Caring for a loved one with Huntington's disease

[@scottneedle1141]

Steve, thank you for this. My wife is in stage 4. Retrospect is insightful to understand the impact the disease has on us as spouses and care-givers, but the personal aspects are nuanced and hard to make others understand. So, bravo to you for giving us a collective voice. -Scott, co-founder of Team2CureHD, US.

[@coraldell3091]

Yes that's very true, it's a battle as doctor usually have had no prior experience with hd. You have to work it out for yourself.. 😢 It's 24 7 care.

[@optimus2830]

My name is Steve Gottlieb, my wife June was just diagnosed with HD. She's good and bad days, last couple of days have been tough. She's become more needy on me more than ever, it's been unbearable. She cannot communicate that well anymore and she walks very unsure 😢of tripping or fall

[@dennaljohnson1951]

Hi there Steve! Sending you and June big hugs! So sorry that is her diagnosis! But on the other hand at least your know what she is living with ! I wanna say hang in there! And the more you you fight on her behalf and push people to get help and support! Youll find ways to help her with saftey measures, and spend time to care for you! Also make the most of the time when possible hopefully i make sense.

[@optimus2830]

@@dennaljohnson1951 thanks guys, since that point of time things have turned around 180 degrees

[@optimus2830]

I think I got a handle on I give her her meds religiously and she is a lot more tentative and extremely coherent

[@wormfarmer509]

My wife judi has HD ALSO GOD BLESS

[@Kimmy23164]

YOU ARE NOT BEING SELFISH. I ALSO CARE FOR A HD MAN....I COMPLETELY UNDERSTAND THAT YOU NEED SOME 'ME TIME' I hope you keep playing golf....sounds like you are doing a great job

[@optimus2830]

It's becoming a night mare. Trying my darkest to get her involved with HD trials

[@coraldell3091]

Imagine having only 4 hrs a week to yourself.. !! That's about all you get.