Ataxia Profiles: Faces Of Ataxia...Catherine Meredith

     Hello again everybody! I hope that you all are enjoying the Holiday season...and there is just enough time left in the two-thousand-nineteen year to get in one more Ataxia Profile. This will be number eighteen...and it is my pleasure to introduce Catherine Meredith to you for this writing.

     Catherine was forty-nine and in her fifth year as a fourth-grade school teacher...minding her own business like so many of us previously had been... when WHAM!, she suddenly was hit with Ataxia. Also like many, myself included...Catherine first experienced little physical frustrations that she thought would be a routine fix by a simple visit to the doctor. For Catherine, it was a sore knee that she chalked up as a bit of arthritis. She ignored this for about a year...as everyone kept advising her to have it checked out by a doctor. However, when she started to experience trouble with her speech and walking, she decided that she had better heed everyone's advice and be seen. She still believed her symptoms to be easily dealt with...a hydrocortisone shot in the knee for arthritis for example. Instead...after being sent to see a Neurologist who performed many tests, including an MRI...she discovered that her journey with Ataxia had begun in earnest.

     Catherine no longer works or drives...and even though everyday tasks, such as eating, and cleaning her house have become difficult...Catherine strives to be positive. Her diagnosis is only three years old...and while she still struggles with denial, Catherine chooses to battle on and concentrate on the positive.

     Catherine has had people say to her, " things could be worse you know". To this, she replies, "yes I know...but this is MY worse". Catherine looks to her family...her husband and three teenage girls...to help her when she needs it, and her attitude towards her Ataxia is...that it is what it is.

     Since Spinocerebellar Ataxia is so rare...and it is even more so in New Zealand where Catherine lives...she started a Support Group on Facebook named Kiwis With Ataxia.

     Thank you, Catherine, for sharing your life with us. Three years is still a fairly new life-changing diagnosis...and though you still struggle with acceptance, I believe you are well on your way. It has been sixteen years for me...and what I am learning is that, although I have mostly accepted my disease and moved on...it is not a one-hundred percent thing. That there are still times that I don't feel any different and see no reason why I can't do the normal things that I used to...like run and drive a car. I guess in some way there is a small part of me...of us...that will always be in denial. Does that make any sense?

     Well, once again...that was Ataxia Profile number eighteen. I enjoyed bringing it to you...and until next time...Happy Holidays my friends, Jason
   
   

         We Got This!!!

Ataxia Profiles: Faces Of Ataxia...Lisa Antonelli Cole

     Let's keep the momentum rolling...with Ataxia Profile number 17. Again, it is my distinct pleasure to introduce Lisa Antonelli Cole to you. Like many of you...I have met Lisa, (as a later photo will testify to:-)), but I look forward to writing this and getting to know her better. This is the purpose of these Profiles...so that we can know one another better and learn from our collective experiences. So, with that....

     Lisa received an official diagnosis of Spinocerebellar Ataxia in December of 2013...however, her story begins a few years prior to this when she first started showing symptoms and went through a frustrating time of being misdiagnosed. Unfortunately, this same pattern seems to be a common theme for many people.

     From as far back as 2007 Lisa began to experience times of dizziness...her balance was off, she was losing coordination, and she felt very unstable whenever she closed her eyes. Lisa was treated for vertigo by an ENT and sent to work with a Physical Therapist. Even though the symptoms of unbalance and dizziness did not improve Lisa discontinued seeing any doctors...after seeing that one of her ailments listed in her records was Chronic Anxiety. Lisa did NOT have anxiety...but knew something else explained her symptoms...something else was wrong.

     Several years later, while undergoing a stress test on a treadmill, she almost fell. The Cardiologist recommended that she have this checked out. Thinking it was a bad knee, Lisa made an appointment with Orthopedics. However, when she saw the Orthopedic Dr...they did not think her walking symptoms had anything to do with her knee, and instead, told her she should be seen by a Neurologist.

     When Lisa did finally did see a Neurologist...he listened to her for a while, and then sent her to see another Neurologist in Gainesville for a second opinion. Both Drs. agreed that the diagnosis...through a combination of both her family history and Lisa's MRI...was Spinocerebellar Ataxia. Like so many, Lisa has an extensive family history...with her Dad, Brother, and Aunt all having Ataxia as well. Sadly, Lisa's father passed away three years ago in a nursing home. He was no longer able to walk...but also died from complications due to Non-Hodgkin's Cancer and COPD.

