Huntington Study Group
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All Good Things - Erin Paterson
HSG 2023 Annual Meeting Speaker Highlight:
Author and HD advocate, Erin Paterson, shares her inspiring story of overcoming the challenges of being diagnosed with Huntington's disease and infertility.
Learn more about Erin Paterson and her publications at: www.erinpaterson.com
For details about HSG's Annual Meetings: huntingtonstudygroup.org/about/our-annual-meeting/
zhlédnutí: 89

Video

HD Insights of the Year with Dr. Daniel Claassen
zhlédnutí 298Před 4 měsíci
Dr. Daniel Claassen's HD Insights of the Year presentation at the 30th Annual Meeting of the Huntington Study Group in Phoenix, Arizona on November 3, 2023. Dr. Claassen shares stories of love and fear, as well as the importance of compassionate patient care. Viewer discretion is advised. The following content includes sensitive and potentially distressing topics related to a school shooting. T...
HSG 2023 - Celebrating 30 Years
zhlédnutí 27Před 7 měsíci
HSG 2023 - Celebrating 30 Years
HSG 2023 - Sandra’s Story
zhlédnutí 31Před 7 měsíci
HSG 2023 - Sandra’s Story
HSG 2022 Staff Video
zhlédnutí 66Před rokem
Every Fall since 1994, the Huntington Study Group (HSG) has hosted an annual, internationally recognized forum for training and education of Huntington disease (HD) researchers, and to share new research findings and treatments with the worldwide community, plus much more! This multi-day event includes two days of plenary sessions (Thursday and Friday) geared towards researchers, clinicians, an...
PROOF-HD: About PROOF-HD (Ongoing)
zhlédnutí 518Před 2 lety
The Huntington Study Group is conducting PROOF-HD, a Phase 3, randomized, double-blind, placebo-controlled study evaluating the efficacy and safety of pridopidine in patients with early stage of Huntington disease. To learn more, visit www.PROOF-HD.org.
Who is the HSG? - Andrew Feigin, Elise Kayson, and Shari Kinel
zhlédnutí 92Před 2 lety
(November 6, 2021) Founded in 1993, The Huntington Study Group, HSG, Ltd, Not-for-Profit and the HSGCR, Inc, For-Profit wholly-owned subsidiary of the HSG is an organization of researchers who work together with the HD community and sponsors seeking treatments that make a difference for people affected by HD. That’s our mission! HSG has 131 worldwide credentialed sites conducting clinical trial...
Peter Como Symposium Platform Presentation - Sara Picó
zhlédnutí 32Před 2 lety
(November 5, 2021) The Peter Como HD Symposium is named in honor and in memory of Dr. Peter Como, a founding member of the Huntington Study Group who played a key role in starting the symposium. The symposium focuses on clinical HD research by presenting valuable findings and information to event attendees through platform presentations of submitted abstracts as selected by the HSG Publications...
Stand up and JOIN-HD!
zhlédnutí 29Před 2 lety
(November 6, 2021) Dr. Lauren Byrne, University College, London. Dr. Byrne is on the Board of Trustees for HDYO, Huntington’s Disease Youth Organization. This presentation talks about the Juvenile-Onset Initiative for HD. Topics include, lack of disease knowledge contributes to isolation for families, difficulties of genetic testing in minors, how research of HD is vital, and more. JOIN-HD is a...
HSG 2021 Keynote: Jean Paul Vonsattel
zhlédnutí 82Před 2 lety
(November 4, 2021) Challenge of processing and characterizing postmortem human brains to investigate the pathogenesis of Huntington disease. Dr. Jean Paul G. Vonsattel from Columbia University Medical Center shares his learning objectives and challenges in Huntington’s disease of comorbidities in HD brain samples, grading system or staging of HD, and the importance of well-characterized and opt...
Meet Victor Sung and Sam Frank
zhlédnutí 47Před 2 lety
Meet Victor Sung and Sam Frank
DNA Repair in Huntington’s Disease - Lesley Jones
zhlédnutí 159Před 2 lety
DNA Repair in Huntington’s Disease - Lesley Jones
Meet Jim Gusella
