My Journey

My Journey3

Step into my shoes and walk the life I’m living and if you get as far as I am……. just maybe, you will see how strong I really am.

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I’ve always liked this quote and more than ever, I feel it applies to my journey directly.  As if it were meant to happen, one of the Ataxia groups on Facebook had this quote with a very powerful image of a wolf.  The power of the message along with the image just hit me differently.  As if it were meant to happen, the timing couldn’t have been better, since this was around the time that I was putting together the concept for this website.

Ask anyone with this neurological condition what their long-term outlook might be. 

You will probably get many different answers.  It all depends on the strength inside of a person.  Negative or positive, the choice is up to you as an individual.  And I am talking specifically to those of us that were born with Ataxia.  Everyone has different strengths but sometimes they just need the right situation to show what you can do.

Personally, I have always strived to show what I can do.  And it has not always been easy!  Growing up, I was a very shy, awkward, quiet kid, and that made things difficult.  Yes, everyone feels that way, to some degree, but I know that I took it to another level.  At least in my own head.  My inability in learning to ride a bike, trying to dribble a basketball between my legs, junior high gym class, learning to swim, are just a few of the difficulties I encountered.  And much of the time, I had other kids making fun of me.  That just made me go deeper into my shell.  I could not understand why I always felt slightly different or not as in control. 

When I finally graduated high school and was preparing for college, I knew I had to make a change.  I could start over fresh where no one knew me as that quiet kid.  Yes, there were a handful of hometown people at that school or ones nearby.  But, for the most part, no one knew me and that is completely what I needed.  The unknown was scary but also exciting!

I am a big believer in the saying “Everything happens for a reason.” 

And I was so lucky to end up in a perfect situation for my internal change.  The people I met that first week are still some of my best friends today.  And my feeling of being slightly different seems to fade.  My coordination issues were still there but it just wasn’t as impactful during these years.  I attempted to play a couple of intermural sports but was just not that good and it took me back to my high school years.  So, I decided against doing any more of those activities.  I just assumed my coordination was never going to be where I wanted.

Fast forward to when I was 28 years old.  I injured my back moving some furniture around the house.  After a month or two of some pain, I decided to go to a back specialist and find out the extent of the damage.  During her examination, she wanted me to do some basic coordination exercises.  I remember trying to do the heal-to-shin exercise and it was not smooth. 

My heal could never do a straight line up or down but I personally didn’t think that was abnormal.  “It has always been that way” is what I told her.  After trying a few more, she recommended I see a neurologist, and get an additional opinion.  I took the referral and set up the appointment.  And remember what I said earlier about everything happening for a reason?  She referred me to a neurologist that just happened to be married to one of the top Ataxia doctors in the nation.

“Ataxia, what is that?”

After my initial appointment and some testing, Dr. Bernard informed me of the diagnosis.  I just remember sitting there hearing the news.  My initial thoughts were all over the place.  Shock, fear, and even the thought that it was really nothing, all ran through my head.  This did make sense to me as to why my coordination was off my entire life. 

She wanted to run some additional tests and recommended I go to the University of Minnesota and see her husband, Dr. Gomez.  Initially, they thought I had A-T or Ataxia Telangiectasia.  Because of that, I set up an appointment with Johns Hopkins in Baltimore, since they specialize in A-T.  But all those specific tests were negative for that form of our condition.

I have been to multiple clinics and hospitals across the nation trying to find out what form I have.  Back in 2013, I was told it was Syne 1 after another set of genetic testing.  But after an appointment with a new neurologist last fall, I am currently waiting for results from yet another genetic test.  Without a specific form, I am having a more difficult time applying for clinical trials. 

This brings me to my current situation.  Due to my Ataxia progression, including balance and speech; and a huge accident in 2019, I felt I could no longer be a confident financial advisor.  It was not fair to my clients or to myself.  After thinking long and hard about what I wanted to do, I agreed to sell my practice last summer.

“What do I do now?”

Imagine for a minute what you would do in my situation.  What would you do knowing that you have a progressive disorder and your options, going forward, are limited by that?  Would you keep pushing forward despite the challenges?  What about just giving up and accepting it, knowing this is all there is? 

I am not the type to give up that easily.  So, after a few months of just relaxing, I started to do some research.  Opening up to all the options that I thought were realistic, but nothing was exciting me.  Whether it was internet marketing, drop shipping, or whatever; I wanted to find something I could do, given my situation. 

I have been talking for years about a book I was writing.  “Maybe that is what I should focus on.” Additionally, I gave a lot of thought to starting a foundation focusing on neurological issues.  But sometime over the winter, my mom said something to me about a blog.  At first, I wrote it off and thought it was a thing of the past.  But that idea started to stick and over the next couple of months, I started to focus and narrow down what I would like to do if I started a blog or website.

“How can I set myself apart?”

I have always had an interest in general mind and body wellness.  And how holistic wellness can affect my own progression either negatively or positively.  Suddenly, the idea hit me, and I had a concept.  I want to increase awareness of ataxia and at the same time, provide some holistic wellness tips to people in general.  But to do this right, I wanted to bring in “guests” that can speak to their experience and knowledge in some or all these areas.  On top of that, I will be having my own care team, sharing my progress, so that we might expand the awareness of what can be done.  It is one thing for me to share my stories, and explain what I think are good wellness tips.  But adding experienced voices to all the areas, in addition to my content, is going to be very valuable.

This is just a very brief introduction to my story. 

My hope is that everyone can take away valuable information in all these categories.  Remember, small steps or daily improvement will have much more impact than major changes.  One or two big changes are much more difficult because it is too much of a shock to our system.  Remember, if you want to live a healthier life, it is up to you to make that happen.

Please read and enjoy the articles on this website.  Please join the email list so you are notified when someone posts new content.  And for those in the Ataxia community, I invite you to add value.  The more we can get attention to this condition, the sooner a treatment or cure will be found.  Additionally, if you feel you can contribute to any of my categories, don’t hesitate to reach out.  Thanks so much and I hope your journey takes you everywhere you want to be!

Share your thoughts and/or comments and join our community today.  A place where we empower you to build a healthy lifestyle and raise overdue Ataxia Awareness.  Experience transformative storytelling and share your story for inspiring positive change.


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