A message from Mom Huntington's disease

[dumonceauxable]

Your Mom is an amazing and beautiful woman. She seems so very mentally sharp and has an inspiring attitude. If her movements were not so marked I would never guess she had HD. Thanks for posting.

[cam794]

you get half your genes from one parent and half from the other, so if you have a parent with HD you have a 50/50 chance of having the gene. if you have the gene you will develop the disease and you children will have a 50/50 chance of having the gene. it is not a recessive gene, if neither of your parents had the gene, you will not either. I have a mother ,4 aunts/uncles and so far three sibling and many cousins passed with this disease.

[Blackduck46]

Mum sounds so positive. She still speaks clearly and I wonder if a 3ml injection of Haliperidol monthly would help her movements. I have and am living through 3 generations of Huntingtons.I nursed my wife until she died at home for more than 12 years (1999) I knew her father who died in an institution when she was 16. I am currently nursing my 41 year old eldest born daughter at home. She is in advanced stages and is bed bound. 3 of my 4 children tested positive. It affects the whole family.

[SideOfLife84]

Easily one of the cruelest diseases out there. My heart goes out to your mother and your family. If she has lived to 69 with this disease, she has conquered more hardships that most people can ever imagine. I have no relative with this disease; and came across it out of pure curiosity and concern. I have grown to empathize with those affected. Keep on keeping on!

[anx1300c]

Her speech is excellent.

[TheUnicorn567]

I really enjoy this video. I am also a nursing student doing a presentation on this disease and I am going to use this video in my presentation because I love how she is strong and willing to share how she feels. God bless her and your family.

[cubano07x]

As a Psychology student this disease intrigued me but the text book definitions and descriptions do NOT do this disease justice. This is a lot worse and more severe than I had originally anticipated! I hope your mom is doing alright and the rest of your family as well!

[Angeldemorta86]

The bad thing about this Disease is the fact that it runs a Family line, if your mom has it you may get it, its like a 50/50 Chance and so far there is no non cures at the time being

[jlaminar]

@Angeldemorta86

There are a lot more "bad things" about Huntington's then the fact I could have it.

It's not "like" a 50/50 chance, it is a 50/50 chance.

But thanks for coming here with a ... lesson.. ?

[Angeldemorta86]

@jlaminar

The reason i say its like a 50/50 chance is the fact that if your mom has it, then you have a 50/50 chance of having it or not, the reason i know this is cause it runs in my Family and my Grandfather died with this disease. Theres 3 stages you can get hit with it, when your a baby, pre-teen/ teen and adult hood. If you dont have it thats good its something i dont want to find out that i have, its and automatic death sentence in my book, grandfather tried to kill him self on more then

[Angeldemorta86]

chance

[jlaminar]

@Angeldemorta86

I'm sorry about your grandfather! Does your mom or dad have it?

If they don't, you can't have it. Your chance then is zero.

I have been tested and I don't have it.

It isn't an automatic death sentence (well for us). Mom is 69 now and amazes me everyday with was she can accomplish, she knows no limits. Her motto, "Keep moving".

[audigrad]

Thanks so much. I am studying this disease but this helps more than any textbook. Your spirit is so admirable.

[TwittyWhit07]

My neice was diagnosed with Juvenile Huntingtons shes now 17yrs old.....my sister placed her video on here to raise awareness of the condition....its on my page aswell....my love to your family....xx

[jujubagirl]

She's precious, I've worked as a carer with a midwife thaat had hd and I know how hard it is. Hope she is doing well . She worth a million dollars!mShe will be in my prayers. Fraternal hugs for ur family.

[drmam17]

thats real strong women

[Eclaire51]

I think it is so amazing how well your mom was able to express herself and think and talk so smoothly and quickly with all the chorea. In my husband's family Hd slows down the thought process and speaking much more....making communication difficult. It is very interesting to hear what the chorea feels like. Thank you so much for sharing this video. You have helped so many people by doing this!

[Eclaire51]

I think it is so amazing how well your mom was able to express herself and think and talk so smoothly and quickly with all the chorea. In my husband's family Hd slows down the thought process and speaking much more....making communication difficult. It is very interesting to hear what the chorea feels like. Thank you so much for sharing this video. You have helped so many people by doing this!