zhlédnutí 92Před 2 lety
Meet Jim Gusella
HSG 2021 Inspirational Speaker - Alexandra Drane
zhlédnutí 23Před 2 lety
HSG 2021 Inspirational Speaker - Alexandra Drane
Genetic Counseling for Predictive HD Testing: Expanding Access - Kate Foreman
zhlédnutí 18Před 2 lety
Genetic Counseling for Predictive HD Testing: Expanding Access - Kate Foreman
HSG Working Group Presentations - Nora Fritz, Lori Quinn, and Jamie Adams
zhlédnutí 38Před 2 lety
HSG Working Group Presentations - Nora Fritz, Lori Quinn, and Jamie Adams
Huntington Disease: A Complementary & Integrative Approach - Danny Bega
zhlédnutí 97Před 2 lety
Huntington Disease: A Complementary & Integrative Approach - Danny Bega
HD Innovators Forum with Live Q&A Panel - Neubase, NeuExcell, Ophidian, PTC, and Triplet
zhlédnutí 93Před 2 lety
HD Innovators Forum with Live Q&A Panel - Neubase, NeuExcell, Ophidian, PTC, and Triplet
Physiotherapy: Results from the PACE-HD Study - Monica Busse-Morris and Lori Quinn
zhlédnutí 44Před 2 lety
Physiotherapy: Results from the PACE-HD Study - Monica Busse-Morris and Lori Quinn
Can We Modify HD with Alfy? - Ai Yamamoto
zhlédnutí 86Před 2 lety
Can We Modify HD with Alfy? - Ai Yamamoto
HD 101 with Andrew Duker
zhlédnutí 54Před 2 lety
HD 101 with Andrew Duker
New and Upcoming Research in Therapeutics - Jee Bang and Wenzhen Duan
zhlédnutí 63Před 2 lety
New and Upcoming Research in Therapeutics - Jee Bang and Wenzhen Duan
HSG Study Participant Interview - December 2021
zhlédnutí 99Před 2 lety
HSG Study Participant Interview - December 2021
Demystifying Behavior in Huntington Disease - Katherine McDonell
zhlédnutí 266Před 2 lety
(November 6, 2021) Katherine McDonell, MD, MSCI, from Vanderbilt University Medical Center, outlines an introduction to behavioral changes in HD, gives an overview of the most common symptoms, and a general approach to treatment and tips for management.
HSG Studies: vUHDRS® - Samuel Frank and Jody Goldstein
zhlédnutí 28Před 2 lety
HSG Studies: vUHDRS® - Samuel Frank and Jody Goldstein
Q&A: What’s on Your Mind - Martha Nance, Andrew Duker, Jee Bang, and Jaime Hatcher-Martin
zhlédnutí 37Před 2 lety
(November 6, 2021) In this Q&A session, Dr. Martha Nance, Hennepin County Medical Center, Dr. Andy Duker, University of Cincinnati Gardner Neuroscience Institute, Dr. Jaime Hatcher Martin, Atlanta, Georgia, and Dr. Jee Bang, Johns Hopkins University School of Medicine, Baltimore provide answers to questions on telemedicine and will this way of medical care continue, how do we live well today wh...
Huntington Disease: What's New and What's Not - Matt Bower
zhlédnutí 475Před 2 lety
(November 6, 2021) Matt Bower, MS LGC, Genetic Counselor from the University of Minnesota Health gives some key points on autosomal dominant inheritance of HD, CAG repeat ranges of HD, genetic testing, and the spirit of collaboration in the HD community to talk about gene therapy trials.
Postmortem Brain Imaging in Juvenile Huntington Disease - Tim Koscik
zhlédnutí 131Před 2 lety
(November 4, 2021) Dr. Tim Koscik holds a Ph.D. in Neuroscience. He is an Assistant Professor in the Department of Psychiatry at the University of Iowa. He presents his research of the postmortem brain imaging in Juvenile Huntington disease, brain donations, brain scanning, and a recent scanning case.
Letting the Genie Out of the Bottle - Martha Nance
zhlédnutí 46Před 2 lety
Letting the Genie Out of the Bottle - Martha Nance
HSG 2021 Family Day Welcome & Kickoff
zhlédnutí 7Před 2 lety
HSG 2021 Family Day Welcome & Kickoff

Komentáře

  • @mattanderson9145
    @mattanderson9145 Před 25 dny

    Erin! Thank you so much, for sharing once again.. I hope to be at one of these conferences in the future.. Hearing similar success stories of hope and resilience from others, who will undoubtedly have received motivation and encouragement from your strength.... You're an inspiration, and if God is willing, maybe I'll have the strength to stand on a stage one day to tell my families story!

