I am really struggling with some things and I need to vent. Since my dad has been diagnosed with HD for about 2 years now, I have had to cut some people out of my life.

I really tried to explain and educate them about the magnitude of HD and everything that is involved with this terrible disease. Even after I did all of this I was still left feeling like they" just didn't get it, or more so just didn't care".

I get it that unless HD is sitting on YOUR lap, or knocking at YOUR front door then you truly are not going to get it, understand it, or even care to understand it.

But at the same time as I continue to watch my wonderful, kind, brave and still full of courage dad in the later stages of HD have to suffer to get though each day, it saddens me that some people have been so insensitive to the facts of what my dad and me are going through.

I am not asking for sympathy from them. I just thought they would at least try to understand what HD really is and not be so insensitive about it.

Jen-
I lost my wife to HD when she was 33 years old and care for my 31 year old daughter who has had HD for about 14 years. I once had a lady ask what was wrong with my daughter. When I got to the part about HD being genetic, she blurted out "you mean I can't get it? Oh thank God!." She then walked away saying that she was not interested any more. It is true that many people will desert someone with HD. When we told my daughter's best friend about her HD, she said "I won't be seeing her anymore. I prefer to remember her as she was." True to her word, we have not seen Meaghan for a dozen years. Even more incredibly, in 2007 my mother announced that she was embarrassed by Allison and would no longer see her. We have not seen or heard from her since. This is her loss as Allison has had so many incredible achievements and is still going strong (see her story on pg. 2 of Community). My personal feeling is that some people like a good illness as long as it doesn't go on for too long. A short commitment of a few visits, maybe a card or a box of candy, is OK. HD lasts way to long for most. Heaven forbid that they might be asked to help. Few people have the resolve to see it through. Over time it will become easier and easier for you to dismiss these insensitive fools. Best wishes to you and your dad. I get it!
Howard

Hi Howard,

Thank you for responding to me and for getting it! I just read Allison's story, she is so lucky to have you as her dad. You and Allison remind me of me and my dad and how close we are.

I know it people can be so rude and insensitive cant they? I have also had people stare and look at my dad like he is some kind of crazy, drunk , monster and just like you encountered with the lady saying "you mean I cant get it" ? I had a lady once that would not stop staring at my dad when we were grocery shopping in the aisles, she kept scooting away from my dad like he had something contagious and she didn't want "to catch it".

It took everything I had to NOT react to her ignorance. I am very protective over my dad and its a sensitive thing for me. I have tried to learn to NOT react to most people and their ignorant ways, but sometimes its really difficult. I am always in Protect mode for him. I know that you understand protect mode too.

So much of what you are saying hits close to home for me. About Allison's "best friend" and your own mother who was too embarrassed of her!
Good riddance to both of them then! We do not want or need those kind of people in our lives anyway. And yes, its your mothers loss that she has not been able to see all of Allison's achievements.

I like what you said about most people like a good illness as long as it doesn't go on for too long. I agree with this.

I have had people in my life that would say, "your dads still sick and not feeling good"? ( this is after I already explained HD to them, so they must not have been listening to me) the first few times I would explain it (HD) again.

After a few times of explaining it again I got really mad and I said what do you not understand about the fact that my dad's brain is slowly dying and that its a slow and cruel suffering death.

Jen-
The supermarket staring will always happen. I've both confronted and ignored them. This usually just left me mad. Now I just stare right back at them and they usually turn away and disappear. I took Allison back home to live a year and a half ago because, believe it or not, the people in the nursing home didn't really understand HD very well either. I expected HD expertise there and it wasn't to be. Since she came home, Allison looks so much better and is much happier. As you have learned, very few people really understand HD and this includes most doctors. The HDSA has done a horrible job marketing HD . I think because it is so poorly known, few people recognize its severity. The folks that I have met who understand HD best are close family members who have accepted the role of caretaker. When my wife was sick, very little was known about HD. In fact her doctors at MGH discovered the gene two months before she died. Allison is cared for by these same doctors (and others) at MGH so we are very lucky. The best place to learn about HD is right here! I've been here for about 9 years (we all had to reregister 6 years ago) and appreciate Marsha and Steve's dedication to this site. I met them a few years ago at the Guthrie Center and we couldn't have better folks running this.
Howard

It's sad anyone has to go through what you are dealing with. I know you aren't looking for sympathy. The insensitivity of others is something we encounter more than we realize and I think especially when it relates to something as serious and life changing as HD it then becomes much more significant.

