Dona Wright – Dance Again

I was diagnosed with Ataxia SCA 3, through a blood test, in July 2006.  Like most of you, I was noticed stumbling by a friend on one of my many walks.  Out of my parent’s nine children, three girls inherited the bad gene from my father.  I didn’t know that he had this disease as he died at age 54 of a brain tumour.  So his funny gait and fall from a ladder at work were blamed on his tumour.

Now it’s time to tell my three children.  They all wanted to be tested.  Out of the three, one tested positive.  This has been the toughest part for me of having this disease.  I believe it’s made me stronger, not only for myself but for my family.  I can take the weak and spastic legs and the vertigo head, and the falls, but knowing my child may go through this is torture.

How do a mother and housewife go about trying to help herself and her family cope?  I need to show them that I’m still ME.  In the years before my diagnosis, I was a very active person. I loved the outdoors, very much enjoyed walking/running, long bike rides with my husband and in the wintertime cross country skiing.  Being Portuguese, I loved playing soccer. I coached two of my children and in my mid-thirties played on a women’s team.  You’d think with my European background I’d be a star player.  No, I was one of their worst.  I can blame it today on my Ataxia.

How do I go about trying to help future Ataxias?  Well, I love to paint artistically.  I don’t sell my art. Just produce paintings for family and friends.  Mostly as gifts.  I’ve been painting, seriously, since 1999.  But don’t have the nerve to sell.  I decided to have a silent auction featuring my art.  I painted madly for a year and produced 40 pieces.  20 went online and I had all 40 pieces shown at home. The fundraiser happened on October 2019.  I invited family, friends and neighbours.  We sold all 40 pieces and raised over $30,000.  The money went to Ataxia Canada.  I was so nervous.  I put myself out there. And I survived.

Today, amazingly, I can still paint.  I’ve lost the ability to write legibly and I cannot wear anything that has buttons. I go by the saying “use it or lose it”. I no longer can ride a two-wheeler but love my trike.  I exercise daily and now ride my stationary bike.  I’m lucky to have a physiotherapist who comes to my home.  Her theory is to keep me using a walker for as long as possible.

For my 59th birthday this year, all I wanted from my husband was to dance again.  We now waltz every Saturday.  My highlight of the week.

My question is where do I go from here?  Yikes!