Embracing the Tides of Time: A Journey Through the Passage of Moments

Ataxia Awareness3

One day, you’re 17 and you’re planning for someday. And then quietly, without you ever really noticing, someday is today. And then someday is yesterday. And this is your life.

John Green

Does anyone else feel like this year is passing by quicker than any previous year? 

I had this exact discussion with my acupuncturist last week and she agreed, that this year has just disappeared.  Where did the time go?  And honestly, I don’t know if I should feel happy, sad, or indifferent.  I guess it really doesn’t matter how I feel about it because it’s one of those things that JUST IS. 

It seems like just a couple of weeks ago I was starting to put together ideas for this platform!  And here we are.  A few months after the launch, I am very happy with the momentum!  We are starting to get more people willing to share their stories and in turn, we are raising more awareness for movement disorders and Ataxia.  But I am always hoping more people will be willing to share their voices as we continue to grow.  Remember, you don’t need to be an award-winning writer, just be honest and share your experience.  If you would like to talk about how you can be involved, please contact me directly HERE

Let’s talk for a minute about where I am, in terms of my progression and what I am doing to combat that.  Physically and mentally, I am feeling pretty good.  But I do know my balance is a little bit worse than last spring.  I have been slacking on my physical therapy “at-home” exercises and I have not been going to my weekly acupuncture appointments.  Not to mention just everyday life.

Over the last few weeks, I have noticed I am tripping and stumbling more.  So, I decided I needed to get myself back on track.  Below are the steps I am taking:

Physical Therapy:  I have mentioned before but I have 2 amazing therapists who specialize in movement disorders.  I just started a new session a few days ago and am excited to add some new challenges to my routine.  My suggestion to everyone living with Ataxia, whatever your degree of progression, is to get into a routine for your mind and body.  Please check with your medical professional as to your best options.

This past Monday, Amber, one of my therapists, asked me a question or made a statement that I had never thought of. 

Or I should say, I’ve never thought of it from this perspective.  I think it is an important point for everyone like me to remember.  She said something like “I’ll bet it’s hard always having to remember to dedicate time to your exercises.”  Not the exact quote but close enough.

If you are just a regular person, with no medical conditions, and you decide to take a couple of months off from your routine, it’s hard but you can get back into shape fairly easily.  But, if I take time off from my routine, I may never get back what is lost.  And that is why it takes so much effort to just stay at a baseline. 

Acupuncture:  I wrote a previous article and I hope everyone has read that.  Of all the things I have done in the past year, for my symptoms, this must be towards the top of the list.  But, because insurance is not yet to the point where they recognize the neurological benefits, I am out of covered appointments.  I don’t want to get into a debate or start a discussion on the insurance industry.  My hope is that someone out there will read this article and raise awareness of the neurological impact of acupuncture. 

Diet and nutrition:  I know I have talked about the importance of proper nutrition in our minds and bodies.  If you have additional questions, please contact our contributor, Kelly Aiello, or reach out to your own medical professional.  It takes effort and is not always fun, but it is so important to fuel your body correctly.

Gym/Physical activity:  This can be a gym you belong to, a personalized setup at home, or just something as simple as a daily walk (if you can still do that).  And if you cannot, I’m sure you know what works for you personally.  The goal here should be to strengthen your muscles, especially your core.  And to get your heart rate up.  Good advice to anyone regardless of your condition.

Neurofeedback Therapy:  From Forbes Health, Neurofeedback therapy is a noninvasive procedure that measures a patient’s brainwaves and provides the patient with real-time feedback about how the brain is functioning. It’s a type of biofeedback, which is a mind-body technique that aims to help patients gain voluntary control over certain body functions that are typically involuntary (such as heart rate, muscle contraction, or brainwaves). Biofeedback uses electronic instruments to convey to the patient certain physiological processes happening in their body that they are typically not aware of.

I was recently referred to this as I was reading about how the deterioration of the cerebellum can cause mood swings.  And I am especially curious to know if that has anything to do with my head tremors.  In my previous article, I talked about my issue with head tremors.  I don’t know much beyond that as I am on a waitlist but as I go through it, I will update everyone.

Hopefully, this helps you to understand the steps I am taking.  Maybe your treatment plan is slightly or completely different.  Remember, something is better than nothing! 

Like the image for this article, time is not unlimited.  For me, I am almost 51 and I had never imagined that this would be my life.  But it is what it is, and we all must adjust to our own realities.  This isn’t easy, and it is going to take massive amounts of effort.  Always remember, you are not alone in this.  Lean on your family and friends, your local resources, the Ataxia groups, and the community we are building here! 

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 to inspire positive change.


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