Huntington's Disease

Posted by SISTERLOVE @sisterlove, Oct 18, 2011

My brother is 68yrs. old suffereing with Huntington Disease. Can barely walk and has lost about 50 lbs, in the last few years. He resides in a nursing home for his care. Anyone experiencing or a loved one with this horrible illness? Also have checked our family tree and no one had this. It is a inherited disease, and yet I can not find anyone in the family that had it. Frustrating & Hearbreaking.

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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@davidwhitehurstbrown

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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Hi…I was away on vacation and just returned to see all the daily digests from Mayo Clinic. I was surprised because I wrote back in 2011 for help & support for my brother who had Huntington’s Disease. Sadly, he passed away April 10, 2015. I am still very much interested in chatting with anyone who has this dreadful illness. Thank You… Sisterlove

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@davidwhitehurstbrown

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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Hi. I have returned to this sight and although my beloved brother passed away 4/10/15, I am still searching for answers to how he inherited this disease. Surely he was not adopted, and yes a few relatives died before the age of 50 with other illnesses, but who could have carried the Huntingtons gene and it just had not been obvious. Any new information on this disease since May of 2016? Also, if anyone is caring for someone with HD or has it themself, I would love to hear from you. I am still grieving and never got to speak with anyone who has or had this disease. Thanks….sisterlove

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@sisterlove

Please accept my condolences on the death of your brother. I appreciate the way you are honoring his memory by searching for answers to how he came to get this disease. I found this article about HD from the Mayo Clinic website, http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431. You might also find some articles about this by searching, googlescholar. The articles on googlescholar are not as easy to understand, however, as the Mayo Clinic article.

I have a feeling that you would be a good support for others who are dealing with family members who have HD. I did find a listing of support groups for this disease at this website, http://hdsa.org/about-hdsa/support-groups/ Have you considered attending a support group?

Teresa

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@hopeful33250

@sisterlove

Please accept my condolences on the death of your brother. I appreciate the way you are honoring his memory by searching for answers to how he came to get this disease. I found this article about HD from the Mayo Clinic website, http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431. You might also find some articles about this by searching, googlescholar. The articles on googlescholar are not as easy to understand, however, as the Mayo Clinic article.

I have a feeling that you would be a good support for others who are dealing with family members who have HD. I did find a listing of support groups for this disease at this website, http://hdsa.org/about-hdsa/support-groups/ Have you considered attending a support group?

Teresa

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Hi Teresa, Thank You for your kind words. I will check the web sites that you suggested. I am still very heartbroken, lost and angry at the horrible end stage of my brothers life. I was a devoted sister and his only advocate and spent countless hours with him every day. His illness began 18 yrs before he passed, so it has been a long and sad journey. I did post a few cries for “help” on the mayo web site, when he was alive, but didn’t get any responses. It would have helped greatly to have been able to talk with someone, with this disease, or a caregiver. I surely would be more than happy to offer any help or my experiences with dealing and coping with a loved one with this horrible illness. Again…..Thank You for responding to my post. Dee (Sisterlove)

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@hopeful33250

@sisterlove

Please accept my condolences on the death of your brother. I appreciate the way you are honoring his memory by searching for answers to how he came to get this disease. I found this article about HD from the Mayo Clinic website, http://www.mayoclinic.org/diseases-conditions/huntingtons-disease/home/ovc-20321431. You might also find some articles about this by searching, googlescholar. The articles on googlescholar are not as easy to understand, however, as the Mayo Clinic article.

I have a feeling that you would be a good support for others who are dealing with family members who have HD. I did find a listing of support groups for this disease at this website, http://hdsa.org/about-hdsa/support-groups/ Have you considered attending a support group?

Teresa

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Dear Dee @sisterlove,

We will certainly keep you in mind if we hear of anyone who is dealing with Huntington’s, you have a great deal of experience, but more importantly compassion. How wonderful that your brother had you close by to advocate for him! I’m sure that you miss him.

Please feel free to share with our Caregivers Discussion group. I would like to introduce you to @IndianaScott, who is the volunteer mentor for that group. He lost his wife last year after a prolonged battle with cancer and he will understand your grief and appreciate the support that you gave your brother, as Scott was also a strong advocate and caregiver for his wife. I’m sure if he hears of anyone in his group who is dealing with Huntington’s Disease he will certainly bring you into that discussion.

