Ataxia Profiles: Faces Of Ataxia...Madelyn Frederick

     When preparing to write the next Ataxia Profile, I came across an idea...a philosophy, if you will, that matched my own convictions. In fact, I had written about it several years before this...in one of my blogs. It is the thought that, although Ataxia was an unwanted and rude guest that barged in and changed my life...there are many wonderful things and opportunities experienced BECAUSE of Ataxia. Would I have had these same experiences without my Neurologically-menacing guide? Maybe a few...but definitely not all.

     Anyway, these Blogs are not about me...I just say this as a way to introduce you to our number ten in the Ataxia Profiles. Madelyn Frederick...she has a similar view and I wanted to be sure to point it out because it is a very important point.

     With that...I present to you, Madelyn Frederick:

     Madelyn is currently twenty-years-old and was diagnosed at the age of thirteen with Friedreich's Ataxia. In her own words, she..."hit the genetic jackpot"! For Madelyn, hitting that particular jackpot was like having her life suddenly overshadowed by a huge monster that she could not defeat, get around...or didn't have the capability to shrink. She quickly learned that the only thing she could do was to allow herself to grow bigger than the monster...to down-play FA's significance and impact in her life. This is exactly what she did...and continues to maintain. It hasn't always been exactly an easy process...but through it all, Madelyn always remembers...again, in her own words...the truth that "I have FA, but it DOES NOT have me". One of the strengths that Madelyn has learned and would like to convey to those who are struggling is that this did not happen overnight. It took her a while to accept and embrace the life she has now...FA may hinder the way she approaches and gets things accomplished...but she can still do those things. The message here? Be patient with yourselves and allow time to strengthen you.

     Madelyn is furthering her education at college and will be studying elementary education. It has always been a dream of hers to become a teacher...and at first, was tempted to think that Ataxia would bring a definitive end to that admirable aspiration. However, Madelyn is determined that this will not happen...FA will not stop her and she will teach.

     Madelyn participates in clinical drug trials and other studies at the University of Florida. She also tries to be as active in the FA community as possible...doing whatever she can to help bring support and finding a cure, or treatment for FA. She is also part of the FA Teen Hangout team.

     What was at first scary, and even heartbreaking at times for her...turned into something Madelyn loves. Through her involvement, she has met many caring and wonderful people. Madelyn finds true friendship and support from people who have been where she is...and have the same experiences. She finds it rewarding to also be able to reach down to those who are younger, and who are going through life changes for the first time...in areas that Madelyn has already been.

     Madelyn loves to help others out when possible...and although putting herself out there at first was scary for her, she became active on social media. She can be found on Instagram, Twitter, Facebook, and YouTube. Madelyn is now an Ambassador for the Make-A-Wish Foundation, MDA, and FARA...and she was just announced Ms. Wheelchair Texas USA 2020.

     Going back to Madelyn's initial diagnosis...she shares that, like for many, Ataxia was a huge monster that seemed to have shown up with the purpose of putting a quick death to her dreams. Everything that she had known up to this point became blurry, and she began to lose sight of everything. Friedreich Ataxia was now this big mass that was obstructing her view.

     But she learned to take one day at a time...to breath and let herself grow. The picture she saw began to clear...and soon she realized that she could see light around the edges of the monster...and she discovered that she wasn't scared anymore.

     Thank you, Madelyn...for a truly inspiring story! We join you in wanting to find a cure...and I wish you the best.

     Well, that wraps up another Profile. Until next time...
Jason

Ataxia Profiles: Faces Of Ataxia...William Brutsche

     For this next profile, which is number nine in this series of profile blogs...I would like to introduce you to William (Bill) Brutsche.

Bill is on the right and his older brother is on the left. The year was 1966, and they were racing their Mustangs at the Pittsburg International Raceway.

     In his own words...Billy, as he was known growing up, began his "life as a child",(right away we see we have something in common, besides Ataxia...hahaha!). Billy grew straight and true...and in the first grade found himself to be the tallest student in the class. However, standing above everyone else in this way was not always a good thing in every situation. Trying to fit comfortably in the little chairs, while on display in the front row of the classroom...was just one example.

