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Why I Founded the Philadelphia Ataxia Support Group

Guest Author: Jay Armstrong, NAF Support Group Leader

At my 7 year olds son’s first baseball practice the coach asked if a parent would be willing to help with a pop-up drill. 

It was mid-day. Hot. And most of the parents were tucked deep in the shade.

The coach, a guy I went to elementary school with, toed the dirt and waited. 

“Any takers?”

Maybe it was our shared past or because we are Facebook friends or I’ve been a coach myself–but I felt for him. Behind him stood a dozen 7 year olds in a loose circle, sweating, kicking dirt, and throwing rocks at each other. 

Under his Phillies hat, with a pair of soft blue eyes, my son looked at me as if to say, “Come on dad, help.”      

Growing up, I played baseball, basketball, and soccer through high school and went on to play soccer in college. After college I became a high school varsity soccer coach and played beer-league softball. Albeit a little slower, I was almost 30 years old and still an athlete. Still part of a team.

And then in 2013, while on the soccer field, on a hot August morning–something happened. 

My eyes couldn’t focus on the rolling soccer ball. The field, the goals, the players floated. As if gravity did not exist on Earth. 

I sat down on the bench. “The heat,” I thought. I took a drink of water. My head thumped. I draped a wet towel around my neck and stared at my shoes. “Are you okay coach?” one of my players asked. 

I told my assistant coaches I needed to go inside for a few minutes to cool off. 

Inside the school I stood at the bottom of the staircase looking up. My brain shouted, “Move! Go!” But nothing happened. My legs didn’t work. As if an important cord that sends important messages from my brain to my legs had been cut.  

I grabbed the railing with both hands and pulled one foot onto the stept. Slowly working the railing, I pulled my body up each step like walking straight into a headwind, until I reached the top. 

I looked around. No one. I took a deep breath and began walking to my classroom. If I’m being honest–the staircase didn’t really scare me. But what happened next did. 

Somehow, someway the high school hall transformed into the deck of a sailing ship. I was swaying from one side of the hall to the other. The hall rocked up and down. As I swayed to my classroom my shoulders snapped back as if someone yanked my collar.  I stopped and looked around again. Still alone. What was happening to me? This yank-and-sway pattern continued until I unlocked my classroom door, dropped anchor, and collapsed on the floor.  My arms and legs were shaking. I was sweating hard. I was so tired. 

“I’ll help.”

A bit bow-legged, I walked toward the infield toward the coach and the ring of 7 year olds. 

The coach looked at me and smiled. So did my son. I smiled too. But my smile was just a gesture to hide my fear. I was alone.

Ataxia is unique to each person. Diagnosed 7 years ago, my disease has progressed slowly. I have a walking stick that I use occasionally, my speech has been edged with slurs, and I sporadically suffer from vertigo symptoms. But to the parents, players and the coach–I was a healthy looking dad. Maybe, at one time, an athlete. 

In many ways an athletic field is where I’m most comfortable. And in many ways it’s the place I most fear.  

The coach tossed a baseball. It hit my hand and dropped to the ground. The eyes of the players and parents pressed on me. I wanted to tell the coach, and anyone who would listen, that I have a disease that stole my athletic neutrons. So if I drop a ball or wobble as I bend to pick it up– I’m not drunk or unathletic. I have Ataxia.

We began the drill. I threw pop-ups to the players, they were supposed to catch the ball and throw it back to me. They miss most of them. So did I.  

In the first 6 years of my diagnosis, I only met a fellow Ataxian when, in 2014, I flew from Philadelphia to Las Vegas to attend The National Ataxia Foundation’s Annual Ataxia Conference

Being at the conference was both scary and comforting. Scary because Ataxia doesn’t play nice. Health care professionals and Ataxians talked bluntly about struggles Ataxians endure. And comforting because it was the first time I was in a room with fellow Ataxians. People who know what it’s like to lose coordination and wobble. People who know what it’s like to perform strange movements in public. It was the first time I felt understood.

Ataxia is a lonely disease. 

Only an estimated 150,000 Amercicans have Ataxia. A disorder unfamiliar to most, Ataxia doesn’t have a celebrity spokesperson or a television commercial.  

After Las Vegas, life went on and I dealt with my Ataxia the way you deal with a bill you don’t have the means to pay. I slipped it into a desk drawer and did my best to forget about it. 

As years passed my condition slowly worsened. My gait widened. I endured frequent bouts of vertigo. My nystagmus, an eye movement disorder, intensified. Falls became more frequent– one which resulted in a broken foot bone. And I felt a million miles away from the NAF conference in Las Vegas. 

So I began wondering if there were other Philadelphia Ataxians like me. People who can’t run up the Art Museum steps or who stumble along the New Jersey shore sands or who struggle to hold a cheesesteak.

I did some research and found there are support groups all over the country but none in Philadelphia. I contacted NAF and asked what it takes to start an Ataxia support group. 

I filled out some paperwork, provided some personal recommendations, and was spoon appointed Ataxia Ambassador of Philadelphia. 

We had our first in-the-flesh support group meeting in February. It was great. We laughed and cried and ate fresh baked Philly soft pretzels. Since then we have held Zoom meetings and have stayed connected through email. 

Meeting local Ataxians took me back to the NAF Conference in Las Vegas. I wasn’t alone. There are others, in the same zip code, just like me. Others who know the hot flash of embarrassment that rips up your chest when you wobble or stumble or fall in public. Others who know the blank stares you recieve when explaining Ataxia. 

How many times have you thought, “No one understands what I’m going through?” How many times have you been embarrassed by your disease?  How many times have you wanted to give up?

We can either choose loneliness or choose to connect. 

If we choose to deal with Ataxia alone  we might say to ourselves, “I have Ataxia.” But if we join a support group, we realize, “We have Ataxia.”  This realization, this simple shift in pronouns, is a sizematic one. You feel the power, strength, and support that joining a team offers. You feel less alone.  

If you’re struggling with Ataxia I encourage you to use the NAF website to find support groups you can join or even consider starting your own.  

Belonging to a support group, a team, allows you to connect with others who can understand your experiences. 

A team motivated to learn and grow. 

A team of Ataxians playing hard against an opponent unknown by many. 

Philadelphia Support Group Contact Information

Support Group Leader: Jason Armstrong
Bensalem, PA
Phone #: 215-378-3496

About the Author

Jay Armstrong
Philadelphia Ataxia Support Group Leader

Jay Armstrong is a published writer, award-winning teacher, speaker, father, husband, and Ataxian. He believes in the power of storytelling and that life favors the brave. You can contact Jay and read more of his writings on his blog 

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