Peace and comfort to you Dee,

Teresa

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Hello @sisterlove,

I’m so sorry to learn about your loss; we sincerely appreciate and are glad that you returned to Connect, albeit with sad news.
The NIH (National Institute of Health) has some very recent updates about Huntington disease, which you may also wish to view: https://ghr.nlm.nih.gov/condition/huntington-disease#synonyms

@sisterlove, in some ways it is one of those ironies of life, that by helping others, when we ourselves are grieving, makes enduring our loss that much easier. So stay strong, and continue talking and leaning on this wonderful Connect community.

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@davidwhitehurstbrown

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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@sisterlove, what an appropriate name. Your brother was so lucky to have you. My mother is 73 and has Huntingtons disease and she had a father she never had much contact with so he must have been the genetic link. We know he passed away fairly early in life. My moms mom is still alive and has no signs or symptoms.
All this genetic stuff gets pretty messy especially when parents are not always up front with their children. I like to believe that people have good reasons for doing what they do.
Me and my brother thought we had the same father but as an adult I found out I had a different father. This turned out great for me because I have this whole other family that are wonderful people.
Back to huntingtons, I thought my mom was having mini strokes and or significant hearing loss. So i took her to get hearing aids and she was the happiest person on the planet. But, she still seemed to be not quite right. I took her to a neurologist I was seeing for migraines and neuropathy, and she noticed the movements mom was making resembled chorea. She tested her blood and it came back pos. for huntingtons. I wanted to be tested right away and the doctor wanted me to wait to see a specialist with my mom at the teaching hospital but I insisted on the test and filled out the special papers saying I had genetic counseling and was aware of the possible immplictions of knowing and of others knowing. I didn’t care, I just needed to know as soon as possible. I don’t regret my decision but I wished they would have told me that I had the mutation instead of telling my mom my status and then her having to tell me. That was not very nice or professional.
I stayed with mom at her home for more than a year. We went to the movement disorder clinic at Washington university. Moms symptoms progressed and she couldn’t take care of herself and I couldn’t physically handle her care anymore and her husband s job kept him away five days a week. So we all decided to start looking for nursing home. We found one close to me and my brother home.
Moms been there for six or seven years and just started getting hospice care so they don’t expect her to live more than six months.
It is sad and I will miss her dearly but she is extremely weak and is tired of living in a body that has betrayed her in every way. She’s had hallucinations, depression, anxiety. Tremors, loss of balance that cannot be corrected with a walker, tics and clicks, chokeing on food and drinks and saliva, not able to talk in full sentences. Loss of bowel and bladder. And totally aware of all of it but can’t do anything to change it.
The specialist have nothing to offer her so we stopped going.
Anyway, I’m glad I was scrolling thru connect and saw your post. I belong to another group for my lung disease/ MAC infections and don’t stray much. I’m sorry you did not get the support you needed and hope things have gotten better. And thanks for taking good care of your brother!
Becky

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Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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@davidwhitehurstbrown

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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@sisterlove Hi, Becky. I just read something this morning which I believe will be greatly appreciated around the world. I know this is not a line about Parkinson’s, but I think everyone ought to know about this. Parkinson’s disease, in the early stages, is very difficult to diagnose. However, now a team of researchers, I think in Japan, have discovered a previously only hinted-at fact which should make Parkinsons easy to diagnose in the early stages. That is, that if Parkinson’s patients drink the same amount of coffee, the Parkinson’s patient will have less caffeine in their body than the non-Parkinson’s. Now, given this, perhaps caffeine metabolism will begin to be seen as a sign involved in the diagnosis/treatment of other autoimmune disorders as well, such as Huntington’s, encephalopathy, Alzheimers, etc. At least there might be some hope.

Liked by chinasmom

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@kanaazpereira

Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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@kanaazpereira,Thank you for your very kind and thoughtful words. I actually looked up this similar article just last it was very briefly mentioned on a morning news show. I think I went to Roche pharmaceuticals website or a foreign news papers website and looked up the information.
When I read that the treatment is introduced into the spinal cord fluid it sounds like torture to me. I’ve had so many injections, related to a back injury, that I am not letting anyone near my back with a needle no matter what the promise. Ive had a two level fusion, I’ve had an IDET to burn the disc, a spinal cord stimulator, a morphine pump in the spine. All things that never helped. I know it’s just a few minutes and its over, but having so many injections I’ve lost count has built up
an unimaginable anxiety. So letting someone near my back with a needle, I would rather die.
I know that sounds harsh, but that’s my reality.
There is CRISPER, I don’t know all of the particulars about it . But I’m hoping it will be a more humane treatment.
I do not think anyone would enroll me into any study with my medical problems. I have non-cystic fibrosis Bronchiectasis which cause me to be unable to clear mucus from my lungs. The mucus becomes infected and causes inflammation and scarring. Im currently on 3 different antibiotics for 18 to 24 months. The bacteria is called NTM/MAC and was recently treated for pseudomonus with a fourth antibiotic. The treatment is grueling and doctors are unsure if it will work. There is no cure for that either. If you want to pop over to the forum and read some of the posts. People are really going through some stuff but are kind and smart and encouraging to strangers. There is hope in sharing your experiences.
God gives us strength to go on somehow. My Huntington symptoms are only noticeable to me and I have a gift of not being able to see myself progressing. I can enjoy visiting, bathing, and feeding my mom at the nursing home. I think the ride home is the hardest after she tells me she doesn’t want to live in that body anymore. All i can say is, “i understand,I love you and i will see you soon”. Then i cry all the way home and then life happens and my attention is needed elsewhere.
Well today is Sunday and I will watch Joel Osteen on tv. I really like his encouraging words.
Hope you are healthy and happy! Thank for your guidance,
Becky