  • @mattanderson9145
    @mattanderson9145 Před měsícem

    Great information!!! So glad to have found this video..

    • @HuntingtonStudyGroup
      @HuntingtonStudyGroup Před 28 dny

      Thank you for the positive feedback @mattanderson9145! HSG strives to produce high-quality, educational content for the HD community. Stay tuned for more content that will be posted throughout this month from our HSG 2023 meeting!

    • @mattanderson9145
      @mattanderson9145 Před 25 dny

      ​Can't wait! Thank you all for the effort that goes into it all!

  • @GordonBain-hi6ww
    @GordonBain-hi6ww Před 2 měsíci

    I have hd there is no cure

  • @VanessaDayleRaeWaggoner
    @VanessaDayleRaeWaggoner Před 4 měsíci

    Thank you

  • @sismarin
    @sismarin Před 5 měsíci

    Are there no studies with methylene blue?

  • @stonefacecollin
    @stonefacecollin Před 5 měsíci

    one thing I am curious about is that if there is a cure, will people get it, Chorea largely isn't a condition where a person with it can't make there own decisions, if there is a cure I highly wonder if people will refuse treatment because it takes away what makes the unquie

  • @andrewforrester8386
    @andrewforrester8386 Před 8 měsíci

    It is genetic in my mom's side of the family. I'm due a test for it. If I have it I'm going out on my own terms. I'm not living like that

    • @PANDASMC_2
      @PANDASMC_2 Před 4 měsíci

      aye man its gentic on my dads side and my uncle did the exact same thing your saying i understand but dont.

  • @radhamadhavi8217
    @radhamadhavi8217 Před rokem

    ,

  • @MrMackmack5778
    @MrMackmack5778 Před rokem

    I just got diagnosed positive and I am 28

  • @Lilly_Wambu
    @Lilly_Wambu Před rokem

    What happens if the patient does'nt use the prescribed medications? They are very expensive for us and can't afford them for now

  • @courtneyyon5916
    @courtneyyon5916 Před rokem

    I would to talk to you for help. Been dealing with this my entire life

  • @georgen9755
    @georgen9755 Před rokem

    hygiene, end of life care , late stage HD , abnormal movements, TV remote, non pharmacology treatment, cedar Brooklyn facility

  • @georgen9755
    @georgen9755 Před rokem

    injury prevention communicate latest but not late, cedar Brooklyn care facility, we need to end this hunting disease ,

  • @smileyface5908
    @smileyface5908 Před rokem

    Thank you so helpful

  • @oceannaperry7424
    @oceannaperry7424 Před rokem

    my mom died last July due to huntingtons malnutrition,she was only 80-85lbs when she died of a severe ecoli/and pneumonia/sepsis. she didn't have anything left and could not fight,and her pneumonia turned into MRSA.She was perfectly fine 3 days prior to being this sick..talking to me telling me she is ok. two days later when I was supposed to pick her up on july 1st, she was found in her apartment slipping into a coma from septic shock.....she used meth to subside the hunger in her body,and feelings.....she was such a good mom/grandmother/friend...RIP-Rhonda Francis-We love you to the moon and back-

  • @debwoods3831
    @debwoods3831 Před rokem

    My husband was able to get into a clinical trial Dr. Sung lead at UAB. Even though the trial ended abruptly, it is coming back in a different way but my husband doesn’t qualify. I know without a doubt that we are heading towards end stage. I’m glad Dr. Sung follows my husband’s care.

