Ataxia Profiles: Faces Of Ataxia...Jake Thompson

   
     Hey everybody! This week I would like to introduce you all to Jake Thompson. He is a young man with FA...but I will let him tell his story...

     My name is Jacob Thompson. I was diagnosed with Friedreich's Ataxia when I was twenty-four-years-old. Growing up, I loved to play sports. I played baseball, hockey, and football competitively but also enjoyed water sports, downhill skiing, tennis, and pretty much anything else with a ball and competition.

      Towards the end of high school, I began having trouble performing athletically at a high level. My max lifts went down, my forty-yard dash got slower, and it was difficult for me to track fly balls in the outfield and make accurate throws. I had always been one of the strongest and fastest kids in my school; as a junior in high school. I even placed first in my weight class in a Tri-school lift/run/jump competition.

     As I began to struggle to perform, I also struggled with my identity. I had always been identified by my athletics and was no longer sure of who I was. My dreams of playing a college sport became just that...a dream.

     I went off to college and wasn't good enough to play on any of the teams. It turned out that God had other plans for me. In high school, I was part of a ministry called Young Life that made a big impact on me; my leaders had been my freshman football and baseball coaches.

     By my Sophomore year in college, the doors had opened for me to lead Young Life and to coach high school football. I also began making music and doing spoken word poetry to bring hope and light to people who were in a dark place. Little did I know, my music and poems would soon be speaking to me.

    Throughout college, the difficulties that I experienced performing tasks that used to come so easy for me continued to increase. I found that I could no longer skate, use rollerblades, or slalom ski. I didn't fully understand, but I also didn't think too much about it, as I was still able to enjoy playing games of pick-up football, basketball, and tennis.

     The final straw came one day when I was twenty-four, and I was trying to paddleboard in the ocean.No matter how many times I tried, I could not keep my balance. I decided to go and see a Physical Therapist, wondering if maybe I had experienced too many previously undiagnosed concussions that were now impacting my balance.

      Seeing the PT led to several appointments with a Neurologist, a CT scan, and numerous blood tests. As a result of all the testing, I received a diagnosis of Friedreich's Ataxia.

     After my diagnosis, I struggled with feelings of depression, and hopelessness. I didn't feel like anyone could relate to what I was going through, and I was devastated to think that all of my goals, dreams, and aspirations were now dead or dying. I felt defeated when I thought about all the things that I wouldn't be able to do with my wife and kids.

    Eventually, what I came to realize is that I now had two choices before me. I could sit around and feel sorry for myself about what I no longer had, or I could make the most of what I did have. Through all of this, my faith in Christ has shown me that no matter what, God has a purpose for my life. With His help, my intentions are to fulfill that purpose.

     I have put my experiences with Ataxia into a hip-hop album titled Pressure Makes Diamonds.

     I am also working on several new creative projects in which the songs, poems, and videos are made with a two-fold purpose in mind. One intention is to bring encouragement to those who are facing trials, especially those that involve Ataxia and other rare diseases. I know that my experience of feeling hopeless is common among those with such a diagnosis.

     The second intention to these forthcoming projects is based on my hope and desire that they will help to raise public awareness. It is also my dream that this, in turn, would lead to further developments in the area of treatments. I am not sure where this all may lead, but my ultimate vision is to establish a foundation that utilizes both multimedia to raise awareness and takes action in the fight against rare diseases.

    
     Thank you for sharing with us Jake. You have a beautiful family... and a very inspirational story and we wish you great success in your future endeavors.

     That wraps up another Ataxia Profile for this week. Thanks everybody...
     until next time...stay safe, Jason
                                                                                                                                                 
                                                                                                                                                                                                                                                                                                                                                                                                                                                             

     

Ataxia Profiles: Faces Of Ataxia...Krystal Schulze

     Hey, Everybody...I hope you are all doing well. In all the past Profiles, we have been introduced to several different forms of Ataxia which have all been genetic. For this week's Ataxia Profile, we will read the story of someone who has acquired Ataxia from another source. I will let Krystal tell you her story.