     For several years before her official diagnosis, Lisa traveled to see several clients...to who she was teaching Quickbooks.  However, now she works from home doing accounting...and if she needs to have contact with those clients...she does so on the computer by logging on to their accounts.

     Lisa saw others in her area that were needing support...and so started the East Coast of Florida Group, (The Treasure Coast)...and enjoys helping as many people as she can while still able. She does whatever she can to raise public awareness and to promote the ongoing mission of the NAF. Lisa is also hoping to see the National Ataxia Awareness Day...Which is on September 25th...become officially recognized, and a Proclamation by the State of Florida.

     She has also started a Facebook group named AtaxiaRocks...and has done several interviews that can be viewed on YouTube. I will share the link here:
https://youtu.be/LqCIZuW_SBg

     Thank you, Lisa...for allowing all of us to see into your life...and bringing encouragement, support, and awareness to the world of Ataxia.
     Until next time friends....Jason
   
   

Ataxia Profiles: Faces Of Ataxia...Donna Gregg

      This week's Ataxia Profile is number 16...and I have been enjoying bringing them to you. This time, I am pleased to bring you Donna Gregg's story. I will let her tell it in her words:

 



     I have a disability. There. I said that aloud for the first time yesterday, since being diagnosed with ataxia three years ago. We were at a car dealer with the need to trade in our pickup truck for an SUV. The truck is high off the ground, and getting into and out of it has become quite difficult for someone with a balance problem. Driving it is fine, climbing in and out is not. I didn’t want to come across as a silly woman who is afraid to drive a big, bad truck… so I told the salesman that I had a disability. Finally, I had the courage to use that word.

  I am 70 on my next birthday, and ataxia has been coming on for some time. For me, it was very subtle. I’d be in Home Depot, and realize that I was needing to hold on to a shopping cart, even if I only purchased one item. The “bigness” of the store was making me feel quite odd. What could that be? Other times I just didn’t feel quite right, but couldn’t define what that meant to my doctor. Tired? Well, no. Dizzy? Sort of, but not exactly. A little off, like I’m coming down with a virus, but I feel fine otherwise. Then I started the tests. The most significant was testing my blood sugar four times a day in case it was hypoglycemia. No, after keeping a record for 3 months, that wasn’t the problem. I had all sorts of blood tests, checking various hormone levels, checking my ears, checking my blood pressure. So much checking. After 6 months, my doctor referred me to a neurologist, and then I found some answers.

I wasn’t diagnosed with any specific type of ataxia; my brain and cervical spine MRIs came back inconclusive. I have general cerebellar ataxia, with the presenting problem of balance while I’m standing or walking. While I’m sitting down, I feel nothing wrong; I feel “normal”. But walking on uneven ground, walking in a large open-air setting, and even turning my head to look at something while walking can send me to the ground. Over the last three years, it has gotten slightly worse, slowly and steadily. I have come to terms with the fact that there is no fix to this.

What my saving grace is, is that most of the things I love to do, I do while sitting. I’ve read a thousand books in my lifetime, I crochet, knit, and embroider. But my biggest reason to be grateful is that I am an artist, with pet portraits being my passion. I haven’t had to give up *too* much of my life due to this condition. I am indeed humbled by this; I know that my symptoms could be so much worse. I can no longer walk my 68-pound dog, but I can draw her. I can’t spend the afternoon running here and there, in and out of the car, accomplishing many errands like I used to, but at my age… so what?

What this experience has taught me is compassion. When I was younger, I was irritated if the old lady in front of me in Walmart was a bit slow. Now I’m that old lady. Life has limitations, and people mostly just get by with what they are capable of. There is no shame in saying “I can’t to that anymore”, and my eyes have been opened to those who suffer chronic health difficulties. I could have it so much worse, yet I still have to daily accommodate this condition in a hundred little ways. I try to keep them invisible; they are my problem alone. I don’t want to be that person who constantly reminds others of my health woes, and expect to be served. I’ll do what I can, and if I can’t do a simple thing like worm my way through a crowd of shoppers, then I’ll find a seat, do some people watching, and wait till the crowd thins out so I can walk a straight line. I have a disability, but I’m still me.

