I think of you often Will. I just logged back in after a long time away. I never posted too much but took in everything you all had to share. I am most grateful for that. I thought of you often and your super healthy lifestyle. I"m glad your'e still in the fight and doing OK (other than this unwelcome surprise) .by carell - Huntington's Disease Support Center
I Just finished the book. She's a wonderful writer.by carell - Huntington's Disease Support Center
I'm back after an extended absence and was just thinking about you and your daughter and BOOM - first post I see when I log back in. I will definitely check out the book. Thank you for sharing this. Your strength over the years really helped me through some hard times (I wasn't that active post wise, but I took in a lot) Hoping today has been a great day for you both.by carell - Huntington's Disease Support Center
Welcome. It's so difficult to be in such flux. Anticipatory anxiety is a killer. However, you will find awesome and accurate advice/feedback on this board. Will is a rock star! Also, (and I am not all trying to undermine what you are going through)- this is an exciting time for HD research. The researchers (sp?) have made great strides in treatment protocols. There is lots of hope at thisby carell - Huntington's Disease Support Center
Yes Steve- Thank you! I don't think that there are actually words to say how much I actually do 'Thank you' to you and Marsha.by carell - Huntington's Disease Support Center
OK-here I am again. I promised myself that I wouldn't go on my normal rage against nursing homes. The hospital staff should be helping you with this. This should not be your responsibility alone. Not that you wouldn't do a much better job than anyone else I continue to be highly alarmed at how little "trained" professional staff first off do not listen to the people who know them bby carell - Huntington's Disease Support Center
Hi Carla- I used to sweat on a daily basis about my mom working. (can't even imagine it being a child I was worrying about). For her, it was one of the last things she had that she was proud of. Fortunately, she made it before retiring and was only working part time- but she also clearly wasn't doing "as well" as she had been. It looks like you have a good handle on what everyone neeby carell - Huntington's Disease Support Center
Will- I'm a bit late in responding. . but this is such great news. I am so happy for you. We can always count on you for a smile Am looking forward to hearing about it.by carell - Huntington's Disease Support Center
Judy- just dropping in to say that I'm thinking of you. . . You're like a rock. . (strength wise ) Stay strong my friend. It's so hard. . .by carell - Huntington's Disease Support Center
Oh God- This was a big deal with my mom as well. She blew through money also and as the illness progressed appeared to have been unable to grasp why this was an issue. Although, I do have to say, once we moved her into an apt, she got better with it. It is a very tricky situation. Is she on any type of SSI (you may have mentioned this, sorry if it has been discussed), you can get her a legalby carell - Huntington's Disease Support Center
Watching people you love suffer can be horrific. Of course you are 'allowed' to care. I'm wondering if someone something to you to the contrary?by carell - Huntington's Disease Support Center
This has just happened to me this week. Thank God it was a sales email that got "sent" out by me. Barb- you could have gotten the Viagra email that was being sent around - haha.. I've received a number of those (the Viagra ones) from friends and at first, I was mortified- then It came to light that that email was part of a hack job. Sooo, this week, I received an email fromby carell - Huntington's Disease Support Center
This story was very sad. I am glad her struggle is over but by far and wide, this was grossly unfair. The behavior demonstrated by her neighbor was atrociously disgusting. Even my BF, who has never even entertained the thought of hitting a woman said he'd like to "punch her right in her f'ing face". (the neighbor that is) Anyway, Kathleens family will rise above this hatred and movby carell - Huntington's Disease Support Center
Jeez... I just took this and it made me look like a hot mess. . . I obviously skipped the spouse questions. Here's hoping it's for real- you never know, maybe someone new to this scene, will read something she writes up in the future and it will be helpful for them. Most of us have been down this path already in some capacity or another. I am not far from the MSPP, I'll have to lookby carell - Huntington's Disease Support Center
