I have Huntington's Disease...My story

Very useful and interesting

my grandpa uncle and cousins had HC

my grandpa was abusive and aggressive, he was tested and did have Huntington's Chorea Disease. he was tested. but i grew up with my grandpa always sick and declining cognitively, when i was like 5 he did not talk and drooled a lot. and he could not talk. i was the only grandchild he held before he could not. but he lived until he was 72 years old, he died in 1972 from heart attack. my grandmom had a generic thing done; someone came to her house, i believe this person said they were one of the first families to do this genetic testing whatever it was. anyway, everyone was tested who wanted to be, my dad tested negative, however, he was aggressive and abusive, my aunt tested negative, but she had schizophrenia. my uncle had a very severe accident and then the HD showed up, and once the test came back positive, he committed suicide, his two sons G and B inherited the disease and later on died. the oldest one G went on and got married and had a son P. i do not know when G and B found out when they had HD however, he died like 12 years ago, and his brother died in a nursing home. I do not know if P has HD or not i have not asked. He recently married. I believe my dad and my aunt even though they were negative for HD still inherited some part of the disease because of the issues they suffered with. my grandma and grampas other 4 children did not have HD. when i was in college for psychology i wanted to get my doctorate and my dissertation was going to be on HD. I'm 63 years old, so i have known about this disease most of my life because of my gramps, it was normal, if you will, in my life. like my grampa had this disease for many many, years as i said so i grew up with it. I was always scared i would have it, but my dad did not and the doctors said there is no way i could have it unless dad had this disease. i wasn't even sure if my children or grandchildren could inherit this but the doctors said no, this disease is truly so sad. i do not know who my grandpa inherited this disease from. but it was once said that it originated from incest. I have no idea, but i wanted to do more research however this do not get finished. im so sorry you also are experiencing this in your life with you and your family. i joined a group for HD and i am so like tripped with how many people have this disease, its crazy. when my gramps was told he had it, it was truly rare, he had been diagnosed before my mom and dad got married in 1958. i think back in 1956 he was told he had this disease. he was a little over 6 foot tall and my gram was 4'9 and she took care of him by herself for all those years as well as taking care of my aunt who suffered with schizophrenia. there was not ever any chaos or drama, it was beautiful to be there to visit, the atmosphere was always so delightful, warm, and loving. gram was always happy, strong, and loving.

i see these things as a family curse. thankyou for the video never knew of this before, you are a strong woman and wish you lots of joy yet to live ❤

Words cannot express the love I feel for you, while watching this. You have been through a lot. My heart goes out to you.

I had a client with this. I absolutely just loved working with her. She inharrited from her father who died when he was in his early fifties. I did not work with her long before I had to send her to the assisted living. This is not something you want to take lightly. You will die from it. It is not a pretty waY to go out.

This makes me sad. I know a family that died of Huntington’s. The mom and both kids had it. I’m so sorry. I hope we find a cure soon.

Thank you so much for sharing. My son's father passed away from HD last September at 32 years old the year before his brother passed away at 34 years old.

My son is 14. He has some symptoms but we are unable to test until he is 18. At this time he doesn't want to know. I respect his choice and just try to make the most of every moment I have with him. Its hard. I pray every single day for a cure. For him, for you and for everyone.❤

What a life journey you all have had 😢 I am so sorry for you and your sister. You are both so young! I am 61 years old. I do have HD in my family. I got the presystomatic test done. And I did not come clear. But I wanted, as you did, to know. However, I do not have the chorea part of the desease. The unwillingly movements. Mostly of arms, hands and head. But surely, I have some signs. I do not have a balance, but my head is functioning ok. More emotional than earlier, etc.
I do luckily not have siblings. And for you to see your little sister degenerate so fast, must be really hard on you. But I think as you do: you are the voice. You make a difference in this community. You use it! And do things which are meaningful to you, lift you up and give you energy. None of us knows tomorrow. And doing our best every day, is all we can do. Mi wish you and your family all the best❤️ Certainly will my thoughts go to your 14 year old sister. And to you, standing ringside. Many hugs to you both and warm greetings from Norway ❤️🇳🇴🎼
Ps. Use your talent and keep on finding your music to inspire your days. 😊🎼👏🎉❤️

i have a different but similar disease in my family (vis a vis heritability) and the question i have struggled with as an adult is why should I have biological kids when there is such a high risk of burdening them of this specific disease? sure they could get any wide variety of diseases through recombination of genes and the environment in which they live, but why give them such a high chance of this known devil? i'm not sure i have a good answer to this question or that this is necessarily useful to others that I share, but it's something I ruminate over often.

