I am a new member to this site, looking for support and understanding of our situation and hopefully some resources. My husband was diagnosed with ALS and FTD seven months ago. He is only 40 years old and we have two young boys, 8 and 10. Thankfully, we have an amazing support group of family and friends seeing us through this! We manage day by day, but I am feeling like I need to connect with people who have similar experiences. My husbands symptoms began last summer with slurred speech and choking episodes. The ALS has progressed quickly and he now has a feeding tube and his speech has been severely affected. It is hard for him to communicate, and difficult for us to understand him at times. This has all been very difficult on our boys, and that is one thing I am looking for help with. I am wondering if anyone knows of support groups aimed at children in this type of situation. My oldest keeps saying he just wants a "normal" family and feels like we are the only ones going through this. I was hoping to find him a place he could talk and know that he is not the only one with the feelings he has around a sick parent. It is so hard for me to see our kids struggle with this, wondering if anyone has any ideas...
Thanks so much!
Cherene
Thanks so much!
Cherene