Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: Jane, 55-64 Male (Caregiver) Published: April 12

My husband was diagnosed with Huntington's Disease at the age of 57 with no known family history. We now realize that his mother has the disease in a much milder form. She is still alive at 86 and does not display obvious symptoms. She has not been tested. We believe that other family members may also have had the milder form but have passed away before symptoms manifested. No other family members have been diagnosed to date. My husband's CAG repeats are 42. In the 7 years since his diagnosis, he has lost almost all of his abilities and is now in full time nursing care. He has a lot of movement which leaves him exhausted. His coordination is poor and he has extreme difficulty walking. He has recently started having rages and is uncontrollable and unreasonable when these occur. He has damaged his room quite extensively and you have to just leave him alone until he settles down. Sometimes the trigger is frustration, other times his own thoughts lead him there. He has adverse side effects to many medications so we have to be vigilant when he tries a new drug. He has swallowing issues with both tablets and food. We are reluctant to get a feeding tube as he would tear it out in one of his rages. This is a most difficult disease to treat and manage as there is no cure and as of now, no really effective treatment for all patients. We have children and grandchildren who are all at risk.

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Comment from: Donna, 45-54 Female (Patient) Published: February 04

My dad has this, and I went to a neurologist, and he said I had restless legs. I really think I have what my dad has though. I take klonopin for my legs, and have for about 10 years now.

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Comment from: Apple, 65-74 Male (Caregiver) Published: December 27

To the caregiver whos husband is OCD and violent. My husband has Huntington's also. His behavior was the same as you describe. I took him to a psychiatrist who had him on Prozac and Wellbrutrin. When the OCD started getting bad, he put him on Clonzipam. That helped him deal with his anxiety some. He then prescribed Risperdone 1 mg for him. It worked but he had to increase it after my husband was "breaking thru" and not being controlled on that dosage. He now takes 2 mg. I have a very content husband who is agreeable and fun to be around.

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Comment from: Sister, 35-44 Male (Caregiver) Published: September 15

My brother was just told he has Huntington Disease. He hasn't shown any real symptoms besides some depression. He told my family a blood test confirmed he had the disease. He is going for a second opinion. My only question is there is no one in my immediate family that has been diagnosed with this disease to the best of my knowledge.

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Comment from: DeeJay, 19-24 Female (Caregiver) Published: September 13

I watched our adopted daughter (niece by blood) be destroyed by Huntington's. She was diagnosed at 16 years old and progressed very rapidly. It was heartbreaking watching this beautiful child suffer though. She died at age 23. The only consolation was that she never did go through those horrid ending stages of HD. She went to sleep one night and just didn't wake up.

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Comment from: Rosa In Connecticut, 45-54 Male (Caregiver) Published: September 07

My father was diagnosed with HD when I was 7 years old. He died three weeks before my 21st birthday at age 63. It was the hardest thing to watch him suffer for so long. Things never got better for him, only worse. I have two brothers and neither one of us have been tested to see if we have the gene. We are all scared. I don't want myself or my brothers to suffer the way my father did. This disease is something you wouldn't wish on your worst enemy. There isn't a day that goes by that I don't wonder if my life will be taken over by HD. I am always scared for myself and my brothers.

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Comment from: ncosta, 55-64 Female (Caregiver) Published: August 05

I take care of my husband with Huntington's chorea. He has had it now for 20 years which is a very long time. His mother had it. He is doing well considering all his limitations and has a wonderful attitude which probably explains his long life with this horrible illness. We now do a feeding tube every 4 hours and he still can enjoy life and his grandchildren. As a caregiver I am totally stressed with all the possibilities regarding my two children and now two grandchildren all of which have not been tested. They choose to not deal with it and are of no assistance in their fathers care.

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Patient Comments

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Huntington's Disease - Age Which Appear Question: Have you or a friend been affected by Huntington's? Please share your experience.
Huntington's Disease - Symptoms Question: What were the symptoms associated with Huntington's disease in you or someone you know?
Huntington's Disease - Testing and Diagnosis Question: Have you ever been tested for or diagnosed with Huntington's? Please share your experience.
Huntington's Disease - Family History Question: Do any relatives have Huntington's disease? Have you or other relatives had presymptomatic testing?
Huntington's Disease - Treatment Question: What kinds of treatment, including medications, have you or someone you know received for Huntington's?

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