Wow Barb! I'm a little late here. . but just wanted to acknowledge this important day. Hard to believe it's been a year. Some days it probably feels like a year and others it still feels like 5 minutes ago. Sending a hug Barb. . . ((()))by carell - Huntington's Disease Support Center
Judy, I 'm so sorry that this stress continues to plague you. When something like this happened to my mom, it turned out to be a brain bleed (However, the ED MD was adamant that she was pre-destined to have this happen, it was a separate incident from her HD- despite her skinny frame, she had a hx of high blood pressure). I don't want to startle you, and it is very likely something else. . Itby carell - Huntington's Disease Support Center
Loss is so hard. Wishing you strength and healing during this time. . .by carell - Huntington's Disease Support Center
Well, I choked on my own words. . . 5 days without power (finally got it back just today), and more than $300 of food gone, but no damage otherwise. No hot water makes me want to gouge myself in the eye. I couldn't wait to get to work for some normalcy. I agree with the media problem- my God, I'd forgotten about Geraldo Rivera! hahaha. The media is downright awful- hyping up every **** damnby carell - Huntington's Disease Support Center
Awww, thanks Barb! I'm in southeastern MA (30 mins south of Boston) and not particularly worried. Looks like the lower states will catch the brunt of it and maybe NYC. My psych triage job is mandated/essential, and so we always go to work and get it done regardless of weather, etc. However, we were due to have a new roof w/skylights (to the tune of approx. $19,000) put in at the end of July anby carell - Huntington's Disease Support Center
Hi Daniel- Welcome to the board and hope you stick around. I must say, that is an interesting theory. I believe there either are now or have been studies on the effects of marijuana on neurological diseases, but I don't know about cocaine. Maybe others on here have had experiences with this. I wonder if Barb meant stimulants as cocaine is not an amphetamine, but is in the stimulant category nby carell - Huntington's Disease Support Center
MIchael J. Fox, as far as I can see, has been nothing short of amazing in his battle w/Parkinson's. His wife and children also I too find this hard to do- but I try every day. . haven't been successful much lately, but will contiue to try. Hope everyone is well today. .by carell - Huntington's Disease Support Center
HAPPY BIRTHDAY BARB!! Sending big birthday wishes across the continent to you and a birthday hug, along with wishes for love, light and laughter. Hope you have a great day!by carell - Huntington's Disease Support Center
TheHays- Are you in England? I didn't realize that it was so different from the U.S. Maybe I'm not understanding the full story . He is in a nursing home and they get paid to take care of him? Or is he at a differet level of care? I can't get started on my opinions (which are really, in my humble opinion, also facts where I am ) on this type of issue because I would still be typing in 7 dayby carell - Huntington's Disease Support Center
OH this nursing home/hospital care s**t makes me crazy. And I've only been through it so far one time, but am gearing up for more battle shortly. I honestly don't know how parents do this. I did it with a parent and nearly killed someone, so I'm not sure how it's going to go the next time around. I am so disenheartened with the general shape of medical care anyway, but stories like this reallby carell - Huntington's Disease Support Center
Good for you guys Luz. . A big congratulations to you- enjoy every momentby carell - Huntington's Disease Support Center
Nice Barb! (about the flowers). It isn't fair that Dan died. Not at all. I hope that over time, like some mentioned above, that certain things will bring you comfort. And of course in my mind, the flowers are a sign from Dan letting you know he's still around- just in a different way. I know not everyone believes that on the forum, but I always will. Sorry this is a rather lame response-by carell - Huntington's Disease Support Center
cbreeze- you may want to review Fred's posts, in regards to your last sentence. I do sincerely hope that things get better for your son. It is a shitty situation to say the very least.by carell - Huntington's Disease Support Center
He must have felt so good after that.by carell - Huntington's Disease Support Center
Hi Millie- thanks for the ray of sunshine. Hope it continues for you. I love that the dog gets him up when she feels he's had "enough" rest - lol!! Dogs rule!by carell - Huntington's Disease Support Center
ugh. . that's terrible. Get lots of rest, eat goodfood and drink (non alcoholic- ) fluids. Hope to see you back in action soon.by carell - Huntington's Disease Support Center