Chase_Corin
Distinguished member
- Joined
- Nov 24, 2010
- Messages
- 135
- Reason
- Loved one DX
- Diagnosis
- 11/2010
- Country
- CA
- State
- On
- City
- Perth, Ontario
My father turned 65 on November 3rd and was diagnosed 4 days later with ALS. I don't know if the entire concept has hit us yet but I feel that we are somwhat living in a bubble.
Like if we ignore it and don't talk about it it will go away. My father gets very emotional if we try to discuss it at all and my brother is in compleet denial. My mother and I are nore proactive about it and we have been striving to get information.
Back in 1998 my father had surgery to remove calcium buildup from his spine. Durring that surgery he suffered some nerve damage, needed a tracheotomy and was in a medically induced coma for 3 months. He had faught coming out of the anisthesia and practically but his tougne in two. While in the coma he got Pnumonia three times and almost died twice because of compromised breathing.
After that his legs were never good, he would loose muscle control of them and walked with a cane. When we first noticed his arms getting weaker it was about 3 or 4 years ago. Because of his pre-existing spinal damage we needed an MRI to confirm that the calcium had not come back into his spine. After a year of waiting and 3 nurologist apointments we found out that wasn't the cause.
So we were chaseing after answers. We persuded lead poisoning, mercury poisoning, MS. Parkinson's, Kennedy's, lyme disease and a slew of other possibilities. None of which panned out.
Finally Dad was scent to a nurologist who specializes in motor nurons. That is when all the tests were done and bloodwork and such to rule outeverything else but ALS.
My first reaction to diagnois was "Why!?" Why my father, he had already suffered a near death experiance or two while recoveing from the spinal surgery. He had been a Forest Fireman while I was growing up. I lost a lot of time with him over the years. He was away for Fire season, then almost half a year in hospital and recovery with the back surgery.
Why couldn't god give me time with my dad?
Then since that I have been thinking that god is giving me time, it might not be a long time but, I am again living at home at 32 years of age, going back to school for retraining. I am able to help my mother care for him and maybe build the relationship I didn't have.
Dad's current symptoms are both Spinal and Bulbar, his arms are basically useless when trying to do anything requireing strength, even lifting a can. He has trouble manipulating food in his mouth and uses a fork to manover it to where he can chew. He also because of the scar tissue from the tracheotomy has a hard time swallowing somtimes. He slurs his words and by the end of the day his voice is gravely. He is still able to walk and sit and stand mostly on his own but he is unable to dress and get himself showered and in or out of bed.
I am concerned about how more of a lack of independance will effect him. He already hates to ask for help and resents his inability to accomplish menial tasks such as putting a dish in the sink (because he's unable to lift it). In the past year he has lost aproximately 100 lbs and is a shadow of his former self.
Living in Canada the support group closest to us is over an hours drive and my mother does not like leaving dad alone for any period of time. I told her I would stay with dad if she goes but my mother's health is got good. She has Fybromyalsia and Arthritus. I am doing the best I can but would love to make contact with others that I could talk to rather than adding the stress of my concerns to my parents.
Thank you for listening
Like if we ignore it and don't talk about it it will go away. My father gets very emotional if we try to discuss it at all and my brother is in compleet denial. My mother and I are nore proactive about it and we have been striving to get information.
Back in 1998 my father had surgery to remove calcium buildup from his spine. Durring that surgery he suffered some nerve damage, needed a tracheotomy and was in a medically induced coma for 3 months. He had faught coming out of the anisthesia and practically but his tougne in two. While in the coma he got Pnumonia three times and almost died twice because of compromised breathing.
After that his legs were never good, he would loose muscle control of them and walked with a cane. When we first noticed his arms getting weaker it was about 3 or 4 years ago. Because of his pre-existing spinal damage we needed an MRI to confirm that the calcium had not come back into his spine. After a year of waiting and 3 nurologist apointments we found out that wasn't the cause.
So we were chaseing after answers. We persuded lead poisoning, mercury poisoning, MS. Parkinson's, Kennedy's, lyme disease and a slew of other possibilities. None of which panned out.
Finally Dad was scent to a nurologist who specializes in motor nurons. That is when all the tests were done and bloodwork and such to rule outeverything else but ALS.
My first reaction to diagnois was "Why!?" Why my father, he had already suffered a near death experiance or two while recoveing from the spinal surgery. He had been a Forest Fireman while I was growing up. I lost a lot of time with him over the years. He was away for Fire season, then almost half a year in hospital and recovery with the back surgery.
Why couldn't god give me time with my dad?
Then since that I have been thinking that god is giving me time, it might not be a long time but, I am again living at home at 32 years of age, going back to school for retraining. I am able to help my mother care for him and maybe build the relationship I didn't have.
Dad's current symptoms are both Spinal and Bulbar, his arms are basically useless when trying to do anything requireing strength, even lifting a can. He has trouble manipulating food in his mouth and uses a fork to manover it to where he can chew. He also because of the scar tissue from the tracheotomy has a hard time swallowing somtimes. He slurs his words and by the end of the day his voice is gravely. He is still able to walk and sit and stand mostly on his own but he is unable to dress and get himself showered and in or out of bed.
I am concerned about how more of a lack of independance will effect him. He already hates to ask for help and resents his inability to accomplish menial tasks such as putting a dish in the sink (because he's unable to lift it). In the past year he has lost aproximately 100 lbs and is a shadow of his former self.
Living in Canada the support group closest to us is over an hours drive and my mother does not like leaving dad alone for any period of time. I told her I would stay with dad if she goes but my mother's health is got good. She has Fybromyalsia and Arthritus. I am doing the best I can but would love to make contact with others that I could talk to rather than adding the stress of my concerns to my parents.
Thank you for listening
