Hi Sally wow it would be lovely to talk to you on the phone I told my son about talking to you he was surprised I said that maybe when I go to Sydney that we could hook up maybe cronulla I grew up at bundeena use to walk out front gate onto bundeena beach. Adam said he would like to meet as long as you aren’t too old like me!!! Can you believe these kids? I am sending you two photos 1of Adam and his sister and 1of Adam and myself just so wen we talk you have a picture in your mind of who we are look forward to emailing you my email is ■■■■■■■■■■■■■■■■■■■■■■■■■■■ bye for now kath
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Thank you. Your post is very encouraging.
When I was diagnosed 2 years ago, I let myself have a few days of "mourning" then made the decision that this would not ruin the rest of my life. Having said that, I had always suspected that I would inherit Ataxia (from my Dad) so although it was a shock, it was not a complete shock.
I have a very supportive husband. We made huge changes to our lifestyle. We got rid of our house and most of our belongings and "hit the road" in our RV. We have spent most of the past 1 1/2 year traveling which was our retirement dream. My husband still works but he now works from home - where ever our home happens to be. And I do as much work as I can on my computer, working on websites and SEO which I've always loved doing. I have nystagmus which is unpredictable - some days good, some not so good so I work only as much as I can each day.
Because of these travels, we've discovered where we would like to spend the rest of our lives. We are now thinking about getting a place there (in Canada) - where the winters are mild and I'll be able to get our and about all year long.
We'll continue to travel with our RV for as long as I am able to, just not full-time.
The reasons we'll be settling again so soon is mostly because I need to find a new doctor and a new neurologist so that I will have regular doctors that know and understand my condition. And so that I can get and start on regular exercise routines other than just the daily walks that I do now. I want to start pool exercises and possibly yoga. I want to get a speech therapist and go to physio to learn what exercises I can do to improve and keep my muscles from deteriorating too quickly. And anything else that I can find that helps...
It was good to read that you are not letting this diagnosis ruin things for you either. We do what we can, making the most of each and every day.
Kudos
Joanne