Thank you for sharing. The bravery you display is so beyond admirable. I’m so sorry to hear about your little sister. I cannot even begin to imagine all that your family has endured…

I have a friend whose father passed from HD. Her sister was negative for the gene (tested bc she has children) and my friend decided not to be tested unless she decides to pursue having children. I have so much more compassion and patience for people who appear mean or angry on the outside since learning of this horrible disease. You never can fully know what a person is going through just by looking.

I think fear of the unknown is probably universally the biggest fear people experience. And you handle it with such grace, as does my friend. I wish you the best in this life, thank you for sharing such an intimate story. I hope we can find a cure for this awful affliction.

How are you doing now ? Several family members have had HD passed , or have it now , youngest is 27 .. so devastating 😢, the hardness , tortuous way to die …

Can you get Huntington’s disease with zero history in your family

Come, Ye Sinners, Poor and Needy
watch?v=ymJd7B5Xj1w

I’m not sure why this video popped up on my feed from 3 yrs ago. My friend lost her husband to HD about 3 months ago at age 52. He and his dad were doctors and died of HD, plus he lost a sister with HD recently. It’s such a heart-wrenching disease. They were also involved with The Shepherd’s Gift.

There are a LOT of people that don’t know about HD. Several people in my family have passed from it, I haven’t been tested yet but I’m starting to show signs.

I’ve told a few close friends about it, just because I don’t want them wondering what is going on if they notice me displaying symptoms, and none of them had heard of HD. No one I have ever mentioned it to outside my family has heard of it. That’s a good thing I suppose, that means it’s very uncommon.

You are a courageous person to make this video, thank you for spreading awareness.
God bless, wishing you and your family all the best.

why would anyone NOT want to know whether they carried the gene or not? that's what confused me. i always wondered if i had huntington's, when i had a range of physical and mental issues develop.

Sending much love and good wishes ❤

My auntie has it and she has 3 daughters with their own kids, and its 50/50 chancy all my cousins could have it and then their kids have a 50% chance of inheriting the disease...because they've not been tested because they don't wanna know. After seeing there mum deterioate like that, they said if it came back positive then they just wouldnt be able to cope with it after seeing what it did to their mum, knowing thats how they will be before long.

Seeing my Aunty decline from what she was awful

Per chance HD gene could be modified or switched off. Otherwise, you're doomed. Audience wishes you all the best. Cheers!

“A drunk” and “a druggie” are very demeaning ways to refer to people who struggle with substances for their own mental health reasons, please be kind.

Prayers for you Sweetie 🙏

I first heard of Huntingtons Disease from an artist named Oda Felicia. Amazing artist.

Thank you for sharing your story.

So your brain is dying?

I believe in God. He did not intend for anyone to go thru the dreadful tribulations we go thru, and He will end it all…..go to your Bible and look up the Kingdom-of God, tribulations etc . I hope you will find the comfort from the scriptures that I have found.❤😢

I just discovered your channel. Thank you for raising awareness for this disease. I had a beloved cousin, in the family by adoption who had HD, and it needs so much more attention. I'm also a female musician maybe just a bit older than you, and I was recently diagnosed with MGUS, a blood disorder that needs to be watched closely because it's precancerous. Not comparing to what you're going through, but seeing you out there rocking out on stage and not letting your disease stop you is inspiring to me. I wish you all the very best!

Watching the tv show House MD brought me here.

Thank you for sharing 💞🙏🏻🙏🏻🙏🏻💞👊

So so sorry for your loss 💞💞💞💙💙💙🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻✝️🙌🏻✝️🙌🏻✝️🙌🏻 May God in Christ comfort and be with you all

Thank you for sharing! This is such important information for others to have about the disease, testing / diagnostic /quagmire/ obstacles, and for you to share and process! (I’m only 1/2 way thru, time for bed, but will resume tomorrow! ) What an amazing young woman you are - truly a blessing to the world. Look forward to learning & following!

