Huntington's disease as a family - Walters family

แชร์
ฝัง
  • เผยแพร่เมื่อ 2 มิ.ย. 2024
  • As part of HDYO's 'Talking about HD as a family' project, we interviewed the Walters family, who shared their experiences of talking about HD in their family. Thank you to Ellie, Flo, Meg and Ben for taking part.
    Four families bravely share their experiences of living with Juvenile Huntington's disease. We advise viewers to be aware that this topic may be upsetting, if you need support email us at support@hdyo.org'
    I'f you'd like to learn more about HD and JHD, please visit www.HDYO.org. If you'd like to help support young people, like these in the video, impacted by HD, please consider making a donation to HDYO here: en.hdyo.org/eve/about/587

ความคิดเห็น • 311

  • @danieldevito6380
    @danieldevito6380 3 ปีที่แล้ว +124

    Many of us with good health have no idea just how lucky we are

    • @esbliss
      @esbliss 2 ปีที่แล้ว

      For real!

    • @macstanley925
      @macstanley925 2 ปีที่แล้ว

      soo true

    • @ajcrum3689
      @ajcrum3689 2 ปีที่แล้ว +1

      i so agree we take our health for granted for sure .

    • @sandraadams4940
      @sandraadams4940 ปีที่แล้ว +1

      How blessed we are. Not luckey

    • @nadiakerris1863
      @nadiakerris1863 10 หลายเดือนก่อน

      C'est vrai.
      Mais ce n'est pas ma faute.

  • @1teamski
    @1teamski 5 ปีที่แล้ว +376

    Meg passed away in 2015. May she rest in peace and my thoughts are with the family. What a devastating disease.

    • @phillipdennis8911
      @phillipdennis8911 4 ปีที่แล้ว +4

      Team Ski Huey let me to telling you one thing before you know it. Huntington’s are biggest responsibility goes to spreading everywhere on this earth plus elso many kinds of diseases spreading too neither can cause people can’t stand even discomfort with it. I know how people feeling . Many kinds of diseases are unforgivable need to be destroyed for good then put em into hell be gone forever as will not coming back anymore for good. I know many kinds of diseases plus Huntington’s disease are so bitches.

    • @nolinfeller5591
      @nolinfeller5591 4 ปีที่แล้ว +21

      @@phillipdennis8911 Your comment makes no sense.

    • @Millbrook1974powderedwater
      @Millbrook1974powderedwater 3 ปีที่แล้ว +2

      @S Freeman His brain must really hurt.

    • @starrystarrynight9822
      @starrystarrynight9822 3 ปีที่แล้ว +22

      For Throngdorr Mighty, Nolin Feller and S. Freeman:
      Do any of you actually know Philip Dennis? Considering that this is a video about Huntington's Disease it's just possible that he has Huntington's disease and was trying his best to express an opinion. Huntington's causes slurred speech (as though a person is intoxicated). Maybe this man was using speech to text as a result of his inability to use his fingers correctly to type a message which would certainly explain the basically incomprehensible message. Having watched five of my husband's 6 siblings die with Huntington's as well as my husband, I am unfortunately very familiar with Huntington's.
      If you are not sure what I'm saying is backed or that it's accurate, consider this from the Huntington's Disease News website:
      "As the disease progresses, frontal regions of the brain may be damaged. This may interfere with speech organization, causing patients to appear to speak incoherently. The ability to process thoughts also may be affected."
      I hope the three of you will remove your messages which have no redeeming value whatsoever.

    • @Millbrook1974powderedwater
      @Millbrook1974powderedwater 3 ปีที่แล้ว +3

      @@starrystarrynight9822 There is nothing disrespectful towards HD or HD patients in my comment.

  • @jeanettedegiulio8220
    @jeanettedegiulio8220 5 ปีที่แล้ว +190

    My high school sweetheart, my first and forever love was taken from me with Huntingtons Desease. I am forever shattered. Sending my love to the famlies going through this horrific nightmare. Bless all of you. 😢

    • @monkiram
      @monkiram 3 ปีที่แล้ว +2

      I'm so sorry for your loss. Please ignore that first guy who commented, I don't know why anybody would respond "lol" to a comment like this.

    • @Neo2266.
      @Neo2266. 3 ปีที่แล้ว +1

      Be glad you had a highschool girlfriend

    • @wakeuppeople7327
      @wakeuppeople7327 2 ปีที่แล้ว +1

      I’m currently seeing a woman who I found out has this terrible disease She’s 3-4 yrs into it. Has Corea the jerky movements. I knew something was wrong mom told me she had it about 3 weeks in. Which gave me total understanding of what’s going on. People who stay and love them. I’m choking up. Breaks my heart. ESPECIALLY when it’s a death sentence 10-15yrs I was told.

  • @rubytuesdayfromlondontown9194
    @rubytuesdayfromlondontown9194 ปีที่แล้ว +6

    What a horrifically cruel disease. It must be utterly exhausting.

  • @kiari58343
    @kiari58343 4 ปีที่แล้ว +54

    My mother just passed away today, she has Huntington disease she was only 45, her mother lived to age 60 from it as well. I'm only 20 and my sister and I had taken care of her until she passed. I'm glad she isn't suffering anymore, she died from an infection from a bed sore. She had been sleeping alot, and died in her sleep. She was like our child, and we did our best to aid her and show her comfort and love she needed.

    • @HDYOFeed
      @HDYOFeed  4 ปีที่แล้ว +9

      Hi Sin 13, we are so sorry for your loss. If you or your sister need someone to talk to please get in touch. Our team is here to help. info@hdyo.org

    • @lorenaa.garcia3539
      @lorenaa.garcia3539 3 ปีที่แล้ว +3

      Did u checked if u have the disease?