  • @jimmycrackkorn1596
    @jimmycrackkorn1596 Před rokem

    No thank you! Somebody just give me a 38, and I'll give the middle finger to this curse.

  • @maryanngames9353
    @maryanngames9353 Před 2 lety

    Thank you for passing on information on HD no matter what the age. I don’t have it, but I am interested in learning about. I do have MS so I am interested in other chronic progressive diseases👍❤️

  • @ireneyoung8696
    @ireneyoung8696 Před 2 lety

    That was really clear and very useful in understanding this disease.

  • @janemike3490
    @janemike3490 Před 2 lety

    PERMANENT CURE TO IBS WITH DR OJE ABACHA IN LESS THAN 2 WEEKS NO SIDE EFFECT.

  • @dridume6042
    @dridume6042 Před 2 lety

    through dr idume I got cured using his herbal medicine and now I'm better and normal, thanks to him👇👇👇 czcams.com/video/DahqD2Ijn_4/video.html

  • @wesleywilliams3150
    @wesleywilliams3150 Před 2 lety

    My Huntington’s Disease story begins like most people in the HD community. With a family history. about a year ago I was diagnosed with having the defective Huntington’s gene. Yes, it is hard - and some days are much harder than others - but there are many positive noises coming from the Huntington’s experts about new research and treatments and that fills me with real hope. Have a look into gene silencing, it’s like something out of a science fiction movie, but it could be ground breaking! It was obviously gutting to have my fears confirmed but I at least know what I am up against and I know that it’s unlikely I’ll experience symptoms earlier due to having a similar CAG count. (A CAG count. Huntington's Disease is a devastatingly aggressing disease, I have known that neurological disorders were aggressive. As I learnt more about Huntington’s I wanted to do something positive in what was a negative situation. I know it’s hard at times but you should try not to focus on the negatives. Try to turn them into positives. I was hopeful that a cure will be found as science is really doing all they can. We took part in a research project which involves a two day trip to Florida to the Huntington’s Disease Centre, We were opportunity to meet with Dr Odia, A highly recommend herbalism with scientific medicine. There are lot to say about Dr Odia, I really want to thank God that this man was used to end my sorrow, All my pains and tears turn to joy from the day I came in contact with Dr Odia, We were educated more about the use of herbs and few purchase the herbs which I used for two month and three week's. To my greatness surprise it did work out for me. There is no need for anyone to have a date stamped on their forehead when they’re diagnosed with Huntington’s Disease. I would encourage anyone to seek a second opinion especially if they’ve been told there’s no hope. It’s also crucial to learn as much as you can about your diagnosis. Seek options. Find out about what’s out there that could help. Contact Dr Odia via( Dr Odia Herbalist Home on Facebook) or email: drodiaherbalistcenter@gmail.com).

  • @milld9345
    @milld9345 Před 2 lety

    What’s HD?

  • @channelsharon5621
    @channelsharon5621 Před 3 lety

    I wan to use this medium to say a very big thank to dr Ehimare on youtube who was able to cure and reverse my mother in_law from this Huntingtons disease and God will bless you continiously sir🙏. You can also contact dr Ehimare on his youtube channel or what +2349027349748.

  • @thelmacandid8530
    @thelmacandid8530 Před 3 lety

    I never know herbal medicine treatment are very effective and important not when i realize that my husband was cure permanently from Huntington's disease and this traditional herbal Dr Ehimare on CZcams also cure HPV and Als disease You can also contact Dr Ehimare on CZcams channel OR whatsap contact +2349027349748.

  • @thelmacandid8530
    @thelmacandid8530 Před 3 lety

    I never know herbal medicine treatment are very effective and important not when i realize that my husband was cure permanently from Huntington's disease and this traditional herbal Dr Ehimare on CZcams also cure HPV and Als disease You can also contact Dr Ehimare on CZcams channel OR whatsap contact +2349027349748.

  • @channelsharon5621
    @channelsharon5621 Před 3 lety

    I wan to use this medium to say a very big thank to dr Ehimare on youtube who was able to cure and reverse my mother in_law from this Huntingtons disease and God will bless you continiously sir🙏. You can also contact dr Ehimare on his youtube channel or what +2349027349748....

