going public on terb

[papasmerf]

than kyou for that papa...
i plan to hang arounf terb for a long time..
.
my brain won't allow me to multi quote today i keep clicking way off base...but
i wanted to thank everyone for all your comments..they mean a lot to me..

i wanted to share this a while ago, maybe i woudln't have got some comment like i looked stoned lol

THANK YOU

Darlin

sometimes the best I can offer is a hug a shoulder to lean on

 

[amber-jade]

I don't know Ambers symptoms, although she mentioned some earlier in the thread.

As for realizing if something is wrong, I don't know Amber's story, but I do know that often a diagnosis of Huntington's comes long before the first symptom ever shows itself. Because it is genetic, if one of your immediate family members (parents/grandparents/uncles, etc) has Huntington's, they will monitor all immediate family members, and sometimes do genetic testing.

That was how my friend got his diagnosis, he doesn't even have any symptoms yet, but has Huntington's disease. His father had it and so all the children were tested. It may be years after a diagnosis before a person shows any sign of Huntington's.

Huntington's is an autosomal dominant gene, meaning in most situations, a child has a 50% chance of having Huntington's if one parent has it.

wow...you nailed that perfectly

 

[randygirl]

wow...you nailed that perfectly

Awww...shucks, I'm blushing! lol

 

[Shades]

Amber....have "seen" you around the board for along time...too me you were always, and still are one of the cool ones. No games, great humour...a positive contributor. Sorry we never met but my thoughts and prayers are with you as you play out the hand....
All the best,
Shades

 

[Aardvark154]

Huntington's Disease is as mentioned by Randygirl caused by a non-sexlinked (autosomal) dominant mutation of either of a persons two copies of the Huntingtin gene (which produces a protein believed to be used by nerve cells) on Chromosome four. The end of the Huntingtin gene has a sequence of three anino acids cytosine-adenine-guanine (CAG), called a trinucleotide repeat, the non-mutated gene having between seven and thirty-five repeats. The mutated gene has more than 35 repeats (the highest number thus far found is 250 repeats).

It is sad that all the difficulties that those with Huntington's go through are all due to "excess genetic chatter" on a single gene.

I'm really very glad Amber that you have been willing to share with us in this way. My thoughts and prayers are with you and yours.

 

[Kilgore Trout]

You're such a sweet girl. Now I feel bad you got dealt this hand.
I lost my sister last year to Lou Gehrigs disease. That was such a hard road for her to go down.

 

[amber-jade]

Huntington's Disease is as mentioned by Randygirl caused by a non-sexlinked (autosomal) dominant mutation of either of a persons two copies of the Huntingtin gene (which produces a protein believed to be used by nerve cells) on Chromosome four. The end of the Huntingtin gene has a sequence of three anino acids cytosine-adenine-guanine (CAG), called a trinucleotide repeat, the non-mutated gene having between seven and thirty-five repeats. The mutated gene has more than 35 repeats (the highest number thus far found is 250 repeats).

It is sad that all the difficulties that those with Huntington's go through are all due to "excess genetic chatter" on a single gene.

I'm really very glad Amber that you have been willing to share with us in this way. My thoughts and prayers are with you and yours.

thank you for that explanation Aardvark....though i have been well informed about (HD) for many years
i am sure it will assist in the understanding for anybody who reads that

 

[Aardvark154]

thank you for that explanation Aardvark....though i have been well informed about (HD) for many years i am sure it will assist in the understanding for anybody who reads that

I know you are I was just coming back to change my post make it clear that was background information for the rest of us, but you beat me to it.

 

[amber-jade]

I know you are I was just coming back to change my post make it clear that was background information for the rest of us, but you beat me to it.

thats one of the symptoms...moving WAY to fast lol

 

[lovedoc]

some early symptoms might look like the person is drunk, or stoned on something like rock...slurred speach, involuntary movements ( chorea ) lack of balance...etc

Dang, that's the exact same symptoms i get after seeing an SP.

Even though we haven't met, I feel for you and your family. If you're strong enough to handle us Terbites, you can go through anything. Stay strong.

 

[Stoo]

i tried to hide it and continue at an attempt to be ''normal''...

Geez, don't become "normal"... you won't fit in around here anymore!

AJ, when I first met you way back when, I did indeed think there was possibly something "pharmaceutical" going on! Your partner in crime at the time, Drew, pulled me aside and straightened me out. Ever since then, I have had the greatest admiration for you, for living life the way you want, and kicking the disease in the co-hones as best you can!

A "disability" is only that if you let it take control, and I suspect that you won't let it do that without a hell of a fight.

All the best to you cutie... You have many friends here whose kind wishes will hopefully find you!

 

[phail]

wishing the best for you amber, stay strong.

 

[Leighster]

Amber I haven’t had the pleasure, but from your posts I think you are an awesome lady with an outstanding sense of humor.

I hope this doesn’t sound hollow coming from someone you don’t know, but I am very sorry and I truly wish you the best.


Leigh

 

[Rockslinger]

Hi AJ, I am so sad to learn of your situation. You and Justin are very brave. I wish you much joy and happiness in the remaining time, however long or short, you have left. I will pray for you.

 

[The Bandit]

AJ, I wish you all the best in these tough times, make the best of every day and live it to the fullest. It's heartwarming to hear you are surrounded by caring and support.

Best wishes kiddo, take care. Hugs.

 

[bucky88]

AJ,
I can't say anything that you don't already know. You have lived and will continue to live life to the fullest. I admire your courage and joie de vivre. You have given me cause to reflect on the beautiful things in life that we often take for granted - hugs from loved ones, sweet soft kisses, the warm feeling of doing something good for others, laughs, a great meal, and let's not forget giving and receiving great O's. Take care,

B88

 

[HOF]

Amber, your honest and open approach to informing everyone is heroic and humbling to say the least.

Vita Active means the active life and you should live and love like that as long as you can.

You've already displayed your courage, and Justin is a special person seeing you through this journey.

 

[Brill]

you know the funny thing?
one of the symptoms is a higher than normal sex drive....

IMAGINE THAT lol

How is that even possible??? Poor Justin... ;-)

 

[amber-jade]

How is that even possible??? Poor Justin... ;-)

he disagree's

 

[randygirl]

Wow, this is so very very sad.

But it is heartening too as you seem to have such a good attitude towards the life you have left.

I was thinking the same thing! This thread is so sad...and yet, it is also heartwarming, uplifting. The responses from the members towards Amber's post is phenomenal, and makes my heart feel big.