Well my name is Heather I am almost 29 and I was just got my test results back last week, my number is 47, whatever that means for me. I have Huntington's, which not to be a pessimist, but I was assuming I would after my grandmother had early onset Huntington's and my mother was showing signs in mid 30's. My grandmother passed early from complications and my mom was 49 when it killed her. I have 4 children and just pray if any of them get it they find a cure before they need it. I love anything related to the great outdoors, well I don't hunt but hiking, caving, climbing, repelling, and photography. So for now I am going to enjoy everyday I have w my kids and can do the things I love. I have first apt w neurologist fri. I hope they do some scans and put a few fears to rest that I have. I am experiencing few things that I don't know what they are and am hoping it is related to lack of sleep or even stress! Nice meeting you guys, hope everyone has a great day!

Hi Heather.

I'm glad you have found this site. There are many very nice and knowledgeable people here. I'm sorry for your news. If you keep your positive attitude, you have the ability to live as full a life as this disease will allow. I hope you have some support nearby or even just someone to talk to, or to give you and the kids some help.

Welcome!
Patty

Thanks Patty. I have my husband who is very supportive and my step mother who was just like a mom to me is coming down to be closer to me. I guess this has made her realize how much she has missed out on with my children and she wants to enjoy every minute she can with us. She doesn't want to come just when I need her, which is really nice. I thought it was crazy that you were the first one to respond. Your post was the first I saw and when I clicked on it and saw your name it brought a smile to my face. My mothers name was Patti. I never got to talk to her about it because it took control real fast and I didn't get to see her for the last 10 yrs of her life. My family kept us away because they didn't want us to see her like that. I wish they wouldn't have done that, but I cannot change that now. However, seeing that name pop up and being able to talk to someone who understands is kind of like having a piece of her here with me. That probably sounds crazy, but it is just a calming feeling, like God put you here on this site!

Good luck with the neurologist appt on Friday. Be sure to find a Dr. who has worked with Huntington's patients a time or two. We went through 4 different ones before really finding a great one. We are in Dallas TX, where you would think would have been easier to find with the "Center of Excellence" in our midst. But we ended up going to a city almost an hour away to find one who not only was familiar with the disease, really listens to us and has compassion. She also didn't take 6 months to get into her office as was the case for the "Center of Excellence". Get all your questions answered to your satisfaction. I hope you will find a research study or two to participate in as that is where the answers will come from for the at risk populations of the future!
God bless you on your journey!

Vicky

Welcome Heather. You are among friends here and help is a keystroke away.

I like your attitude toward family. So many don't have that connection these days. If not for family and friends (and this forum) I would be lost. My experience with COE's and Dr's was similar to Vicki's. Be comfortable with your medical team.

Keep us posted and the best of luck,

Mike

That is funny Heather.
I have been on and off of this site for several years. I recently have taken time to start reading and responding to posts again. Perhaps I was called back just for you!!. I am glad you have some family support around. It is so important.

My husband is 46, with a CAG count of 43. He did have a period of time when he was not able to be with the family. My kids were very young. He was quite aggressive and frightening to be around. He was confined to a state hospital for a year, but once he stabilized, he has been back with us for 4 years now. He has mellowed a lot. His condition is to the point where his limitations are much more physically limiting. I stay at home with him now and I am changing careers to do some work from home. We are enjoying our time together and I feel blessed to be able tomake such a difference for him. The kids are now 12 and 11. They are watching their dad progress in this condition, but I don't think it frightens them. I have a background in occupational therapy, so I try to stay on top of their concerns and always communicate as much as we can about the challenges. Life is not without it's challenges but I think we are all doing well. I am proud to say that I see caregiving behaviors in my son well past his 12 years. He comes to it naturally and makes me so proud. We're doing something right..the other day, Zach said to me, "Mom, if I ever get Huntington's Disease, I hope I have a caregiver as great as you." Being there for our family, it is the best thing we can do.

Keep the communication open. You can always PM or chat me up as well.
Patty

Thanks everyone. I am hoping the fact that we live in Knoxville, and there are supposed to be a lot of great hospitals that we will get lucky. To be honest I have no idea what to look for and ask, in all honesty the only thing I feel is overwhelmed. I just want to get this appt done with. Idk if it is a meet and greet or what all they are going to do. I would like something done to get some answers because I need to know if some things that are going on are signs of something happening or stress or lack of sleep or whatever. I just need answers so I can just go forward whatever the answer is.

