Ataxia Profiles: Faces Of Ataxia...Adam Carter

     For this week's Ataxia Profile, I will be introducing you to Adam Carter...

   
     Adam is forty-five and has Spinocerebellar Ataxia type four. He was diagnosed around the age of twenty-three...after being referred to a Neurologist by his Doctor. Adam had gone to see his regular Physician several months prior...because his voice had started to sound rather "croaky" and his family felt that he should have it checked out. It led to a rare Neurological Disease...and although all forms of SCA are rare...some are a little more so than others.

    Adam grew up doing the normal things that most kids do...which included playing soccer/cricket. He also participated in Rap music and Breakdancing...and became quite good at it, winning numerous local dance competitions. As he got older, Adam also began to work as a DJ at rave parties. Unfortunately, his symptoms began to appear just a few short months later...with a diagnosis of Ataxia not long after that.  Initially, a specific type/number was not known...but later a more detailed diagnosis of SCA4 was given.

     For many years, Adam tried his best to not acknowledge his condition or learn anything about it...because he found that the more he did the angrier he would become. He could no longer do those things that he had enjoyed...and he soon discovered that he was caught in a downward spiral of anger and depression.

     Adam decided that he needed to get his anger and self-hatred under control...so he spent time seeing a Psychologist...and though it has been a long journey emotionally and physically, through the Psychologist and help from his friends he has learned to defeat most of the anger and frustrations that he was experiencing.

     And, even though he may still have to work through those feelings of anger from time to time...he is much happier these days and has started to DJ again. What really makes him happy, however (and this is an unintentional piece of advice from Adam) is that he learned to accept his current situation...and not just accept it but adapt to it and make it work in his current life surroundings. He can also dance once more...thanks to an awesome wheelchair that has big wheels for getting around. He enjoys camping...which he finds easier with his new wheelchair. These two activities were things that he very much enjoyed before the Ataxia...and being able to do these things again has gone a long way towards soothing his anger.

     The one idea that Adam would share with us is the thought that we are never alone. We can be a comfort to one another...and in ways and experiences with Ataxia that only we can know.

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     Thank you for sharing yourself with us, Adam! It has been a pleasure to write your story...and to be able to share it with the wider community.

     Well, that's another...and the final Ataxia Profile. Unless someone shares their story with me, there will be no more Profiles. I have enjoyed our time together. Take care my friends...
     Jason

Ataxia Profiles: Faces Of Ataxia...Carol Arsenault

   

     It is time for another featured Profile...and this week we will be getting to know Caril Arsenault. I will let her tell us her story...

Hello everyone. My name is Carole and I was 53 when I was diagnosed with Wernicke Encephalopathy (WE) in 2018. Wernicke encephalopathy is an acute neurological condition characterized by a clinical triad of optical issues, acquired ataxia, and confusion, all due to cerebellar dysfunction. It is a life-threatening illness caused by a thiamine (B1) deficiency, which primarily affects the peripheral and central nervous systems.

My symptoms began in 2016. First, it was an occasional issue with my balance, progressing to the need for a cane, then a walker, then a seated walker as my strength, balance, and coordination was dissipating rapidly. During that time I fell down the stairs in my home twice, once causing a concussion, the other causing a serious leg wound, I finally saw a neurologist who diagnosed me with a functional movement disorder but no explanation as to why. I proceeded to become more and more ill, finally ending up spending 3 months in bed, unable to eat or walk unaided. I finally ended up in the hospital in April 2018 with severe dehydration, severe malnutrition, and starvation.  My stay lasted seven weeks, during which time the doctors finally came up with my official diagnosis.

Before all this began, I was an IT and Management consultant with over 30 years of experience. My job allowed me to travel all over the globe on different assignments. I did a lot of personal travel as well: wine tours of Italy, a trip to England, the Caribbean and all over. I used to host dinner parties and wine tastings in my home for my friends, I enjoyed cooking and wine immensely! I loved my life and used to walk 5 kilometers a day for exercise. As you can imagine, most of these things have disappeared from my life due to my wheelchair and other physical limitations.