    • @wakeuppeople7327
      @wakeuppeople7327 2 ปีที่แล้ว +5

      I’m afraid to ask questions. My girl friend has this. And I don’t want to leave her. She’s 4 yrs into it? We are seeing a big change. Talking and her walk. I don’t care. I’ll be there

    • @jacquelinegeorge5410
      @jacquelinegeorge5410 ปีที่แล้ว +1

      I'm so sorry for your loss it's a terrible disease.

    • @uroojhashmat8871
      @uroojhashmat8871 ปีที่แล้ว

      Huntington

  • @hannahstockford5936
    @hannahstockford5936 2 ปีที่แล้ว +22

    I have been diagnosed with HD and I've gotta be honest I'm absolutley terrified even though I'm not symptomatic yet. I have a 2 year old daughter and watching this is like looking into the future. My mum has or and is currently symptomatic. Sorry. I hate this disease. I hate it. My heart breaks over and over again. For my mum, myself but especially my daughter and husband who will have to watch me deteriorate

    • @HDYOFeed
      @HDYOFeed  2 ปีที่แล้ว +3

      If you want to talk just let us know. Matt@hdyo.org

    • @rustyspygoat4089
      @rustyspygoat4089 2 ปีที่แล้ว +3

      I am in the same situation. My mother has it. I have not been tested so I might have it. When I found out just over a year ago, I went through sever depression and anxiety. Body also started twitching and have not been able to sleep. I am convinced I have it too and so worried that I have passed it onto my 2 year old daughter as well..

    • @lavairanshackleford763
      @lavairanshackleford763 ปีที่แล้ว +1

      My mom has HD have not been tested yet, I have two older bros on younger sis, I have 1 year old baby girl and a 9 year old son that has been recently diagnosed with leukemia, I’m scared to I could have it, Bc I don’t want to be a burden on my family. My mom has gotten really bad she is in a nursing home now at age 57 with a feeding tube, pray to god everyday she gets better and praying for a cure for everyone dealing with HD or any other disease!

  • @jennymosca2178
    @jennymosca2178 6 ปีที่แล้ว +241

    I feel so badly about her constant movement..that has to be hard to deal with

    • @stacilucas4217
      @stacilucas4217 5 ปีที่แล้ว +65

      My brothers ex gf has it and the doctor said her moving like that, is like her running a marathon all day long.

    • @Albanez39
      @Albanez39 4 ปีที่แล้ว +23

      The physical side is nothing compared to the mental inabilities someone experiences because of Huntington's.

    • @gwenking7700
      @gwenking7700 3 ปีที่แล้ว +3

      I don't know how they treat the chorea-form movements now but when I was working as an RN we used large doses of Haldol Decanote IM. One of the sides effects of this old school antipsychotic was muscle stiffness. It helped slow the involuntary movements. This poor woman is living in a nightmare. If I remember correctly there is a 50-50 chance of passing this genetic disorder on to your children. Bad way to go. You eventually die of sepsis from bed sores or aspiration pneumonia. I think this is the exact disease Michael J. Fox has. He certainly doesn't have Parkinson's. The movements are too gross for PD

    • @tarafallon7678
      @tarafallon7678 3 ปีที่แล้ว +5

      It’s exhausting and hard on the joints, muscles, etc. bruises, scratches, etc.

    • @iminavegetativestatestudio1730
      @iminavegetativestatestudio1730 2 ปีที่แล้ว +12

      @@gwenking7700 he definitely had PD. if he had huntingtons, he would have been dead by now. either that, or he would be at a point where he is just flailing all over the place and unable to function at all.

  • @lamaboy2878
    @lamaboy2878 3 ปีที่แล้ว +25

    Such a calm man. Lots of respect. Really wish you all well

  • @Zen-ow8xf
    @Zen-ow8xf 3 ปีที่แล้ว +33

    In beginning i thought they are very thoughtful that they have someone for sign language so deaf people can understand. But then i understood the whole scene

    • @maidahaltrecht6577
      @maidahaltrecht6577 2 ปีที่แล้ว +6

      Me too. I thought she was deaf and also had HD but then I also realized her movements were sadly because of HD.

    • @Tina-kw2yn
      @Tina-kw2yn 2 ปีที่แล้ว +4

      It called correa HD. The involuntary movements

    • @coraldell3091
      @coraldell3091 2 หลายเดือนก่อน

      It's a very rare illness and the problem is a lot of people really don't understand it.

  • @marilynbarker8255
    @marilynbarker8255 5 ปีที่แล้ว +99

    What an amazing father!

  • @nicoleh.7614
    @nicoleh.7614 3 ปีที่แล้ว +18

    My father has HD, it’s really hard but it keeps me going seeing other people talk about it.

  • @ellioshiem7892
    @ellioshiem7892 5 ปีที่แล้ว +56

    Amazing dad and children.

    • @monkiram
      @monkiram 3 ปีที่แล้ว +5

      I'm sure mum's amazing too, we just weren't able to hear her speak much. I don't think it was an intentional omission.

  • @green8026
    @green8026 ปีที่แล้ว +8

    2 brave little girls, a brave mother and father. RIP Meg (based on Team Ski's comment)

  • @theresalacey6126
    @theresalacey6126 2 ปีที่แล้ว +5

    I lost an aunt and a cousin to this horrible disease. Seeing Meg twitching was exactly like my poor aunt. She and my cousin both died young. A blessing and a curse at the same time.

