Hello everyone!

My name is Brittany, I am 22 yrs old, and I've never belonged to any type of forum or support group. I finally decided to join because I really just need some outside support. My 49 year old mother was diagnosed with HD in 2007. My grandma and her four daughters all got it including my mother. Grandma and two aunts have died so far, and my other aunt has lived with it for years. None of my uncles have gotten it. I have a twin sister and we live in a constant fear that we may have it. I'm not emotionally ready to get tested, but I plan to do it before I start a family. As you all already know, it's extremely hard to see our mother deteriorate just over the last 3 years. Three years ago she was driving and working a full time job. Now she can't even dress or bath herself properly. She is also having problems swallowing and keeping food down due to her hernia. She's not the same person, but every now and then I think I see the old her. Even if it's just a look she gives me, it's truly a blessing to me. We'll be starting the process of placing her into a nursing home within the next six months. Well I suppose I'll tell a little about myself:
*I work in health care as a PCA/STNA, and I'm currently working on my nursing degree
*I love to run (marathons, half-marathons, 10k, 5k whatever..I love it!)
*I'm a firefighter for my local volunteer station
*I love videogames (they're my escape)
*I love God (He's my strength)

That's about it. It's nice to meet everyone!

Good to meet ya Brittany. It's tough deal for you, I have two sons, one 20 and one 15. Their mom is in a nursing home and not doing so well, just due to progression. The nursing home is great. You have some thing to get done before you test. As long as your status isn't stepping an anyone else's toes.. like future children.. you don't need to test. I am not pushing my son to test at all right now. I want him to complete college and get on his career path. It's a lot easier to get through that stuff with the wind at your back I think. Just do what you are supposed to do for right now. Keep doing what ya are.. it's all good stuff.

Welcome Brittany
I agree with Eric, you are so young- try your best to enjoy these years. There is no rush to be tested and try to remember you do have a 50% chance of being negative.
I am so sorry you are going through all this. We just have to keep fighting. Stay strong.
Try to enjoy those good moments with your mom.

Brittany,

A warm welcome to another runner. There are a bunch of us on the forum. I've been running all my adult life. I'm gene positive with no symptoms at age 64. My low CAG count (40) has something to do with that, but I'm convinced running and a supplement regimen are helping keep me symptom free.

Will

Welcome Brittany.

Carla

Thanks everyone for the warm welcome!

Will,
I saw your post about the last marathon you ran. Congratulations! My last marathon was in Sept. I ran the Air Force Marathon at Wright-Patt Air Force Base in Dayton, OH. I believe that running can keep people symptom free. That's one of the many reasons why I continue to run, just in case I am positive.

Welcome Brittany,

I confess to being another runner (although part-time compared to Will). I'm on 4 marathons and I'll be looking to increase that next year.

I'm 22, from the UK and I tested positive when I was 19. My father was diagnosed when I was 7 yrs old and unfortunately passed away last year. Sorry for your situation, but it is good to see despite that you seem to have your head screwed on tight. Testing is your choice, it is good that you understand you are not ready, that should mean you'll know when you are.

Have you signed up for NYA membership through the HDSA? [www.hdsa.org] Definitely worth doing, they're a good bunch of young people just like you.

What video games do you like?

Matt.

[www.hdyo.org]

Hey Brit, Welcome!!

I do not do marathons but do run to escape!! maybe I should consider the marathan trail LOL

Welcome!!

DCB
*Living for today*

DCB,

That's great that you run! You should definitely try at least one marathon. There's nothing like crossing the finish line after running 26.2 miles. Great sense of accomplishment. Thanks for the welcome!

Brittany

Welcome Britt. You refer to your sister. I hope that the two of you can be a great support for each other. At times like these, we need a good person to hang on to. I'd be lost without family and friends. I'm married to a man with HD. He's not too bad off yet, but we do see changes every day which concern me. I'm hopeful for the best for my husband and 2 children that symptom management and an eventual cure will ease his HD journey. Already, the HD experience of today is not as awful as the HD of yesteryears. I am hoping that I can keep my husband enjoying his family and daily experiences as long as we are able.