  • @channelsharon5621
    @channelsharon5621 Před 3 lety

    I wan to use this medium to say a very big thank to dr Ehimare on youtube who was able to cure and reverse my mother in_law from this Huntingtons disease and God will bless you continiously sir🙏. You can also contact dr Ehimare on his youtube channel or what +2349027349748...

  • @isabell462
    @isabell462 Před 3 lety

    I'm helping my friend he don't even what stage his at ..knowing him for pass 8yrs. .he just told me last year..sadly I can see his going down..I'm watching videos to help him as much as I can😢😢😢😢😢😢

    • @bal0076
      @bal0076 Před 2 lety

      It's very hard to see someone that was so active and this disease takes everything away from them My bro inlaw has Huntington's and to see the way he was and what he has become.its very hard for my sister she is very supportive of him. He has 4 daughters and the chance for them to have this heredity disease is 50/50 He only found out 5 years ago that he had HDat the age of 49 and it has been downhill ever since He has gone from being independent and hard working to being reliant on his wife and kids for everything from feeding to bathing Sad so sad His eldest daughter gets married this weekend and that is the only 1 he will see getting married The way he is deteriorating He won't see another year. 😥😥😥😥😥

    • @newsing33
      @newsing33 Před 2 lety

      God bless you both.

    • @dorisjohns8124
      @dorisjohns8124 Před rokem

      Yes, God bless you. With my grandson the professionals who diagnosed has been right there with profound support. This is so sad it appears your friend does not have that support. God has blessed your friend with you!

  • @eishiba3916
    @eishiba3916 Před 4 lety

    this is hereditary, so if everyone with it made a huge sacrifice in their lives and didnt have children eventually it would go away completely. thus insuring the lives of those yet to come.

    • @paudib8982
      @paudib8982 Před 3 lety

      Sorry Jason but you don't have a clue

    • @Eternalpride100
      @Eternalpride100 Před 2 lety

      Sadly, its not purely hereditary. Letting everyone with Huntington's Disease die off will not make it go away. Genetic conditions can be like that sometimes. Its rare, but it can develop by random chance and spread to children by the person who originally had the genetic malformation. Everyone has the Huntingtin gene, its a repeating sequence of genetic code (in this case CAGCAGCAGCAG...). The number of repeats is what will determine if it will develop into Huntington's Disease proper. I think it is below 28 or so is normal and will not manifest into the usual neurodegeneracy. Over 35 or so repeats will present the possibility that it could develop, but it is not guaranteed and can still be potentially spread to children. 40+ mean that it will develop. Beyond that, the number of repeats increasing will determine how soon it begins to manifest. 60+ repeats will results in Juvenile Huntington's disease, meaning that it will begin to manifest in your 20s or so. By the time your 40, you will likely have developed dementia and will need to be monitored constantly, similar to an Alzheimer's patient. By time most people start to develop enough symptoms for a proper diagnosis, usually 30-50, they will have likely already had kids and spread the gene to them. So if all people with Huntington's, the potential to develop it, or the potential to spread it all died right now, it would likely just come back in a few years or so.

    • @bothrealting2598
      @bothrealting2598 Před 8 měsíci

      I agree

    • @eishiba3916
      @eishiba3916 Před 8 měsíci

      @@paudib8982 you didn't even explain why

    • @scottishere
      @scottishere Před 7 měsíci

      @@eishiba3916its simple to look up. It can be genetically inherited or be caused by gene mutations in those with no prior family history.

  • @conniespiteri7623
    @conniespiteri7623 Před 4 lety

    Back when my mum was young as HD was on her side of the family..My sister’s and I never knew about this disease and the aunties never said anything..There motto was if you make it over 30ish your safe..An uncle from Canada came to visit his sister’s mum had already died he found us and he told us what disease we could inherit and that the testing is here in Australia that was 25 yrs ago I’m 65 it got my two sister’s which are now in a Nursing Home

  • @cloudrain3186
    @cloudrain3186 Před 4 lety

    The first cure according to Huntington`s disease was in 1973. It took 22 months. The proceeding is documented in the book “Orthomolecular Medicine For Everyone”, written by Abram Hoffer, MD, PhD, and Andrew W. Saul, PhD. Abram Hoffer was asked, if a treatment with a meagavitamin therapy might slow the rate of deterioration. He and his patient understood that there had to be no expectations of recovery on anyone´s part. Relating to the start of the treatment the Patient remained well at its end.

