Patient Comments: Huntington Disease - Experience

Question:

Please describe your experience with Huntington disease. Submit Your Comment

Comment from: jacko, 75 or over Male (Caregiver) Published: August 06

My dad was diagnosed with Huntington disease (HD) late in life. He showed signs with involuntary movements when in his 60s but wasn't properly diagnosed till a couple of years ago. He's now 83. We had no knowledge of HD being in the family. We have been through the stages of depression, frustration and anger with dad but after being prescribed risperidone 0.5mg and sertraline 50 mg he is back to being his happy self. He says he's lucky because he has no pain. My family and I think he's very unlucky as this must be the worst condition we have ever seen. My sister and I are both in our 50s and we are scared to be tested. Dad's health is deteriorating, he falls a lot, chokes a lot, and his functions are packing up. We hope old age takes him before this cruel disease does.

Comment from: Carmen, 65-74 Male (Caregiver) Published: July 30

My 66 year old husband has Huntington disease (HD) and diagnosed in 2000. He was a wonderful man and great provider. As the disease progressed, he displayed anger and rage and ultimately kept leaving me over and over to gamble and smoke. He is now in a nursing home and in his last stages I think, choking on his food and losing weight rapidly. It is very depressing for me because there is nothing I can do to make it better for the both of us. Moreover, I don't have family support from his daughter who denies this disease or the fact she may have it herself. This is a constant nightmare for me.

Comment from: Jade, 25-34 Male (Caregiver) Published: October 08

I was engaged to a man who tested positive for Huntington's disease. He left me 1.5 years ago although I was prepared to take care of him. He was exhibiting anger outbursts, selfishness, a sense of being bonded to me disappeared. I've had a difficult time healing because so much of his behavioral problems happened at home. Others didn't see his anger or selfishness. Now he is harassing me through text and media. He seems fixated on my dogs. He will ask about them and in the same statement tell me how horrible I am. It's so irrational it starts to make you feel crazy. He was 32 when he left and was twitching in his lip, and exhibiting the behavioral issues.

Comment from: JV, 35-44 Male (Caregiver) Published: November 06

My wife is 40 years old and was diagnosed in early 2007. Because I'm older, we both stopped working later that year and began traveling to all the places left on our travel list. It was great the first few years, but in 2011 we made our last grand cruise. It became too difficult with her physical and emotional deterioration. All symptoms are now apparent from anger, anxiety, OCD and aggression to physical movements, speech impairment, and falling down. I now find myself walking on eggshells and feeling less and less close to her present-day self, but still very much dedicated to our past memories and love. We sleep in separate rooms for nearly two years now. She cannot be physically close to me, she cannot reason well, and she only wants her daily routine. Any deviation from this upsets her, and I pay the emotional price with her outbursts. I understand this is not the woman with whom I fell in love and lived many wonderful years of married life; but it is my new reality. I will take care of her until the end. We have good insurance, so she has the best of care at home, but wondering when will be the right time for better care in a good facility. For me: I'm coping, but don't know if I can do it alone. Life continues.

Comment from: Anita, 35-44 Female (Caregiver) Published: July 12

I met a man four years ago who was diagnosed with HD when he was in his 20's. After dating for 6 months, he revealed that he had being diagnosed with HD and that his father had passed away from the same disease. I decided to stay in the relationship as I considered him to be a good man. One year into the relationship I began to notice some slight impairment with his physical movements. Then as the years went by he began to exhibit some outbursts of anger/rage. His thinking became very rigid and he became very self-absorbed and spending a big part of his life chatting on-line with many females. I was hard to stay as he blamed all of the relationship problems on me. He became very verbally abusive and in the end, in spite all my love for him, I had to leave him as I found it extremely hard to continue to be objective and understanding. I needed to leave because I was not able to cope with the abuse. It was a difficult decision to leave because I loved him.

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.

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.

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!

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.

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.

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.

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.

Comment from: confused dad, 35-44 Male (Patient) Published: January 26

I am a 40 year old with HD and went through the disease with my father and other uncle and aunt. I know what he went through my wife of 16 years and 3 kids waited for me to get the disease before divorcing because of symptoms of the disease. I never once laid hand on her or the kids but she divorced over arguments. Just told me she knew I had HD and she bailed leaving me alone fully symptomatic, she told me to move on I am not her problem anymore. To punish me even she said it with grin on her face as if she enjoyed watching me suffer. She made sure I was completely alone and symptomatic before divorcing me to make sure I would not be able to find someone to help me through this. I have 3 kids 13, 9, 5 that she wants me to help them. She refused to help me in any way with trials or anything.

