Hi, I'm Tonys wife, Alice. Tony has asked me to put a little bit about us and Tonys huntingtons from my perspective. So here goes.
We have been together almost seven years and got married just over a year ago. We have a large age gap (I'm 27 years younger) but we don't notice it.
When we started dating though Tony lost a lot of support from his friends and family (due to our age gap) in his life which made it so much harder when he was diagnosed two years ago.
We are very lucky to have my family living in the same town and Tonys lovely children live within a few hours drive.
Two years ago Tony began walking into things and making mistakes at work. He was a truck driver so mistakes ment he was putting his life and other peoples lives at risk. I'll never forget one afternoon he rung me and said he was lost. I could hear how scared he was. I told him to keep driving until he could see a road sign. Turns out he had lost concentration and had driven half an hour past his drop off point. That night we had a big talk and we decided he needed to make an appointment with his doctor. We already knew his mum had had Huntington's and so did his daughter. The doctor sent us to a neurologist who confirmed what we suspected.
My heart broke when we heard the news but what was worse was that the doctor said that tony could no longer work or drive from that day onwards.
Tony broke down in uncontrollable tears. Driving was his life.
He lived for truck driving.
When we went to talk to his boss later that day we were both a complete mess. All I could think was how will we afford the mortgage. But Tony was thinking other things. When we got home Tonys first thing he said was that if I was going to leave him I had to do it then. I was kind of hurt by his comment. If anything his diagnosis made me love him more. He had supported me through a cancer scare, fertility trouble and a miscarriage so there was no way that I was going anywhere!!
The first few months we both went through a huge roller coaster ride of emotions. Frustration, anger, grieving for the future we thought we had ahead of us.
For a long time Tony just stayed at home and didn't want to talk about it. I found a Huntingtons page on Facebook that has been my rock!!
The hardest part for us both is when people ask "is tony getting better" or when they say "it doesn't look like anything is wrong with him." A couple of weeks ago his friends wife even had the nerve to tell him it's all in his head when he couldn't remember her name. When he told me this I was so angry and tony told me he felt so hurt.
If only people see the days when he sleeps until almost midday because he is so over tired. Or when he has angry outbursts and he can't control them, the twitching and shaking and the lack of concentration.
He told me he wants to start reading so we got some books. But poor tony, he can't concentrate for more than a few paragraphs and then he can't remember what he's read anyway. It's so incredibly frustrating for him. His daughter and son have bought some books about trucks, motorbikes etc which are mainly pictures and one paragraph about the machinery. We've found these book are brilliant as he can just flick through them if he's too tired.
It breaks my heart to see him finding life so hard some days
He's started going to the gym and has a really positive outlook on life most days.
Some days are harder than others but we are just so greatful that his repeats are lowish and that he's still reasonably independant. I'm so proud of Tony for what he's achieving in life at the moment. Our future has changed that's for sure but it's not as bleak as we first thought after the diagnosis. We will get there, one day at a time.
Well, I think that's a good introduction from me. I'm sure you will be hearing more from me again soon.
Alice