  • @mnnomad1870
    @mnnomad1870 Před 5 lety

    Best friend from the military has had it since 2002. Now in hospice/ palliative care. Sad...

  • @josephbyrd6642
    @josephbyrd6642 Před 5 lety

    would it be possible to repost this vid in a format supported by older viewers

  • @irenemadrid9258
    @irenemadrid9258 Před 5 lety

    Thank you immensely for this nicely made video.. Many of my family members are in denial of my father having these symptoms. Our local Neurologist diagnosed his physical symptoms with HD on a few occasions, and now we are waiting for the blood results to come in. It is good my father feels like his usual self at heart. However, I want documentation for the rest of the family to acknowledge that awareness and education is important. Not dusting these changes under the rug like it's not happening.

    • @Darkforestization
      @Darkforestization Před 4 lety

      Totally agreed, my wife has it 7 months ago she got the diagnosis. She is sadly half way through 6-7 years was very first signs. I thought it was depression. Had never heard of the disease. My wifes family was unaware as well.

    • @esterlitadasilva6980
      @esterlitadasilva6980 Před rokem

      @@Darkforestization lol on

    • @esterlitadasilva6980
      @esterlitadasilva6980 Před rokem

      @@Darkforestization i7u7

    • @Darkforestization
      @Darkforestization Před rokem

      @@esterlitadasilva6980 It's not a laughing matter.

  • @tramlinkshoptramlink8217

    Very helpful thank you

  • @pamsimonson5500
    @pamsimonson5500 Před 5 lety

    They say the only cure for HD is understanding...very different way understanding something as serious as this and no one else in my family has done any form of research on. Very extreme

  • @terribruynes1222
    @terribruynes1222 Před 5 lety

    Then, how come it only happens at certain times?

  • @user-zs2dw1cg7y
    @user-zs2dw1cg7y Před 6 lety

    my ex boyfriend has it but i dont understand why he is declining so fast . its been 3 years since he has syptoms he was diagnose this summer . Now i dont understand what he says

    • @marioreoyan3405
      @marioreoyan3405 Před 3 lety

      food intake maybe or existing medical condition. to speedy in his condition

    • @taleandclawrock2606
      @taleandclawrock2606 Před 3 lety

      Some people have a more severe and faster, earlier developing form, Huntingtons occurs due to too many copies of a specific gene, over 40, but some have higher numbers, it usually occurs younger and faster for those.

  • @HDYOFeed
    @HDYOFeed Před 6 lety

    Great job, Dr. Bonnie! Very informative and easy to understand!

  • @asifalitv0025
    @asifalitv0025 Před 6 lety

    My brothers age is 37 years he shows involuntarily motion of neck and shoulders hands please suggest me good treatment for it

    • @starrb460
      @starrb460 Před 6 lety

      ASIFaLI CHANaL asifali, my husband has HD. We have been dealing with it for many years! My husband also has the chorea (involuntary movements) from HD. As mentioned in the video there are medications (Haldol, thorazine, xenazine, risperidone for a few) that help with this but your family member needs to see a neurologist for proper care. I don't know how long you have been dealing with HD but if you are new to it and the problems it brings there is a Huntington's disease Society of America in New York who can provide you with information that may help. are you in United States?

    • @TexasViking_INFP-t_5w4
      @TexasViking_INFP-t_5w4 Před 5 lety

      Seek a doctor

    • @ashishjha7404
      @ashishjha7404 Před 4 lety

      My father is suffering from hd since 10yrs please help. Medicine are revocon, scerenace 5 mg, pacitane 2 mg, encorate crono 300.

    • @kunalmishra1989
      @kunalmishra1989 Před 3 lety

      @@ashishjha7404 my father is also suffering from hemichorea from 2 month. He is taking serenace 5 mg. But no improvement.