Comment from: doglover, 45-54 Male (Caregiver) Published: August 05

My husband was diagnosed with Huntington disease in 2007, although I have been seeing signs of the disease for at least seven years prior to that. He was 45 years old when diagnosed. We also didn't know it was in the family due to his father refusing to see a doctor for his unusual behaviors, moods, and movements until 2006. Most concerning is my husband's change of behavior -- anger -- directed at me and my side of the family. He gets belligerent and physical, and I don't know what to do. He's on medication -- Seroquel and Zoloft -- to help and is followed closely by our doctor. We feel (me and our children and family) that we walk on eggshells most of the time, not knowing when we might say something that sets him off. It's very hard. We really don't know what to do to "keep the peace." Apathy is another challenging area -- he only does the things he wants to do -- which isn't much. He sits around the house a lot or helps another relative but does very little around our house. The obsessive compulsivity displayed is troublesome as well. He will get on an idea/action and it will be very hard to get him to get off the idea or action.

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Comment from: CF, 75 or over Female (Caregiver) Published: July 31

My Mother has HCD. She was diagnosed at 50 but we had known for 5-10 years because of some OCD things at the time. She retired at 63 and has had a nice retirement. My sister let her sit in a wheelchair so by 68 she was almost wheelchair bound. At 72 she went to 24/7 sleeping due to lack of her caregiver not visiting her but once a month. At 74 she moved down here to a nursing home who take really good care of her. Mother is up all day now. She is my supervisor as we plant flowers outside and water. She really enjoys it. Recently she is slowing down in speech and movement and I am wanting to learn about how I can help her stave off her slowing movements if not increase her speed. I never act like I know what she says if I don't. What she has to say is very important. We have had a lot of fun this past 2 years while she has been here. My husband is wonderful with her and enjoys sports T.V. with her. My son and his wife sing opera for Momma and her friends and visit when they can. My other son & his wife bless TNC with Momma's great granddaughter "visiting" Momma and her friends about every week. She is so blessed by those who love her and remember what she has been in their lives. I hope and pray to have the opportunity to "love her all the way out".

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.

Comment from: llinda, 55-64 Female (Caregiver) Published: June 12

I lost my mother and three sister and one brother to Huntington disease. I am the only one left now, my whole family is wiped out. I wouldn't wish this on my worst enemy. I cannot deal with watching someone else die from it. I have a couple of nieces with it but I won't deal with it.

Comment from: howian1, 45-54 Male (Caregiver) Published: June 10

We have close friends where the husband has Huntington disease. He is very courageous and doing the best he can. She is a very nice lady but sometimes seems to mother him, or order him around. I feel bad for them when that occurs.

Comment from: Grant, 45-54 Male (Patient) Published: March 27

I have just had the Huntington disease (HD) blood test results and surprisingly have a 41 CAG result. I requested testing after the Christchurch earthquakes of 2010/2011. I passed the clinical examinations but have suffered from recalling sequences of the day for years now. A hard and debilitating habit. I seem to collect them. To finally have an answer when my mother and grandfather did not, is good. My great uncle and uncle has HD and their children also.

Comment from: amit jain, 35-44 Male (Caregiver) Published: November 14

In my family 4 person were infected with this problem and 3 have died and one of them is in bed.

Comment from: Guest, 45-54 Female (Caregiver) Published: October 08

I'm 16 years old and Huntington's disease (HD) was passed through my granddad to my dad. I grew up with my dad my whole life until I was 13 when my dad was put into a home as my mum felt she couldn't cope. A few months after my dad was sent to hospital with a cough infection but because of the disease he was unable to fight it and passed away 5 days later with his family by his side. My sister who is now 20 has been tested for HD when she was 16 and was clear. Me on the other hand, I felt very alone and the 'disabled one.' I will be receiving my results on Monday and hoping for the best. I love my dad so much and it was so much pain to see him suffer. My dad will forever be in my heart.

Comment from: Sue, 55-64 Female (Caregiver) Published: February 01

My cousin has Huntington's disease. She is 59 years old. She had three other siblings who died from this terrible disease. She also has a brother in the hospital with it. My concern is she is still driving and her children feel she should not be driving. We tell the doctor this and it seems to just go over their head. We are concerned that she will get in an accident. How do we end this fear of her driving? She is very stubborn and violent. It seems like no one will listen. We even called the police on this. Any advice will help.

Comment from: JB, 45-54 Male (Patient) Published: September 25

My mom died of HD last year, she was 67. She started showing signs when she was in her late 50's, I think. Her brother had it also and he died too. I am 51 and I think I am getting it. I will not bother with testing. My brother and sister are just in total denial. I hope to have a serious talk with them soon. They both have kids. I don't and won't. I live overseas and have a very interesting and active life. I still have so many plans and am watching this like a hawk. I still need to work. Its pretty scary stuff.

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Comment from: scared34, 25-34 Female (Patient) Published: October 13

My mother passed with HD in 2004. She was only 42. I have two siblings and none of us has been tested yet. We are all afraid of getting tested because seeing all the pain and suffering my mom went through was so hard. I think that my sister may have HD. She has two kids and keeps running out on them because she can't handle them. I don't know what to do. This is one of the worst diseases and I wish there was a cure.

