Everywhere I go the world is filled with a lot of noise. Restaurants and hotels seem to be the worst for playing music way too loud. The list of places I had to leave increased by two last week when I was on a week long trip and eating out a lot. It physically hurts my head and it's like being stuck on an all static channel on the TV. It becomes painful if I try and tough it out - it is like my ears are amplifying every thing by ten and the most simplest of noises do become an issue for people with HD.
I had two first cousins with HD and both refused to eat in the dining rooms because the noise of it hurt their heads as well. Noise pollution is everywhere I go these days. I always feel guilty when I have to leave a place because their background music is doing my head in. My head rings inside and I also feel the pulse of the music and that make me sick to my stomach and motions sick in my stomach. That vibration enters my stomach somehow - especially the bass. It can also give me an instant headache. There is no way to shut down my body's physical response to it. But I know most people with HD have this same sensitivity to noise and motion because we have talked about it at the HD camp. This also happens to me with TV as it also makes my head hurt and ears ring if it is too loud.
Autistic kids can not handle noise either and are equally sensitive to it so I know it has to be genetic. There are a lot of people with HD that become house bound and refuse to go anywhere they can not control the noise and the sensory overload that can happen after they are out too long. My friend Ross had HD and he wore ear plugs most of the time when he had to leave his place to be able to block out most of the extra noise and also in noisy restaurants. My sense of smell has also increased tenfold and some perfumes and cleaners are just too much. I cannot use fabric sheet either as it make my clothes smell way too strong. I don't wear perfume at all either any more.
On my week long trip I also went to the HD clinic again and they said the other studies for the gene silencing in other countries is ongoing so it will take 8-9 month so finish and get all the input and then after that there will be another study. I have been told I will qualify to be in the next study which is wonderful news. And there have been no hick-ups in the gene silencing studies which is also a huge gain as all has gone as planned and often there are problems that can turn up but that has not happened in either of the first two studies. So this is wonderful news for all of us. I only wish it was available in pill form rather then it taking injections into my spinal spot. But I am very happy to be among the first to be cured of this disease.
It's hard to imagine having my memory back, balance back, no longer dropping a lot of things, less confusion, and being able to enjoy being around music again without it making me ill from feeling the beat. I can crank the music when I am listening to it and enjoy listening to it at a lower volume. I can turn it down if the song is too loud but I can not do that in public. I hate being a pain and having to leave as it makes me feel like I am just being a wuss but I know it is more then that as I somehow "feel" the pulse of the music to the music instead of getting to enjoy it.But we all have our limitations in life so if we have understanding and caring people around us who get it then it becomes less of an issue for HD people.
There are almost 200 fires burning in BC as I write this. We had to take a detour on the way home from the HD clinic appt as all the other roads were closed. 14,000 people have fled their homes with animals and livestock. Many passed us going the other way. It gave me a huge appreciation for all I have all over again, like a roof over my head, food and water. I am also proud of all the people who have stepped forward to help these people who had to leave everything behind. They are many stories of kindness circulating on the news and internet. I have started doing a weekly dinner and music jam at my place once a week. I love getting to sing and play. It is wonderful to get to connect with family and friends as well. There are always so many songs to play so little time...I really must get a few pics at the next one. My Dad even makes it for dinner every week but runs before the music starts...what a guy. Happy Birthday to you Pop on July 23rd he is turning 100 (just kidding on the age).
It was very cool getting to connect with a lot of my friends on Van Island and Thetis thanks for all your hospitality while I was there. And thanks to my boyfriend for a fun filled trip and for always being kind and patient no matter what all I dropped and all the different things that went sideways this trip. I set a new record last week for dropping stuff and backhanding things. After almost three years of dating he has become a pro at catching things all around me. Maybe I should pick him up a catchers mitt for Christmas ha ha ha.
Remember " We all have those special people in our lives...You know, those special friends we love as family. I just wanted to say thanks you for being in my life and for showing me that family is not just about blood. It is about trust, honesty and respect". (Author unknown)