Crooked Creek
New member
- Joined
- May 14, 2007
- Messages
- 9
- Reason
- Learn about ALS
- Country
- CA
- State
- Ontario
- City
- Brampton
Hi, my first post, so not sure if these have been answered yet. Not fully diagnosed yet, but feel like it's inevitable. Checked the family tree and it's familial. My Grandmother died when she was 48 (my mother was 15). My mother died when she was 59 (I was 15). My sister died when she was 45 and now I'm 45 and my son turned 15 today. Doubt I'll see his next birthday either.
Anyway, the disease progresses quickly in my family. Talked to my boss today and without giving him much, told him that I'd like to plant a seed to work from home soon, assuming my condition worsens. All anyone knows is that I've been limping for months and now I've started to use a cane. My left leg is very weak, right is pretty good and I've had the fasticulations (sp?) for a while now. Had two MRIs, two EMGs and the leg looks like it has the issue, but my gut's tell's me it's next. A bit of difficulty breathing in deeply this morning.
Anyway, that's the Cole's notes version of my history. My question is on the job front. How much risk is there telling my employer truthfully all of my concerns? I could still just tell them that I don't want to be in a wheel chair at work and be done with it. They would probably make accomodations, but if I can work from home, then why not. At least I'd be one less car on the road and save on gas and time.
As well, when is it reccommended to get the wheelchair sticker for my car and who do I have to get it from. I'd rather struggle than be easy. Must be a guy thing.
Then it comes to family. My remaining brother and sister know that it is suspected but nothing certain. When do you tell friends? Is there a better time than others? And what about my kids. I can't be sure, but I don't ever recall my mother explaining the situtation to me. She may have and I immediately blocked it out, but to this day, I don't ever recall her telling me that she was going to die. It wasn't until that morning that I woke to the sounds of my father sobbing that I all of a sudden knew. Sorry that I have to put this in, but I think it's allows me to open up on what I've worried about most of my life.
Anyway, I'm still soldiering on. There's a slight chance, about the same as the price of gas dropping to $0.50 litre on a long weekend, that I have a pinched nerve in my back and that is the cause. My struggle is emotions. I've been worried about this for 30 years now, seen it take my sister and wonder when or if it would get me. So emotionally I need help.
I talked to a counsellor through my work and she was very matter of fact. At one point when I said that I wasn't sure of the diagnosis she thought that I should pack up and go to the Mayo clinic where they could do an immediate evalutation. Then she asked if there was anything else to talk about. That was about a month ago and then yesterday out of the blue, she calls and asks what was going on. Don't know if I can work with her or not.
So emotionally how do we do it. One day at a time. My problem is my head, especially first thing in the morning or while I'm trying to sleep in. I've gone over my funeral, who will be there, telling people, seeing how it affects my kids, how they will be without me etc and the list goes on and on. I'm an expert a torturing myself with these thoughts.
So if anyone has some reassurance that we can get through this one day at a time, any tactics, things to look forward too etc, I'd like to hear them. I don't really think I have that long, but maybe I'm naturally skeptical. I just know about how it attacked my mother and sister and think I'm in for the same treatment.
So, not the nicest post, but getting this off my chest is helpful. So far I've cried a lot and held my wife a lot. She's amazing. While it was always a worry for me, she thought that I'd never get it since it had already taken my sister - and that it tended to only be on the female side in my family.
Anyway, got to get ready for the birthday dinner - we're off to the Hard Rock Cafe.
thanks,
Anyway, the disease progresses quickly in my family. Talked to my boss today and without giving him much, told him that I'd like to plant a seed to work from home soon, assuming my condition worsens. All anyone knows is that I've been limping for months and now I've started to use a cane. My left leg is very weak, right is pretty good and I've had the fasticulations (sp?) for a while now. Had two MRIs, two EMGs and the leg looks like it has the issue, but my gut's tell's me it's next. A bit of difficulty breathing in deeply this morning.
Anyway, that's the Cole's notes version of my history. My question is on the job front. How much risk is there telling my employer truthfully all of my concerns? I could still just tell them that I don't want to be in a wheel chair at work and be done with it. They would probably make accomodations, but if I can work from home, then why not. At least I'd be one less car on the road and save on gas and time.
As well, when is it reccommended to get the wheelchair sticker for my car and who do I have to get it from. I'd rather struggle than be easy. Must be a guy thing.
Then it comes to family. My remaining brother and sister know that it is suspected but nothing certain. When do you tell friends? Is there a better time than others? And what about my kids. I can't be sure, but I don't ever recall my mother explaining the situtation to me. She may have and I immediately blocked it out, but to this day, I don't ever recall her telling me that she was going to die. It wasn't until that morning that I woke to the sounds of my father sobbing that I all of a sudden knew. Sorry that I have to put this in, but I think it's allows me to open up on what I've worried about most of my life.
Anyway, I'm still soldiering on. There's a slight chance, about the same as the price of gas dropping to $0.50 litre on a long weekend, that I have a pinched nerve in my back and that is the cause. My struggle is emotions. I've been worried about this for 30 years now, seen it take my sister and wonder when or if it would get me. So emotionally I need help.
I talked to a counsellor through my work and she was very matter of fact. At one point when I said that I wasn't sure of the diagnosis she thought that I should pack up and go to the Mayo clinic where they could do an immediate evalutation. Then she asked if there was anything else to talk about. That was about a month ago and then yesterday out of the blue, she calls and asks what was going on. Don't know if I can work with her or not.
So emotionally how do we do it. One day at a time. My problem is my head, especially first thing in the morning or while I'm trying to sleep in. I've gone over my funeral, who will be there, telling people, seeing how it affects my kids, how they will be without me etc and the list goes on and on. I'm an expert a torturing myself with these thoughts.
So if anyone has some reassurance that we can get through this one day at a time, any tactics, things to look forward too etc, I'd like to hear them. I don't really think I have that long, but maybe I'm naturally skeptical. I just know about how it attacked my mother and sister and think I'm in for the same treatment.
So, not the nicest post, but getting this off my chest is helpful. So far I've cried a lot and held my wife a lot. She's amazing. While it was always a worry for me, she thought that I'd never get it since it had already taken my sister - and that it tended to only be on the female side in my family.
Anyway, got to get ready for the birthday dinner - we're off to the Hard Rock Cafe.
thanks,