Patty: I am glad you to have met you. Even if it is just a few texts on some website it is just nice to have somewhere to go and say something. Everyone around me is acting so weird. They are either looking at me like they are waiting for something to happen or being obnoxiously nice! your husband is lucky to have you and it sounds like you are raising strong children who are handling this amazingly and with grace. I am waiting til I have no other option but to tell my kids they are so little and my oldest has anxiety and emotion issues. He cannot handle it. He worries so much about everything and would fall apart. He is so sensitive and everything affects him much more than most kids. I just want them to be happy and carefree and not have to worry about it or be scared or confused or whatever may happen. Well I hope you have a great night and pray your husband is doing well.

Mike: Thanks my family was not very close growing up and I learned to find family in my friends. They are my strength right now while everyone else is treating me like I am broken or defective. :<

Vicki: I hope this person has experience because I do not know what to do or where else to go. I will update with how it goes and if they seem like they can help.

I haven't said this out loud yet because my husband wants me to stay upbeat in front of the kids so I just try not to let any of it enter my mind, but I am scared. I don't know what the early early signs are, but my arms and legs feel so uncomfortably restless. it is like restless leg syndrome, only 100 times worse. I feel like my skin is trying to crawl off my bones. The more I try to ignore it the worse I feel. idk if it is stress or sleep deprivation. because both of those make it all worse. moving around makes it better but the minute I stop moving it starts getting worse. my legs and arm jerk rather intensly but not very often. I am hoping it is just exhaustion but I am really worried about what the neurologist is going to say and if this is just signs that real symptoms are already right around the corner.

of course you are scared, and I admire your stay positive in front of the kids, but hope you can find some time to process what this all mean to you without having to act like it is something it isn't. You will need time to go through whatever emotions are natural to you after the news. I can't imagine hiding what you are going through. I don't think kids need to hear all the gory details, or their own risk percentages until they are old enough to understand those kinds of things, but it's okay for them to know you are scared, that you might be sick, that you may need their help, and that you are trying to be the best mom you can be while you are going through this.
Hope your appointment goes well and you can get some peace about this!

Vicky

Heather what you are feeling is something we have all seen and felt I dare say. This is a complicated and difficult illness. That's not to say there won't be any more good days or feelings. There will be. Give yourself time to get your head around things. Not many hours go by that I don't think about HD and my family and what I once was. I am still the person I once was only with a little more to think about.

I have two sons at risk and a grandson due in late April who are at risk. They are older but chose not to think a lot about it. The one with a child on the way didn't have it click until the military sent him and his wife for genetic counseling. It is what it is.

Talk therapy helps me a lot. My therapist has been very, very understanding and gets on me a little bit for some of my worries. Of course that is an understanding we have with each other and it's meant to be constructive and is taken as such.

I don't live all that far from you. PM me if you want and maybe I can give you some input if you need it as far as places to find care in this region.

Keep your chin up,

Mike

Thanks everyone. I am just frustrated. If I hear one more time from my husband there is not need to be upset you cannot change it, I may strangle him. All I hear is, don't think about it or don't worry about it....yeah ok, right! apparently me and stress do not deal with each other well. I am sure it is from not saying anything and just pretending it doesn't exist but I feel like I am suffocating, literally actually. it is probably anxiety attack or something idk I just feel like I cannot breathe. I know he is just not dwelling on it and does not want me to dwell on it and waste whatever time is left being miserable, but that doesn't mean I am not going to think about it and get upset from time to time and yes even mad too. I am trying not to get mad at him but I just wish everyone would stop telling me how to feel and what to think.

Hi Heather. I think your husband is delaing with all this information in the best way he can handle right now. In some respects he is right. You may be noticing some "restless legs" etc., but are the symptoms limiting you functionally? Are you still able to care for yourself? Are you working? Are you enjoying activities with your family and watching your children grow? You're probably in that early or pre-symptomatic period where HD doesn't have to be discussed or the topic of conversation every day. It is not altogether healthy to completely put it away for the "future" though.