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@davidwhitehurstbrown

Google ‘huntington disease – causes – nhs choices’.
‘In around 3% of cases of Huntington disease, there is no obvious family history of the disease. This could be due to adoption or because relatives with the condition died early from other causes. In rare cases, it’s due to a new expansion in the gene.’ http://www.nhs.uk/Conditions/Huntingtons-disease/Pages/Causes.aspx
Over the past ten years, stem cell therapy for Huntington Disease (HD) has been ineffective — however, very recently, stem cell cell therapy seems promising for stroke, HD, and other neurodegenerative disorders. It might be worthwhile to attempt to enroll HD patients in stem cell therapy trials (that are mainly for stroke victims).
Borlongan, C. V., Jolkkonen, J., & Detante, O. (2015). The future of stem cell therapy for stroke rehabilitation. Future Neurology, 10(4), 313-319.
Diamandis, Theo, and Cesar V. Borlongan. “One, two, three steps toward cell therapy for stroke.” Stroke 46.2 (2015): 588-591.
http://www.eurostemcell.org/factsheet/stroke-how-could-stem-cells-help

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@oldkarl , Thank you for being on the look out for new information and for sharing it. Happy Sunday to you!
Becky

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@kanaazpereira

Thank you, @chinasmom, for the wonderful words of support and for sharing about your mother; I’m certain @sisterlove will appreciate it too.

I found some groundbreaking news about a new drug which might interest you. The drug, Ionis-HTTRx, shows promising results to fight Huntington’s disease. You can read the details here: http://www.cnn.com/2017/12/11/health/huntingtons-disease-drug-trial-study/index.html

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@chinasmom Hello Becky,

I am so sorry to hear of your many medical problems. I am glad to know that your faith remains strong and you are able to give of yourself to you mom and distract yourself from your problems. That is a blessing! You mentioned in a previous post of having the Huntington’s “mutation.” If you are comfortable sharing more about this, may we ask what symptoms you are currently experiencing?

We look forward to getting to know you better and supporting you during this time. We wish you and your mother well.

Teresa

Liked by chinasmom

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My husband’s cousin died from this horrific disease. Everyone thought he was using drugs or alcohol with his slurring, behavior etc. It was too late. It progressed rapidly. He got violent at 2 nursing homes and was ‘kicked’ out. He was in his 50’s. There can be a carrier of the gene in the family. No one else has seemed to have this but some of his siblings were tested and their dad was a carrier. Also he has a young adult daughter but she doesn’t want to know if she carries the gene. I am so sorry. I hope you can find a support group. We do have a few around this area. It was an awful way to watch a loved one. But yet so many are….

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@dolan

My husband’s cousin died from this horrific disease. Everyone thought he was using drugs or alcohol with his slurring, behavior etc. It was too late. It progressed rapidly. He got violent at 2 nursing homes and was ‘kicked’ out. He was in his 50’s. There can be a carrier of the gene in the family. No one else has seemed to have this but some of his siblings were tested and their dad was a carrier. Also he has a young adult daughter but she doesn’t want to know if she carries the gene. I am so sorry. I hope you can find a support group. We do have a few around this area. It was an awful way to watch a loved one. But yet so many are….

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Hello @dolan

We appreciate your adding your story of a family member who had this rare disorder of Huntington’s Disease as well as your sympathetic words for those affected by it. While each story seems unique, they are also much the same in terms of diagnosis not coming quickly and the quirky symptoms often being diagnosed as something else. I am sorry to hear that your husband’s cousin was so ill, I know it must have been very difficult for the whole family.

Teresa

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