The reaction has been a little strange. When I told him that Greg was not doing well several weeks ago, he cried a lot and talked about Greg with all of the caregivers who come to the house. And when he died, Tony started making plans to go to the memorial but then on the next day he started saying that he could not go because of some minor reason. The breaks on his chair need repair for eby Maggie - Huntington's Disease Support Center
I still miss Anne. Just the other day I found myself laughing at a story she told me about a midnight encounter with a neighbor. And I often think about that strange florist that delivered a bamboo plant to her. It can't be five years, Brat!!by Maggie - Huntington's Disease Support Center
Bob, I am so sorry to hear about Liz's death. Our prayers are with you.by Maggie - Huntington's Disease Support Center
Tony and I will be having shrimp and a garden salad on Sunday as we have every Feb 5th for the last 50 years beginning on our wedding day in 1962. We wanted to share the memory with you all. I will take it down to save space later. Maggie Our wedding was not what most little girls dream of, but since my dreams had never included a wedding, I was not disappointed. I wore a kaki colored dby Maggie - Huntington's Disease Support Center
Kelly, you really should write a book about your life. It is very therapeutic . As I was working on my book it seemed to make events and emotions much more clear. I was trying to make the reader understand but I was making myself understand as well.by Maggie - Huntington's Disease Support Center
Hi, Colleen Sorry to hear that your sister is having trouble. I like the shower that I had installed in for Tony. First of all, it is huge…about 6X6. It has no doors (glass or others) to fall into and break. It has three water sources, a hand held shower head, one in the ceiling and a regular one from the wall. The water hits the back wall and has never gotten to the outside of the sby Maggie - Huntington's Disease Support Center
Happy Holidays, everyone! AND HAPPY BIRTHDAY, KELLY!!!!!!by Maggie - Huntington's Disease Support Center
I sent you a PM with the name of our doctor. He likes lots of inputs from the people he sees and I like that. Maggieby Maggie - Huntington's Disease Support Center
Tony had to have implants because he broke his teeth often and then the crowns within a week after they were done. I was concerned about it. Our dentist worked with an oral surgeon that we knew and liked. I had them place a conference call with Tony’s neurologist to discuss how the work would be done. The three are all good at what they do and were willing to work together to make me comfoby Maggie - Huntington's Disease Support Center
Eric is still at risk, but I see no signs.by Maggie - Huntington's Disease Support Center
"It really seems you're able to appreciate every moment, too." No, I do not appreciate every moment but try to manage each moment. It is not easy and Tony is having a hard time right now. He is very paranoid and seems to think the worst about our sons and me. He is nice to us when we are with him but then writes long emails to our attorney and his brother. It almost seems like aby Maggie - Huntington's Disease Support Center
Bluegrasslady, I thought you might like to meet Tony and our son, Jason. From Jason's blog. It’s a pain “It’s a pain.” dad said, and laughed. I had asked him what he’d like to tell people in his own words about living with Huntington’s Disease. We were sitting together in a hotel bar in Dallas the evening before he was to meet with the neurologists supervising his cliniby Maggie - Huntington's Disease Support Center
Here you go, Dusty I think if any of us had a chance to plan a pregnancy we would plan an HD- baby. But you didn't have that choice and neither did I. I worry about the children who grow up in an environment of hate and anger. I speak from my own sad experience. My little brother-in-law, Doug, was 7 or 8 when his mother was diagnosed. Although she had always known that she was at riby Maggie - Huntington's Disease Support Center
Bluegrasslady Wrote: ------------------------------------------------------- > > My husband and I conceived and gave birth to a > beautiful baby boy, whom we learned, just two > months ago, is at-risk for HD (as is my husband). > Our son is only three months old. We're terrified > and devastated. > . I believe > that anyone who "loves children"by Maggie - Huntington's Disease Support Center
I am so sorry for your loss, Mango. You handled the difficult early days with grace and loyalty to your husband. Take care. Maggieby Maggie - Huntington's Disease Support Center
You are so right about the nurses. I have had very good nurses and very bad ones. I have been fortunate in the spring for the last two years. I have had plant loving nurses and they and Tony could not wait for me to go to work in the morning so that they could get in the car and go to every nursery in town. Our patio was been nice with every pot filled with their purchases. I had one who stoby Maggie - Huntington's Disease Support Center
I have a chairlift. Tony used it one time with our son holding him in place. He could not keep his feet on the foot rests and I was afraid that his foot would fall between the stair and the chair. It does have a dead man switch but still it was frightening. It does have a seat belt so he could not fall off, but he could get an arm between the chair and the posts of the stairs. I had ours eby Maggie - Huntington's Disease Support Center
Have you found this website? They are wonderful ladies.by Maggie - Huntington's Disease Support Center
Hi, Colleen A Canadian snow bird told me to wake up and read the forum and say hello to you. I am glad you are here. There are so many wise and caring people here to offer support and their experience to you. It makes the HD road a lot easier. Your mom was always so proud of her three beautiful girls and I am sure that she would be pleased that her family is pulling together to support eacby Maggie - Huntington's Disease Support Center
Powers of Attorney are important for any caregiver. I had to fax a copy just this week to the insurance company to get a copy of Tony’s policy. Since Tony is the president of our company I use it often to sign contracts or endorse checks there. The agency didn’t have an issue with protecting Tony’s privacy. I think they didn’t understand HD and thought that I would be hurt or angry aby Maggie - Huntington's Disease Support Center
Thanks, Marsha. Very interesting information. Damage control is the right word for it, Carla. I am on my second agency. The first one had policies that the aides should have followed but nobody enforced them. Cell phones were a big problem. I got home from work one day and Tony said the aide had been in another part of the house all day on her cell phone and that he had not had snacks or meby Maggie - Huntington's Disease Support Center
My original question was about responsibility and ethics. Should a nurse or health care professional inform the principle caregiver of behaviors that could cause the pHD or family harm? Or is the responsibility to the pHD only? And should the professional contact the doctor of the pHD without the knowledge and consent of the caregiver? One of our employees had a similar problem with a heaby Maggie - Huntington's Disease Support Center
You are right, and you said it better than I did. Years ago when he was still going to the office every day, he stopped going to the engineering or production weekly meetings with the staff because it was becoming too hard for him to keep up. The pace was too much. But he couldn’t blame himself or HD for that and even though our sons always tried to include him, they were there doing the joby Maggie - Huntington's Disease Support Center
enjoy your day!!!!by Maggie - Huntington's Disease Support Center
Congratulations to Carla and Judy. Both of these posts really hit home with me. Why is it that the caregivers and families have to spend so much time defending themselves from the health care professionals? Why can’t we work together for the benefit of our loved one? Tony has had spells of paranoia off and on for years. It is always centered around our business and his belief that our soby Maggie - Huntington's Disease Support Center
I am so saddened for your loss. Howard is right. You are an inspiration.by Maggie - Huntington's Disease Support Center
My son had the symptoms that you describe in your husband. He was certain that he had HD….so sure that he did not want to waste the money to test. At my insistence he did agree to test and was negative. If you’re interested, you can read his story here.by Maggie - Huntington's Disease Support Center
Now I am getting flags on new posts. I didn't do anything! I was logged in before and after. All is well. Thanksby Maggie - Huntington's Disease Support Center
Mine are all white and stay white even when a new post is added. Could it be that this computer is not the one I registered on?by Maggie - Huntington's Disease Support Center