bjsherm01
New member
- Joined
- Nov 7, 2008
- Messages
- 1
- Reason
- Loved one DX
- Country
- US
- State
- WI
- City
- Milwaukee
Hello Everyone -
I'm brand new to this forum but am hoping someone out there might be able to provide some help.
My Father, although not clinically diagnosed until about 3 months ago, has been living with ALS for just about 3 years. At this point, he's struggling to keep his neck up all day, has a pretty severe limp, has lost motor skills in his left hand and just about there for right.
All the while, he doesn't use a cane, walker, or wheelchair and it this point doesn't intend to, unless forced. My Father was a lineman in his younger days but moved to a Union rep and is now the business manager and AFL-CIO executive board member. As such, his job demands extremely long hours and even extremely late into the evening to finalize labor negotiations.
Being a proud person, a person who used to be extremely good with his hands, and the hardest working person I know - he's now faced with a reality that has prevented him to live normally and do the things he's always done in the past. I've sat down with him and my mother on several occassions to discuss what they've done to prepare for what is innevitable. Both of them have not done anything to cope with this situation. They haven't taken advantage of caregiver meetings, support groups, or literature to be more proactive.
I'm hoping someone might be willing to just talk over the phone. Perhaps someone who might be going what I'm going through. My mother and father aren't comfortable talking about ALS. I don't know if it's denial or what, but I want to be able to talk to someone. Explaining everything that goes on would take too much forum space so if there's anyone out there, I'd love to have a conversation. My email address is [email protected].
To those in this forum living with and fighting this terrible disease - God bless you, I pray for you often. And for those of you caring for your loved ones - you are truly angels.
Thank you,
Bryan
I'm brand new to this forum but am hoping someone out there might be able to provide some help.
My Father, although not clinically diagnosed until about 3 months ago, has been living with ALS for just about 3 years. At this point, he's struggling to keep his neck up all day, has a pretty severe limp, has lost motor skills in his left hand and just about there for right.
All the while, he doesn't use a cane, walker, or wheelchair and it this point doesn't intend to, unless forced. My Father was a lineman in his younger days but moved to a Union rep and is now the business manager and AFL-CIO executive board member. As such, his job demands extremely long hours and even extremely late into the evening to finalize labor negotiations.
Being a proud person, a person who used to be extremely good with his hands, and the hardest working person I know - he's now faced with a reality that has prevented him to live normally and do the things he's always done in the past. I've sat down with him and my mother on several occassions to discuss what they've done to prepare for what is innevitable. Both of them have not done anything to cope with this situation. They haven't taken advantage of caregiver meetings, support groups, or literature to be more proactive.
I'm hoping someone might be willing to just talk over the phone. Perhaps someone who might be going what I'm going through. My mother and father aren't comfortable talking about ALS. I don't know if it's denial or what, but I want to be able to talk to someone. Explaining everything that goes on would take too much forum space so if there's anyone out there, I'd love to have a conversation. My email address is [email protected].
To those in this forum living with and fighting this terrible disease - God bless you, I pray for you often. And for those of you caring for your loved ones - you are truly angels.
Thank you,
Bryan