After my diagnosis, I was severely depressed and lost all interest in things I used to enjoy. I had to sell my home and move into an accessible apartment with my husband. Even still I managed to fall twice in November of last year, fracturing both my hips. After another 5 weeks in the hospital, during which my husband suddenly passed away, I came home and decided that things needed to change. They MUST change in order to survive alone.

I began working out at home to regain some of my strength, and finally got a spot in rehab in January. Things were progressing well, I could walk between the parallel bars and just recently began attempting to walk with a walker again with the assistance of my physiotherapist of course. Now, with the virus and social distancing, I can no longer go to physio so I must do what I can at home unaided. 

I am on a 2 ½ year waiting list to see a neurologist that specializes in my condition so as you can probably understand, I had many unanswered questions in my mind.  I began heavily researching my condition on the internet and joined every ataxia Facebook group I could find. There I found many helpful people much more knowledgeable than myself and I learned a great deal.

I know that there is no cure for my condition, but there are things I can do to slow its progression, like home exercise, proper nutrition, and more physiotherapy (when this nightmare virus is contained). 

My disability and all the events that led up to today have taught me a great deal. Never take anything for granted, especially the ability to walk! Never give up! No matter how bleak it seems, get up, get going, and do something, anything, which will improve your condition. Finally, I have learned that there are many kind, generous and knowledgeable people out there willing to help you. USE THEM. Search them out as I did, they are crucial to my journey towards getting on my feet again and regaining some of the abilities I need to be able to resume some of the things I enjoy in life. No matter how bad you feel, please never give up hope!
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     Thank you for sharing your story with us Carol. It is encouraging...and we all can learn from one another's stories. So...until next time my friends,
     Jason

Ataxia Profiles: Faces Of Ataxia...Jodie Kawa

     This week's Ataxia Profile is going to focus on Jodie Kawa.

     Jodie recalls having a pretty normal childhood...she wasn't particularly athletic, but she would ride her bicycle with friends. And, just like most children...Jodie enjoyed running and playing games of tag.

     At the age of ten, she was told that her mother had Ataxia...and that she and her brother each possessed a fifty-percent chance of developing the neurological disease. The news was hard for Jodie to hear...she remembers not responding to the news very well...and worrying over the future possibilities for a while.

     From that point on, Jodie was convinced that she had Ataxia of some form. There was nothing truly obvious...a few small issues with balance...and it wasn't until the age of forty that Jodie began to become more alarmed. She was working as a preschool teacher at the time and she was noticing that her balance was beginning to affect her ability to do her job. Even though Jodie loved teaching...she decided that it was time to get tested.

     Jodie was seen by a Neurologist who read her family history, and after watching her walk...believed that she had Ataxia. A blood test confirmed that Jodie had Spinocerebellar Ataxia type 2.

     Almost ten years have passed since Jodie's diagnosis...and she has embraced the Ataxia community. She has attended as many of the National Ataxia Conferences as possible...and in her words, has discovered and made friendships with some of the most helpful and enthusiastic people from all over the world. Jodie also enjoys her involvement in her support group...and is actively planning a second fundraiser this year.

   
     Thank you for sharing your story with us Jodie. I have been to several Conferences also...and enjoyed meeting you. We knew each other on Facebook...but it was nice to be able to talk to you in person!

     Well, my friends, that's another profile...and until next time, stay well and safe-
     Jason

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

   

Ataxia Profiles: Faces Of Ataxia...Ashley Sharp

     For this week's Ataxia Profile, I will feature...and introduce you to Ashley Sharp.

     At the age of...or right around the age of ten-years-old...Ashley was diagnosed with Friedreich's Ataxia (FA). At such a young age...she had no way that she would be able to anticipate how this would shape the rest of her life...and Ashley's parents never talked about it. However, she did have a support system...and experienced an abundance of help at school. Ashley's friends did all manner of things for her...from providing a backpack that she could grab on to for support...to giving her a helping arm to steady herself...and providing piggyback rides from class to class. Her writing also began to suffer from the affects of FA...but her teachers were very gracious...and Ashley has wonderful memories of those early years...which she notes, outweighed the bad.