Thank you, Donna. I appreciate your willingness to let us take a glance into your life. I really connected with your description in the last paragraph of becoming a more compassionate person. I have a completely different perspective on this, also...as I have become, as you say it...now I am that older slow-moving person. I have discovered that Ataxia makes simple things difficult...and I now see people who struggle in a completely new light.

Until next time...Jason

Ataxia Profiles: Faces Of Ataxia...Mary Beth Farley

     Well, I took a week off for Thanksgiving...but it is time for the next member profile. Today it is indeed a privilege to present Mary Beth Farley to you:

     Mary Beth worked as a school teacher...until, at the age of thirty-eight, when she began to experience some random pains and difficulty while walking. The two things that she noticed first were that it had begun growing steadily harder to navigate the rows of student desks without running into them...and when she tried to exit her car at home after a day of work, she struggled...the combination of handling her bags and closing the car door had know become a monumental task. Mary Beth explains this experience...and that of then walking from the car to her porch as trying to walk in peanut butter...(was it smooth...chunky or extra chunky)? I suppose it doesn't matter, as most of us can relate to the difficulty that Mary Beth is referring to...I know that I certainly can!

     Mary Beth went right away to see a Neurologist and a Physical Therapist. After a year of this routine, she wasn't seeing any change...so, at this point, she was referred to a Specialist at the University of Minnesota. The Neurologist there told Mary Beth, the thought was that she had some form of ataxia. Mary Beth then told the Doctor that she had two uncles and a grandmother with Ataxia...which helped convince the Doctor that she was on the right track. So, at the age of thirty-nine, Mary Beth underwent her first MRI...which confirmed the diagnosis. It was indeed Cerebellar Atrophy, the opinion being that it was a form of Ataxic-Syndrome...but unfortunately, the specific type was unknown.

     Three years went by, when Mary Beth returned to have blood work done...which was sent to the lab at John Hopkins. Frustratingly, the Geneticist there was only able to confirm the original diagnosis of Ataxia...but unable to shed any light on the specific type. Mary Beth feels very strongly that she discover her Ataxia-type...so she plans to return for another blood draw and further testing. Hopefully, they can figure it out, Mary Beth!

     Currently, Mary Beth enjoys spending time with her dog, Annabelle. She enjoys taking Annabelle for walks and tries to do this, even going on small walks, whenever she can. She also enjoys doing crafts and journaling. Writing has grown difficult, so Mary Beth creates her journals with things that she finds and prints off the internet. She finds exercise to be beneficial and includes walking in her daily schedule.

     Mary Beth has allowed her disability to teach her not to take anything for granted...but to appreciate each day and to see it as a blessing She also finds fulfillment in doing for, and helping, other people in any way that she can. Mary Beth also has a deep Faith...and shares that she doesn't know what she would do without it or her church family.

    After coming to terms with her Ataxia, Mary Beth realized how rare Ataxia is...and that there weren't many in South Dakota with the condition. However, in 2017 she decided to start a support group...and in December of that year, they held their first meeting, located in Sioux Falls. Last September the group was able to hold their first Walk-N-Roll event to raise money for the National Ataxia Foundation...and also public awareness.

     Thank you to your group for doing that, Mary beth. And thank you for letting us all learn to know you better. It is a benefit to put faces on this Neurological Disease...and know that no one who goes through this is alone.

     That wraps up another Profile in this series...so, again...
     Until next time my friends...Jason

   

   

   

Ataxia Profiles: Faces Of Ataxia...Terri Lynch

     Hey, friends! Time for Ataxia Profile number fourteen...and today I am very pleased to introduce you to Terri Lynch.

     Terri is currently thirty-seven years old...and was diagnosed at the age of twenty-four with Oculomotor Apraxia 2, or AOA2.

     Growing up was a pretty normal time for Terri...she recalls with fondness running around, and playing with all the other kids. At the age of eleven, she fell in love with the game of basketball. Terri had a hoop set-up in her backyard and began playing all day. By the seventh grade, she tried out and made it onto the school's team. Terri played on a team for two years...during which, she was also involved with playing on the softball team. Like any other teenage girl, she also spent a lot of time just hanging out and having fun with her friends.