  • @pixie_the_rabbit6833
    @pixie_the_rabbit6833 4 ปีที่แล้ว +19

    I am so sad for both Meg and her family. Thank God that Ben is a loving, supportive husband and father. Sometimes spouses just can't handle watching their loved ones deteriorate and die. They just leave. Premarital genetic testing and counseling isn't required and not acceptable to many people, but it is something that I would probably choose, if I it had been available. CF runs in my extended family and there was no genetic testing back then. I am thankful that none of my kids have CF. .

  • @kenzie9200
    @kenzie9200 ปีที่แล้ว +3

    The first nursing home my sister worked in was one of few places where im from that would hold huntingtons patients and it is by far one of the saddest diseases anyone could have. My dad also had a very good friend that one day was a thriving women living a normal life and within a few years she went down hill and she died completely wheelchair bound and could no longer speak 😢

  • @33stevelinda
    @33stevelinda 4 ปีที่แล้ว +26

    iv been living with HD in my family since 1987 when my nan passed with it i also lost my mum my brother and my uncle to it and as i write this comment my nephew is in the middle stages of it . its a horrendous condition to live with for the HD sufferer and its not much better for the family who dont have it as effects everyone close to them . i have been tested and i dont have it myself but i ensured i was test before i started my family because if i had been diagnosed with HD and there was a 50/50 chance of me passing it on id have never started a family.

    • @elisaruy5372
      @elisaruy5372 3 ปีที่แล้ว +1

      :(( sorry for your losses

    • @nancywalker-keay8361
      @nancywalker-keay8361 3 ปีที่แล้ว +1

      That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

    • @nancywalker-keay8361
      @nancywalker-keay8361 3 ปีที่แล้ว +1

      4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

    • @FinbarFUT
      @FinbarFUT 3 ปีที่แล้ว +4

      @@nancywalker-keay8361 you truly are a disgusting human being spreading fake rumours, you are truly horrible

  • @marielagalache
    @marielagalache 11 ปีที่แล้ว +61

    Thank you Ellie, Flo, Meg and Ben, from another HD family in Argentina, best regards.

  • @3Blankie
    @3Blankie 11 ปีที่แล้ว +7

    Thanks for sharing.

  • @kingsleykarikari5312
    @kingsleykarikari5312 7 ปีที่แล้ว +34

    Thank you so much for sharing. God bless you!

  • @angelicalorenapulidoalvare2170
    @angelicalorenapulidoalvare2170 3 ปีที่แล้ว +6

    My heart is with this family. God bless them.

  • @kayleighbloomfield42
    @kayleighbloomfield42 5 ปีที่แล้ว +82

    My mum and brother have HD and I’m of course at risk. This is so heartbreaking especially since her children are so young. My heart is breaking.

    • @serinesirene30
      @serinesirene30 4 ปีที่แล้ว +1

      Please tell me how it's began with your brother i mean the first signs?

    • @elisaruy5372
      @elisaruy5372 3 ปีที่แล้ว

      Hope you’re okay!

    • @justflufflez7582
      @justflufflez7582 3 ปีที่แล้ว +4

      @@serinesirene30 my father has it. I'm terrified

    • @gracehaward5330
      @gracehaward5330 3 ปีที่แล้ว

      That's so sad to hear you are still suffering from this same disease. Am feeling for you right now, I know of a doctor who can help you get rid of this. He also help me from this same disease, He can also help cure yours permanently

    • @justflufflez7582
      @justflufflez7582 3 ปีที่แล้ว +10

      @@gracehaward5330 I really hope you're not just messing with these people.

  • @mumr4268
    @mumr4268 3 ปีที่แล้ว +6

    Thank you for caring and sharing as a family!🙋‍♀️🙏💗

  • @fundacionveronicaruiza.c.952
    @fundacionveronicaruiza.c.952 5 ปีที่แล้ว +1

    Thanks for share

  • @swatichauhan7912
    @swatichauhan7912 3 ปีที่แล้ว +2

    Love to the family who is together love you sir and mam and to both your daughters.

  • @mechellewinslow65
    @mechellewinslow65 3 ปีที่แล้ว +4

    God bless your family.

  • @jeweljellyjolly
    @jeweljellyjolly 9 ปีที่แล้ว +29

    God bless the family

  • @minniegibson8722
    @minniegibson8722 ปีที่แล้ว

    Thank you.

  • @chasistylegree1725
    @chasistylegree1725 5 ปีที่แล้ว +15

    Awareness is key here! I salute mom and her awesome family! #teamsupport #findacure

  • @regragi1
    @regragi1 2 ปีที่แล้ว

    God bless your family

  • @mercytingzou949
    @mercytingzou949 3 ปีที่แล้ว +6

    May God look after this family

    • @MyCold1
      @MyCold1 5 หลายเดือนก่อน

      He hasn't done so far after allowing this illness

  • @nickcassino2542
    @nickcassino2542 3 ปีที่แล้ว +13

    My father has HD it’s not something that is easy to deal with. He just came down with a stroke which increased his HD symptoms ten fold. It’s a rough disease that I hope can be cured one day! RIP Meg. As for the girls I know your mom is looking out for them in heaven

    • @PrincessKurae
      @PrincessKurae 2 ปีที่แล้ว +1

      Have you been tested for the gene?

    • @nickcassino2542
      @nickcassino2542 2 ปีที่แล้ว +5

      @@PrincessKurae You know it’s crazy actually, awhile after I made this post my family told me he’s biologically not my father. They decided they wanted a sperm donor so I couldn’t inherit the disease. It’s beautiful and painful thing to know. Yes I’m grateful for now knowing my future kids won’t have it. But 19 years of thinking my dad was biologically my dad, was a painful bit of knowledge to chew. Getting better with therapy, but it’s not information I hand out to my friends, girl of interest, etc, it’s tough. Not only for the people with the disease but the direct family as well.