[pccjo]

Thank you for sharing this very personal view. i have been able to share this someone recently and they found it really useful. it has helped them on their journey with HD.

[happynurse63]

She must get exhausted fast, chorea's aren't usually this pronounced are they?

Thanks for sharing, I might do my project for 4th semester nursing class on HD!

[daddysgrrrl03]

I love you Grandma

[keenandwhat009]

I feel sorry for your mum, your mum had 10 kids, how many of you's has she passed on hd disease too.

[tlopez95]

Thank you for sharing this video. So far my grandpa, my mother and two uncles are living or lived with HD. At times it gets too hard to see them suffering. But it does bring my family together for support. I hope this video raises awareness. My prayers go out to you and your mother and that they find a cure or treatment soon!!

[corsoluvs]

Your mom has such a wonderful spirit and such a beautiful lady. Hope all is well. Thanks for sharing this video.

[doublebubble022000]

My Uncle just died of Huntington's (he had the chorea too, my grandfather didn't) and so many other people in my family have also. Someone in my family is ninety two and just began to show symptoms which is good for her, she won't suffer as long, but she has already had so many children and grandchildren and great grandchildren without knowing. Let's hope the good Lord will help us find a cure.

[Badcat55]

Mom,

Im travelling in New Jersey tonight. Came here to see this video again and you got me crying. I love you so much. Lloyd. YOU ARE MY HERO MOM. :)

[tchamicito]

Anybody can translate it to spanish or french?

Quelqu'un peut le traduire au français ou espagnol?

[kleinco07]

stop reading this comment and get back to work...that means you, Cusato.

[SarahAlanis22]

I believe my father is coming to his end with his HD. He was diagnosed about 15 years ago. No one else in our family has ever been diagnosed. My siblings and I have not been tested. My husband wants to start having children, but I am terrified that I may be at risk. This disease is so hard on families. It is so hard to find information on this disease especially about the extreme final stages. Good luck and God Bless. Lord help us find a cure!

[misswishstorm]

My father has Hd and my grandfather and his eleven brothers had Hd and so did all there children. Me and Fiance are debating on having children too because of it .

[mallejamie]

have you been tested too? if not, that's the first thing i would do before thinking about children, you don't want your children to go through the same thing, or even let them go through the pain to SEE their parent suffer from a disease like this

[Eekybod]

Thank you for this video. My Mother had HD. I was an only child,she abandoned me when I was a baby.I met her for the first time 10 years ago,but lost touch shortly afterwards.I found her house in Jan 08, 3 weeks before my 30th Birthday, but there was no-body home and the house empty.The neighbours said she died 6years ago.

I've now found out that she died of HD.I'm waiting to undertake genetic testing process.

I think you're both very lucky to have each other.Thank you for giving me hope.

[Eekybod]

Thank you for this video. My Mother had HD. I was an only child,she abandoned me when I was a baby.I met her for the first time 10 years ago,but lost touch shortly afterwards.I found her house in Jan 08, 3 weeks before my 30th Birthday, but there was no-body home and the house empty.The neighbours said she died 6years ago.

I've now found out that she died of HD.I'm waiting to undertake genetic testing process.

I think you're both very lucky to have each other.Thank you for giving me hope.

[RNEMESiS42]

??? I tried to give a thumbs up to

flyawayburty's and southflcutie's comments at the top, but it made them minimize and say "marked as spam"! They still got thumbs up...but they were also marked as spam...sorry...that must have been a bug?

[flyawayburty]

yur mom seems nothing like my dad, she seems really coherent for being as physically symptomatic as she is... my dads 50 and has hd and he cant really answer any questions and he can barely string a sentence together... i think yur kinda lucky that she can still talk to you...

[southflcutie]

Wow, its amazing how much your Mom is like mine. My mom started progressing earlier, she's 48 and is already bedridden and living in a nursing home. We tried not to put her there, but she was very combative and would not let ANYONE help her with bathing and eating, etc...  she definitly wouldnt take any meds to help with her symptoms. The final decision was made when she started sneaking out and wandering down the streets. We actually had to Baker Act her to help her. Thank you for ur video.

