I turned 48 on my last birthday. Another year and a half and I will be 50. Time sure is flying.
I will be going to the clinic in July and will be interested to hear of the new effective treatments they have now for slowing the HD down. I am also hoping I will get on the list for the gene silencing treatments. It has been 3 or 4 years since I have been there so it is time.
My increase in sensory perceptions continue to be an issue for me. Smells are way stronger these days and can continue to be very over powering, things like perfumes applied too heavily or some cleaners. Noise has been amplified as well so it never takes too much for some things to be too loud. TVs seem to be my biggest nemesis these days especially commercials; they can really blare. Muting them or turning the TV down even a few volume levels can make it go from unbearably invasive to tolerable. Motion really makes me sick to my stomach these days too. Both swinging back and forth on things or watching something that is going back and forth can make me sick to my stomach, but looking away or closing my eyes can save me there. My computer can be bad for that too as anything that is moving or flashing really bothers my eyes these days. I have a cardboard piece stuck to the top of my one laptop to cover the ads signs that flash and move. It was worse on the smaller lap top but the bigger one I now use it is not as bad because the screen is bigger the ads and stuff are smaller.
There was a book about HD called "Inside the Obriens" that i just finished reading last week. Wow what a alot of calories, and in doing so emits a lot of heat which explains why people with HD are always a few degrees warmer than the average person. I have always over heated easily and now i understand the science behind that.
The other thing the book mentioned is that people with HD can use an inappropriate amount of force without conscious awareness. That is so me as I over do things all the time - slamming things down or even banging the toilet seat when i put it up or down. It would be easy for someone to think i was angry a lot if I kept slamming things around the house. That ‘body in space thing’ being gone in HD people plays into that as well because your body does not automatically line you up so it makes sense that you would misjudge where things were distance wise.
It has now been a year since I have been on the Lexapro and that is still working really well for me. What a huge difference there is inside my head! The HD clinic had wanted me to go on them for years but i fought doing so as long as possible. It seemed a weakness to do so at the time and that somehow i was letting the HD win if i gave in. Crazy logic, but a logic none the less. I still get really embarrassed when i spill things in public as well it is like i get ticked off at my body for failing me by dropping stuff or not grabbing drinks properly and fumbling with my hands. I swipe at things instead of grasping them sometimes I think.
I know a lot of people with HD also struggle with temper outbursts. Because their emotional flood gates open and close on their own and can be amplified when they react. This was part of the reason I went on the Lexapro; I was being short and losing my temper with loved ones and I could no longer control my HD emotional flood gate all the time so it was time to seek chemical help. My neurotransmitters needed some help.
The problem with losing control of your flood gate is that it is out and over the top before you can stop it. You blow and then feel like shit and are left trying to clean up the damage even though you did not intentionally do it. And even when you family is understanding because they know it is the HD and not the person blowing up like that over time it can do a lot of damage in HD families. But it is only a matter of time with each and every HD person that their chemical balance becomes more and more out of whack because they can not produce endorphins and depression is a symptom of HD for that reason.
There is a lot you can do to try be be healthy with HD and that is eating well and often as well as getting enough rest and not letting life get to you too much. We can only control so much of theIstress that comes our way in life. Deep breathing always works for me if i need it . I used to really enjoy doing yoga as well so I should start doing that again. Playing guitar and singing is very relaxing to me as well. I am looking forward to a stellar summer and getting to connect with friends while i am down south with my boyfriend this July. It has been three years since i have made it to Vancouver and Thetis Island so it will be a hoot, and give me a bunch more to write about. I hope everyone enjoys the summer too. I will pass on any info from the clinic in my next written piece.
Remember "Grief is the last act of love we have to give to those we loved. Where there is great grief, there was great love."