Blue Daisy, Did you run across any insurance inssues while going through your neurologist? Also, did you get long term care insurance etc set up before going? I was just saying last night that if I could just go to the doctor and not have a dragged out process I would be more willing to take the leap. I don't want getting tested to consume my life but at the same time I can't deal with not knby katierae13 - Huntington's Disease Support Center
Mare my Dad---> Ian, Ian----> Mary--haha that was my virtual introduction!by katierae13 - Huntington's Disease Support Center
I just wanted to share that this afternoon I spent nearly two hours talking with the resident and it was great! He told me all about his family, career, Huntington's, his hobbies, where he's traveled and where he still wants to go. Truly made my day to sit and talk to him for awhile today. He's a very happy guy for being in such a tough place, we laughed alot and he kept calling himself lucky I tby katierae13 - Huntington's Disease Support Center
Hi Mare, My Dad, Ian lives in Vermont and he is HD+. He's in the very early stages but I know he would love someone to talk to that is close. Private Message me for more info!by katierae13 - Huntington's Disease Support Center
Thank you to everyone that provided me some constructive feedback, it is greatly appreciated. Often times, I sit down and have meals with residents here just to hear their stories, so I think that is how I will start my friendship with this particular resident. Alot of people in long term care facilities just want someone to listen to them, and when you give them that ear they'll tell you wayby katierae13 - Huntington's Disease Support Center
I've passed this along to my Dad who lives in Vermont.by katierae13 - Huntington's Disease Support Center
Barb, I am going to disregard your rude comments. We are all here for the same reason, to get clarity and support. There are positive ways of expressing things bu you are plain old rude. For being fairly new to this forum and HD you are not making me feel welcome or supported at this forum and I do not believe that is supposed to be the feeling I get on here. Opinions and thoughts can be expressby katierae13 - Huntington's Disease Support Center
Barb, I find your response to be rather attacking. Maybe I worded my question/concern wrong or maybe you read it wrong. Either way I thought this forum was for support and a shoulder not for attacking as you did Barb. I ask because like being on this forum sometimes it's nice to talk to someone that knows about the disease. Let's be honest CNA's RN's and the doctors that work here know veby katierae13 - Huntington's Disease Support Center
Hey All, It's been awhile since i've been on here but I'm finding myself needing some advice right now. My Dad was diagnosed with HD in April of last year and I have not yet been tested. My dad is doing fairly good he's slowly seeing more and more things that scare him and prove that HD is indeed part of his life. Let me explain my current situation. I am the Director of HR of a long termby katierae13 - Huntington's Disease Support Center
Judy, I'm really sorry that you do not have the ability to think outside of your opinion. I respect your opinion and that may be what is right for YOU, but you are not a part of my family and don't know what is best for US!by katierae13 - Huntington's Disease Support Center
Well said djcloc! I'm grateful for people like you on this forum that can see things from different perspectives. Life is entirely too short to give up on all the wonderful things. Thank you for posting, some days it's hard for me to stay on this forum because I'm not supported by wanting a family while being at risk for HD.by katierae13 - Huntington's Disease Support Center
JudyF, the good thing is...you don't have to get it.by katierae13 - Huntington's Disease Support Center
Dad, A cure is down the road! For you and anyone else in our family that might have HD! Stay positive and don't let any of your thoughts fog your brain so much that you forget what you have today! Love, Your Daughterby katierae13 - Huntington's Disease Support Center
cbreeze---I just want to give you the biggest hug ever in this world!!!! THANK YOU! Thank goodness there is someone else out there that realizes every person has the right to make their own decision!by katierae13 - Huntington's Disease Support Center
Keep hoping and wish and praying!by katierae13 - Huntington's Disease Support Center
I wanted to write and see if there is anyone in this community that has experience with anonymous testing in Colorado or in Denver specifically. I'd be open to just doing the blood test and following up with counseling somewhere else if need be. If anyone has any information, I would really appreciate it. I'll most likely be looking to get tested after April of next year. Thanks ahead of time!by katierae13 - Huntington's Disease Support Center
