Friday, May 8, 2020

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 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.


     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...

Thursday, April 30, 2020

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!

     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,

Thursday, April 23, 2020

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-

Thursday, April 16, 2020

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


Thursday, April 9, 2020

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

Thursday, April 2, 2020

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,

Thursday, March 26, 2020

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 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 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 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,