    • @PrincessKurae
      @PrincessKurae 2 ปีที่แล้ว +3

      @@nickcassino2542 Sometimes bad news are good news.

    • @Bringon-dw8dx
      @Bringon-dw8dx 2 ปีที่แล้ว +8

      @@nickcassino2542 sounds like your father loved you so much he would sacrifice having blood children to make sure his children were safe and wouldn’t have to suffer.
      That’s true parental love

    • @camez2345
      @camez2345 2 ปีที่แล้ว +3

      @@Bringon-dw8dx What a lovely comment.

  • @rodrigorodrigo7289
    @rodrigorodrigo7289 ปีที่แล้ว

    A strong lady..😢

  • @jarkadolejsi3349
    @jarkadolejsi3349 3 ปีที่แล้ว +4

    To musí být pro toho pacienta vážně strašný pocit!Když mu jeho vlastní tělo nutí dělat pohyby o které vůbec nestojí!Vůbec si nedovedu představit kdybych tím trpěla já!Je to opravdu moc a moc smutný!

  • @nikolettwinterrider2223
    @nikolettwinterrider2223 4 ปีที่แล้ว +19

    My father has the same disease... i know how it feels, poor kids... let`s hope they don`t get it in their genes...

  • @lostecho01
    @lostecho01 6 หลายเดือนก่อน +1

    I'm only 22 years old and I have the same symptoms as her

  • @LectronCircuits
    @LectronCircuits 2 ปีที่แล้ว +6

    Nine years on, how are the kids getting on? Per chance they were doomed as well. Audience wishes them all the best. Cheers!

  • @oceannaperry7424
    @oceannaperry7424 3 ปีที่แล้ว +2

    my family has dealt with HD for years....it hit all my grandmothers kids all 4 of them and now their children might have this cruel disease...

  • @jorjaygonzalez
    @jorjaygonzalez 5 ปีที่แล้ว +40

    Those little girls are so damn cute

  • @eileensteele2497
    @eileensteele2497 2 ปีที่แล้ว

    There is lots of hope out there

  • @sonika8u
    @sonika8u 2 ปีที่แล้ว +1

    God bless you. May you heal.

  • @hogsworthhammer9211
    @hogsworthhammer9211 5 ปีที่แล้ว +30

    Nearly six years on, we can only wonder what level of deterioration she has attained.

    • @ssimms8995
      @ssimms8995 5 ปีที่แล้ว +15

      Hogsworth Hammer an earlier comment said she died in 2015

    • @finleygray417
      @finleygray417 3 ปีที่แล้ว +1

      she passed away. :(

  • @ademkymk2817
    @ademkymk2817 2 ปีที่แล้ว

    Thank for sport , thank you for nice man thank for a great person thank you for nice father thank you thank you l was so happy to see you nice people for sport do nice think god be with you

  • @marydobney6040
    @marydobney6040 4 ปีที่แล้ว +1

    I am sorry for you and children about
    your wife/mother have this diseases.
    It must be hard ... I hope there a cure .

    • @ant3790
      @ant3790 3 ปีที่แล้ว +1

      Unfortunatly there isnt one. There is something that slows it down but thats about it. But I know they are close to finding a cure and I really hope it gets here fast

  • @flexohouse4061
    @flexohouse4061 11 ปีที่แล้ว +7

    may you recover soon
    GOD BLESS YOU

    • @starrystarrynight9822
      @starrystarrynight9822 6 ปีที่แล้ว +17

      Flexo House people don't recover from Huntington's disease unfortunately.

    • @brera2434
      @brera2434 4 ปีที่แล้ว +1

      Huntington'sno is terminal. You have the gene, you will die from it. No cure, no real medications either.

    • @JosephKitchens99
      @JosephKitchens99 4 ปีที่แล้ว

      @@brera2434 That's not exactly true. If I had HD, I guarantee I would not die from HD. I'm a coward. I would go out on my own terms long before I got to her shape. From what I understand, dying from a heroin overdose is the best way to go if you go out on your own terms. People who have ODed and are brought back from the brink of death have said it's just like being so tired that you drift off to sleep but you never wake up.

  • @elapaszczynski495
    @elapaszczynski495 4 หลายเดือนก่อน

    Is there any surgery to stop shakes at least? Good bless the whole family !

  • @user-ui8sp5th4g
    @user-ui8sp5th4g 3 ปีที่แล้ว +5

    Terrible disease, cannot phantom seeing it let alone watching your mother die from it. Poor babies, what a strong man. Hope that the daughters don’t have it.

  • @debwoods3831
    @debwoods3831 2 ปีที่แล้ว +2

    Not everyone with HD has the chorea movements as bad as this. My husband has HD and only had mild chorea years ago.. It’s a very sad disease.

    • @aarizaleenachannel9302
      @aarizaleenachannel9302 2 ปีที่แล้ว

      How is your Husband? Hope he is doing well

    • @debwoods3831
      @debwoods3831 2 ปีที่แล้ว +4

      He’s actually progressing. He’s so weak and mostly sleeps because that’s what they do in this stage. Thank you for asking.

  • @vaw796
    @vaw796 5 ปีที่แล้ว +46

    HD is a bastard and the deterioration of a loved on is hard to see. My mum has it, her sister was the first to be diagnosed and it was from their dad. I'm going to be tested and glad I never wanted kids so if I inherited it I won't pass it on. These girls are amazing dealing with hd from a young age. I hope they don't inherit such a terrible illness.

