Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

Comment from: Christine, 35-44 Male (Caregiver) Published: March 08

I am 57 and lost my husband to Huntington disease (HD). He passed away in 1999 and my daughter had juvenile HD and passed away in 2010, she was 26. My son got diagnosed in 2014 and he is now 37. He will not have a girlfriend now, he has always wanted children but never had any with HD in the family as his grandma and 2 of his aunties also passed away with HD. I did not think my children would get HD. It is a terrible disease to watch them going through, you just cannot do anything to help with the pain. I looked after my husband and daughter till the day they passed away, it broke my heart to watch them and now I have to go through it all again with my son. It is so hard but I will look after him till the end as I love him to bits, he is my life just like my husband and daughter. To lose your children is the hardest thing to go through. All I wanted in life was a family and grandchildren and HD has taken that away from me and in the end will have taken all my family. I just wish they would get a cure so my son could live a long and happy life.

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Comment from: Marion, 55-64 Female (Caregiver) Published: May 21

My husband has Huntington's disease and is at the stage where he is abusive and aggressive. I am finding it very difficult to cope. Everything is my fault. Nobody else is right except him. It is like living in another world. How do you cope!

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Comment from: out of control, 45-54 Male (Patient) Published: December 02

Being a patient of Huntington disease, it is very hard to tell my story. Normal life has changed extremely. I hope my typing is even readable, clonazepam controls my days and I take Mirapex at night to sleep. It is difficult to do anything normal and I am almost bedridden at this point.

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Comment from: strong13, 35-44 Female (Patient) Published: October 31

I am 37 and just got tested for HD (Huntington disease). I will get my results next month. I chose to get tested because I have three teenagers and want to know for them. I took care of my mother until she passed and that was the worst day in my life. Both of my uncles died of HD also. This is a horrible disease and I hope one day they will find a cure!

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Comment from: aixela, 45-54 Male (Caregiver) Published: October 08

Huntington's disease causes my husband to get very agitated very easily. My children are older and he has gone after them to do physical harm over something minor. We all walk on eggshells. I just want to keep peace in the house and remind my children that dad only has a few years left. I do my best to keep him happy. It's been 9 years since diagnosis and my husband is not the man I married 30 years ago but I love him and I don't want my memories to be all of this disease. Most of my family won't speak to me anymore because of his rages and want me to have him put away. I feel great loss from my family.

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Comment from: SMDownes214, 35-44 Male (Caregiver) Published: November 16

My son is 40 years old with a strong family history, on his father's side, of HD. He has recently begun showing sx of HD: muscle twitching, slurred speech when tired, difficulty focusing, frequent falls and agitation. He also has hypertension and is on medication for it. I was wondering if anyone has ever done a study on the relationship between hypertension and HD. He has just gone for 4 weeks with excellent bp and then a couple of nights ago his bp went to 140/112. He became flushed, agitated, got a headache and became extremely tired. He went to the emergency room where they did several blood tests and a head CT that all came out normal. While in the hospital, his bp slowly came down within normal range without any meds or IVs. Today the same thing started to happen, didn't go quite that high, went to about 160/88. Same thing happened with the bp going down on its own slowly throughout the night. No one seems interested in correlating this to HD so I was wondering if anyone else has had the same or similar experience.

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Comment from: kimmiecupcake, 25-34 Female (Caregiver) Published: January 27

I am the mother of a beautiful daughter who is now 26 years old. She was diagnosed with Huntington disease at the tender age of 13. She's now getting worse in this terrible disease. I now have to think about a nursing home, and it's not easy for me at all. I don't even know where to start. It's so hard. I love my daughter so much. She's been a joy in my life. I can't imagine what I would do without caring for her.

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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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