You guys are the "better person".

Mike

Hi Mike,

Thank you for understanding this as well. You are right, we are the "better person". It is sometimes so hard to always be "the better/ and the bigger person". I have to work on this everyday and keep reminding myself of it.

I read some of your older posts. I wanted to ask you about your dizziness symptoms. Did or does it happen to you all the time ? I remember my dad always saying that he was very dizzy in all the years that he was being misdiagnosed and before we knew he had HD. I am still living at risk for HD and I have been dizzy for many years. What about headaches, did or do you experience them?


Jen

Hi Jen. Yes, I have some form of dizziness all the time. A severe case of vertigo and associated nausea/vomiting is how my symptoms came to a head. I will never forget that day. I immediately told my wife this is not a virus. I too was misdiagnosed for quite a while, all the while not believing they had it right. All of that (long story) took me to Jacksonville's Mayo Clinic where I was diagnosed. The dizziness varies now and some days are better than others. As far as head aches mine were ocular migraines.

Did or does your Dad have a lot of fatigue. This can be pretty incapacitating.

Best of luck to you and yours,
Mikee

Mikee,

Have you tried ginkgo biloba for vertigo? My non-HD wife has used that with excellent results.

Will

No I haven't. At one time I was on Meclazine (?) when it was thought I had Menieres's I went up to 6 tablets a day with 1.5 mg valium with no results. Should have been enough to drug a horse. Somehow I managed to go to work.....

Mike

My Mom's friends also said that they wanted to remember her as she was and completely abondoned her. Granted it was very difficult for me to watch my Mom deteriorate and to know that that will be my future. I hate to admit it, but when it came time to go to college I was quite happy that I didn't have to see it everyday. Visiting her was always so difficult, I was always on the verge of tears.

I'm sure this has got to really hurt when you've had to cut some people out of your life, but it sounds like the right decission. I guess I can understand how people might have the attitude of, "I want to remember this person a certain way," so they stop coming. But why don't they hold onto the old memories and also make new ones? Also, I suppose some people are uncomfortable thinking they might "say the wrong thing" or "make the situation worse" when visiting or whatever their excuses or mindset might be. Maybe they feel badly seeing your dad change and it depresses them. I think it really boils down to these people are more concerned about themselves than others. There are people that seem very shallow in that they only want to have good times and are otherwise totally so self-absorbed that they have no time for anyone else's problems. If they truly were friends, I would think they'd try to help their friend/ loved one and the family affected by HD deal with these changes. Maybe they're afraid of the changes and don't know how to help. I really don't know. It seems mind-boggling that Howard's own mother abandoned her own grandaughter! That just makes me want to cry. I have to admit that I have not had much experience or really delt long term with HD. I think that Howard has a good point about people being impatient with a long illness and wanting instant resolution. But I would certainly hope that when the time comes I will have enough character to not just think about myself. I also am baffled by people making rude comments out in public. I was taught by my parents, "If you can't say anything nice, don't say anything." People can be so cruel. But think about all the wonderful people out there too. Surround yourself with those who care and forget the rest just as Howard advises.

We have also experienced the abandonment by people who were once close to us. I think that the ones who stay are where my focus will be. The ones who just can't bear to watch, I got nothin' for em.
Like Howard, I have also brought my son home from the NH. Like Allison, Tim has shown amazing improvement since coming home.
We are the experts regarding Huntington's; I can hardly find the vocabulary, however, to adequately describe this monster that is stealing my kids. So, when people don't get it...that's just because they aren't living it.

Love this place and all of you!

Take care,

Carla

This is a great subject to touch on. I have often written notes and mentioned that my phd would love to have visitors in his NH to old family and friends. Even just a stop by for 15 minutes. Noone ever comes.
Comments always are that they have to get over to visit, but never do. I understand family being in denial and afraid of their own possible fate but I don't get it with old friends. I am sure that if it was cancer we were talking about, the visitors would come but HD is so stigmatized, people are just afraid of it. In family gatherings outside the nursing home people are more receptive. Even a once a year visit would be great if a few showed up.
I try not to judge them but to be honest if they are that small in thought process, they are weak and I don't need to get them involved. I am grateful for the care and involvement in the NH, the staff really do care.
Guess I have gotten thick skin but if people stare I just proudly march forward and treat my phd as a really special person, the fear that people first seem to exhibit quickly disolves, it is sort of a form of education in public.