Huntington's Disease

@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

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

@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

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....

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

Iam 55 years male & have been suffering from CSVD for the past one year.Took MRI Brain which shows Brain Shrinkage. With tremors & Ulnar Neuropathy problems,for the past one year I am not able to walk due to my left leg swelling. Blood thinner helped me. Now for the past few days I am dashing towards any objects i,e, wall, floor, cot etc. and got hurted. Tiredness and lack of concentration is there. Not able to perform work perfectly. Kindly reply whether I am having Huntington disease.

I don't have any family history relating to Huntington disease

Hello @venki

I am sorry to hear of the difficult problems you are experiencing. At Mayo Connect, we are not medical professionals, only patients like yourself. Therefore, it is important for you to report these new symptoms to your doctor. Your doctor is best able to determine what your symptoms indicate.

Please keep posting and let us know how you are doing.

Teresa

In India Doctors don't give imporatnce to diseases like Huntington Disease, Small Vessel Disease Brain shrinkage & other nerve related issues. I have consulted neurologists who prescribe medicines in assumption only. Im very sorry to say this as per my experience. Research on Brain issues should be undertaken. Then only we will be able to get treatement.

I can say, there is help.
I have a dear friend in town here.
Her Huntingtons is inherited.
She is active, she walks,and,
has a very upbeat personality.
She is so happy for herself.
Her doctor had her go to
Physical Therapy. She learned
So many things that she can do
Better.
I hope your brother has good
Medical. The help is out there.
Blessings