ALS/MND Support Group Forums - View Single Post - Re: "bulbar-onset rarely misdiagnosed"

mytwoboys · 11-06-2009, 08:55 AM

Hi Dave,
My boys were 8 and 5 when my husband was diagnosed in May 2007 - limb onset. His progression has been normal - he is now wheelchair bound with use of only a couple of fingers and a little movement of one arm - his FVC was 41% as of a couple of weeks ago. He needs assistance with everything. I won't lie - it's tough. The boys are now 10 and 7 - trying to work in homework, his care, the house, a full time job, all the paperwork... I have no time to myself except driving to and from work. Like Kelly said, it's a new normal. There are days when I wonder if I can make it - but the kids need me. I do absolutely whatever I can to keep it as normal as possible for them (sports, activities, etc.). We have no family within 3 hours of us - so it's on me - but they need and deserve it. It's pretty intense every day - when I step back and look at everything going on - I won't lie - it can be very depressing. You will find great support here - and plenty of people
in similar situations. Don't panic (which I still do from time to time) - prioritize and take care of the most urgent problem/situation at whatever moment you are in (which can change from day to day). I tell myself "one day at a time" and pray myself to sleep every night.

11-06-2009, 08:55 AM	#10 (permalink)
mytwoboys New Member (Say Hi) Registered Member Join Date: 2009 City: Columbus State: OH Country: USA Diagnosed: 00/0000 Posts: 22	Re: "bulbar-onset rarely misdiagnosed" Hi Dave, My boys were 8 and 5 when my husband was diagnosed in May 2007 - limb onset. His progression has been normal - he is now wheelchair bound with use of only a couple of fingers and a little movement of one arm - his FVC was 41% as of a couple of weeks ago. He needs assistance with everything. I won't lie - it's tough. The boys are now 10 and 7 - trying to work in homework, his care, the house, a full time job, all the paperwork... I have no time to myself except driving to and from work. Like Kelly said, it's a new normal. There are days when I wonder if I can make it - but the kids need me. I do absolutely whatever I can to keep it as normal as possible for them (sports, activities, etc.). We have no family within 3 hours of us - so it's on me - but they need and deserve it. It's pretty intense every day - when I step back and look at everything going on - I won't lie - it can be very depressing. You will find great support here - and plenty of people in similar situations. Don't panic (which I still do from time to time) - prioritize and take care of the most urgent problem/situation at whatever moment you are in (which can change from day to day). I tell myself "one day at a time" and pray myself to sleep every night.