Elaine Evans kindly shares her story this week. Elaine joins us from lovely Australia and is a regular attendee at our weekly support group.
My Ataxia story begins in Malaysia. In 2004 I organized, what my husband and I called our “magical mystery tour.” We were very keen travelers and I wanted to do something special, so secretly arranged the trip. We traveled through six countries. Our last destination was Kuala Lumpur.
We were out wandering the streets when we came across a beautiful red Ferrari on display (surrounded by ogling men of course). To my great embarrassment, down I went onto the road. I broke a couple of small bones in my hand, but nothing more really than wounded pride.
On return to Australia, I went to my regular doctor for a checkup. He was concerned that my speech seemed slurred and sent me for a brain scan. Yes, I had had a little stroke. Nothing serious, but as weeks went by, my doctor became concerned that I was not recovering sufficiently, and I mentioned that I was now scuffing my feet.
I had until then been a very active woman, raising three children, and helping my husband in our businesses.
I was referred to a neurology specialist. The first specialist misdiagnosed me and said I had muscular myopathy. I was worried as I had never heard of this.
Anyway, as time went by, my symptoms took a different path to those expected. My doctor sent me to a different neurologist, who after talking to me, sent me for an MRI. I learned that he was looking for tumors, and was thinking I may have MS. The scan came back clear I was happy to learn, but then he said, “I am sure I know what your problem is”. He wrote down Spinocerebellar Ataxia. I had never heard of this and flippantly asked “Can you give me a pill to fix it?”. “No”, he said, “…there is no cure…and this is what will happen”.
I sat frozen to the spot, taking in all he was saying, and inwardly panicking! I drove home in a daze really and told my husband “I don’t have muscular myopathy”. “That’s good”, he replied. I told him, it’s probably worse.
And so, began my journey. I walked with the help of a walking stick. Then two.
My next mobility aid was a rollator, which I both loved and hated. Having been active all my life, I resented having to rely on anything to get about. Then the falls started. I have had many, mainly because of not really realizing my limitations. I would reach for something, turn too quickly, walk into a dark room, and end up on the floor. My poor spine has taken a lot of damage. I still fall, but luckily there is usually a chair or something soft to land on.
I have a wonderful pain management specialist, who sends me to intensive therapy when I need to go. I get physiotherapy, speech, and occupational therapy, and one hour twice a week in the heated pool. My last sessions improved my strength and balance by 30%. We were all very impressed with me!
I decided this year to adopt a motto of “yes I can” and to that end have planted a rose and flower garden and several vegetable gardens. My husband designed our house especially for me, with wide hallways, doors, etc., and all on one level, both indoor and outdoor pool is solar heated and easy access for me. My gardens are all in raised boxes for ease of gardening.
I found it very difficult to tell my children…all grown now with families of their own, as it appears it may be genetic. My parents have passed, but with hindsight, my mother may have had SCA.
The things that bother me a great deal, apart from the lack of ability to walk independently, are my slurred speech and my vision. I rarely drink alcohol, but I know “the looks” from people who think I am drunk. I also find it frustrating when my husband can not understand me when I think I have spoken clearly. I get double vision, usually when I am tired, and no longer trust myself to drive my car. I would be devastated if I harmed anyone because of my vision, or slow reaction.
In summary, I am learning every day, to make the best of this life I have. We travel extensively around the world, love cruising as it is easy….when and if we can.
I had a dear friend who was diagnosed with cancer at the same time as I got my diagnosis, and he has been gone seven years now. That is why I feel that I was the lucky one…if I had to get anything!
I am still here, to love and be loved, to watch my children and grandchildren grow and achieve.
I may not be able to participate in their lives as I would have liked, but I do at least participate.
Do not let depression get hold of you, stay strong…we Ataxians have an inner strength, we just have to learn to harness it.
That was brilliant Elaine Evans! You’re an amazing and strong woman. It’s been a pleasure to get to know you.
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