     Ashley has always been close to her family...but she became tighter with her parents when, sadly and tragically, her brother took his own life. She witnessed the emotional pain and anguish that they went through...and his death changed not just her parents'lives...but also the lives of everyone who knew the family.

     One of the lessons that having Friedreich's Ataxia has shown Ashley about herself...is that she is mentally strong...and being so helps her to push through many obstacles that get in her way! Every day Ashley's thoughts and her physical reality try to drag her down...but she is determined to remain positive. Ashley knows that the only one that can change her thought is herself.

     This is a great message for us...and an example to us. More power to ya...thanks, Ashley!

   
     Thank you, Ashley...thank you for sharing with me a little bit of your story so I could write it...and we could all come to know you a little better.

     And that's another Profile...so until next time my friends...
     Jason

Ataxia Profiles: Faces Of Ataxia... Marie Lefevre

     For this week's Ataxia Profile, we are going to be introduced to Maria Lefevre...and get to know her a little better through reading her story.

     Marie first began to notice physical difficulties at the age of twenty-nine...but had nothing done until she was thirty-nine. At this point, Marie was diagnosed with Multiple Sclerosis...which was changed when she was forty-five to Cerebellar Degeneration.

     Marie looks back on her life before the diagnosis of Ataxia...and realizes that she didn't take the time to appreciate what she had. She had the ability to do whatever she wanted...and everything from working, eating, and everyday simple tasks came mostly without effort, and like so many of us did before these things became an issue...never gave these things a second thought. Marie reflects on her life...and comes to the conclusion that she has been much more appreciative in the last thirty years than she was in the first thirty.

      Marie has volunteered for many places that provide aid...and began the road of service at a Center for MS patients. She also spent some time working as a teacher's assistant in a classroom for children with Autism. Marie decided to study for a career in childcare...but soon realized that this was not a good fit. Instead, she studied adult education, and at forty, she also did course work in community service studies. It took her almost six years to complete because she was doing it all on a part-time basis...but she believes that if a person wants something bad enough they will find a way.

     Marie remains independent. She relies upon herself, and an example of this is her furniture...if it is too heavy to move by herself, she either replaces it with something lighter, puts it on wheels, or sits on the floor and pushes it with her legs (which I have affectively done before). I have also put furniture on a blanket or towel...sat down and pulled the furniture to me, as I have continued to scooch backward a few feet at a time. Anyway, this reinforces Marie's belief...that if you desire to do something bad enough...that you will find a way.

     One of the benefits of pushing furniture with her legs...is that it keeps the legs exercised and strong. Marie was told when she was first diagnosed that she should just go home and sit...that she would most likely be in a wheelchair by the age of forty or fifty at the latest. But at the age of thirty, Marie was not willing to accept that...she felt too young for that. She lives alone and her Ataxia has taught her to depend on herself. Marie has one daughter and four grandchildren.

     Marie also likes to garden...and has served as a volunteer gardener for the last three years. Walking in her own yard has become difficult as of late...so she has either planted trees to hold on to or placed long sticks in the yard that she can grab...with the note that they need to be long enough that she won't fall and stab herself:-) Good idea, Marie...safety first...hahaha. She does not let anything stop her from doing the things she loves and finds fulfillment in...and will often sit down to do her gardening. This gives Marie the motivation to keep moving and a feeling of worth.

     I admire that Marie...because one of the saddest things to me is seeing people easily defeated by Ataxia or other physical challenges. With Ataxia, in particular, I have witnessed too many who use it as an excuse to give up and become more and more dependant...so thank you for your story of encouragement Marie...and giving me the privilege to write it.

     That's another Profile...and until next time friends...
     Jason
   

Ataxia Profiles: Faces Of Ataxia...Breaunna Hoffman

     Ataxia Profile number twenty-four...and let's get right to it. Today, I am pleased to introduce Breaunna Hoffman to you...

