Hi Mike, that must of been a big shock when you got diagnosed with HD...especially as you have no family members with the disease!

Its great that you have a supportive family, friends and wife!!

It sounds like you are doing the best you can living with HD which is really good. Its nice to hear from some people living positively with HD...you should be proud!

Melissa

You know Melissa, I try to keep up a good front. I worry about everything, what I do and say or can't do and say. Feel like I have to tell people why I can't remember words or why I am so tired, can't understand what was said, then think why did I do that. I am always concerned about progression, wonder if the Dr's are correct, but after all I went through for a diagnosis, I really know it is correct. Generally I use a cane to get around just for the imbalance. It sucks but "it is what it is" as my best friend tells me. Our very close friends make "fun" of my stance, stagger, cognitive issues at times. It is meant in the best terms and they are very supportive. As distasteful as it sounds it is not, it is meant to be supportive and to be realistic. They try to convince me that we all do that but I know it's support. My best friends wife calls me to go to lunch so I won't be a vegetable and so on......I wish everyone had friends and family as invaluable as them.

With my HD mind I remembered this morning that one of my biggest concerns is for my children and possible grandchildren. My boys don't want to be tested until there is reason to be. If it was in our family history, I am certain I would not be as positive. I get very concerned with some post abouwhetherer to leave or stay. We are not there but it is concerning to me. I do not want anyone to stop posting who needs help but it does hit home.

Everyone here has been wonderful and we are all blessed to be connected. (Thanks Marsha and Steve).

Mike

It sounds like your very lucky to have such a supportive family and friends. I know my family will be great if i test positive too which is a relief to know.

I can understand you must be worried about your children...i will keep my fingers crossed for you and your family. Hopefully they wont get HD as it wasn't in your family history!

This forum is great and its so nice to be able to talk to people going through HD. I know it definitely helps me alot!

It's been my pleasure talking to you. I will hope you have the best outcome possible. It's not the end but a new beginning.....(trying to be positive).
Mike

That is a great tat, I took a pic of it, hope that is o.k. I want to put it on my fb page, my hubby suffers from HD and I have shared a lot with my fb friends.

Of course thats ok Im glad you like it!

He told me he had HD before we started dating. His father passed away last March. He spent his whole life being active and self sufficient. Had his own business that he started from scratch. He can't stand not being able to do it all himself. Mikee I admire your spirit.

Beautiful tattoo ! I already have one that represent my 2 kids, a sunflower with their initials, and one of my horse.

I'm thinking of getting one that would represent the HD flower, but i have to wait and try to digest 2012 for me.

Nancy

Nancy, what is the HD flower? I'm not real sharp sometime.....

Melissa, thinking of you.....keep your chin up girl......let us know

I would like a mangnetic "thingy" with support HD......would be a good fund raiser......I'm thinking of a way to start awareness in my area....recently my wife saw an obiturary of a guy my age who passed away from HD.....would like to talk to family.....

Mike

Hi Mike, well i went to my first appointment with the genetic councellor and i told her all the symptoms ive been having (which im not sure if they are early signs of HD or if its just from stress)

so anyway i am having a neurological examination done next friday to see if i have any symptoms. (They said its my choice if i want to know...which i will!) and then i will have the blood test in febuary i think.

Im quite anxious about the next appointment and i just really hope im not showing symptoms yet...if i do have it. I am only 21...but i know its possible for that to happen.

How are you doing?x

Holding my own which is a good thing....thanks for asking.

I really hope things go well. Fortunately or unfortunatelignorancece was bliss in my case. I'll being praying for you. Do your best to keep a good attitude. It's difficult when faced with these things to do that and you really have to dig deep but you can.....Take deep breathes and think before you react.....(easy said I know)....

I just spoke to a friends daughter who is a senior looking for a project. Last year she did a magnificent job with Cystic Fibrosis since her Grandmother passed away with it in June. She is interested in Huntington's this year and is going to present it to her class as their project. The tattoo brought to mind magnets as well as t-shirts and braclets. They did well for her project last year and all proceeds go to research. She is going to talk to me more about it as she gets information. I will be looking for input from our community.

Mike

Hi Mike, the Amaryllis is the flower that helps bring money to the HD foundation in Canada :

"Our Amaryllis volunteers sell bulb kits to raise vital funds for our programs in research, services and education. Each and every Amaryllis kit we sell takes us one step closer to finding a meaningful treatment for Huntington disease (HD). Each and every Amaryllis kit blooming in someone’s home or business holds the promise of a world free from HD.

Each kit is priced at $12 and contains one high-quality Orange Sovereign bulb, growing instructions, soil, pot and saucer, and is packaged in an attractive gift box. Bulbs can be planted immediately or stored in a cool, dry place for holiday gifts. Gorgeous orange-red blooms will appear approximately 6-8 weeks after planting."

It's a very beautiful flower !

Nancy

Hi...just an update from me.

I had the neurological exam and they noticed twitching and that i have un-responsive eyes...and they said i MIGHT be symptomatic. I have to wait until 5th march to have the blood test and then get results on the 2nd april. Then if i am positive i will be sent to london to do more tests to see if i am symptomatic...not looking good but im ok...just NEED to know.

Melissa

Hang in there. We're thinking of you here.

Mike