Welcome to the forum.
Patty

britney

i want to welcome you to teh forum.

there is a lot of great suppotr here and a lot of great people.


i want to than you for your post on my thread. it was reassurngi to knoe that there were other people like teenagers who hda the same problesm with the hd paretns as thye became symptomatic.

i was like you in many ways as a teen. could not stand my mother. we fought constantly. and also at 13 my mother wqas diagnosed with hd.there were many tings i said and did i wish i could have taken back. i look back now and see that it was because of her changing personality, temper, fustration, and anxiety, and other hd symptoms

but with my mother in the end we became very close whe i was 19 and met my hubbie got married had 2 beautiful children wchich i kept her very involved wiht even aftre she went inot the nursign facility. we would go see her frequqntly and take her out fro ovre nithg visits so she could spent tims with her grandchildren. wchich she loved to get out for the sleep over as she would call it.

but as she deterioted in the nursing facility we could no longer take her out after about 7 or 8 nomths and that really hurt me. i loved the time we would spend together alone talking. so o just spent morw time at the nursign facility.

she passes away in aug of 2001 and i was diagnosed 1 year to the day of her passing with hd. i got my genetic results that day. but was already symptomatic at 28. i will be 37 at the end of this month and i had to stop driving 3 years ago-was actually told my the hd drs 3 years ago i could no longer due to my symptoms and progression. but i stopprd like 2 years before that because i would gte lost where i was going. coudl nevre find my csr if i was alone. and was just having trouble driving. i would hit the gas and breake to hard and the kids would get neasuated when in the cra wiht me. lol the car would rock back and forth as i hit the gas and break. so i knew i was dangerous on the road way before theye told me i had to stop driving.

i has lost my fatrhe when i was 12 to cancre. and at 13 i was diagmnosed with bipolar behavior. but not officially diagnosed with bipolar unilt 1997. and right after i had my son was born. i had a very hard time for many years. tried msny meds with no relief and then my mom passed in 2001.

there are ways to make it up to your mom but you dont have to make it up to her. she kn ows you love her jsut by the care and support you and your family are givign ot hre. and the time you are spending with her right now anthe time and care given in the next few years mean more to her than any fight you two got into when yuo were a teen. it comes two folds. she took care of you in your time of need as a teen no matteer how angry you were and she still took it right.

now you and your family are trhe caregivers for the timebeing until placement into a nurcing facility. and you have neen that caregiver for the past few years if i remember correctly from your post. you have done so much and more and beyond then ypur mother could have ever expecdet from you. you are a very strong person i could tell from your post. and you love your mom very much. that is all she could have asked for. juts being there fir her, loving her, taking care of her-and i know that is not easy, but you are doing a great job.

hd is a very fustrating and personal. it effect everyone involved. the hd patietn, the caregivesr, the friends, annyone involved. but mostly the hd patient and the family-the caregivers, and the support system involvd. we all deal with it in oru own personal way and by seeking out support you have taken a big step.

testing is another bgi stpe some od us take. it is a personal decision onyl yuo can make for yourself. and if and when that decisino is made you will know the time is right for you. you will know when you are ready for testing if that is what you decide to do when that time comes.

again welcome to the formu

kerri



Edited 1 time(s). Last edit at 11/14/2010 09:11AM by marilee56.

Kerri,

No problem at all. I'm very sorry about your mother and situation. I will be praying for you and your family. Thank you for the advice. Keep in touch..

Brittany

Welcome, Brittany!!

hello my name is Memphis I lost my mom in March from HD, I was tested one week before she died and I am postive, I took care of my mom at home until she passed away in my arms. There is help out there for us. Its very scary but I can help if u just need to talk

Thank you so much, you have no idea what that means to me. Just to have someone to talk to about it.

Thank you so much, you have no idea what that means to me. Just to have someone to talk to about it.

Thank you so much, you have no idea what that means to me. Just to have someone to talk to about it.

Welcome Brittany! Sorry for your reasons to be here but so glad you found this forum. It is a great place to come with any concerns related to HD - you are sure to get valuable support and info that is tough to get elsewhere... I am sure others will be able to benefit from your experiences as well.

Keep on running! And keep on top of the info - if you do wind up HD+ there is much in the pipeline...

Just wanted to say hi . Welcome to the forum . db

Welcome Brittany I am at risk also....although I have a feeling I'm going to break down and test very soon.