Patient Comments: Huntington Disease - Experience

Please describe your experience with Huntington disease.

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: h atkinson, 55-64 Female (Patient) Published: July 08

I am 56. I have had Huntington disease since 2007. It is very hard for me (no help). I do have mood swings; have never been to support. My family is very busy and have never been there for me. Wonder if anyone ever tried sign language; I think about that when I babble. I used to ask for help; just try for the anger, I try to scream very loudly once a day. I have been trying to get help to go to a shelter; ex-husband won't let me sell home.

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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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Comment from: Shelly, 45-54 Female (Caregiver) Published: January 26

I am the youngest (female) of four children. (One sibling died at the age of 2.) I am 45 years old, and my mother had Huntington's throughout my childhood. I was 13 when she became completely bedridden and took care of her until she died when I was 31. My sister (age 52) and my brother (age 61) both now have Huntington's. My brother and I chose not to have children and have never been tested. My sister has three children who also have children. Watching her suffer with this disease is so very difficult. The worst is that she will not allow any of us to help her; she becomes very violent. Her hygiene is horrible, but we are unable to convince her to let us help her. She is a smoker, and it is purely a miracle that she has not burned down the home. She lives with my two nephews and his small daughter. There are about 100 burn holes in her mattress. She will not go to any doctor; therefore, her health aside from Huntington's is a mess. I worry constantly about her well-being and her children. I am about to go before a judge to see if they will grant a court order to have her picked up and forced into our local hospital.

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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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