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Susan Harris

Chapter 1: In the beginning
I wasn’t always this way. Growing up the daughter of a military man I can honestly say red, white and blue run through my veins. I love America and my family for years has fought vehemently for this glorious country. Allow me to say here how conservative my financial values are and have always been and always will be. Socially, not so much. But that’s a story for later. I never regarded my family as special. But now I know that’s not true. Yes, every cousin and aunt and uncle is successful. Not Microsoft successful but we are happy.

As a descendant of Abraham Lincoln what makes my family “special” indeed is that SCA5 is running through our DNA (thanks Bathsheba, his granny). My brother decided not to have kids because his symptoms started to emerge way too young – 19. I had no symptoms so I went along my merry way and had two children which are the biggest blessing to my family. The stress about did me in but I can’t even imagine my sweet mother having no grandkids to spoil rotten. 

My background was that of a pre-Olympic swimmer, so teaching swim lessons and water aerobics was a no brainer. I did it for the income and so I could stay-at-home with my children but little did I know how therapeutic water really was. 

Chapter 2: The benefits of water exercise
Do I really need to say a lot here? The benefits are well documented. Water helps with balance, strength and conditioning. Plus, there is a lot we can’t do (gosh, I’d love to go for a run or a speeding bike ride to feel the warm air blow onto my face…). I love my adult tricycle. It really entertains the neighbors with my doggie in the basket as I try to pedal FAST! Whoa, watch the feet as they slip off the pedals and I bruise ankles constantly. Bruising is not possible in the pool unless you run into the sidewalls. Please don’t do that. Trust me, it hurts. But do get in the pool. It doesn’t matter, instructor or not, just MOVE. Jumping rope, cross-country skiing, or simply
walking back and forth (which are movements you may or may not be able to do on land). Doing the exercises recommended by the Arthritis Foundation™ will benefit each and every person out there. It doesn’t matter what issues. Unless you are dead and if you are reading this you most definitely are NOT dead yet. Get out there and MOVE!!……………………………………

I am competing in master’s meets although I am now unable to dive off the starting block. I just start off the side and swim as fast as I can. At least I’m out there.

Chapter 3: Focus on what you can do
I never wanted to lament over the lost abilities. I am thankful for the abilities I do still have. So this swimming adventure is my own mental exercise. I also enjoy traveling and meeting new people. It is another gift from God. I will also be embarking on that adventure and cherishing each moment! Might be in a wheelchair, who cares. The finale is coming!

Chapter 4: Ataxia Sucks
We all have problems. Yes, that’s true. But ours are something we must confront every single day. It’s very personal to each of us. We are a gift from God and what we do with that is our gift back to God. Always look up. Get out there and move each and every day. Thanks for taking your valuable time to read this. You are kind and you are beautiful. Each in his or her own way PERIOD.

When Were You Diagnosed? Which Type (If Known)?

SCA5. 1999

How Has Ataxia Impacted Your Life?

It has completely changed everything.

What is One Thing You’d Like the People to Know About Ataxia?

It is so difficult to get through the day.

Share Your Advice – How Can Others Support Someone with Ataxia?

Just love support and patience.

How Has NAF Helped You or Your Family?

It has helped us navigate the often misunderstood public perceptions.

What is Your Ataxia Story?

As an organization dedicated to improving the lives of those affected by Ataxia, we believe that each story has the power to inspire, connect, and empower others. We invite you to share your personal Ataxia journey with us.

Are you here to read the personal stories, but haven’t yet joined as a member? We hope you find comfort in reading about the experiences of others on their Ataxia journey. We invite you to join as a member to receive a new member story each month. It’s free, and you’ll be kept up-to-date on the latest developments in the Ataxia community. 

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