  

I was diagnosed with Ataxia via a brain tumor at 18, which had been slowly growing since my junior high years.  My tumor was a Juvenile Philosophic Astrocytoma which of course led to removal, and boom my Acquired Cerebellar Ataxia (ACA) was born halfway through my senior year.  I was told that mine was not progressive but later learned that it was. Approximately 20% of them are...and I won!

I was in high school and was very athletic, at the time all this went down (I use that phrase a lot cause it was a major robbery!)  Started my 14th year of softball, ran track, cross country and was on the drill team. I was also in co-op, which allowed me to work retail at 2 stores in our Outlet Mall.  I had luckily gotten to experience my junior prom a few months before. I also cherish that I received my driver’s license 6 months before and I drove my baby silver, a Chevy S10!

Of course, I don't do any of that anymore except exercise to keep from atrophy.

I have always loved anything to be creative using logic.  When I graduated, in between therapies, I taught myself HTML, Java, Dreamweaver with Dragon, and then Python.  For me, music is always key to keep me focused and productive longer. When I was 30, I was pregnant with my now 8-year-old daughter Alyssa, who is my world!  At that point, I was advised to do almost nothing. I used that time for an online college because I knew I wanted to fully be involved with my baby. So I got 2 degrees (business administration and graphic design)  Of course, everything I've mentioned above are certainly my favorite ways to keep me going!  It may sound silly but my daughter gets a kick out of playing cards or Jenga with me. It can be frustrating for sure but those fine motor skills are tested and keeps you from weak joints and atrophy of the hands. 

My disability has taught me to be kind but not to take crap from no one!  Be yourself and that will weed out those who do not accept you or let you have or express your feelings or opinions.  I certainly have the open-mindedness to listen to you. They should also listen to the other side. We will all have different opinions and ideas, in an unsure world of what we deal with, is it worth it.  We always need to preserve our energy, pick your battles wisely! 

Ataxia Awareness is something very important to me.  I have moderated several Facebook groups. First was Ataxia Planet, then Our Ataxian Lives and currently branched out trying also help people understand there many ways someone can acquire ataxia at any second.  This group is Acquired Ataxian Survivor Support.

Again my advice, We always need to preserve our energy, pick your battles wisely! 

That is a beautiful picture of you and your daughter, Krystal! Thank you for sharing yourself and your story with us. Sometimes, it is easy for us to become entrenched by our own lives and struggles...and it is nice to be reminded in those times that there are other people with experiences, difficulties, and joys in life that can be an example for us. Keep smiling, Krystal...and we will keep smiling with you.

Well, my friends, that is another Profile for the week. Stay safe everybody....
Until next time, Jason

Ataxia Profiles: Faces Of Ataxia...Chanda Huy

     Hello, Everyone...for the Ataxia Profile this week we will be learning Chanda Huy's story...and it pleases me to be able to introduce her to you:

     Chanda is working on trying to adjust and adapt to the diagnosis of Spinocerebellar Ataxia that she received a year ago. The form that she has is hereditary...and was passed down to her by her father. All of the simple things that are a part of everyday life...tasks that she used to do without thought or effort like walking, remaining balanced while standing, and speaking clearly...have now become exhausting and take concentration. Chanda relates that she has had to trade-in all her fancy and fashionable high-heels for stable sneakers.

     The diagnosis has been hard for Chanda and her husband...and has been discouraging at times. But Chanda's husband has been a rock during this first frustrating year and has helped her acquire and maintain a positive outlook. Finding and attending support groups has also been beneficial for Chanda...which she refers to as one of the best medicines. Lastly, love and strength shown by Chanda's family and friends have been priceless. The last year has been a tedious and difficult journey...but all the love, strength and support shown to her have been precious to her.

     Thank you for your story Chanda...and the openness and honesty that you relate in the difficulty. These realities are important for us to reflect on....because the truth is, that those of us who have grown-up with Ataxia, or dealt with it for years...often forget that there are people like you that are experiencing these life changes on a newer basis...maybe even for the first time. It is not insignificant and anything we can do to help and encourage you in your journey...we will do!

     Together we are stronger...and I wish you the best.

     Until next time my friends...stay safe,
     Jason

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