I really believe that every HD story is different. My grandfather had HD and lived until his late 70's (him passing was not due to HD), my father who has HD is 53 and shows no symptoms to the naked eye. I am at risk of having it and you're right, maybe I haven't seen it enough to be "scared" enough but with the history I know about my family and HD, I don't feel like I have to stop my lby katierae13 - Huntington's Disease Support Center
It's all perspective, everything in life is. I UNDERSTAND HD is 50/50, but my point is life as a whole is a risk. Anyone can die tomorrow whether it's HD or not. As a person at risk I do understand what HD is, so please don't try to tell me that I don't. My only point to that was to understand both sides, I think every individual at risk has the right to make the choice that makes the most seby katierae13 - Huntington's Disease Support Center
I feel like I need to say something in all of this. I am recently engaged, and also recently found out that HD is in the family...up until 3 months ago I had NO idea what HD was or that it was in my family. Once we found out, my father got tested and sure enough, he has it. So let me ask you this, as a person that has always DREAMED of having kids and a family am I supposed to give all of that upby katierae13 - Huntington's Disease Support Center
I am only concerned because my employer paid benefits became effective today, but my Health Insurance carrier has not processed my application due to further research. They did not have much for information for me. My father was recently diagnosed with Huntington's and he used his insurance for all of his testing etc. I am currently on his plan while I transition to my own plan. My head automatiby katierae13 - Huntington's Disease Support Center
Hi All, Since my father has been diagnosed with Huntington's and went through insurance for his testing, is it possible that I could get flagged and denied coverage? Any information would be greatly appreciated. Thanks!by katierae13 - Huntington's Disease Support Center
I am very close to your situation, and it is SO great to read your post. It's exactly how I feel. I'm 24, engaged and afraid to get married not knowing whether I have it or not, but at the same time....this time in my life is a time i'm supposed to ENJOY. I'm torn. The thoughts in my head don't ever stop, they never got away. I do my best to talk myself into having better days, I hope over time iby katierae13 - Huntington's Disease Support Center
Since finding about HD in my family and me possibly having it, I have found myself in several selfish moments. A friend get's in a fight with her parents over whether or not she should get a dog, she is hysterically upset and all I can think is, really? You're crying over that? My family and I essentially have a death sentence in front of us and you don't see ME crying. Two good friends ofby katierae13 - Huntington's Disease Support Center
I cannot thank you all you wonderful people enough! My head has become a little more clear, I just keep writing; both online and in my journals I find that it helps me. I also keep a inspirational quote journal and one quote that has helped me this week is: "Let your dreams guide you, not your fears" I know one day I will get tested, prior to planning a faby katierae13 - Huntington's Disease Support Center
Blue Daisy, thank you so much for sharing your story! Being tested negative when all the family around you seems to have can almost be just as difficult i'm sure. I've thought about that myself, how will I feel if I get tested negative by my oldest most close sibling does have it? Or vice versa? It's such a gamble this 50/50 nonsense. Thank you so much to everyone for their support. It's tough, iby katierae13 - Huntington's Disease Support Center
Thank you to everyone for all of the kind words, it means so much. Deciding to get tested or not takes a toll, but at the end of the day it's about what will be best for my fiance' and I, and that is what we are sorting out. It's been a roller coaster of emotions lately, but that's expected HD is alot to take in. I look forward to looking to this forum for support and advice.by katierae13 - Huntington's Disease Support Center
Smiley, thank you for the positive post. Did you and your husband do private testing if so, how much did the out of pocket testing cost you? Jodie3134, did your husband do any counseling with the test? If so, was that also anonymous and paid out of pocket? The current question I have is that when you do get tested you generally do counseling with it as well, should all of that be anonymous as welby katierae13 - Huntington's Disease Support Center
Hi Everyone, i'm new to this forum and so is my family. My father recently found out that he is positive for Huntigton's Disease with a score of 44. We found out in the last year that HD has been passed down, we aren't sure how far back but we think my deceased grandfather suffered from it, although never diagnosed--he had Polio so I feel as everything got put into that. I'm 24 years old, newlyby katierae13 - Huntington's Disease Support Center