     By graduation, Billy had dropped the boyhood nickname and was now just Bill. This was a hard time for him, though, as his family made a decision to move four-hundred miles away from everything and everyone he had known. Through it all, Bill grew to become increasingly self-sufficient...and with a military draft looming overhead, Bill enlisted in the Navy. The year was nineteen-sixty-three. Bill traveled all over the world and by the time of his discharge had set his feet on six of the seven continents.

    Life settled into normal and Bill began work in the telecommunications industry. He performed work on equipment that dated back to the nineteen-twenties and spanned forward to the newest, current technology. It was during these years that Bill discovered the love of his life, and together they raised two daughters.

     Life was moving along as usual...when at the age of sixty-five, Bill began to notice that his walking was progressively slowing down. Suddenly he was startled to realize that he could no longer run. Stepping off of a curb, a bottom step or any surface that presented the slightest downgrade had now become a serious challenge. A visit to his GP...who did some initial testing...turned up nothing.

     Frustrated, Bill retired a year later from a business that he had started. His ability to concentrate on projects like he needed to had become difficult. He was referred to three different Neurologists...and it wasn't until the third one that a diagnosis of SCA was made. The form was unknown...and also unknown at this time was why Bill was now suffering from the Neurological Disease. He is now in a wheelchair to eliminate falling...and currently keeps busy with writing, cooking, baking, creating gift cards, and thinking up new ways to fluster and aggravate telemarketers/scammers.

     Because of the self-sufficiency that Bill learned at a young age, he has always preferred to work alone. In fact, he use to joke that if we were graded on how well we work with others....that he would receive poor marks!

     But one thing that Ataxia has taught him...or "forced him to do", in his words...is to become more patient and tolerant with people and circumstances.

     Thanks, Bill. I too can relate to being slowed-down, or "forced" by Ataxia:-) to slow down and become a more tolerant and patient person. This has been a helpful thing to me.

     Well, that's another profile....and until next time friends...
     -Jason

   

Ataxia Profiles: Faces Of Ataxia...Sharon White Miller

   
     Hello, again friends...it is time to post our eighth Ataxia Profile. This time we will look into the life of Sharon White Miller. I am gaining strength by reading other people's stories... and I hope you are, as well. One of the subjects in the personal accounts of life with Ataxia that I find very useful and interesting...is reading what they have learned and what pieces of insight, or advice, that they would like to pass on. Sharon's story continues that helpful direction.

     With that...I give you, Sharon White Miller:

     I was never described as graceful.  Physically and socially awkward was more accurate, and too tall for a girl.  From the age of five, I grew up in Laramie, Wyoming where my dad was a professor at the University of Wyoming. Mom worked at home raising three children, of which I am the middle child. She proofread countless dissertations for Dad’s graduate students. As a child, I was shy in social situations and because education was important, my source of pride came from my grades and artistic talents. I was tall for a girl and in junior high, I was nabbed by the orchestra teacher to learn string bass. About that time my dad provided private art lessons and private bass lessons from UW instructors. Anyway, in the 1960s and 70’s I didn’t have symptoms of any disorders, I just wasn’t coordinated enough to be in sports or to go to high school dances (plus I was taller than the boys in high school). The only physical activity I really enjoyed was cross country skiing. Slipping through the quiet trails in the mountains, listening to birds and wind rustling through the trees was wonderful. Falling or sliding on my backside down a slope was fine because that was an acceptable way to do things in this sport. Anyway, who was watching? Mostly, I spent my high school years rebelling but staying on the honor roll.

     In 1976 I moved to Cheyenne, Wyoming where I married and together we raised three wonderful children. After working for 10 years at the phone company headaches and dizziness were causing me to miss a lot of work. I was put on short term disability after many surgeries and eventual replacements of my TM joints. Since I could no longer talk for long periods of time, I was put on long term disability and shortly after that, I received Social Security Disability Income. The joints were replaced due to avascular necrosis (no blood supply to the bone and it dies). My skull around those joints “look like swiss cheese” according to the surgeons. A few years after, still experiencing dizziness, balance issues, and headaches I was diagnosed with Arnold Chiari Malformation and surgery was the only option given. The neurosurgeon removed a bit of my skull placing a dura patch over it, leaving me with a soft spot at the base of my skull. My kids joke about how I “go black” if I tilt my head too far back. 