    • @phillipdennis8911
      @phillipdennis8911 4 ปีที่แล้ว +2

      Vi Storm I agree with you expect seizures, Huntington’s disease, cancers, many kinds of diseases are biggest responsibility will need to be distroying then be gone forever. Yeah many kinds of diseases are unforgiving plus bitches and bastardized.

    • @richardhands904
      @richardhands904 4 ปีที่แล้ว +4

      @@phillipdennis8911 You can get IVF to stop the disease in your children, just an FYI. Be strong though.

    • @Markzuckisacuck
      @Markzuckisacuck 3 ปีที่แล้ว

      Did you get your results!? I hope you are doing well 😥💜🙏

  • @dr.sammypryor
    @dr.sammypryor 4 ปีที่แล้ว +3

    I hope I can meet you two girls and help you out.

  • @plreuokjhg
    @plreuokjhg 3 ปีที่แล้ว +1

    Brave man

    • @alisonwilloughby5926
      @alisonwilloughby5926 3 ปีที่แล้ว +2

      Braver woman & little girls

    • @FinbarFUT
      @FinbarFUT 3 ปีที่แล้ว +2

      @@alisonwilloughby5926 always gotta be a feminist and put the focus on women on a truly sad video

    • @Bringon-dw8dx
      @Bringon-dw8dx 2 ปีที่แล้ว

      Brave man?
      Was he supposed to just leave his wife and children?!

    • @camez2345
      @camez2345 2 ปีที่แล้ว

      @@FinbarFUT I don't think it was about that. It's that the dad for sure is in the clear, but the mom has has the disease for sure and the girls are watching their mom have it and might have it themselves, so in this case, yes, the female people in this situation have more to be afraid about. Truthfully, though, no one has a better situation than another in this. They all have to be brave for different reasons.
      I mean -- yours was an uncalled for comment anyway, but also you're probably wrong.

  • @scootergreen3
    @scootergreen3 2 ปีที่แล้ว +1

    My cousin has it and some of my other cousins.

  • @jarkadolejsi3349
    @jarkadolejsi3349 4 ปีที่แล้ว +1

    No to musí být HROZNÝ pocit když člověk vůbec nemůže ovládat svoje tělo a dělá věci které by normálně vůbec nedělal!To je pak opravdu velice těžké né jen pro toho samotného pacienta ALE i pro jeho nebo její rodinu!Rozhodně těmto lidem není co závidět!

  • @chadwick283
    @chadwick283 2 ปีที่แล้ว

    🙏🙏🙏

  • @salvadorhirth1641
    @salvadorhirth1641 4 ปีที่แล้ว +3

    Thinking a bit further, since the conclusion in the article that I read was that the production of the STOP codon caused no disease when it was expected, it is then possible that actively enhancing the action of methyltransferase and the deamination of cytosine residues in CAG triplets to induce the formation of STOP codons, could then arrest protein synthesis; the article suggests that the disease happens when the polyglutamine protein is assembled; the good thing then, is that a drug acting at the level of translation, in the cytoplam, or even an increase in the expression of specific methyltransferase enzymes by means of peptide vectors, could control Huntington's disease. Time to learn more about polyglutamine proteins.

  • @user-le8oe7qv1t
    @user-le8oe7qv1t 3 ปีที่แล้ว +7

    لاحول ولا قوة الا بالله اللهم شافي جميع المرضى 🤲😔

  • @catenystrom6506
    @catenystrom6506 3 ปีที่แล้ว +10

    I hope the girls are negative

    • @1houndgal
      @1houndgal ปีที่แล้ว

      Sadly, the odds are at least one ofbthe girls has it. 50% chance for each girl of getting it. It is a crap shoot

  • @shelbymcclure8572
    @shelbymcclure8572 4 ปีที่แล้ว +7

    My mother has this disease. My grandpa had it and so did my grandpa's brother and their mother. It runs in the family, so there's a chance me and my siblings could have it too. The people in my family never jerked or moved as harsh as this lovely woman was, but they couldn't stay still. My mom is the only one alive right now from it, my grandpa and his brother died from it and so did their mother. I'm a little bit jealous of how well off this woman looks compared to my mom. My mom can't hardly walk, her speech is so slow, slurred and hardly understandable and she lays around all day because she literally can't do anything. She is very depressed and always wants to kill herself. I mean, I know nothing about this woman outside of this video but she looks way more well off than my mom, grandpa and my grandpa's brother. I just wish my mom could be more like this woman health wise. I miss her and the way she use to be. This is a very devastating disease and it really takes a lot out of you to watch people suffer from it. I'm hoping I don't have it.

    • @BobJoe-rk8xc
      @BobJoe-rk8xc 3 ปีที่แล้ว +1

      You are very very strong. I pray that you don’t have it. I’m genuinely wishing you and your family the best.

    • @justflufflez7582
      @justflufflez7582 3 ปีที่แล้ว +1

      @@BobJoe-rk8xc my father and grandmother have had it. I too am very scared of having the gene.. Its hard enough to watch

    • @nancywalker-keay8361
      @nancywalker-keay8361 3 ปีที่แล้ว

      4 years ago I was diagnosed of HUNTINGTON DISEASE and I have tried all I can to get cured but all to no avail, until i saw a post in a health forum about a herbalist man who prepare herbal medication to cure all kind of diseases including HUNTINGTON DISEASE , at first i doubted if it was real but decided to give it a try, when i contact this herbalist via his email and he prepared an HUNTINGTON DISEASE herbal cure and sent it to me via UPS delivery company service,when i received this herbal cure, he gave me step by directions on how to apply it, when i applied it as instructed, i was totally cured of this deadly disease within 1 months of usage, I am now free from HUNTINGTON DISEASE ,all thanks to Dr Joshua Ighalo. you can also reach this great herbal doctor for help . He can help get rid of yours permanently.. Also specialize in treating all kinds of illness, HERPES VIRUS, HEPATITIS B, CANCER, BRAIN DISEASE, INFERTILITY, DIABETES AND MORE. ....

