Thursday 5 February 2015

Making the most of my life

I've started this blog as Huntington's isn't common in New Zealand and I wanted to get the right information and understanding out there.
My name is Tony and I'm HD positive. My CAG is lower than most positive people but still it effects me every day. Two years ago I was diagnosed and laid off work as I was a risk to other people as I was a truck driver. I had been a driver for 30 years and it was my life so to suddenly be housebound I became depressed, and I had too much time on my hands to think about things.
The first year being at home was the hardest. When my wife went to work each day I was lonely and my life became very isolated. Some of my friends thought I was dying or didn't understand the disease so distanced themselves. Even now some of my friends see me when I'm having a good day and they think I'm fine and there's nothing wrong with me. It's bloody frustrating when I just want people to understand and support me.
My main symptoms are  lack of balance and concentration, short term memory problems, I look like I'm drunk when I walk especially when I'm tired so I walk with a stick., excessive tiredness, I find it hard to  maintain muscle tone. My wife notices things I don't, she  sees me shaking and twitching especially when I'm tired, involuntary movements when I'm sleeping and coughing/chocking when drinking and mood changes.
I have two children from my first marriage. Back then we didn't know Huntington's was in our family so we didn't know it could be passed down. My son missed it thank god but my daughter inherited it. I would give my life if  I could take it away from her. I feel so incredibly sad and guilty that she has it especially now that she wants her own children. Luckily her CAG is also low and she's very positive about her future and has a good outlook on life.
Six months ago I decided that this disease wasn't going to get the better of me. I've changed my eating habits, they weren't bad to start with but  I've improved on healthy eating and growing our own vegetables to reduce toxins as much as I can. I've stated taking spirulina daily to improve my immune system and help with general health. I'm also going to the gym at least six mornings a week. I enjoy the gym and feel so much better for it but if I miss even just a few days I go backwards . It also gets me out of the house and I'm liking the social interactions. But by the time I'm home I'm stuffed. I have to have a rest before being able to do anything but it makes me feel better in the long run.
I have to have a nap most afternoons or I get overtired and get wobbly and shaky.
If I don't have a nap I'm in bed very early at night. Before I began going to the gym I was sleeping in until 10am.
My outlook on life has improved since going to the gym and meeting new people.
I'm no longer depressed but of course I still have bad days. I'm glad they aren't as offen as they were though. Because I've got no drivers licence I have to walk if my wife is at work. I'm really seeing the benefits of it too. Having our two dogs and our cat help to keep me company too.
My wife also wants to write on here to put her views across so you will hear from her some time too. :)

No comments:

Post a Comment