My husband was already fully symptomatic when he was diagnosed (adopted, no idea it was coming) The kids knew something was wrong, so we opted to tell them that the doctor figured out what was happening to Daddy, it was called Huntington's Disease, and it explains why Daddy gets mad sometimes, and has a hard time moving and walking. They were 6 and 7 at the time. Of course, we did not go into brain degeneration, life expectancy, genetically inherited....all of that is more than they needed or wanted to know. We told them that now we understood what was happening, and hopefully the doctors can give him some medicine to make it easier for him. As the kids got older and observed more, they would ask questions, and I would answer them. I didn't give more information than they asked for, but I did not sugar coat or mislead them. My son was about 10 when he figured out that genetic meant he could get it too. Whenever we talk about their risk, we point out that many bright researchers are working every day to try to find cure. We are active with the HDSA in our area. We attend support groups and fundraisers as a family, and this year, we will attend the HDSA convention together as a family. My son is much more curious and inquisitive, but both seem secure in how HD is impacting our family. I guess I just never wanted our kids to come back to me later on feeling as if I had decieved them in any way. Give the information as you feel they can handle it, then wait for the questions.

I have recently taken both kids to a family therapist to give them a safe place to express any concerns they have about our family challenges.

I may or may not be right. It was right for us, and you will know what is right for you when the time comes.

I feel sure it is easier for HIM to not dwell on this, especially as you are hiding some of your symptoms. Anxiety is a symptom of Huntington's and trying to rein that in for his comfort is just a ticking time bomb. Sounds like he is just in denial and just grasping at a way to ignore what is happening to you. Don't get me wrong, I am a fan of denial! I would love to just close y eyes and pretend my husband wasn't facing this. That he could still just go to work and his body and mind was functioning the way it has for 25 years, it would be a great blessing to put MY head on the pillow knowing that my three stepsons are not at risk of developing this disease; that my grand-daughter would never have to face this possibility of caring for her daddy and possibly have inherited this herself. The reality, unfortunately is that this wrecking ball has slammed into my family (and yours) and all the denial and trying to ignore the truth and deny your feelings and emotions will certainly come back to bite. Try not to be angry with him, he's coping the only way he knows how, as are you right now. You will need all your energy to face this head on, please don't expend any more than you have to on anger. He doesn't understand. Reality has a way of working it's way back to the situation and hopefully he will be able to give you the support you need and allow you to feel what you feel openly, share your fears and come up for air! In the mean time, we are all here and nothing you feel is off limits here!

Vicky

I chose to have my children early, because I knew this was a big possibility, so my oldest is getting ready to turn 10 but I also have a 8,7, and 2 yo. so by the time I start really exhibiting symptoms where they will notice, they will hopefully be a little older and able to process the info better. If Dominic, my oldest, was not already in counseling for having trouble dealing with life in general and dealing w changes, I would tell them, but for now I will wait and just let them be carefree children. I hope that my kids will be as strong as yours sound and we can do all the conferences and stuff together as a family too. I hope whenever it happens I will know what to say to help them and that they will open up to me. Sounds like things are working for you though. I hope I can also do whatever I can to make it easier and less scary for them.

Can you talk to your son's therapist and get his/her recommendation to consider whether or when to tell him? One thing I know is that children sense that something is going on when their parents are stressed. What they are imagining is probably worse than reality. I know it doesn't seem like there could be anything worse but from a kid's perspective, worse might be that someone is dying soon or their parents are getting divorced etc. Maybe, being able to join their parents in a difficult journey as part of the team would be reassuring.
There is a booklet available on the HDSA website about how to talk to children. There is also a book called "walking the tightrope"about being at risk but probably better for older kids.The HDYO website might be good for you to watch as young people give their perspective by video and I found it encouraging.

Our children were older when we went through this 3 months ago but somehow, knowing what we were dealing with created an environment for our family to heal and brought us all closer. This is an enormous life change and not many people can understand how huge this is. Don't let anyone take away your right to grieve this. Allow yourself time to adjust, be gentle with yourself. I believe there are many moments of laughter and sunshine coming your way too!
Jackie

Thanks again guys for all the support. I am just trying to wait for fri to hurry up and get here. It feels like forever away, and at the same time I am trying to keep what is making me nervous to myself, because I do not want to worry my husband if it has nothing to do with Huntingtons. It am so frustrated because I finally got the job of my dreams and now all I can think is how long will I get to do this job and when is it selfish to keep trying, but I get to have a trial run Thursday and hopefully they will like me and I can enjoy it while it lasts!

Good night everyone.
Hope everyone has a great rest of the weekend!
-Heather

8 am tomorrow and things will be a lot more clearer. I'm so nervous. On a better note I got the job I wanted and now I can't help but wonder how long I can do it because it is a job where I could never risk going to work once I start getting worse. ????