[lehcarsmada]

I think that your mother is a beautiful and very strong woman. I am in nursing school and I'm doing a presentation on HD, I was curious as to if I might be able to use this video in my presentation. Thank you and God bless

[jlaminar]

No problem you are welcome to use the video. She is very strong and very beatiful. Thanks for your comment.

This was taken a year ago, I wish she was still at that stage.

[madrywallmike10]

Dear Mom

I hope you don't mind me calling you Mom Iam one of you many HD Family members.

It was nice to see you on the video, You are so precious to us, Please know that you are always in our Hearts, We Love you very much.

Mike & Raima

[xbabyface08x]

i am doing a subject on HD for my graduating project.. may i use this vid as a reference?

[jlaminar]

Of course you can. I've asked mom before if she would mind anyone using them and she was happy about it. Anything that brings more attention to HD is ok with us.

[xbabyface08x]

thank you and im sorry about HD

[ribenawrath]

wow...she is surely an amazing woman

my mum is 36 and she has HD severely, she cannot talk, and is bound to a chair. she just cries when she sees my brothers and me

[circekitty]

Thank you so much for posting this video. My mother struggled with HD for so long, and I also lost my 2nd mother (Mom's sister) and another aunt is now suffering. My oldest brother has HD. It's so helpful to know how one with HD really feels and what she is going through. The movements are so similar to my mom and aunt. This video made me cry. God bless your family. We're all praying for a cure. Your mom is wonderful!

[pray4HDcure]

Your Mother is awesome- a real hero! Thank you so much for sharing this. I cried for you all & I decided I had to join You Tube to tell you how you have changed my life. I will pray every day for a cure to be found. and until then, that you will not lose hope! I laid awake for a long time praying for peace, wisdom & strength to meet your needs. God bless you All!

[shojyn]

Thanks so much for this video ! It gives some excellent insight into what a person with Huntington's is going through which you just can't get from reading alone. What a courageous woman !

Wishing you and your family all the best.

J

[cterrell8]

I love this woman with all my heart and soul. I am one of her 10 children who is also her caregiver. She is an amazing person with so much strength and faith. It hurts me to see her so frustrated with the disease and the many side effects it brings her. I love peeking in her room at night when she is sleeping to see how still her body is and how peaceful she must be to have 'rest'. My heart and love goes out to every family out there that is affected by HD. I love you Mother! XOXOXO Carole

[asongtowardslife]

May G-d bless you and your family. We are also living with HD and we are also living with hope. My mother and many of her sisters have been diagnosed. Still, we live and remain hopeful in our living. All the best to you and yours always.

[tommymxmi]

God Bless You and your family. My mom also suffers with HD and I am gene positive. My heart goes out to you. Your mom is a wonderful lady. Thank you for showing your story and bringing awarness to HD. Take care

[JoeLV67]

I love you Aunt Carole...I love the strength you show me and have taught me through my life.

[angelatoasis]

Traci,

Wow. You have a powerful story to share with others, to help them understand this disease. Your mom's own words. Praying for you!

[jlaminar]

Mom is still doing fine. Tracy is my sisters ex husband and no longer is in contact with her. The comment made it sound like she had died, she is well.

Jennifer

[angelatoasis]

Sorry, Jennifer. I did not think she had died. She has a very powerful story. I know when I worked on the unit with this young lady, not much was known about Hunt. Glad she is well.

Angel

[AZtracy]

I'll never forget sitting underneath the tree in the park talking our lives with you - connecting with you - souls together. Now, as I sit here alone without you:

Pale sunlight,

pale the wall.

Love moves away.

The light changes.

I need more grace

than I thought.

I will love you forever. Until we meet in Heaven...

Tracy.

[beenthinking]

your mom is beautiful. God Bless your family.

[retepick]

Thank you so much for sharing this video!! I am a medical student and these videos help me understand diseases such as HD much better. Best of luck you.

[Badcat55]

This is my beautiful Mother. To know her is to love her. Mom, I love you eternally and I'm grateful you did this video. It took me 1 month before I could hit play. But glad I did. :: tissue :: Love your son, Lloyd Jr

[melmanson]

My father had Huntington's. I hope between the new documentaries and youtube postings, people will become more aware. Your Mom is great. You're very lucky!

[suetwin2]

Thanks for sharing this video and thereby increase awareness of HD. My late husband had HD and died last year. God bless.