Hi All
I'll just jump right now - a month ago today my mum passed away after an extremely short battle with MND. She was only diagnosed in November (after having to pay private due to a 3 month waiting list for the conduction test - that's another story). My mum was incredibly brave throughout - she never once cried for herself and never lost her humour. She really was an inspiration but I was just not ready to loose her (not that there is ever a "right" time).
It all started back in July last year when she fell down the stairs as her legs gave out. We all believed it was a problem with her spine (as she had really bad back ache for 4 months). Anyway she was rushed into hospital and I spent the week going back & forth to see her. I always remember it as she said "well thats a rubbish way to spend to your 35th birthday". We were told at that stage she had FND and sent him. Then by August she was bedbound and I became primary carer.
I'll be honest I'm so angry with the NHS - I totally understand MND is hard to diagnosed but it wasn't until the end that anyone actually seemed to care. Even the weeks leading up to her dying (her breathing started to become laboured) not one GP would come and see her. It ended up me just ringing and ambulance and lying to get them to come see her (and I glad i did as they were able to prolong her life longer).
The MND was so aggressive that she never got to see a specialist or the MN team at Salford.
As you can probably tell my mind is a little erratic and unfocused right now. We had the funeral a week ago which to be fair was exactly what my mum wanted (a celebration of life) and she choose literally everything. I have friends and family all around me but I just feel alone and lost. Full of anger and floundering. I'm angry that back in July she should have concluded all the tests then - not just kick her to the curb with "thats an outpatient test". Obviously something was seriously wrong.
I don't know what I'm looking for - any advice maybe?
Sorry for the randomness!
Thanks
MM
I'll just jump right now - a month ago today my mum passed away after an extremely short battle with MND. She was only diagnosed in November (after having to pay private due to a 3 month waiting list for the conduction test - that's another story). My mum was incredibly brave throughout - she never once cried for herself and never lost her humour. She really was an inspiration but I was just not ready to loose her (not that there is ever a "right" time).
It all started back in July last year when she fell down the stairs as her legs gave out. We all believed it was a problem with her spine (as she had really bad back ache for 4 months). Anyway she was rushed into hospital and I spent the week going back & forth to see her. I always remember it as she said "well thats a rubbish way to spend to your 35th birthday". We were told at that stage she had FND and sent him. Then by August she was bedbound and I became primary carer.
I'll be honest I'm so angry with the NHS - I totally understand MND is hard to diagnosed but it wasn't until the end that anyone actually seemed to care. Even the weeks leading up to her dying (her breathing started to become laboured) not one GP would come and see her. It ended up me just ringing and ambulance and lying to get them to come see her (and I glad i did as they were able to prolong her life longer).
The MND was so aggressive that she never got to see a specialist or the MN team at Salford.
As you can probably tell my mind is a little erratic and unfocused right now. We had the funeral a week ago which to be fair was exactly what my mum wanted (a celebration of life) and she choose literally everything. I have friends and family all around me but I just feel alone and lost. Full of anger and floundering. I'm angry that back in July she should have concluded all the tests then - not just kick her to the curb with "thats an outpatient test". Obviously something was seriously wrong.
I don't know what I'm looking for - any advice maybe?
Sorry for the randomness!
Thanks
MM
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