I can never be. It just feels like he has nothing to look forward to.
Does anybody else have feel this disease brings nothing but hopelessness?
Victor
I have been a carer for my father who was diagnosed in February 2019. He has ALS.
It took 6 months to get a diagnosis but this was only after he had a serious fall in January 2019 and was admitted to A & E and after our insistence that he leave hospital with a diagnosis. He had the EMG a few days later and within a 10 days his diagnosis came through. He was relieved to hear it when he was told, because he could finally give a name to his condition, but oblivious to the devastation it would cause and the rapidness of it.
I have not been exposed to many diseases in my life, but I can’t think of a disease more cruel than MND. He is basically a witness to his own physical deterioration and powerless to do anything.
It’s wrecked a devastation on my father in the first 12 months to the point where he lost capability to do everything, walk, talk, eat; toilet independently. He wears a catheter which brings its own issues.
Things like being able to hug his grandchildren or saying he loves his grandchildren he can’t do. He can still smile though we seldom see that now. He has the ability to breathe independently;make facial expressions, he can cry, he can smile, he can still think intelligently, he still has that very methodical thinking.
His head has dropped to the left, these last few weeks so he’s looking more like the Stephen Hawking version of MND.
Thankfully we have had a good care package, through CHC, so I don’t have to do as much physical caring.
I felt like writing this, as he burst out crying this evening, and I can no longer find words of comfort. He lost his wife, (my mum 20 years) ago and she would have been his comfort blanket and thats something I can never be. It just feels like he has nothing to look forward to.
Does anybody else have feel this disease brings nothing but hopelessness?
Victor
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