Thank you so much Marsha for posting. I am up at 2am praying to God to let me know what to do. This is so stressful because these people have only seen him in ICU for the past 36 hours or so now and they've already determined he needs hospice services. I'm afraid of putting him in hospice cause a couple years ago his nurse recommended I consider it and when I met with a hospice coordinator theby Scottmi - Huntington's Disease Support Center
Sorry meant to say they kept him in the ER for a week not ICU. He's only been in ICU for 24 hours nowby Scottmi - Huntington's Disease Support Center
My husband is 41 and has HD with cag of 48 I believe. I have been his caregiver up until Apr 24th when he went into hospital. He can walk, talk, eat (soft foods mainly) and use restroom but has accidents occasionally. He has lots of mobility issues with lots of falls and recently (past couple months) has gotten new cut/bruise daily from too many falls. Cuts on head/legs/arms/fingers/etc. Heby Scottmi - Huntington's Disease Support Center
Thanks Marsha! I'll look into it. We attended the convention in Raleigh about 5 years ago and it was an amazing experience as I'd never seen other HD families and really thought we were the only ones. We haven't been since cause of the cost to attend at the varying locations and I've been hopeful it would come back to the SE Coast. I think it's in Dallas this year. I think it would be greatby Scottmi - Huntington's Disease Support Center
Hi, It's been a while since I've posted here but I'm hoping to connect with another family with a teen boy living at risk for HD. My husband was diagnosed several years ago and we have 2 kids: boy 13 and girl 8. We live in Charlotte, NC. I work full time and care for my husband in our home. Our kids know about their risk for HD however my son has over the past few years become withdrawn anby Scottmi - Huntington's Disease Support Center
db Thanks! My son is 6 and daughter is 19 mos. My son is a very picky eater so it would be difficult to get him to eat the blueberries even if I put it in cereal. I am going to look into the blueberry vitamin chews though. What are mud hens? I could certainly do the blueberry pancakes. I'm not sure if they would go for them mixed in the rice krispies but I can certainly give it a try.by Scottmi - Huntington's Disease Support Center
Thanks Will! I called Metlife yesterday and I?m waiting to hear back from them today. I pray they will tell me they cover military members. My husband has almost six years of service and I don?t think the military covers genetic illnesses until they?ve completed 8 years of service. Even after 8 years, I?m not certain if they?ll cover him (I?m sure it will be a big fight but hopefully they?llby Scottmi - Huntington's Disease Support Center
Will: I addressed this post mainly to you since I know you?ve got a history with the military but it?s really for anyone who has any insight into how we should proceed. I am going around in circles trying to figure all this insurance stuff out. I?ve been researching STD, LTD, and LTC insurance plans. I?ve really just been trying to focus on what I need to know before we speak to anyone butby Scottmi - Huntington's Disease Support Center
Thank you all for the replies! I will look into these companies. I have one additional question. We are a very young couple (early 30's) with small children. I'm not sure how much longer my husband would work after a diagnosis. Could the long term care money only be used for his care at home or in a nursing home or could we use some of the funds to pay for living expenses (i.e. towards mortgby Scottmi - Huntington's Disease Support Center
I am looking for good reputable companies that provide long term care insurance but that won't ask HD related questions on the application. Please send me the names of companies that you've dealt with that don't delve into that topic or that you've had a good experience with concerning HD. Also I'd appreciate any feedback if you've had a problem with a specific company (especially in processingby Scottmi - Huntington's Disease Support Center
We just recently learned that my husband is at risk for huntington's disease. He wasn't raised by his birth parents and we've tracked down some of his birth relatives and the information we've gotten sounds like HD was in his family. He is currently in the Navy and he is deployed right now. Before he left, his doctors were wanting to test him but decided to hold off since they did a physicalby Scottmi - Huntington's Disease Support Center