I was a home health aide when I was younger. One of my clients had Huntingtons disease. Angie. She needed a lot of help and caused me more than one near heart attack. I took her to the county fair once and people were not nice because they thought she was drunk. 😢 Huntingtons needs to be talked about more. Her husband was overwhelmed and at the end of his rope, I dont judge him but he wasnt caring for her when the nurses werent there. She had new injuries all the time. He would leave her alone for hours. I know because she lived right across the street from me. This has bothered me ever since because I know she went to a nursing home but I reported it to adult protective services. I still feel crappy about it, because I know she didnt want to go. That was 13 years ago. Ugh. Im so sorry about your sister, I have a 14 year old 😢

We thought my dad may have had it. Instead, it was vascular dementia. That may be the only time some was happy to get that diagnosis. I wish you and your family good health and happiness.

Shelby, sorry this disease came into your family's lives. I'm not dealing with this disease, but I just happened to see this channel and decided to watch. You spoke so well. You are such a strong, inspiring, encouraging and positive young woman. I believe you will help many people.
I love how your song was a connection to so much to bring forth your life's purpose. May healing be your and your family's portion. Keep up the great work!

“It’s Okay” original by Nightbirde (RIP).
Please listen Shelby. 🙏
Thank you. 🫶🏼💫

I had a VERY toxic childhood! My mom had paranoid Schizophrenia and she kolled my baby sister. I love her and always will

My grandmother and several people in my family has this awful sickness. We also have a good friend that has it. Im so sorry i will be praying for you

Thanks for making this video. I really wondered how people with this condition may process it. I wish you and your family comfort in these testing times.

This is a awful illness, my grandmother was adopted, and we didn’t know about this HD until about 2 years before she passed away, my mum is suffering from this and my younger sister is displaying symptoms now. My heart aches for anyone directly or indirectly suffering from this illness. ❤️

I was at a bar the other night and this woman sat next to me and we started to talk and I started to have a hard time understanding her, she then told me that she had huntingtons disease and that why she has a hard time completing sentences. She said that she had walked there so i offered to bring her home, keep in mind I'm 23 and she told me she was 43 and has had huntingtons since she was a kid. She then asked me to walk her to the door and then asked me if I wanted to come in. We walk in and her house is a complete mess, the dishes are stacked and stank a little bit, clothes are everywhere. The only things she really kept clean was her bed and herself. She doesn't have a washer and drier so she has to do everything by hand. I stayed the night with her for 3 days and we got very intimate because I could tell that she had been very lonely for a long time and I stayed and comforted her. I felt really bad about her situation so the next morning I did her dishes and I offered to help her anytime she needs it. That motivated her to start cleaning the house some so then I helped her clean and sweep the floors, we picked up some clothes and I could tell that was making her very happy and it made me feel very good. Shes been independent most of her life, this was a few days ago and she has trouble texting and stuff which now has me worried about her when I text her and she doesn't respond for a long time, we just met so I also don't want to make her feel pressured in any kind of way. I've been praying for her since the night I left her house and I want to go back but I also don't want to just show up unannounced. Is anyone else in a similar situation or has been before? She also like going to the bar and she always alone and she said she has stopped worrying about that a while ago. But I find myself thinking about her more often as the days go by and I want to make sure that she's safe and that nobody tries to harm her because of her vulnerability.

My son-in-law has it his mother had it as well it’s just heart breaking bless you for sharing your story

I have Huntington's disease so sending you lots of love and remember yourva warrior princess 🦋❤🦋🎶

Thank you for this video. I was just given a referral to go see a genetic counselor. I am in Michigan too so knowing the steps was very helpful to me. My Grandmother on my mom’s side had it but was never diagnosed of her 7 children 6 suffered the symptoms but never tested and 1 passed away early, never showing signs. I will be the first to actually go through the process of getting tested. For me I need to know for my daughter. If I am positive I want her to make the decisions, and have the knowledge before having children.

hi I was thinking me n my daughter were the only ones with a family member...my daughter dad was diagnosed with it a few years ago, going through the mental part is so hard cause he gets mad n mean but I know its not really him...thank you 4 sharing

I can help

Isnt it 50 percent risk? It sounds like if you have higher numbers its higher risk to pass it on???? Please answer!

Thank You

Please do not have children. I have watched several families destroyed by this disease. It is 100% preventable mm