Hi people

Hows it all going?

Just checking in to say hello. I see theres a few changes made to the site I.E the photo album (why didnt anyone tell me there was a hot blonde from greenock on here ha ha ha)

hope you are all well and behaving.

Sorry about your team this season Gordon

Any way gotta go back to it.

i will be back

Welcome back, Allan.

We've had some changes, good ones and sad ones. More people are finding this site and the Lighthouse and contributing but we've lost some friends, including Gordon's son Michael and Peter's wife Norma this week.

It's good to hear from you!

Marsha

hi everyone my name is jude. I come from a family of 17 and 10 of my siblings have this disease. i have lost 3 brothers and two sisters so far. I have sister now who is very close to leaving us. It is getting harder and harder each time as they are younger than me. Two are older that have already passed. I also have a brother in Boston who is the twin to the one here he also has huntington. I have a brother in Ca who is on life support as his wife cant let him go. I feel like hell today as I have to make all her medical decisions. She is having such horrible headaches and I dont know what is causing them. We did a CT scan and nothing showed up. Does anyone have any suggestions? She is getting very angry and agitaded at this point. Don't really know where to turn.

Welcome, Judy and Good Luck. Is it your sister-in-law with the headaches? It could be stress. I'm sorry to hear that you have so many affected siblings.

Hey Allan. Dnt think we have spoke b4 but hopefully c u on the chat sometime!

Louise x

Hi i'm Loretta, and i have been diagnosed with HD, also 6 other family members, and like Judy i come from an extremely large family. Mom and Dad had 16 of us. FortunatelY they passed on before we knew about this disease, they always said we'd always have our own game teams, but I don't think this is what they envisioned for us. One of my older brothers was the first to show symptoms, he was misdiagnosed for five years, before they did the HD test. By then he was so violent and beyond reasoning with, that that had to sedate him heavily. He's now in a nursing home, His wife took wonderful care of him until she hurt herself, and couldn't do it any longer three more siblings have a lot of symptoms, but are still at home. A niece and nephew have been diagnosed.also. there is still 30+ immediate members to be tested, but they say they don't want to know. And several are showing symptoms.
I have rambled on for too long, but it was just nice to know that there was a place to go to talk about this. I'm so scared that i don't sleep nights any longer, I'm so afraid that some important cells will die, and me not be able to do something the next day.

Thank You For Listening

Loretta

Didnt tell ya cus you're already taken Allan lol ha ha ha good to se you again

Judy and Loretta, nice to meet both of you. I'm 49 and in the early stages, i'm sorry judy, i dont know about the migraines, but i'm sure others here may know, but welcome to both of you.

Barb
Thank you for the welcome, I'm 51 and symptomatic there is so much that i have come to understand about HD, one is that it will make you your own worst enemy. I'm just 5yrs. younger than my brother that is end stage, and 7 yrs younger than my sister and the younger ones that are already showing a lot worse symptoms than i am. I believe that there is a reason i've been given this time, and hopefully, i won't miss out on the opportunity to do something worthwhile with it. I've already been put on social security because i couldn't do the things required of me.
I'm one of the few people i guess that it didn't take long for them to approve it. Of course my daughter is in charge of it, they said i might not make sound decisions.
It is a real struggle when you are the one going through it. I don't think that unless you have HD. you will never truly understand it, and even then we never do either, for you don't know if what you feel is real or imagined.

Thanks for listening
Loretta

Loretta, i know exactly what you mean, there are days when hd can be frightening. But you know what, i have actually found some of the caregivers here understand me, and what i am about, even better than myself. I find it very comforting to know i am not doing this walk alone, there are so many here that walk with us, it truly is a gift of compassion that some have. Know that your not alone loretta, and it's so nice to meet you.

First let me introduce myself. I am Rachel and my father is in his final stages of Huntington's. I have an older brother, twin sister and younger sister all of us are "At Risk" for this disease. My granfather died from it as well as his sister and brother and my father and his sister my aunt have it. So I will attempt to do the math. 4 Siblings on my side and 3 on my aunts side. Now here is the tricky part for me anyway. So on our side we each have 2 kids (With the exception of my brother) that is 6 and then on aunts side they have 7. You see where I am going with this.

We always knew there was a chance of inheriting the disease, but when my father first became symptomatic, we were to young to understand the magnitude that Huntington's would play on our lives. My brother is 32, My twin and I 29 and Little Sis 25. I can't remember for sure, but I believe my father was in his late 20's when he had his first breakdown. He was hospitalized for a month at that time.

