froggy102
Member
- Joined
- Mar 10, 2009
- Messages
- 20
- Reason
- Loved one DX
- Diagnosis
- 06/2007
- Country
- UK
- State
- London
- City
- London
Hi all
I haven't posted very often. My dad died 7th June and I often visit the board to see what other people's experiences are. I thought about submitting this to the local paper, to raise awareness of ALS/MND. I have had the words in my head for a long time and they just all fell out today. Hope it isn't too depressing, it's how I feel. Hope you all doing OK. Thank you
My dad died on 7th June, 24 months and 17 days after he was diagnosed with Motor Neurone Disease. According to Wikipedia, MND is a neurological disorder that selectively affects motor neurones the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. The reality of this is that people become trapped in their bodies, unable to move, but remain acutely mentally aware of what is happening to them. The period from diagnosis to death is on average 14 months. Nobody knows why people get it and there is no cure. It really is a killer.
My dad, although not a big man, had a huge personality. He was the social glue of the people around him, testimented by the 450 people plus at the funeral. He loved company, loved music, dancing (albeit badly), telling stories, making people laugh, making people happy. He was, as said by several people, a legend. The first thing to go was his speech, which was devastating for somebody who lived to talk to people. Some people get diagnosed with terminal illnesses and climb mountains or run marathons, dad just gave up mentally, unable to comprehend why he has been chosen to get this horrible disease. Things like that didn’t happen to people like us, people like him.
18 months in, he was unable to walk, talk or eat. I would go home with a false smile on my face, trying to cheer everyone up and not notice the tiny withered man in the corner who was still my dad. I took over his role as the social glue, chatting, making sure people had a drink, telling jokes. And all he could do was look at us with his twinkly blue eyes that remained the same, eyes that could see what was happening to him, and the hidden tears of the people he loved. Then I would come home on the train from Manchester and cry till I was empty.
And now it’s over. The times we prayed the nightmare would be over for him, the time people said, ‘it’s time for God to take him’, and now he’s gone and we are left in a very empty dull world without him. That tell me it gets easier, the grief isn’t so raw, time heals. I wish time would hurry up.
People tell me I have his eyes. I wish I could see his again.
I haven't posted very often. My dad died 7th June and I often visit the board to see what other people's experiences are. I thought about submitting this to the local paper, to raise awareness of ALS/MND. I have had the words in my head for a long time and they just all fell out today. Hope it isn't too depressing, it's how I feel. Hope you all doing OK. Thank you
My dad died on 7th June, 24 months and 17 days after he was diagnosed with Motor Neurone Disease. According to Wikipedia, MND is a neurological disorder that selectively affects motor neurones the cells that control voluntary muscle activity including speaking, walking, breathing, swallowing and general movement of the body. The reality of this is that people become trapped in their bodies, unable to move, but remain acutely mentally aware of what is happening to them. The period from diagnosis to death is on average 14 months. Nobody knows why people get it and there is no cure. It really is a killer.
My dad, although not a big man, had a huge personality. He was the social glue of the people around him, testimented by the 450 people plus at the funeral. He loved company, loved music, dancing (albeit badly), telling stories, making people laugh, making people happy. He was, as said by several people, a legend. The first thing to go was his speech, which was devastating for somebody who lived to talk to people. Some people get diagnosed with terminal illnesses and climb mountains or run marathons, dad just gave up mentally, unable to comprehend why he has been chosen to get this horrible disease. Things like that didn’t happen to people like us, people like him.
18 months in, he was unable to walk, talk or eat. I would go home with a false smile on my face, trying to cheer everyone up and not notice the tiny withered man in the corner who was still my dad. I took over his role as the social glue, chatting, making sure people had a drink, telling jokes. And all he could do was look at us with his twinkly blue eyes that remained the same, eyes that could see what was happening to him, and the hidden tears of the people he loved. Then I would come home on the train from Manchester and cry till I was empty.
And now it’s over. The times we prayed the nightmare would be over for him, the time people said, ‘it’s time for God to take him’, and now he’s gone and we are left in a very empty dull world without him. That tell me it gets easier, the grief isn’t so raw, time heals. I wish time would hurry up.
People tell me I have his eyes. I wish I could see his again.