I thought that this woman deserved recognition from the people that would appreciate it the most;
my biological mother developed Huntington's very early- around 33 when I was 10 years old. She was a raging alcoholic, used drugs and had many mental problems. as a result, she was violent toward me, dated violent men, crashed cars, caused scenes, our family was a wreck, and eventually she sent me to school with a black eye and I was taken from her at 12 years old.
her sister Brenda, one year younger took me in. cag 46. She also staarted symptoms but not until 38. she did not drink or do drugs- but she did develope mood swings and such. she went on celexa right away. she raised me and put up with all my emotions about my mother.
she continued to live as normal of a life as possible. she took care of my sick grandmother who passedaway in the house while brenda was 45 years old and had huntingtons. she flew down here to georgia to see my children until she was 50 years old and could no longer do it.
now that I have hd i drove up to see her this weekend. she rocked me! she is 58 years old. she is living alone ( although her family does help) she can still eat. she falls often now but refuses to give in. She said to me " i push myself everyday. I had no choice in this, but I have a choice what I do. I will go down the stairs to the porch- I dont care if I fall!"
The only drugs she is on are celexa and a sleeping pill. I was flabbergasted by her when I saw her-- she laughed and siad she will be the only fat person in the history of huntingtons. I know that very soon she will have to be in a full care facility because of the falling- but I tell you all, what a run she has had in her 22 years of huntintons!! We should all say a cheers to Brenda!! she did not give up like all of her sisters did.
I listen to all of you here-- and I ask-- where does the courage to continue come from? I dont feel like I have that in me. How can all of you seem so together and happy and hopeful in the middle of this? you all awe me. your courage is beautiful. I think I am the scaredy cat in the corner and I dont want to do this. I am scared too because I dont have family or a caregiver and that seems even scarier to me.But anyway- just wanted to share her courage and positive attitude. cheeers

Very inspiring post KAG, makes me feel good, I'm glad she CHOOSES to have a positive outlook, She is a success and she refuses to give HD the power, I love that!

it's sounds like you really needed this! I'm so happy that you posted this. I've been worried about you. You really sound like you're in a much better place.
How are you doing?

Well, I'm glad that you visited someone who inspired you.

You see - this is proof-positive that some with HD may handle it in a very bad way - and some in a very positive way.

It's up to you, Darlin'! Will you treat your lovely children the way your mom treated you? Or the way your aunt has?

It truly is your choice........

jl

KAG, JL hit the nail on the head. To give you some hope.....I don't know if I have HD, I'm at-risk, but nevertheless, I freaked out and just knew I must have it, I was in despair and so worried for about 8 months, but I'm feeling better, without any help of meds at this point, but it's my choice! I can let HD and fear of it control my every thought and bring me down, or I can persevere, I CHOOSE the latter and I hope you will in time. It does take time, and yes I realize you are positive, and I'm so sorry about that, but you have now and today and your girls, I know your very worried because you have no family or help and that is so completely understandable, I don't have alot of answers in that respect, except make good memories with your kids, write a journal, take supplements and financial responsibility/planning. ACR-16 seems to be doing really well in trials and I pray it will be approved, a guy named Tony participated and saw improvement.

Good morning,

Blessings to you and your family. First, this made me cry, now I'm going to make the best of my day....Thanks for sharing this great story.


cheers & God bless,
Trey

Kag this is a beautiful story...thanks for sharing your family with us...very inspiring xx

Your story is very inspiring. I surely hope you take the positive and run with it even when it gets hard. I believe that is the only way you can fight this is if you put up the fight of your life. Thank you for the story.

thank you all for your love and concern. I also appreciate the kind words about my step mom. she is a beautiful lady- she truly is the only " fat person in the history of huntingtons". I worry about her often.
I know that I have been distant and unresponsive, it is taking me a minute to figure out where to place my feelings- my worst fear has come true! I ran from it, hid from it, denied it, thought if I was good it woouldnt get me, moved away from it ( cross country), never spoke of it, pushed it so far down I forgot about it- and here I am!!!!!!!!!! Holy S***T!!!! I dont know what to say or what to feel. I am not sure what I am going to do. Somedays I just want to hide under the covers. Eventually I will gather myself in this somewhere. The twitchy feelings in my legs at night are a haunting reminder and I have nightmares every night about my real mother and how awful her entire journey with this was.And fear that i will be like her despite all efforts.
Again- thank you for the love you give me even though you dont know me-- but I guess indeed you do....love kim

Hi Kag, I have read your posts with interest and compassion. This is the first which I've felt you have seen that life doesn't end with the first day of your HD. I understand your fear, too, as my fear has always been that I would get very angry as my brother did and make loved ones unhappy. So far I am still a pleasant person. I've had HD for a good 13 or so years. I started eating more at my diagnosis and now I am also a fat person with HD. (smile)

Kag, I too have been worried about you, but this post gives me comfort because I can see that you're trying to reach out to find inspiration and hope. There are no quick fixes and no easy roads, but there are many, many people on this forum and out there in the community living with HD who you can look towards to find ways to cope and live and give you and your kids a loving, thriving environment.

I know you're scared about the future, but don't forget to enjoy the here and now with your children. Instead of worrying that you'll turn out like your mother, comfort yourself that you're more likely to turn out like Brenda, who has turned out to be an inspiration to you.

Keep positive things, people and thoughts around you. Remind yourself of all the good things you have in your life now. Make lots of great memories for your children.