  • @josephbyrd6642
    @josephbyrd6642 Před 6 lety

    the format of this video is different than the others and I am unable to view

  • @josephbyrd6642
    @josephbyrd6642 Před 6 lety

    I hope I understood that allowing "unawareness" was not a problem in its self (just the consequences). I have made it my life to ensure my Wife is not made aware she has HD. There is a considerable back story and some very interesting incidents. Here is an excerpt from a letter I have given to the few medical personnel she has seen. "When speaking with Wife, please DO NOT use the word “Huntington’s”, “Chorea”, nor discuss HD with Her. Doing so will cause anxiety, which can result in MORBID depression. Her perception is “I do not have”. (refer to Anosognosia below) Discussing the symptoms, chronic pain and restlessness (impaired muscle control), is desired so that treatment in hopes of relieving them can be attempted." Unfortunaely there have been several Doctors that have tried to force telling her. Thank you for the videos...

  • @panayiotiskasapis3270

    that make me cry. my mother diagnose with that disease last week and i am shock that everything you say , its like i see her in front of me.which doctor shall i go to have that therapy please

  • @geeyoyo
    @geeyoyo Před 6 lety

    Thank you so much for these videos, it helps us to understand the disease

  • @geeyoyo
    @geeyoyo Před 6 lety

    This video makes a lot of sense, and would be a help for us all that are near this HD. My dad was not diagnosed for a long time, back then not many knew about this illness, it was fear of the unknown. I remember the volcanic episodes of rage that my dad went through all too well, I still have flashbacks and nightmares 50 years later... . It was like living with a Jekyl and Hyde. We loved him through it all

  • @punknhead23
    @punknhead23 Před 6 lety

    It is a tough decision to be made. This is a most devastating disease. I am contemplating...

  • @toddgilmore118
    @toddgilmore118 Před 7 lety

    wow, I became irritable when my father took his life last year and left my mother alone at 76 to fend for herself and my wife and I had decided to give up our lifestyle of happiness to live back in with my mom to support her as best we know how at 43 years old. Just after deciding to move all back to where we came from again with mom this time she took a terrible fall and broke her hip!! now she is in rehab for a month and while we are left to unpack the whole house she sold into a tiny apartment... she is recovering and I have to drive my wife and back to her job 20 minutes away each way and visit my mother a few times a week also. I do all the driving and my wife doesn't have a license! My mother is getting to old to drive, and won't be able to when she gets out of rehab anyways. The only good thing about all of this is that my mother has the money from the sale of the house and we needed to use that to get this apartment, and some furnishings and a newer car!

    • @HuntingtonStudyGroup
      @HuntingtonStudyGroup Před 7 lety

      Todd, We're so sorry to hear what a struggle this is for you right now. Would you consider participating in two surveys we're working on to gather input on quality of life and care issues? Here's a link that explains more: huntingtonstudygroup.org/blog/we-need-you/

    • @EVERTONFC.
      @EVERTONFC. Před 4 lety

      Mate I'm with you. It's a fu**ing nightmare. Keep it together bruv. X

    • @jojomiller1630
      @jojomiller1630 Před 3 lety

      WTH dude....are you affected with HD too? You sound like you are having an irritable rage regarding your life! Just breathe....take one thing at a time from moment to moment and eventually everything will work itself out!

  • @tiarrahopkins4682
    @tiarrahopkins4682 Před 7 lety

    my mother, aunt and uncle all have Huntington.

    • @oceannaperry7424
      @oceannaperry7424 Před rokem

      same here. im getting my results in a bout a week...my grandmothers 4 children all have it and only one is left.

    • @hudamohammed892
      @hudamohammed892 Před 10 měsíci

      @@oceannaperry7424i hope u ate negative

    • @oceannaperry7424
      @oceannaperry7424 Před 10 měsíci

      @@hudamohammed892 im positive cag repeat of 43

  • @pirateslife1679
    @pirateslife1679 Před 7 lety

    hi my uncle is suffering from chorea his age is around 48 year please there is any kind of treatment for curing them give me please