We introduce Margaret Squire, coming to you from Australia. She lives far from here, but her story sounds familiar to many of us. She has always and still receives joy from working with her church and helping native animals.
My name is Margaret Squire and I reside in Australia. I live in a small country town in the central tablelands of New South Wales. I have lived in this area for over 50 years. When I was in my early fifties, I displayed the symptoms of Cervical Dystonia, a painful condition in which your neck muscles contract involuntarily. This, unknown to me at the time, was the first sign of Ataxia symptoms. It took quite some time for the Dystonia to be diagnosed. There was also a treatment of Botox and this was very helpful to me.
Balance and coordination problems were issues that I began to struggle with daily in my sixties. My neurologist had a fair idea of what was wrong with me and sent me for genetic counseling and testing in 2013. The results came back that I had Spinocerebellar Ataxia Type 6. I knew I had the same thing as my sister, even though I was the first in the immediate family to be tested. The neurologist and I worked out that Dad had it too. Further investigation of the family tree showed his mother, aunt, and uncle had it too. I have since discovered that my own uncle, dad’s brother had it, and 3 of his 5 children have it. One child was adopted, and one died young, so we don’t know about him.
As a younger person, I was a legal secretary, then I left work and got married and had four children in short order (eldest was 7 when the youngest was born). I went back to work at the local school where I was the secretary. These days, I volunteer with the local church helping prepare their bulletin, rosters, and any other typing needs of the church. Of course, informing my children is an ongoing chore. Their attitudes constantly change from denial to full acceptance of me having a life-changing condition, which may or may not affect them. They have chosen not to be tested at this time, until they display symptoms. If a cure is found, I am sure they will fall over each other to be tested and then seek the cure.
I also volunteered as an Australian native wildlife career and rescuer. Another thing I used to do was play the organ at the local church. I could continue doing up until recently when nystagmus and further coordination problems interfered. I have also had to give up the native animal care because of moving to a new house resulted in no longer having a predator-proof yard and appropriate housing for the animals.
Because of my love for animals, I still have a kitty cat, she who must be obeyed, Megga. Typical of cats, she is opinionated and superior, and remembers when cats were worshipped as gods in Egypt. Again typical of cats, she thinks this should be happening now. I know she does love me, but she wants to be the boss. Life for me would be very uninteresting without a furry creature around.
I am involved with raising Ataxia awareness with my church family and strangers around the world. When I “retired” from being the organist, people wanted to know why. So, I started a series of inserts in the church bulletin explaining my diagnosis and the impact of SCA 6, and to others similarly affected. I also joined some Facebook support groups for Ataxia, one of which I help with administrative duties, called Spinocerebellar Ataxia Awareness and Research Support Group. We try to impart information and support on a consistent basis, so that people are better able to cope with the changes in their lives.
I am by nature, a positive person. I think I inherited this from Dad, as well as the SCA6. I also have a very strong faith in God, and I know that He is with me always, through thick and thin. As you can imagine I still have my moments, and then I talk things through with my kids, particularly my daughters. I advise anyone who has this (or any other life-changing condition) to stay positive. It will not alter the outcome, but it will make the journey much more pleasant, for yourself, your careers, your family, and friends.
Thank you, Margaret Squire, for sharing the details of your family. And showing how you have focused on making your journey as pleasant as possible. Who wouldn’t want that?
Please consider sharing your story – whether you have Ataxia, are a caregiver, friend or relative. You may fill out the form below to get started.