Hello everyone.
I feel a little strange posting this. I've only just joined this forum, although my journey with my husband and ALS ended 3 months ago. Seems a little backward. I guess I'm looking for others who can help me figure out what the hell just happened here.
A little background: My husband was diagnosed in April of 2010, after a couple months of symptoms. Bulbar onset. We had just celebrated our 25th anniversary. He did ok the first year, and we so hoped for a slow progression.
But beginning last summer, the progression moved more quickly, and from the end of January of this year until the end in May, we were in free-fall. Our journey ended May 15.
I'm still trying to figure out this new normal. I was his primary cals until February, when we hired a terrific gal for while I was at work. My life consisted of care-giving, work (part-time), parenting our sons (14 & 16), and keeping the house running.
I'm still trying to cope with how things got so bad, so fast. We'd had a great week, the week before, going to school events for the boys, an ALS clinic visit (NO red flags), shopping. The next week, he was gone. The DC stated respiratory failure, onset of 24 hours. I'm still considering talking to the social worker at our ALS clinic, but she's a bit of a ditz.
We are Christ followers, so I believe he is now healed and living without ALS, but I still grieve the loss. He was my soul mate and the love of my life for 27 wonderful years. And only 51 years old.
I am acquainted with other widows, but none have experienced ALS. There is a survivors lunch here where I live at the end of every month, but I haven't gone. I thought I'd look here first.
Thank you to anyone who may read this, for just reading it. I bet you understand.
I feel a little strange posting this. I've only just joined this forum, although my journey with my husband and ALS ended 3 months ago. Seems a little backward. I guess I'm looking for others who can help me figure out what the hell just happened here.
A little background: My husband was diagnosed in April of 2010, after a couple months of symptoms. Bulbar onset. We had just celebrated our 25th anniversary. He did ok the first year, and we so hoped for a slow progression.
But beginning last summer, the progression moved more quickly, and from the end of January of this year until the end in May, we were in free-fall. Our journey ended May 15.
I'm still trying to figure out this new normal. I was his primary cals until February, when we hired a terrific gal for while I was at work. My life consisted of care-giving, work (part-time), parenting our sons (14 & 16), and keeping the house running.
I'm still trying to cope with how things got so bad, so fast. We'd had a great week, the week before, going to school events for the boys, an ALS clinic visit (NO red flags), shopping. The next week, he was gone. The DC stated respiratory failure, onset of 24 hours. I'm still considering talking to the social worker at our ALS clinic, but she's a bit of a ditz.
We are Christ followers, so I believe he is now healed and living without ALS, but I still grieve the loss. He was my soul mate and the love of my life for 27 wonderful years. And only 51 years old.
I am acquainted with other widows, but none have experienced ALS. There is a survivors lunch here where I live at the end of every month, but I haven't gone. I thought I'd look here first.
Thank you to anyone who may read this, for just reading it. I bet you understand.