     About 3 years ago I experienced a sudden onset of double vision, slurred speech, and an inability to walk because my balance was just gone. It lasted a few hours and I was back to normal. After a few more of these episodes I went to the ER thinking perhaps I was having TIAs, but everything checked out fine and I was referred to the local neurology clinic. The PA and I became friends over the few months she ran tests. Eventually, she gave me a diagnosis of episodic ataxia based on my symptoms and positive response to Diamox. She told me I would progress from using a cane to a walker to a wheelchair and eventually be bedridden with a feeding tube. Oh my gosh! I was so scared! She referred me to a movement disorder specialist in Denver who in not so kind words told me I did not have ataxia but a psychiatric disorder based on my gait being “not classic ataxic” and my vision “not always double”. My family was angry with his mannerisms and diagnosis over a 15 minute physical and consultation.  In 2018 I self-referred to the Mayo Clinic in Rochester MN.  My husband and I spent a few days in May at my first visit meeting with a neurologist as well as consults and testing with several specialists. They agreed I was experiencing ataxia but the cause was unknown. We returned in August and again in October for more tests and consultations. Because there is no obvious family history of hereditary ataxias, genetic testing was done to rule out episodic ataxia only. My neurologist suggested we stay in touch via phone, email, and video chats to save on travel expenses during the harsh winter months in Wyoming and Minnesota. Many of the tests pointed to autoimmune disorders, of which there is a strong family history of, and he arranged for weekly infusions of high dose prednisone after which we spoke again. With some positive results, we agreed to try a longterm immunosuppressant, which I am currently taking while I wait for my now yearly visit with the Mayo Clinic team. My local neurologist, who admits to knowing little about ataxia as a disease, orders my medications per recommendation from Mayo.

     Today, at age 62, my diagnosis is autoimmune cerebellar ataxia syndrome, which my Mayo Clinic neurologist says is a nonspecific best guess based on my response to treatment. The episodes that sent me looking for answers are fewer and less severe. Physical therapy with a balance and vestibular therapist has been extremely helpful. My son, who was a trainer in Chicago, helps me with things I can do at home.  I am on a waiting list for a brace and balance service dog.

     What I have learned through the online support groups is to put aside my qualms about using the aids I have and just be who I am. I carry a long hickory walking stick in public which often elicits good-natured comments from strangers about carrying a weapon. I have a walker. Of course and most importantly, I always have the support of my husband’s arm not to mention his love. Our kids and grandkids all live in Cheyenne now and we enjoy our times together as blessings from God.  Just recently, I decided to stop hiding my challenges and help others become aware of Ataxia. The closest support group is about 100 miles away in Denver, but this month I posted an Ataxia aware photo daily, made comments on how this affects me directly, and have a birthday fundraiser for NAF going on, (up to $275 as of today). It’s past time to stop making excuses for being shy and become an advocate.

     Some hobbies need a little adaptation. Instead of carrying a DSLR camera and equipment I took some courses on iPhone photography and editing. Painting is difficult but a new hobby is collecting and competing in vintage and antique buttons, tiny works of art, and helps with hand-eye coordination as well as fine motor skills. Our new physical activity is riding recumbent trikes on the greenway and in the Colorado Rockies. 

     The biggest thing that helps me, besides my faith and family is laughter. In many situations, laughter is truly the best medicine. We all laugh a lot because life is short and feeling hopeless zaps the energy and excitement out of all the great things in life!

     Thank you for sharing with us Sharon!

     Until next time....
     Jason

Ataxia Profiles: Faces Of Ataxia...Brett Mitchell

     This post is the seventh writing of the series on Ataxia Profiles...and this time, I would like to introduce you to Brett Mitchell:

     For thirty years, Brett worked for a distribution company in their warehouse...until a sudden onset of symptoms occurred and things began to become difficult for him.  At the age of fifty-three, Brett was diagnosed with an unknown SCA. His main interest had been music...including listening to it and reading about aspects pertaining to different forms of music. Brett also spent time attending, and music shopping, at collectors shows and retail stores. Standing and walking on concrete for long periods of time became too difficult...and although Brett still enjoys listening to music, and reading up about it...he stopped doing the other activities.