     Breaunna is twenty-three...and lives in Pennsylvania. Her journey began at fifteen when she was diagnosed with Scoliosis...and was told that she would need to undergo surgery. However,  her mother questioned whether or not Scoliosis explained Breaunna's moment of stumbling...which she was experiencing whenever she would initially rise to walk. The doctors confirmed that it would not...and so further testing was done. After a period of several months, a diagnosis of Friedrich Ataxia was given. From that day life changed for Breaunna.

     Up to this point, she had been spending her days like any other average fifteen-year-old...very active. Breaunna played all types of sports...and was very involved in cheer, which was her favorite. She was especially devastated when she had to quit her involvement in that particular enterprise. However, other than the effects of her Scoliosis, and a little bit of the initial staggering when first standing up... she was not yet experiencing any other signs from her early diagnosis of FA. She could not imagine that just eight short years later she would be dependent on a walker.

     But as much as she thought using a walker would be horrible...it turned out that Breaunna grew to appreciate it. Because, she found that her walker gave her freedom...it offers her stability and allows her to go shopping, hang out with friends, and enjoy herself during the time that she spends with family.

     One of the great lessons that Breaunna has learned from having a neuromuscular disorder...is a lesson that is important for us all to hear and pay attention to. The life that she now finds herself in has humbled her. In Breaunna's words...before her diagnosis, she wasn't the loving, caring, and empathetic person that she is today. The reality of FA has caused her to slow down...reflect...and look around. She realizes that everyone has a different story to tell...and there is no room for judgment anymore.

     This is such a true assessment...and definitely my experience as well. This outlook also seems to be a pretty common theme for many...but it can't be stated enough, so thank you Breaunna.

     Breaunna finds raising awareness for FA to be very important and tries to spread knowledge whenever she has an opportunity...be it through social media or participating in a public event...such as the rideATAXIA SoCal at Huntington Beach that she attended. She also went to her first FARA SoCal event in 2018...and went to the FARA/UCLA FA Symposium. Her family and boyfriend work towards bringing awareness to FA as well.

     Breaunna would like to leave us with one piece of advice...which is to reach out to the community. You ARE NOT alone...though it can feel that way when you first receive that diagnosis of a rare neurological disease/disorder. There are more of us than you are initially led to think...so reach out because we are here for you!

     Thank you Breaunna for sharing your story with us. We benefit from each other...and your story is inspirational. Keep sharing and raising awareness...I wish you the best.

     Until next time my friends...

     Jason

Ataxia Profiles: Faces Of Ataxia...Dana Creighton

     For today's Ataxia Profile, I am pleased to introduce Dana Creighton to you.

     In Two-Thousand-and-Six, at the age of Thirty-Three, Dana went to the Athena Diagnostics Lab to undergo a blood draw and genetic workup. She went because Spinocerebellar Ataxia ran through the generations of her family. Her mother had struggled with it...and had passed away at the age of Fifty-Three. She had experienced three of her siblings pass away who had been similarly affected as well...and Dana's mother had always been terrified that she would pass this on to one, or all of her children.

     Dana had been waiting for a long time to find out if this would be the case...so she said "no" to waiting any longer...when it was suggested that she make an appointment to talk with a Genetic Counselor after the results of her blood work came back. She, instead, asked them to immediately call her when the results had come in.

     Dana was working at UNC-Chapel Hill in the Public Health Research Department at the time...and on December twenty-eight of that same year received a call with the news. She had definitively been diagnosed with Spinocerebellar Ataxia Type 2. She remembers feelings of deep sadness...shock, and devastation. She left work early that day...just to spend a few precious hours by herself, and then went to pick up her husband after his twelve-hour shift at the hospital. They spent time crying together.

     I think that in one way or another we can all relate to Dana. The first time we are given the news is a blow...and can be devastating. I remember hearing the words of my diagnosis and feeling numb. I think we all were hoping, at that moment...that the Doctor would look at the results again and be like, "oh you know what, I was looking at the wrong chart...no, you're fine".

     Since that time, Dana has found a passion for working out and getting daily exercise. She sees a Physical Therapist a few times a year and incorporates these exercises into her daily routine. She also rides her Catrike (three-wheeled bike). She feels that there is nothing she can't do...but jokes there are, however, a lot of things that she doesn't do very well! Dana feels that, for her, exercise is a re-calibration of the connection between her mind and body.