So I believe they just took the feeding tube out of my dad and we are flying out to virginia from california on the 29th. As you all know, there are very long stories that come along with this disease. This is my first attempt at coming to terms with getting tested. I have soooo many questions about different things so any feedback or information you can give would be truly appreciated. Remember my father has been sick since I was 16 years old. Thank you all for reading my first posting and I am already starting to feel a little at ease just knowing that there is this support page out there for us.

Look forward to hearing from you soon. "O)
Rachel

Welcome Rachel, Judy and Loretta! My name is Louise,im 23 and from Scotland. My dad and aunty had HD and passed away in july and august 2004, my sister tested in 2002 when she was 19 and it was positive and she commited suicide dec 2002.

I believed i was also positive partly because it hadnt skipped anyone that i knew of from as far back as my great great granda. I started taking all the supplements then decided i wanted to know one way or the other as i was driving myself crazy thinking about it constantly and it was affecting every aspect of my life so i got tested in aug 06 and it came back negitive.

It was such a shock and still kinda is because over a period of 9years i convinced myself i would 1day have hd and that was mainly based on knowing that it hadnt missed anyone on my dads side of the family that we knew of... thank god my little theory got proved wrong!

Louise x

Louise,

It is very nice to meet you. Is this an international website??? I have noticed there are a lot of people from the uk.

I am sorry to hear about your dad and aunt...and your sister. That must have been hard on you as well. I know all to well that watching someone who is suffering from this and then having to deal with the fact that you may have it as well. Then if there are siblings them getting it and you not. It is a NO END situation.

My brother and I want to be tested, but my twin and little sister do not. My twin is just like you were. Everything she has is huntingtons and her and i talk about it at least once a day, and have been seen my father got sick 15 years ago. I am sad that her and my younger sister who already have 2 kids each between them STILL want more. I get into fights with my twin all the time over it.

I have told her that I don't want to hear about it,unless she is going to something about it. I don't know what else I can say to her.

She told me if I have it then she will take care of me until she can't any longer. I have pushed everyone away from me, and haven't let anyone in...or allowed myself to fall in love, because I don't want to put anyone through that. I have a bfriend...but him and I aren't together all the time. We see each other once a week or every two weeks and that works for us.

I know I am rambling on and on...there are just so many things I want to know.

I am happy to know that others are out there!!!

Thanks

Rachel

(Ps. You are younger than I am. I will be 30, but people think I am 23...)

Lol iv just turned 23 but ppl think im about 18 if even! At least when im 40 ppl will think im 30 haha! I had my son Jack when i was 18, he is now 4. My sister called me all the names under the sun for being a `selfish so and so` for having him, he was almost 4mths when my sister passed and she only seen him twice. Im obviously glad i had him and love him more than anything in this world but at the same time i could see where my sister was comming from. Before testing (well a good 3 years before testing) i decided there was no way i would have another child and pushed every1 who tryed to get close away regardless if i was interested or not - i just couldnt let myself go there and didnt want any1 to because i didnt want 2 put anyone through it as i was so sure i was positive.

All i can say on the having children front is its each persons choice in what they want to do and you have to respect their decision regardless if your thoughts and beliefs are different from theirs.

Takecare

Louise x

P.s - there is many ppl from all over the place on this site! Im sure you will find this site and the ppl here alot of help and very supportive and helpful x

Hi Loretta, Rachael, and Judy! You will meet the smartest, friendliest bunch of people on here. My name is Marsha-my screen name is marshap, so don't confuse me with the other Marsha(the brainy one)
Looking forward to getting to know you guys!

And, Hey Allan! Nice to see you again!

Wow...

Thank you all so very much for opening your hearts up to me. I have had a lot of anxiety the past couple days. We are flying(To See Dad) and I dislike flying immensely. I feel like I will suffocate in there! I am hoping my Dr will hook me up with some Valium.

Aside from that too, the obviousness of having to see my father at the end of his life. I haven't seen him in over 7 years. It has been extremely difficult and nerve wracking since he became ill. I believe I was 15 at that time, so I was into myself...then selfish teenager and like said I hadn't understood the intensity of Huntingtons even though we were told about it since I can't even remember.

