Ataxia Profiles: Faces Of Ataxia...Yesenia Ramos

     For today's Ataxia Profile, we will be introduced to Yesenia Ramos.

     Yesenia is currently twenty-three...but received a diagnosis of Friedreich's Ataxia when she was six years old. She lives in Edmond Oklahoma with her parents and an older brother who also has FA. Yesenia's heritage is Mexican...of which she is very proud.

     For Yesenia, the road to an early diagnosis began with multiple sprained ankles and a general sense of unbalance. These memories are actually rather faint for her...but her parents, having gone through something similar with Yesenia's brother, recognized the signs and took her to be seen and tested by a Doctor. She does, however, remember growing up with the effects and increasing changes that were brought about by FA...and feels the reality that it robbed her of her childhood and teenage years.

     Yesenia now writes poetry...and as a poet has had a book published, titled Emotionally Deteriorating, Emotionally Distressing: Who I Am With FA. The book (pictured above) was printed last March and is currently available on Amazon. Good for you, Yesenia! Writing is a great and creative way for us to release and communicate our thoughts/feelings.  She has also written a poem recently about her FA and how it generally leads her to feel. She has titled the writing Sick At Heart and would like to present it to you in this blog...so here it is:

FA is all that I am anymore

all I have to offer people is a big ball of symptoms

I am as burdening as a nonstop war
my life is a sore, truthfully 
I take everything with hurt on the side
it’s outrageous 
I’m truly empathetic 
FA also makes me less “useful” 
like an imitation of a drunk with the awareness of a hawk
I'm learning to accept my limitations
but I'm struggling with accepting the reality of my limited life and brutal future  
16 years later and the only thing that’s changed is my emotional tumor 
It’s so easy to feel like a bad friend for needing more help than others
its as if my reality was abruptly full of highly sensitive ulcers 
no one teaches you how to grieve the life you should have had
Friedreich's ataxia defines me 
it’s literally all over my DNA
it makes me sick at heart

Yesenia has a poetry page on Facebook...and the poems about FA that she has shared on the page have helped people to know and understand the neurological disease. That is Yesenia's main purpose of posting her poetry...to raise awareness and widespread understanding. We admire your efforts and are one-hundred percent behind you, Yesenia!

Patience...patience! It is what Yesenia would like to pass on to anyone who is newly struggling. Give yourself a break...take a deep breath...it won't be easy but there will always be a way for those that are patient.

Thank you for sharing with us Yesenia...your story and poetry are informative and inspiring. I hope that it goes well for you.

Until next time my friends,

Jason

Ataxia Profiles: Faces Of Ataxia...Mary Scheetz

   
     Hello Everybody, it's time once again to bring to you another Ataxia Profile...and this time I will be putting my focus on, and introducing you all to Mary Scheetz.

     Mary lives in Portland, Oregon...and twelve years ago, she was diagnosed with Spinocerebellar Ataxia number Eight. However, if we look back to the nineteen-eighties, that's when the process that would lead to her eventual diagnosis seemed to begin. At first, Mary started experiencing food allergies...and then just a few short years later, she developed prisms in her eyes. Sometime around the year two-thousand, Mary noticed that her left knee had become stiff...and she would often fall when stepping off a curb or going downstairs.

     Mary consulted a Chiropractor...but after trying for several years to follow their advice, and finding little relief, she turned to an Orthopedic surgeon in two-thousand-and-eight. The Doctor saw something unusual and immediately sent her to see a Neurologist. Upon the initial exam, the Neurologist diagnosed Mary with Multiple Sclerosis...but after doing an MRI and bloodwork, Mary's diagnosis was changed to SCA 8.

     Currently, Mary likes to stay active and attends an exercise program called Rebel Fitness twice a week. It is a program that has mostly been set up for patients who have Parkinson's...but they will work with anyone that has mobility issues. Through the activity of boxing, they focus on movement and balance...but they also offer classes that concentrate on vocal skills. Among these two, are classes offered that focus on dancing, nutrition, yoga, Thai Chi, and golfing techniques. Mary also enjoyed attending a water aerobics class for a season...and moved into this form of exercise when her loss of balance no longer enabled her to attend the work-out class that she had previously been doing. Eventually, she needed to stop attending this class as well...when the dressing room, walking on the slick deck and no longer feeling comfortable in deep water became issues for her.

     Mary also really appreciates being able to attend an Ataxia Support Group. She feels that a group that she can attend...where there are people who really understand what she experiences and goes through on a daily basis...is a precious thing!

     One of the lessons that Mary has learned in this...to refrain from being so hard on herself. I hear you Mary...and this can be a tall order. We can quite often make our situation worse, (and by we...I am thinking strongly of me)...so this thought is ALWAYS a good reminder. We need to practice patience...not just with ourselves, but with those we come into contact with that act in negative ways...who, more-often-than-not, possess no knowledge concerning Ataxia. If, after educating someone...they still choose to see you as faking to gain attention, or as a hypochondriac...then, as Mary says...that's their problem.

     Mary would like to leave us with one more thought, or piece of advice.  We all need to find someone, or someones, to talk to. Having people, such as through a support group or the many Facebook groups, is a very valuable thing!

     Thank you for the encouraging story, Mary. It has been a privilege and an honor to write your story...and I am happy to present it to the Ataxia Community to read...as we all learn to know you better.

