Well, last night at 10:15 pm My husband ,passed , He got the flu,and just never recovered. Huntingtons ,if your listening,your not invited to the funeral. I smiled and told him go ,go to your mom and dad and have Christmas with them I have to believe in my heart,they are together! Merry Christmas all, and for those who are still on their journey hugs.by bothfeet - Huntington's Disease Support Center
Hi ,been a very long time since i was here. Glad to see the site is still up and running. Im the wife of a HD spouse. im 57 now ,hes 60 lol. Started this journey in my 20s wow. 3 kids later.one tested negative for HD,other two dont wish to be tested now in their mid 30s . Still no symptoms .on the outside anyway,few holy crap moments though. Froze in my tracks with fear.But okay just notby bothfeet - Huntington's Disease Support Center
That is a very beautiful and moving post kathleen. I sure hope you took lots of pictures ,not that your memory will ever need them . Moments we cherish are firmly imprinted forever .by bothfeet - Huntington's Disease Support Center
Thank you thank you for answering my post ,made me feel so validated that what i feel is real not insanity. I could tell you to go the ER ,but hey i know you have the same attitude as i do.I will I will . Hugs big hugs ,just good to vent some times isnt it. Off to work now ,but yah i took an Ativan to get me there,some days are just what i need to do for me when i cant do for myself. RELAX.by bothfeet - Huntington's Disease Support Center
Perfect ,timming to read that as i too question my own. A person can not go living in the flight to fight mode for years and years and not have damage. I was at my counslers yesterday ,not for HD ,but of course it came up. I told her it wont take much to break the dam ,and she said what will that look like. I said then end i will not be able to function. She asked me how was my stress levelby bothfeet - Huntington's Disease Support Center
The care aides where my husband live CUT his hair straight line chunks out everywhere ,why why why I have been a care aide for 18 years i have NEVER cut a residents hair nor would i . I know it will grow back but ,it is just the lack of respect for us a family ,they know i cut his hair and beard I have the safety scizzors to do it How many more tears can that place take from me .by bothfeet - Huntington's Disease Support Center
Wow that is so sad.i know that pain well they did that to my husband for 9 months,i kid you not . I admitted a solid ,walking,talking ,50 year old man ,to get the help needed into the arms of the so called trusted profssionals. But to my horror ,within 3 weeks little did i know we would be fighting to keep him alive . It has left me traumatized,and have not had a day of rest since ,Oct 27 20by bothfeet - Huntington's Disease Support Center
Hi Mrspatwolf Im glad to hear you are seeking counseling,and your right hard to find support out there strictly for HD. I see a counsler for other reason ,depression,anxiety,stress,and an addiction i dont care to really share. For me i never once found HD grounds for seperation or divorce but his behavour prior to diagnosis heck yah. As soon as i started to educate myself about HD,it was alotby bothfeet - Huntington's Disease Support Center
I have never met you or your mother ,but your post of her passing sadened me . Sad when this disease makes death such a welcome relief. Best wishes for you and your family hugs.by bothfeet - Huntington's Disease Support Center
Thanks for answering me ,im so sorry to hear about your sons .There was no mistake when God gave them to you I cant believe you work as well ,amazing truly amazing. I wish we were closer i would love to meet you in person. And your son too . Where i live iam very much alone learning as i go,not much more learning left i would think,i know no other families or people with the same feelings aby bothfeet - Huntington's Disease Support Center
Wow 30 pounds is alot. So good you were able to bring your son home. I would if had proper housing ..no stairs etc. I cant afford to move nor give up my job. One thing about this disease it hits us right in the middle or lives. We have to be normal working ,paying people and the not so normal people too . Doing double duty is hard,i often try to imagine him home so i could take a day off,buby bothfeet - Huntington's Disease Support Center
Thank you all for your replies Oh the horror stories or so called memories are harboured deep inside ,but sometimes they just need to come out. And sometimes they need to stay buried,but when your trust is challenged and faith is others is low ,it is hard to keep going i tell yah ,as you all can understand,then suddenly those memories are being dragged out of you triggering a response deep wby bothfeet - Huntington's Disease Support Center
I came late to the care home arrived at 6:16 pm was busy today.so as usual as if i was working i prepared his dinner for them to heat up and feed him. When im at work i call and ask did he eat ,yes im assured he is good ,so i have to believe they did feed him Well tonight i was not at work and showed up unexpectaly,yup to my surprise his food cold sitting beside him about 4 mouthfuls missinby bothfeet - Huntington's Disease Support Center
Well the regulars who know my husband have been moved to a new hall . This is very upsetting to me,i cried and cried. Starting over with new staff is exhausting. The two ladies last two days when i went in he had no pants on? There reply was he moves to much ? I said well how is it that you two are the only ones who cant get his pants on? The nurse asked me to turn off the bed alarm when imby bothfeet - Huntington's Disease Support Center