     However, he very much enjoys the outdoors...and seems to do better on natural surfaces, like grass and sand. Brett has begun to take quite a few nature walks at parks, on trails, and at other places. He has found that the natural surfaces are easier for him to walk on...because they are softer and easier for him to find better traction. Brett relayed that he can go for longer walks, even if he has to use his rollator.

     In Two-Thousand-and-Eighteen, Brett began recording his public nature walks...and by Autumn of that year, he had recorded enough trips to his local city and county parks, that he wanted to share with the Administrators of those parks how much he enjoyed them. At that time, He also began writing poems that he titled: Ramblings Of A Disabled Nature Lover. He included a copy of one of these writings in each letter that he sent...and also included a short note about SCA. He is continuing with this same endeavor this year...sending letters to the local Administrators of the Rails-to-Trails areas that he enjoys frequently.

     Before we go on and hear more from Brett, I thought I would share with you one of his poems. The poem was published in the Spring issue of Generations...the quarterly magazine of the National Ataxia Foundation.

     Brett would like to leave the readers of this blog with two pieces of advice...which is, to find enjoyment in what you can still do...and find something that you can do that you might not have had time for before Ataxia. Great advice. Thank you for sharing Brett.

     Until next time...thanks for reading! Jason

Ataxia Profiles: Faces Of Ataxia...Nikki Ewton

     The current writing will be number six...and I have enjoyed working on every one of them. I like knowing peoples' stories and reading about their own journeys. Based on the response that the previous five stories have attained so far, I'd say that you all like them too.

     My hope is that as we read someone else's experiences, and as they share who they are and what they have learned...that we will begin to find strength in our own lives. Personally, I always pay attention to the advice that the person I am writing about is giving. It is not lost on me that the insights that they share with us are coming from years of experience. First-hand knowledge that is born within the trials of living with a Neurological Disease.

     Each profile has truly been an honor for me to write...and this time I am pleased to introduce you to Nikki Ewton:

     At the age of thirty-three, Nikki began to experience balance issues while walking, and she began falling down. She went to see a Doctor...who sent her to have an MRI done. The test results returned normal. Nikki then relayed to the Doctor that she had a Grandmother who was not able to walk, and that had been in a wheelchair since her thirties. Nikki's own mother has been affected by the same thing.

     As the years went by, Nikki noticed that her fine motor skills, and general physical abilities, were growing slowly and steadily worse. At the age of forty-one, she returned to see a Neurologist...this time, leaving with a diagnosis of Spinocerebellar Ataxia. (so sorry Nikki, I know too well how that felt). She was diagnosed with an unknown SCA...however, Nikki's older brother went through Genetic testing and the results were SCA 8.

     Initially, Nikki used a cane...she used it for three years until a series of bad breaks, (literally), had her begin to use a rollator. In Two-Thousand and Five, Nikki broke her ankle...in Two-Thousand and Seven she broke her left knee and in Two-Thousand and Fourteen, it was her right knee that suffered a break. She continues to use the rollator full-time, except when she is in public...then she feels more secure and uses her scooter.

     Before her official diagnosis, Nikki worked as a scheduler for a cargo airline. She did this job until her motor skills and speech began to become worse. Her hobbies were dancing and playing tennis. She was sad to see those activities go away...but currently, she spends time riding her stationary bike every day and enjoys doing word puzzles.

     There are two things that Nikki would like to leave with us. She has learned to take one day at a time, and know her limits between when to be active and when her body needs rest. Both of these lessons are very important. I too have learned that there is nothing to be gained by living in the past, (lost abilities), or the future,(experiencing anxiety over things I cannot control). And knowing when you need to rest becomes a safety issue for us.

     Well, another interesting profile...and I want to thank Nikki Ewton for letting us get to know her a little bit better! Thanks, Nikki.

     Until next time, my friends. Jason