Learning to count to ten

By Alice (Tonys wife). 

The last few weeks have been the worst for tony in quite some time. He's been incredibly down in the dumps and moody. He's often blank when I talk to him, which in turn frustrates me and I just have to count to ten and remember that he's not trying to wind me up. It's this bloody disease. I hate it, I hate it, I hate it. The biggest part I hate is that Tony is becoming less and less the man who I fell in love with and married. Some days it's like living with a stranger. Then there are days or moments when the old tony shines through. These times are special and I'm really trying to embrace these times and treasure them as hard as it may be. 

He's been loving helping me clear the vegetable garden of our summer crops before winter comes and has been helping me make sauces and chutneys lately too.

Tough time lately

The last three weeks have been crap and that's putting it politely. I've had no energy and have felt like my body won't do what I want it to do. 

Last week my good mate took me to work with him for the day (he's a sales rep for farm products). It was good to get out of the house and go for a drive around. We also went to the beach for the day last weekend with my friend and his wife for the day. Was good to be out and about in the fresh air. We did lots of walking and collected some muscles along the way. The down side is that the next day I was so tired that I couldn't do much. 

I feel like the disease has stepped up a level just lately. I've got less energy and getting more wobbly when I stand up. Off to the doctors on Monday to check everything incase it's blood pressure. 

Went for a walk with Alice and the dogs this morning. 

Trying to do as much as I can physically but it's bloody frustrating when my body just doesn't work like it did even just six months ago.

Tried bush walking ...

My wife is really into walking and trying to loose weight at the moment and wanted to go for a bush walk this morning. I said I'd go with her. I've tried this walk before but I only got a short way into the walk last time before having to turn around because I lost my nerve at the stairs that are pretty narrow and very steep. This time though to start with it was good, I wasn't worried to begin with. We got past the place where we turned around last time. But then we got to a really  narrow part with a verticle drop at the side. My mind was telling me that I couldn't do it. I got down onto my hands and knees as I felt like I was about to fall off. We had to turn around but there were big stairs that we had to go down. I sat down on my bottom, slowly getting down. I felt very anxious and upset. I got VERY wobbly!! I really enjoy bush walks and want to keep doing them but I think we need to do easier tracks than I did before my Huntington's started showing symptoms. I was really gutted that I didn't finish the whole walk. Alice was really good, she didn't make me feel silly that I got upset with myself. She was really supportive and kept telling me how well I was doing.  I'll give an easier track a turn next I think.

At the top of these stairs I lost it. I couldn't move and I got really shaky. I still am proud of how far I did though. 

I used my two walking poles, I can't leave the house without a stick a lot now. Using two sticks I've found is good on long distance walks. 

 

Me and my wife Alice

So proud of my husband

By Alice (Tonys wife)

Tony and I are really trying to embrace life at the moment and we are both enjoying exercising. So we went walking in a lovely park like area not far from home this morning.

Tony blew me away with his positive outlook, his ability to walk steadily with his sticks and we walked for almost 2 hours (the longest walk he has done in 2years!!). 

I can't find the words to express how immensely proud I am of tony. He has come so far in the past year and isn't letting Huntington's control or take over his life. He's making the most of every day and we have both come to realise that even though there are many hard days we are still so lucky to have what we have. 

 

Enjoying the life I have

This morning Alice and I went for a walk. I was amazed to find that by going to the gym over the last few months I'm fitter than I have been in a long time. I still need my sticks to walk and I know I'll always need them now but we walked so much further than I could before starting at the gym. I wish I had started taking care of myself before getting sick because it's so much harder to do it once you are sick. If by reading this blog even just one person with HD feels encouraged to stay active I will feel like it's worth writing this blog. I'd love to be able to inspire and encourage people that are in the same predicament.

I like that Alice and I can still do the things we love doing together. The tracks we walk are much much easier than I used to do and I can't do hiking like I'd like to do but I'm happy that my body is still allowing me to do this much. 

Not the best week

This week hasn't been too good. Had a couple of days where I wasn't too good. Got up Monday morning to go to the gym, was all ready to go when my balance went and I got wobbly. I also had a funny tummy but not sure if it's huntingtons related. I'm back at the gym now but my strength and energy has completely gone. I've been sleeping lots this week. After a visit to the gym I'm needing a sleep each day. But at least I'm getting out of the house, exercising and meeting people. I think the exercise is helping my balance and that it's helping my chest muscles be stronger so I am not chocking as much.  I'm hoping it will help with winter ahead of us so if I get a bad cold or flu I'm hoping that it will be easier to cope with. That's my plan anyway. I'd be lost without the gym. It gets me out of the house and I've met a few people who are aware of me having HD and they are good at chatting with me. And one or two of them have said they keep an eye on me incase I'm finding things hard. I get lots of support there. Alice (my wife) is driving me to the gym in the mornings now on her way to work to save me walking so much as I was getting tired on the walk there before I started my workout. Even though I've been exhausted this week I've been happy.  I've accepted my huntingtons and that I'm not going to get better but I'm not going to let anything beat me!

This has been my afternoons this week. Could be worse I guess but just wish I had more energy.

From Alice's view

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