      On her journey towards the healing process, Dana has found that regarding her trauma... writing about her innermost feelings has been very therapeutic, both emotionally and spiritually. She also enjoys helping others. Dana loves to support others...but also, is not afraid to ask for help when she needs it. This is one of the lessons she would like to pass on...we are in this together and helping one another is just a part of who we should be.

     Thank you Dana for allowing me to write your story...so that we could all come to know you a little better...and know your story.

     Until next time my friends...
     Jason
     

Ataxia Profiles: Faces Of Ataxia...Amy Hamrick

     I have heard from many of you that these Profiles are very helpful. I am very glad to hear this...and send a thank-you to all that have allowed me to present their stories to you. In the same spirit, this week I would like to introduce you to Amy Hamrick.

     Amy was thirty years old and pregnant with her daughter Hadley when she was first diagnosed with Spinocerebellar Ataxia Type One. The disease runs in her family, but no one really talked or was honest about it until Amy.  Her dad had Ataxia, which he got from his father...and out of four children Amy was the only one to also have SCA 1. Currently, Amy lives in South Georgia with her husband and daughter.

     At the age of thirty-two, Amy decided to have a blood test done...to confirm her status and ensure her eligibility in drug tests, and other trials. This is a good point to make for Genetic testing. People ask why they should bother getting tested...after all, there is no cure...so what does it matter, right? Well, one of the answers is because of possible involvement in trials. Drug companies do work with specific types of Ataxia...and if you have an official diagnosis this avenue is now open for you.

     Amy was a first-grade school teacher and was always commended for her classroom management. She had taught enough years that when the job became too stressful and physically difficult, because of her Ataxia, Amy was able to medically retire. Although she doesn't drive much anymore, she does have a vehicle on hand in case of an emergency. Her husband works an hour away from home...which leaves her home all day by herself, and Amy is still working towards figuring out what this means and which activities are going to be within her abilities.

    One such activity that Amy has discovered is wheelchair yoga...but finds it difficult to be in crowds of people. When asked what she has learned from her disability, Amy said that one thing is that she has given herself permission to mourn and grieve over the abilities that she has lost. Amy also owned a rollator for two years but refused to use it for the first year. On year two she gave in...and one coping mechanism that Amy employed was to give her rollator a name...and she decided it looked like a pink Lilly...so Lilly it became.

     Amy has also learned that with each one of her new symptoms she needs to give herself time to adapt and cope. She says her goodbyes, and then moves on. One of her mottos that she tells herself is to just fake it, till you make it!

     Amy will be participating...along with her siblings, in an Ataxia Walk during the first weekend in October.

     Thank you for sharing your story with us Amy. I learn new things and continue to see the whole of my Ataxia from other angles, or perspectives...with every Profile blog that I write.

     So, until next time friends...

     Jason

     

     

Ataxia Profiles: Faces Of Ataxia...Simone Van Alstine-Jasch

     It's time for another entry in the Ataxia Profile Blog...and for today's, I am happy to introduce you to Simone Van Alstine-Jasch.

     Simone's story begins in nineteen-ninety when she was nineteen and attending The Boston Conservatory of Music, Dance, and Theatre. Simone remembers the exact moment like this...when everything began to change..." one moment I was sitting on the steps outside the building waiting for a friend...and the next I was on the ground after standing up". This incident sent her to the hospital where she spent a week being tested and having numerous blood-draws...only to hear, after all of that, that they didn't know what was wrong with her.

     Simone spent the following three months talking with psychiatrists and psychologists...and finally given the diagnosis of Cerebellar Atrophy. In nineteen-ninety- seven, she was given a more exact neurological explanation...that being Spinocerebellar Ataxia type 2. However, this conclusion was reached by a process of elimination...because, in the late nineties, only tests for types One and Three were available...and she had tested negative for these. In fact, twenty-plus years later Simone applied for consideration in a drug trial for SCA2...and was told that instead, she may have Ataxia Ocular Apraxia.

