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