Hi Shelby. Thank you for sharing your story. I was wondering with the diagnose of HD in the family. Did any of your family members or have you ever had OT, PT, Speech to help with symptoms related to the condition?
I have nothing against at-risk people who choose not to have the test done but if you plan to have kids, how selfish and insensitive you are to go that route without knowing whether you can pass the genes to your kids and to the next generation. This disease can be eradicated if people would work hand in hand with 2 rules. If you tested positive, then you have the option to PGT (Preimplantation Genetic Testing) if you want to have kids. If you don't want to know your status (don't want to undergo testing) then DON'T have kids at all.
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
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.
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.
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. ❤️
Thank you for sharing. I’m so sorry your family is dealing with this awful disease as well. That’s why I try so hard to raise awareness. Sending love & prayers 🙏
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.
I found your channel and I'm sending you love. I also struggle around Christmas time because I am not on speaking terms with my parents and have a lot of trauma that took place around that time of year. It's hard to be struggling so much at a time of year that it seems like everyone's happy and together with their families. I also had a traumatic experience with my first psychiatric medication. I'm doing better now thankfully but I can really relate to just how messed up the wrong medication can make you feel. I'm also grieving the loss of a loved one, it's been about 9-10 months since my soul cat passed in my arms after 19 years of love, and I still cry when I try to conjure up pleasant memories of her. Even so I'm blessed to say my life is good, despite all the hardship, I count my blessings and feel quite fortunate. And it's always good to remember that other people have similar experiences with holidays, meds, grief, etc. Thank you for sharing your experience, I found a lot of solace in this video.
I’m so sorry for your loss of your precious cat, my heart breaks for you 💔 I have 3 dogs and I can’t even fathom the day I one day lose each of them. The thought is unbearable. Thank you for sharing your story. I’m so sorry you have been struggling as well. I am hoping and praying your medication helps you 🙏 thank you for the support! sending you love and prayers. 💜
You ARE a Champion! ❤ I hope you can hold on to these words: “There is none like the God of Jerusalem, who rides the heavens to your help, through the skies in His Majesty! The eternal God is your refuge, and underneath are the Everlasting Arms…” Deut. 33:26-27a
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!
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.
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 😢
Thank you for sharing. That is so sad.😞 but nothing unusual with those with HD symptoms in public unfortunately. It’s very unheard of, or misunderstood by most people who have heard of it. I’m happy you were there for her, she needed it🙏 thank you for your support 💜
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!
Beautiful girl !! What a lovely sister you got to experience earth side. She will be now your watching and protecting you as a angel at your side . Sending lots of love to you xxx❤
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!
Thank you so much for sharing! I’ve known lots of families who have found HD through adoption as well. It’s so hard for I watch anyone go through. I’m so sorry you are also going through a terrifying battle. Sending love and prayers 🙏
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.❤😢
You're so brave, Shelby, to share your OCD and depression and anxiety experiences with us all. I can really relate. I have all three conditions myself. There is severe mental illness on both sides of my family that have led to multiple suicides. In my family, mental illness is sort of like Huntington's. It's so prevalent and debilitating. And we family members worry that, if the mental illness is genetic, we will have the defective genes and will suffer the same fate as the family members who didn’t survive their mental illness. With Huntington's, there's a genetic test that can show if you have the defective gene. In mental illness, there's not yet genetic testing that can show if you've inherited a defective gene that makes you 50% at risk for carrying the gene. I know how it is to have OCD. I do things in numbers too.😂 My number is eight. I do a lot of things in eights. And i have intrusive thoughts that have limited my life in certain ways. But also, my knowing that I have OCD has given me the ability to keep some of my OCD behavior at bay. You're an awesome person. Thanks so much for making yourself vulnerabe and sharing those vulnerabilities with your RU-vid audience. You are strong for doing so. Keep on, keep on!
Thank you so much 🙏 and thank you for sharing your own journey with all of this in your own life. My heart goes out to you! It isn’t easy, but we get by day by day 🩷 sending love & prayers. Again, thank you for your kind words 🤍