    As we continue to work together...and every time we share our stories with one another, Ataxia loses and we gain. We gain both in encouragement and strength...so, let's keep those stories comin'! If you haven't yet sent me yours then please consider doing so!

    That's all for know...take care, be safe...and until next time my friends...
    Jason

Ataxia Profiles: Faces Of Ataxia...Travis Guy Lebel

     It has truly been a joy and an honor for me to write the Ataxia Profiles over the past several months. I get to know each person that I have written about...sometimes probing deeper with the people being featured each week in areas of interest...so that I can do as thorough a job as possible.

     Making that extra inquisition brings us to Travis Guy Lebel...and the title that Travis would like to be applied to his Profile. Which is: Never Give Up...and Always Find A Way

     This is a perfect title, and an excellent way to begin this Blog...so thank you, Travis.

     Travis has been dealing with Spinocerebellar Ataxia since his birth. An official diagnosis didn't come until several years later...but Travis confides having some difficulties very early on and his parents identifying quickly that something wasn't quite right. He didn't learn to walk on level ground until the age of fourteen-to-sixteen months...and didn't walk outside until over the age of two.

     For several years...between nineteen-sixty-seven and nineteen-seventy...Travis was taken to be seen by numerous specialists...but does not remember exactly when he first heard the term Ataxia. He grew up knowing that he was different...and many years later, while undergoing a routine physical exam, he asked if he could be seen by a Neurologist. Travis wanted to discover why his balance and coordination were off....and after many tests, numerous negative results, and four different Neurologists...he was given a diagnosis of an unknown SCA.

     Travis also recalls...( I was going to add with fondness, but that just doesn't seem to fit)...that he suffered from a constant bruising of his shins up until about the time he began High School. In reflecting on his childhood, Travis also remembers that he never possessed the balance necessary for him to learn to ride a bike.
 
     Travis attended High School at the Bellows Free Academy...were he was the captain of the junior varsity baseball team. He attended Southern Vermont College, and it was during this time that Travis felt his Ataxia go somewhat into a state of remission. Even so, Travis has always made a point to adapt to defeat any obstacle that stood in his way...and to find a way to accomplish the things in life that he wants for himself. He graduated with an Associate's of Science in Bussiness Management,

     He maintained a full-time job for a little over thirty years...finally giving in when Ataxia made work too difficult...and then filed for Long Term Disability. Nonetheless, Travis maintains the attitude of work that he has always possessed. He has also been a longtime weight lifter and continues to work out three to four times a week.

     In closing, Travis reflects that none of the early Physicians could come up with any answers...so he just had to adapt and learned to make his situation work for him. He knows that life is never easy...but maintains that nothing can stop you from continually adopting a positive attitude. Travis remains happy and enthusiastic. His motto again, which bears repeating...and the title of this blog about Travis's life, is: Never Give Up...and Always Find A Way
   

     Thank you, Travis! It has been a pleasure...and until next time my friends...
     Jason
     

Ataxia Profiles: Faces Of Ataxia...Celia Baculi

      For today's Ataxia Profile, I am featuring a lady from Salem Oregon. She and her husband Ray attend the two same Support Groups that my wife and I attend...and it is my pleasure to introduce Celia Baculi to you. I am going to let Celia tell you her story...in her own words.

     I was 52 when I was diagnosed, in 2016.    I was diagnosed based on my MRI and symptoms.   I am a medical mystery--I have been genetically tested but I was negative for everything.  I am hoping to retest in a few years and have a specific diagnosis then.

Before my diagnosis, I volunteered at the local high school in pre-college planning.  It was brutal to give that up, but eventually, I became too tired to spend a whole day or even a few hours at school.  I can still sew/knit/crochet, so I try to do a little bit each day to keep my fine motor skills up.  

Before ataxia and children, I was a manufacturing consultant and got to travel around seeing factories (one of my favorite things).

I speak Spanish well, and it is on my bucket list to spend some time in southern Mexico or Guatemala in the Mayan culture.  I know a lot about Spanish books for children also.

I go to the gym several times per week with my husband, and I also do physical therapy, strength training, and Pilates training.  I also take Riluzole, 4AP, CBD, and I would like to try Tanganil. My sons and husband tease me mercilessly about being a pothead, but the CBD helps me sleep.  I know a lot about importing medicine (there is an exception in customs law), and I am very good friends with Mr. Google. I do tDCS regularly and wear my balance vest.  I wear sticky socks all the time and they help! Handwriting practice also helps when I remember to do it.

I attend the support group meetings in Albany and Portland (Oregon) when I can.

I no longer drive, so my high school student son takes me to some appointments.  My family has been an absolute rock with this difficult, unplanned turn of events called ataxia.

If I could give advice, I would repeat what a dear friend said to me a long time ago, which is to allow people to show how much they love you!  I would also say to take things one day at a time like you were parenting a small child. Make it through today, and let tomorrow take care of itself.  We are really lucky we are living today, with hope for defeating this monstrous disease, and I am hopeful that something will be discovered that will benefit us.

Thank you, Celia...for sharing your story with us. We all continue every day to live, and strive to learn, the best ways to deal with Ataxia. Your story has become an important part of that process.

Until next time my friends, Jason