  • @robertovaleri1175
    @robertovaleri1175 3 ปีที่แล้ว

  • @Yasemin_Sky
    @Yasemin_Sky 6 ปีที่แล้ว +4

    What age do people generally get affected by this? Like is there a certain age where it really manifests ?

    • @clouisloverwife5800
      @clouisloverwife5800 6 ปีที่แล้ว +1

      J Sky I saw a guy walking twitching and shaking I thought he was on drugs now I think he has this

    • @the0thermother
      @the0thermother 6 ปีที่แล้ว +4

      Average age of onset is 35 to 50. It is possible to get it in childhood (Juvenile Huntington's) or even in the later years, but that is less common.

    • @nyancatismyonlyfrand
      @nyancatismyonlyfrand 5 ปีที่แล้ว +4

      On average people start showing symptoms 30-50. Unfortunately, children have a 50% chance of getting HD if a parent has it. The more HD passes down a family line, the sooner symptoms will show

    • @kimbardgett6666
      @kimbardgett6666 5 ปีที่แล้ว +2

      A neuro specialist says any age from two to ninety

    • @reddragon9239
      @reddragon9239 4 ปีที่แล้ว +1

      30 probably to 40 my dad actually has it and two of my sisters have it as well I rather not know so I'm not gonna bother

  • @OMalley1203
    @OMalley1203 ปีที่แล้ว +2

    Restless legs make me want to die. I don’t understand how people deal with the constant movement.

  • @Saakkyybb
    @Saakkyybb 3 ปีที่แล้ว +3

    HD is cruel, its a shock just what a problem in the CNS can do to a person. 😞

  • @dalesansom3780
    @dalesansom3780 ปีที่แล้ว +1

    So very sad. It’s in my line from my fathers side. I’m 77 now so I’m over the typical age that it shows up. I’m grateful that I haven’t got it and grateful to find out it doesn’t skip a generation. May The Lord bless those that have it and their caregivers. Pray for a cure.🥲💝💕

  • @salvadorhirth1641
    @salvadorhirth1641 4 ปีที่แล้ว

    I'm still reading tenaciously about HD. I read about one hour ago the beginning of another article about HD and a stop codon was detected during an experiment but then surprisingly for me, the disease didn't progress, so my theory must be wrong! It's in the 15th line under the title Huntington's Disease: Evidence of a Proteopathy, the text says: "...However, an unplanned stop codon caused the HTT transcript to produce no protein. The animal showed no evidence of a disease-related phenotype, suggesting that a CAG expansion at the DNA or mRNA level was insufficient to produce neurodegeneration." Here it is the full article:
    @t

    • @zahraa964
      @zahraa964 4 ปีที่แล้ว

      Can you please post the link to the article?

    • @salvadorhirth1641
      @salvadorhirth1641 4 ปีที่แล้ว

      @@zahraa964 Here it is: www.ncbi.nlm.nih.gov/pmc/articles/PMC3098678/

    • @salvadorhirth1641
      @salvadorhirth1641 4 ปีที่แล้ว

      @@zahraa964 I also sent an E-mail for one of the authors of another article, asking for opinion about my theory that the cause should be the inadvertent formation of a STOP codon somewhere amid the CGA triplet repeats. Here is the article: www.ncbi.nlm.nih.gov/pmc/articles/PMC4981892/

    • @salvadorhirth1641
      @salvadorhirth1641 4 ปีที่แล้ว

      @@zahraa964 If you want to study the genetic code table and compare the codons, here you are: www.researchgate.net/figure/DNA-genetic-code-ATG-Start-code_fig1_263153905 , you will see that one of the three possible stop codons, TAG, is directly above CAG; if one considers that the transformation of Cytosine into Thymine is an already studied fact, then it seems to me that this should explain how truncated, abnormal proteins are produced: an inadvertent " order " to stop the synthesis of Huntingtin protein. I am not sure yet; this is what I could think of after trying to understand it. I know that the existing drugs ( DNA methyltransferase (DNMT) inhibitors azacytidine and decitabine) cause side effects, but it could give Huntington's disease patients a chance to hopefully delay the onset.

  • @JonathanHernandez-mm3nd
    @JonathanHernandez-mm3nd ปีที่แล้ว +1

    Rest In Peace Meg and may god be with all those with Huntington’s Disease.

  • @alpanapandey584
    @alpanapandey584 2 ปีที่แล้ว +1

    Plz god have mercy on them

  • @bonnieyoung4037
    @bonnieyoung4037 5 ปีที่แล้ว +5

    September 2018 update?

    • @angelamartin2811
      @angelamartin2811 5 ปีที่แล้ว +3

      Bonnie Young she passed away in 2015 so sad

  • @user-bx6xl1pu8m
    @user-bx6xl1pu8m 2 ปีที่แล้ว

    مرض ابوي الله يشافيه💔

    • @hudamohammed892
      @hudamohammed892 10 หลายเดือนก่อน

      لازم تفحص عن المرض

  • @starlily3357
    @starlily3357 6 ปีที่แล้ว +15

    My Aunt died of HD and all of the children died. It is horrible to watch.