Comment from: Gloria, 35-44 Female Published: March 16

hello, my name is Gloria and my father has HD, and it is very difficult watching him suffer with this cruel disease, my father is a Great man, loving and giving and so positive, he is a true joy to be around even now, my father is 65 yrs old, and I hate to think of him not being around. He was tested with it about 19 yrs ago. I watched his father suffer as well with HD. My older sister got juvenile HD. Now she is 38 and is bedbound. She has children who sadly see her deteriorate. I have been tested and am not a carrier. I suffer daily with the guilt.

Comment from: godschild, 13-18 Female (Caregiver) Published: December 12

I am a mother who daughter has Huntington disease. She was five years old. I don't understand why she has to suffer so much. I love her so much. She is so happy all the time. Now she is getting worse by the day. I don't want to put her into a nursing home that's not the place for anyone. Now she is 13 and her birthday is July, 4 1998. She is a special person to all of us. She has 2 brothers that love her dearly.

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.

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.

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.

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.

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.

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.

Comment from: sboos, 25-34 Female (Caregiver) Published: August 02

My father died of HD 7 years ago, he was 52. I now visit my HD suffering sister, who is 37 and lives in a nursing home. She has a 9 year old little girl, and an amazingly wonderful husband. My mom stayed by my dad's side throughout the whole disease too, even though she had every reason to leave. The only way to get through this horrible disease is to stick together and lean on each other for support. It is emotionally draining, and I would not wish this is on my worst enemy. The whole family suffers together.

Comment from: Sandy, 55-64 Female (Caregiver) Published: January 28

I have a friend who has Huntington disease. She has been declining over the last 10 years. Her family and I tried to get in home help for her a few years ago. That did not work. She is now in a nursing home. It was a difficult thing for her family to do. I see families struggling with placing relatives in nursing homes. They feel guilty about it. Nursing homes are better equipped to help Huntington patients. Do not feel guilty. You are helping your loved one. Just find the best facility you can and monitor their care. Stay in touch with them.

Comment from: 13-18 Female (Caregiver) Published: July 31

I am 49, I have been around HD for 35 yrs starting with my brother in law, I watched it kill him, two of his children are dying, and I am raising three of his grandchildren, we adopted, Brianna was only 8 yrs old, she was tested for HD, and did not inherit the gene, but did have CP, and a seizure disorder. She passed away. Her now 14 year old sister does have HD. She is a handful, extremely violent, destructive, my wife and I feel we will have to institutionalize her very soon. The whole household is at risk from her violence, and we need to protect ourselves.

Comment from: Alive, 35-44 Male (Patient) Published: July 31

I am 44 my father had Huntington's disease and passed away 10 years ago. I finally had a test done and was diagnosed with the same I guess I am scared to know after seeing him suffer. I am happy to find out before I went through all of his problems and suffering. He suffered before there was a test.

Comment from: spinderella, 35-44 Male (Caregiver) Published: June 05

My son is 36 years old, for the past month or two he has been very angry, hostile and down right evil, he says hurtful things to his family and breaks things around the house. He said he is depressed. I don't know if he is on drugs (he says he isn't), but something is definitely wrong.

Comment from: kadiwompus, 45-54 Male Published: May 13

I am a 50 year old man. I have an aunt on my mother's side who died of HD 3 years ago. My mother is 72 years old and has never been tested for HD. Doctors told her that since she doesn't show signs of this disease that she will never get it. My mother also has a brother that has been coping with HD for 4 years now. On top of all this, 3 of my cousins and another aunt have recently discovered that they have this disease. I would like to know if my mother can carry HD without getting it herself.

Comment from: vestallaugh, 45-54 Female (Patient) Published: April 06

My mother died at 62 with Huntington's Korea. She had had it since she was 45 or so. His mother also had it but lived until 70. I am 53 and so far have no sign of it. It is possibly one of the saddest ways to die and it's something that lives with me always. She choked on her food, because she was aspirating food with every meal. She was in the hospital at the time after one of her many falls.

Comment from: tosassyas, 35-44 Female Published: March 25

My aunt was diagnosed with Huntington disease. She just passed away from this; she was only 42. As a family, it is really hard to deal with this disease.

Comment from: gary, 35-44 Male Published: October 18

I had Huntington's disease as a kid and for 5-6 years my life was hard, but it went away. I would like to know if it went away because I had it as a kid or just because I was very lucky. P.S. I do not miss the shaking for sure!

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Comment from: journey10, 35-44 Female (Caregiver) Published: April 19

I am 35 years old. Huntington disease runs on my father's side of family. My grandfather, who i never met, died from Huntington disease. He had five kids and three out of five of them have been diagnosed with Huntington disease. Two already died including my father, all by the age of 35. I have two brothers and my youngest brother was diagnosed with Huntington disease at age 13. He died 10 years later. My other brother got tested and does not carry the gene but is extremely violent to where he is in jail for violent tendencies. I have never been treated and don't seem to have symptoms yet.

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