Ataxia Symptoms and Treatments

Ataxia Symptoms and Treatments6

There are several institutional websites with great information on Ataxia.  For this article, I am using points from Mayo Clinic, National Ataxia Foundation, and Johns Hopkins Medicine.  I have personally attended appointments at Mayo Clinic, both in Minnesota and Arizona, and Johns Hopkins, so I am confident in using their information to form this article.  I have had appointments in many other great institutions but for the purpose of this post, I will just reference the ones above.

Ataxia symptoms and treatments are a somewhat broad focus since the causes can be from a one-time occurrence to something we are born with.  I mean, just look at the NFL last season.  For the first time, to a national and even worldwide audience, we started hearing about Ataxia.  Mostly due to what happened to Tua Tagovailoa and the Miami Dolphins.

Mayo Clinic says:

“Ataxia describes poor muscle control that causes clumsy voluntary movements.  It may cause difficulty with walking and balance, hand coordination, speech and swallowing, and eye movements.”  This is what you will read when you do a search for Ataxia symptoms.  Personally, I have always had issues with balance and coordination.  But before my diagnosis, I noticed an issue with my handwriting.  I was working at a bank and at that time, around 1999, we had to do all loan documents by hand.  It’s hard to imagine with technology today!  Anyway, I started to struggle with my hand shaking and this was new to me.  As I grew up, I loved drawing and was complimented many times on the way I would write.  So, for me to start shaking while writing was surprising.  And if we fast forward to now, I completely lost my ability to handwrite somewhere around 2015.  In addition, I started to have head/neck tremors in 2011.  They were on a cycle, and I would get them every two months.  But my last tremor was in May 2021, and my hope is they are gone forever! 

I’ve always considered myself to have a milder form until my big accident in 2018.  I had two major falls in a span of only a few days; bumps, bruises, and a few broken bones.  My right side was partly immobilized, and I needed help doing the most basic of things. 

Because of my situation,

I became very depressed, and in doing so, my condition got worse.  I gained weight (quite a bit) and could not get on a regular sleep schedule.  It was miserable but I do believe it also helped me to realize what I had or have, to do.  If I kept on that path, I could almost guarantee I would be using a walker or wheelchair by now.  I am happy to report I am not on that path today.  And I will detail those reasons in a later article on the steps I took to feel like I do today.  But don’t get me wrong, I still have difficulty with balance, coordination, and speech.  But I am adjusting and doing what I can to slow the progression. 

According to Johns Hopkins,

“There is no cure for the hereditary ataxias. And there is no medicine to treat the specific symptom of ataxia.  If ataxia is due to a stroke, a low vitamin level, or exposure to a toxic drug or chemical, then treatment is aimed at treating those specific conditions.”

I have hereditary ataxia, so I can only speak to my specific condition.  There is a new treatment, recently approved by the FDA, for Friedreich’s Ataxia.  And I will leave that subject to future guest contributors on this site, to give their stories, since I do not have FA.

For all other hereditary forms, we are patiently waiting for a treatment or cure.  In the meantime, we all must work to slow the progression of this condition.  Johns Hopkins says, “Research is being done on cerebellar and spinocerebellar degeneration, including work aimed at finding the cause(s) of ataxias and ways to treat, cure, and ultimately prevent them.”

I personally am going to speech therapy, physical therapy, and acupuncture.  In addition to those, I am utilizing home and gym programs.  When I combined proper nutrition and a better pattern of sleep with those other therapies, my outlook changed.  The other component I feel is cannabis.  Using a small amount daily, or every other day, has calmed my nervous system and stopped those, sometimes violent, head tremors. 

Every person is different and everything I do may not yield the same results for your condition.  But start by acting or steps; even just small steps until you discover what is right for you.  This should involve conversations with your medical professionals, family, and loved ones, and all the educational resources you can find.  And of course, keep coming back to this site as we will keep updating and bringing new voices to learn from.  It may feel at times like you are alone but that is most likely not the case.

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