    • @albionhustler9836
      @albionhustler9836 6 ปีที่แล้ว +2

      Testing probably wasn't around when they were coming up.

    • @SarahEA1
      @SarahEA1 5 ปีที่แล้ว +2

      And probably didnt know she had it till it was too late.

    • @samantha-pq9pl
      @samantha-pq9pl 5 ปีที่แล้ว +1

      It’s terrible. My mom has it and I’m just watching her die, and just waiting to get tested

    • @dMinaj11
      @dMinaj11 5 ปีที่แล้ว

      Samantha Coutu same here, I’m too scared to get tested

    • @mazharahmad3331
      @mazharahmad3331 4 ปีที่แล้ว

      My aunt aunty and uncles are diad plzzzzz any one treatments do you have .we live in Pakistan and our hol family invalid in this diseases

  • @genzo387
    @genzo387 2 ปีที่แล้ว

    Is she using song language? Or it's part of the disease?

    • @TheMarkmcr
      @TheMarkmcr 2 ปีที่แล้ว +1

      She was in the late stages of the disease

  • @salvadorhirth1641
    @salvadorhirth1641 4 ปีที่แล้ว +1

    Consider talking to doctors about the possibility of him or her, prescribing Decitabine. The rationelle is that the formation of STOP codons due to the inadvertent methylation of cytosines in CAG triplets, is the probable mechanism behind the disease, ( TAG is one of the three possible STOP codons; and they could be formed after the inadvertent methylation of cytosines, followed by spontaneous deamination of that same nitrogenous base ) thus, inhibitors of the enzyme methyltransferase, like Decitabine, may retard and hopefully even halt the progression of Huntington's disease.

  • @RoSa-ou8ww
    @RoSa-ou8ww 2 ปีที่แล้ว

    😢😢😢😢😢

  • @DudeWhoLikesCock
    @DudeWhoLikesCock 4 ปีที่แล้ว +4

    This is probably the worst disease ever, I would rather have cancer, i hope they find a cure

  • @Usercantwelve
    @Usercantwelve 7 หลายเดือนก่อน

    Be Blessed Be grateful you're kids are healthy.
    I've seen the worst birth defects possible.
    Along with devasting burns.
    Hard to unsee but it was my choice to be there.
    I wore tight uniforms the Vetrans loved it 😉

  • @quagmire4469
    @quagmire4469 4 ปีที่แล้ว +1

    Walters family 😳Breaking Bad

    • @JosephKitchens99
      @JosephKitchens99 4 ปีที่แล้ว

      Walter White said in Breaking Bad that his mother died from HD.

    • @tarafallon7678
      @tarafallon7678 3 ปีที่แล้ว +1

      Walter White’s son had Cerebral Palsy.

  • @hulyakaya3379
    @hulyakaya3379 4 ปีที่แล้ว +3

    Çok üzülüyorum tedavi si yok

  • @julianojek2521
    @julianojek2521 3 ปีที่แล้ว

    Jesteś piękna kobieta i zdolna myślę że pomogą Ci lekarze pa kochana miłego dnia życzę. 😘

  • @desertbreeze69
    @desertbreeze69 3 ปีที่แล้ว +2

    The questions are rather repetitive.

  • @tiffanytomblingson8334
    @tiffanytomblingson8334 2 ปีที่แล้ว

    I am suffering from this horrible disease my father and my uncle and my grandfather died from it

    • @TheMarkmcr
      @TheMarkmcr 2 ปีที่แล้ว

      What is your experience?

  • @janemike3490
    @janemike3490 2 ปีที่แล้ว

    I recommend Dr Oje Abacha on his TH-cam channel for getting rid of my Huntington disease.

  • @jennymosca2178
    @jennymosca2178 6 ปีที่แล้ว +7

    Britain seems affected more them U.S..interesting..no matter what..its so sad..

    • @bellatorresbruh7900
      @bellatorresbruh7900 6 ปีที่แล้ว +8

      Jenny Mosca people of European descent are 70-100 times more likely to carry the gene than anybody else

    • @samantha-pq9pl
      @samantha-pq9pl 5 ปีที่แล้ว

      Runs in my family, my mom has it. And like BellaTorresBruh said we come from distant European descent

    • @brera2434
      @brera2434 4 ปีที่แล้ว +1

      @@bellatorresbruh7900 source?

    • @rdgloveshouse
      @rdgloveshouse 4 ปีที่แล้ว

      Well Britain is a small island so gene pool is smaller possibly

  • @Hvghyg6
    @Hvghyg6 2 ปีที่แล้ว +1

    Dose The kids got a genetic test??

  • @Sheila612Miller
    @Sheila612Miller 2 ปีที่แล้ว +2

    People that have this horrible thing or think they could are so selfish by having kids.

  • @EcargDeshawn
    @EcargDeshawn 2 ปีที่แล้ว +5

    there is no god
    and if there is he is incredibly cruel

  • @janemike3490
    @janemike3490 2 ปีที่แล้ว

    #drojeabacha best herbs 🌿

  • @charlottestallion7513
    @charlottestallion7513 2 ปีที่แล้ว

    #Drisibor Alternative Herbs

  • @mrmoogals3170
    @mrmoogals3170 3 หลายเดือนก่อน +1

    Why do they' have children knowing its generational. Also do the girls have it .

  • @omega36001
    @omega36001 3 ปีที่แล้ว

    WWJD?

