- Joined
- Oct 5, 2014
- Messages
- 32
- Reason
- CALS
- Diagnosis
- 07/2014
- Country
- US
- State
- NY
- City
- New York
Hi, all.
My husband was diagnosed with ALS last July. Actually, that depends on who you ask -- two ALS/MND specialists diagnosed ALS without question, but husband chose to go with the current neuro who is doing a trial of treatment for MMN. His disease was progressing very slowly, relatively speaking, but has suddenly picked up the pace, despite the IVIG, which started in March. All that to say that I believe he has ALS, but he is (obviously) holding on to the hope that this is not true. Just background...
We have two kids, ages 18 (son) and 13 (daughter), who are struggling to cope with their dad's declining function. Our daughter is of particular concern to me: she's in the typical teenage phase of not wanting to talk about or deal with anything directly, so does not respond well to my attempts to offer support or even information. But I can see that she's both terrified of the changes that we all see happening before us, and mortified (in a teenage way) that her dad walks funny and has to sit down to rest a lot, thus calling attention to our family in public places. So I was wondering if there are any online groups for teens who are facing this? Thought I could at least make the suggestion, and maybe she would feel comfortable checking it out so that she does not feel so alone.
Thanks for any input! May be awhile till I check back as I am completely overwhelmed with all of this. But am very glad this exists!
My husband was diagnosed with ALS last July. Actually, that depends on who you ask -- two ALS/MND specialists diagnosed ALS without question, but husband chose to go with the current neuro who is doing a trial of treatment for MMN. His disease was progressing very slowly, relatively speaking, but has suddenly picked up the pace, despite the IVIG, which started in March. All that to say that I believe he has ALS, but he is (obviously) holding on to the hope that this is not true. Just background...
We have two kids, ages 18 (son) and 13 (daughter), who are struggling to cope with their dad's declining function. Our daughter is of particular concern to me: she's in the typical teenage phase of not wanting to talk about or deal with anything directly, so does not respond well to my attempts to offer support or even information. But I can see that she's both terrified of the changes that we all see happening before us, and mortified (in a teenage way) that her dad walks funny and has to sit down to rest a lot, thus calling attention to our family in public places. So I was wondering if there are any online groups for teens who are facing this? Thought I could at least make the suggestion, and maybe she would feel comfortable checking it out so that she does not feel so alone.
Thanks for any input! May be awhile till I check back as I am completely overwhelmed with all of this. But am very glad this exists!