     Simone is an Air Force housewife and fills her days with housekeeping, reading and writing fiction, watching television, and exercising. She also does some volunteer work for a Hospice...and is greatly aided in this service by her gifts for sympathy and her strong musical talent. She finds great comfort, peace, and strength in the Lord...and, although she has now lost some of her physical abilities...acknowledges that she simply continues to be Simone.

     This is a powerful point that Simone just made...and I want to interject here with a comment on Simone's observation...because I think it is an important one, especially for those who might be struggling to process a new diagnosis in their life. It is quite common to view yourself as two separate people...who I was before (pre-diagnosis), which was normal and happy...and who I am now (post-diagnosis), which is limited and sad. However, this is NOT true. You are the same person now as you were then...with the same gifts as before to offer...life for you now has just become a little more challenging...but you can't let yourself become defeated and give up. You learn lessons that will probably change or strengthen you in different areas...but the physical limitations that come with Ataxia do not fundamentally change who you are.

     Which brings us to the lessons that Simone's disability has taught her...and what she has learned. It has taught Simone patience...it has deepened her ability to laugh at herself...and taught her to not sweat the small stuff. Her advice to others is to concentrate ALWAYS on what you can do, not on what you can't...and to remain positive, even though there are times when this may seem to be hard to do!

   

     Thank you so much for your words, Simone...and thank you for sending me your story so we could all benefit from it and get to know you better.

     That wraps up another Profile Blog...so until next time, God Bless you all my friends.
     Jason

Ataxia Profiles: Faces Of Ataxia...Rosie Ruiz

     Hey, everyone! Time for Ataxia Profile number twenty...wow! Time is going so fast...it's hard for me to believe we are here already. I have very much enjoyed writing every profile and hope to bring you more. Some of you reading this will need to step up and send me your information...I only have eight more profiles available after today's...and for this week's Profile I am happy to introduce you to Rosie Ruiz...

     Rosie was thirty-five when she was diagnosed with SpinoCerebellar Ataxia. For two years numerous blood tests were done...as the doctors sent sample after sample to the lab in an effort to zero in on a specific type. Finally, after all the previous tests had come back negative, a positive result of SCA 8 was found. She remembers feelings of deep sadness at the news of a progressive disease...because she felt she was still quite young and was very active at that time.

     SpinoCerebellar type 8 is a form of Ataxia that is marked by a slower progression. Even so, Rosie...like many...hates the attention that comes when one experiences difficulty walking. She relays that she feels very uncomfortable when people stare because she may jerk when walking, drag her foot, take small steps, or move slowly. Conversations can also be embarrassing for her...as she struggles with crisp diction and hears herself garbling her words.

     Before Ataxia, Rosie worked at a desk job. She worked out regularly at a gym that she loved...and enjoyed going on nature hikes or long walks in the city. She still works and drives...although, Rosie notes that before the diagnosis she had better dexterity and loved to drive a stick...but now has transitioned to driving an automatic. She also notes a difference in the way she approaches public and social places. Before, Rosie was very energetic and loved meeting new people...but now she has become very apprehensive. She also quit the gym that she loved...for a preference that she now has to work-out alone.

     Activities that Rosie finds to be helpful include working in her garden...which gets her outside...and spending time on her treadmill...which is helpful for her stiff leg and gives her time to enjoy her favorite Podcast.

     When asked what her disability has taught her...Rosie's response was an important one for all of us to hear...because she let this progressive, non-curable neurological disease develop a much deeper sense of humility and empathy in her life. This journey has been a growing experience for her...as she learned that she now has an opportunity to reach people...just by accepting herself and being who she is.

     She would like people to know...especially those who are trying to come to terms with a new diagnosis in their lives...that life with a disability is not the end. Life is different...but it is not over.
Thank you for those words, Rosie...I personally, can testify that in my life and experiences I can see this disease as opening doors for me, providing opportunities, and giving me insights about myself and others...that I would not have realized any other way.

     Thank you, Rosie...for sharing yourself with us, as we all deal with this neurological disease and seek to learn from the lives of others.

     God Bless you all, my friends. Until next time...
     Jason