Hello,for my husband ,we started him on adult pull-ups ,and at one point tried the taped full pad like a diaper but found they fell off and got twisted badly,making it un comfy ,and also they were constantly wearing out on the back side from his wiggling. So imo ,the pull -ups worked good and for years he could do it himself .they have a elastic waist type fit ,and stay on better We found noby bothfeet - Huntington's Disease Support Center
Well holidays came and went ,not a trace of Christmas in hubbys room at the home ,i needed it to be that way,too painful. Im really struggling with Depression ,and stress ,i think im burned out. No one to talk too face to face ,no safe place to vent ,hold it all in . My walls are crumbling that i was so careful to build ,i needed them . This disease is relentless i tell yah. Hubby is so goby bothfeet - Huntington's Disease Support Center
Hi Marlyssa,I love the word DAILY ,it is ,it is daily and it hurts ,and its sad ,and its exhausting,and its scarey every single day. I went to a Doc the other day and asked for anti-depressants ,told him Iam tired ,been a long life. That was about as nice as i could say it ,cause yah they do they start questioning our sanity its true. Hi can you be my doctor .The old me is in there ,not sureby bothfeet - Huntington's Disease Support Center
Hi Sonny ,i know what you are going through ,when i read your post ,i can hear it all over ,i can feel the pain of the memories . My husband is 54 and in a home now,but i can tell you ,i went through the same,as im sure many on this site have too. I remember him throwing food across the room ,calling it regurgitated slop,i never made spagetti again ,and to this day when i do make it i alwayby bothfeet - Huntington's Disease Support Center
Maybe its the time Maybe its the weather Maybe its just me Maybe just sometimes we dont need a reason to need a hug .by bothfeet - Huntington's Disease Support Center
could someone explain all that in simpler terms please ,by bothfeet - Huntington's Disease Support Center
Was called, Do you really want to know. On knowledge network channel. Or it could of been Do (they) really want to know ?by bothfeet - Huntington's Disease Support Center
Hello ,i watched a documentary last night about HD,perhaps it was a old show not sure,but i knew it was going to upset me.I had work afternoon shift and had caught a glimpse of it already at work,so when i got home sure enough it was repeated ,i snuggled up under a blanket and got some tissues and a coffee and started watching it,within the first five mins i was bawling . This morning my eyby bothfeet - Huntington's Disease Support Center
Its 530 am here i read your post,i want to reach out and hug your pain away,but i know i cant. Today i will see hubby again,just like a normal routine. And at the end of today we will both be just one more day weaker. So much sadness and pain our hearts cant really take ,but some how we do. People tell me take a day off ,take a holiday ??? im thinking ???? ,im thinking how. People ask how arby bothfeet - Huntington's Disease Support Center
Hi Dolly,so sorry to hear about your husbands diagnosis. I too heard that train comming for years,one day hope ,one day fear,one day anger. The day we got the actually diagnosis ,that he had it.I had already know, but the actually hearing it was gut wrenching. I immediatly went to into getting all the info i could ,and back then was snail mail and we didnt have a computer. I never really fullby bothfeet - Huntington's Disease Support Center
Oh i cried when i read the part of the crayon on the card .How precious is that. As caregivers i think we learn to just admit defeat ,i stopped argueing back for years ,no good ,all my fault all of it. He blamed everything on me,we learned to work around it. I dont know how much this changed me as well ,cause i believe it did.I was mentally damaged because of this disease and probably ,so wereby bothfeet - Huntington's Disease Support Center
Hugs Howard and a huge, huge wtg for being you and the courage to protect your daughter. I too went through a very terrifying experience in the so called hands of the professionals. And you are so right when it comes to HD the lack of knowledge is huge. My husbands abuse came in the hospital,yes he was a very strong willed,independant person who did not like to be helped or in his space,so tby bothfeet - Huntington's Disease Support Center
Hello ,i just want to say ,even though i talk to the walls cause he always appears to be not listening to me,or off in his own world.Well okay thats all husbands but more so in Huntingtons. But the other day he was ignoring me or so i thought ,so i decided to play this little piggie went to market with his toes each toe i wiggled and said the little ryhm his smile grew bigger ,and at the endby bothfeet - Huntington's Disease Support Center
My husband has been for years at least 10 or so years,on Respseridol,worked like a charm from day one,he is now taking 4mg twice daily and 0.5 mg of ativan twice daily .All other medications made him groggy and he was very moody and clumsy and was drooling .not good ,and Zeprexa made him extremly aggresive and increased his movements.by bothfeet - Huntington's Disease Support Center
Hello The last few weeks i noticed and yah it was brought to my attention that he is no longer feeding himself.But i already had been noticing that myself Well he will hold a doughnut or sandwich but out of sight out of mind ,one bite and on the floor . So i requested a lowering of his meds ,wich being in a care home is like asking to speak with the pope himself ,frustrating little world tby bothfeet - Huntington's Disease Support Center
Hello,been a few years since ive been here. Been a long road,we are still on it. Hubbys still in care comming up 5 years out of the home. He is 54 i think ,lost track of stuff like that. He is doing awesome ,gained weight,smiles and laughs ,cant talk ,but his eyes still say alot ,they shine so bright when he sees his kids.gets all excited ,i go see him every day without exception. I fought tby bothfeet - Huntington's Disease Support Center