  • @oceannaperry7424
    @oceannaperry7424 3 ปีที่แล้ว

    we all have a 50% chance

  • @niseyedwards2650
    @niseyedwards2650 6 ปีที่แล้ว +39

    There has got to be some kind of medicine to suppress all that movement. I am sick of the medical community that does nothing for these poor people.

    • @jennymosca2178
      @jennymosca2178 6 ปีที่แล้ว +14

      Nisey Edwards I swear my comment was about her constant movement..your right..who cares about addiction to drugs at this point..muscle relaxers..valium..something to calm that affect..I would be in so much distress over that movement..few people said anything about that..glad u recognized not just the disease..but her poor body in constant motion

    • @sthefanymonestime7523
      @sthefanymonestime7523 6 ปีที่แล้ว +16

      Nisey Edwards they're trying

    • @hogsworthhammer9211
      @hogsworthhammer9211 5 ปีที่แล้ว +8

      Merely mitigating symptoms won't stop brain from becoming basically shot to Hell.

    • @HungGarEarthBender
      @HungGarEarthBender 5 ปีที่แล้ว +3

      @@edwardschlosser1 So are you saying that cannabis Oil is preventing the neurons in the striatum from degenerating? Is it acting locally on the caudate nucleus or are you thinking that the oil is having an effect on chromosome 4?

    • @jengildz9104
      @jengildz9104 5 ปีที่แล้ว

      Agree, agree. She most be tired

  • @Paige-Turnner
    @Paige-Turnner 3 ปีที่แล้ว

    So heartbreaking. That must be exhausting. Is sleep even possible?

    • @FinbarFUT
      @FinbarFUT 3 ปีที่แล้ว

      Obvisouly? Otherwise they would all be dead ?

    • @Paige-Turnner
      @Paige-Turnner 3 ปีที่แล้ว +5

      @@FinbarFUT it's an honest question coming from someone who doesn't experience it who wants to understand. It can't be a very restful sleep I would suppose.

    • @ant3790
      @ant3790 3 ปีที่แล้ว +1

      My mother had this and she would sleep half of the day, but I dont know alot because she put me in a foster family when I was born

    • @begood4786
      @begood4786 3 ปีที่แล้ว +2

      @@FinbarFUT Why answer so rude?

    • @aishwaryasudan1290
      @aishwaryasudan1290 2 ปีที่แล้ว +2

      Yes. All the symptoms decrease relatively during sleep. But the drugs that are taken for it may reduce the quality of sleep . But sleep is often an escape. I hope we find a cure.

  • @jazzip
    @jazzip 3 ปีที่แล้ว +1

    I wonder if this is the result of inbreeding decades ago due to smaller gene pools.

    • @manxie1897
      @manxie1897 3 ปีที่แล้ว +3

      It's due to a genetic mutation

  • @benjamindykerman6576
    @benjamindykerman6576 3 ปีที่แล้ว +1

    Who was your family hunting dude lol

  • @gunterliam7411
    @gunterliam7411 2 ปีที่แล้ว

    All thanks to dr Stanley who cured me from my Huntington’s disease I am forever grateful

  • @jennifervan75
    @jennifervan75 2 ปีที่แล้ว

    Selfish "parents"
    If you know you have a horrible disability that's genetic you don't have biological children, that's just common sense.
    They could've adopted.

    • @neptune3735
      @neptune3735 2 ปีที่แล้ว +1

      I always told myself to adopt since my dad has HD. Never want to put someone else in this situation it’s heartbreaking

    • @jennifervan75
      @jennifervan75 2 ปีที่แล้ว

      @@neptune3735 Good on you man.
      I bet you're gonna be a great father/mother for your future adopted child/children.\ ^3^/

    • @rdgloveshouse
      @rdgloveshouse ปีที่แล้ว +1

      They didn't know...

    • @jennifervan75
      @jennifervan75 ปีที่แล้ว

      @@rdgloveshouse they have more than 1

    • @kayas1fangirl837
      @kayas1fangirl837 ปีที่แล้ว

      @jennifervan75 While I agree that people with HD should not have children (biological or adopted), this couple did not know she had it (or even what it was) until years AFTER they had their children. Please watch the full video before making snide comments about a woman who was suffering (and eventually passed away). Her children may read the comments of this video one day.

  • @XrandommonX
    @XrandommonX 4 ปีที่แล้ว +4

    What a great father helping to spread these genes and giving these girls the same horrible fate.

    • @brera2434
      @brera2434 4 ปีที่แล้ว +18

      If you had listened, you would know that they didn't know that the mother's father had Huntington'sno when he passed and they already had the children when the mum was diagnosed.

    • @stewartbeddoe8617
      @stewartbeddoe8617 4 ปีที่แล้ว +11

      Meg's father passed away from cancer and probably hadn't been diagnosed with Huntington's before his death.

  • @heidimurphy4463
    @heidimurphy4463 3 ปีที่แล้ว +1

    Fear mongers

  • @RemyRAD
    @RemyRAD 10 หลายเดือนก่อน +1

    Even the audio in this video had Huntington's disease. As it had uncontrolled, voluminous excursions. And about blew me off my chair. Thank you for those uncontrolled volume excursions. I know you couldn't help it. You didn't know what software was? And is a method of fixing the sound after it was recorded badly. As demonstrated here. Recorded badly. And nobody knowledgeable enough to fix it.
    Bully bully, there you go! Now you know how to fix it after the fact. Using free software! That you did not bother to use. As is evident, here. Or, as in evident, hear. In fact both ways. Isn't that amazing? That's English for you! Now you understand both English's. Because English is as English does. And both of those.
    We can have an intellectual standoff here. But I'd rather take the bus. To, Cucamonga!
    RemyRAD