I don't seem to have much of short term memory. Apparently I have chronic PostTraumatic Stress Syndrome. I began having anxiety and panic attacks 3 months after my 2nd son was born. I suffered for 2 months, unable to leave my apartment, I couldn't drive, eat sleep, you name it I was that. Believe me I thought for sure it was HUntingtons and had even mentioned that to the Phsyc Dr who I finally ended up seeing in the ER...when I just couldn't handle the agoraphobia and the panicking...I felt like doom...like someone had died. They assured me at 25 I couldn't possibly be showing signs of Huntingtons already if I did have it. They went on to explain that I had Post Partum Depression with all the other symptoms too.

I have really wanted to get tested. I do believe the not knowing will hurt me more in the end.

Just curious, has anyone experienced POST PARTUM when the had Huntingtons in their family before actually becoming symptomatic? This has been eating away at me for 4 years now...

Anyway, thank you all again!!!! I am like a child in a candy store with this forum...:O)

HUGS>>>>

Rachel

Barb
i was just reading all the welcomeing notes, and i truly appreciate the understanding about this, Yes Rachel my younger sister had post partum, but i understand that it is really common after any pregnacy, so don't be alarmed about it.

in my mind it is wrong to have children without knowing, but it is just because i have it, so my opinion is biased. my daughter has two children 12 & 10. we are both worried about her testing, she would do it now but shes only 31 and the insurance co. frowns on pre-existing conditions. and she also wouldn't be able to get ins. later on.
She has a lot of symptoms, but they can also be attributed to other things. So she does the things i do just in case. except some of the medications i take, her dr does have her on antidepressants and some similar to mine, but not diagnosing her.

i still haven't gotten much sleep, but when i go to my dr. the 24, i'll have to see about going back on the clonazepam. i hate to but have to do something for it before it wears me down. I know the last thing i need is to get really sick, i don't recuperate as well as i used to. when i was young and carefree. it seems a lifetime ago. HA! HA!
Rachel i hope things go well on the trip. your dr should give you the valium, but xanex works really good to, and you don't have that yuky feeling afterwards.
there is so much i want to talk about, but i will take it slowly, it's just been so long since i've talked about it with family. or anyone.
I lost my fiancee because he couldn't handle the fact i had to give up working and go on disability, of course thats not the reason he gave so i let him go with as much grace as i could.
I saw how ill at ease every time he was around me, and his mother who has alzhiemers, it was more than he could take.

will write again soon

a special thanks to everyone

Loretta

I am so relieved that we can actually openly talk about this disease on these forums, and that we have a place to "BE US". Thank you ladies for your bravery and compassion. I definitely am a walking bag of emotions. I have been having a lot of OCD and anxiety lately. I am stuck on Huntingtons again. I ponder with it on and off. Last time I was depressed for a couple weeks...I had decided that I would put it out of my mind and concentrate on finding a job, but since my father has been declineing, ya'all know that if you have siblings you are going to have the constant HD CONVERSATION STARTER / BOND.

Our family HD gene poll is strange. My father progressed a lot faster than my aunt. She is 15 years older than him and we just talked to our cousins today, they said she is doing exceptionally well. I can't believe this because she has been sick longer than my father, she is walking around and responds to conversation. Oh and I couldn't believe this...she eats pizza...straight up. The older she gets the beter she feels with this. Also something strange was pointed out to us...in our family on their side (well )THE WOMEN's side, there has not been one case of the mother's passing the gene to any children. My oldest cousin is just turning 40 and she doesn't show any signs at all. Neither does her sister and their brother has severe anxiety i believe.

I cannot believe your mother had that many children..oh man. I was just curious as to what symptoms started within your family? I am wondering if maybe you will have a mild case of Huntingtons as well?

I ordered some Xanax today so I will have that ready to go when I fly. I already told my (twin) sister that I was going to knock myself out during the flight with my valium...i can't sleep on planes...and forget about all that turbulance too...no thank ya.


Please start from the beginning...so I am with you from the start with all your stories.

THANK YOU ALL AGAIN...

RACHEL

Hi All - welcome. I am positive, age 36. My mom passed away a little more than 5 years ago - she was sick for 15 years. The HD Gene has gotten stronger with each generation. My sister and I along with my cousin are all in very early stage. We have 6 kids between us - but my cousin had an HD free child.

Please feel free to ask anything that is on your minds - everyone here is very open.

I hope your travels are stress free and that you can have some peaceful time with your father.

Please keep us posted.

Stacy-NJ