     Terri loved her involvement in sports, but at the age of sixteen gave it all up when she realized that she just couldn't perform the way she had been. After she graduated from High School, Terri began to notice that her balance was steadily continuing to grow worse. She had been going to see a Neurologist since the age of seventeen....and eventually an MRI was done. The Dr. told her at that time that she had Cerebellar Atrophy. Several years later, however, she was sent to see a Geneticist. The initial blood test came back negative...but when the genetic test was repeated the next year, Terri was told that her previous diagnosis of CA had been changed to AOA2.

     She had ambitions of going to a four-year University...and had been accepted at two, but these plans became...in Terri's own words..." somewhat deferred ", as her conditioned intensified. She was now finding herself playing catch-up and trying to deal with the new symptoms that her AOA2 was now throwing at her. She did go on later though and achieve an Associate Degree in criminal justice.

     Even though she now experiences a lack of good balance and coordination...Terri does not let that stop her from doing everyday tasks...instead, it fuels her. And although she can't play sports anymore...she still loves them and really enjoys watching them on television...and live too, on the occasions when she gets to attend one. Terri also loves to travel...unfortunately, being on a fixed income puts a limit on how often she gets to enjoy seeing other places.

     Finally, Terri wants to encourage us all to never give up...to do whatever we can...for as long as we can do it!

     Thank-you Terri, for sharing with me and allowing me to write this Ataxia Profile about your life journey. It has been nice getting to know you better and I wish the best for you going forward.

     I also wanted to point out the advice that Terri gave to us...to keep active in whatever we can do and never give up. I know many of you do this already...and lots have this as a daily motto. But it's good to have reminders from time to time...and I am grateful that Terri has chosen to refresh that particular message for all of us.

     Well, that wraps up another Ataxia Profile for this week. Until next time my friends...Be safe- Jason

   

Ataxia Profiles: Faces Of Ataxia...Mary Liebert

     Hello, friends. Let's keep up the momentum, by meeting another person in the profile blog...and today I am pleased to introduce you to Mary Liebert.

     Mary is fifty-seven and currently resides in Lafayette, Louisiana. She is a single mother with two daughters, three grandchildren...and a handful of cats...( I only have one cat, but feel that I can also use the term "handful" when referring to my single cat)!

     Mary worked full-time for twenty-eight years at UPS as a clerk but has been medically retired now for close to five years. She also holds a college degree in general studies that she received at the University of Louisiana in Lafayette.

     She is number six out of eight children...and inherited SpinoCerebellar Ataxia type One from her father. Sadly, Mary's father and two brothers have passed due to complications that were related to SCA1. Mary was pre-symptomatic by the age of thirty-two...which is when she was officially diagnosed. However, she made it to the age of thirty-eight before the symptoms began to fully manifest themselves. She refers to these as mostly being mild, though...and still is able to enjoy the ability to drive. Mary has to depend on her rollator to get around about ninety-five percent of the time...and states that a general sense of balance is currently the main issue. ( In this case, your issue is also my issue, Mary).

     Mary loves spending time with family, traveling, listening to audiobooks, engaging in water sports and working out in the gym, working in her yard, and watching the birds as they enjoy her bird feeders. Mary also loves to laugh and enjoys finding funny memes and pictures that she can share with her friends on Facebook. Doing these things makes her happy...and Mary strives to remain joyful...to embrace her life with a positive attitude and cheerful outlook. In fact, she would like to say that happiness is one of the areas in your life that you have absolute control over...so why not choose to be happy! I admire that point of view...so thank you, Mary

     She also wants everyone to know that you should be exercising any way that you can...It really does help, both physically and mentally.

     Mary would like to leave us with one more piece of advice....which is to laugh! After all, there is a reason it is the best medicine!

     Great advice, Mary! I appreciated the opportunity to get to know you a little better...so thank you for letting me write this profile about you. Actually, a big shout-out to everyone who I have written about so far...and to those who have sent me their info and are still waiting in the virtual line. And, if you are reading this and have not sent me anything...I encourage you, as we all can learn from each other. Reach out to me...I've got some general questions that I can send to you.

     Well, that wraps up another Ataxia Profile. Thanks again, Mary!

      Until next time my friends...Jason

   

Ataxia Profiles: Faces Of Ataxia...Cheri Valle

       

     Hello, friends...it is time for another profile in the series. Today I am pleased to present to you as the #twelve, Cheri Valle.

     As a teenager, I wanted to fit in, to be like everyone else.  But I wasn’t.  I couldn’t run around the football field.  I was dismal at sports.  I couldn’t get myself over the vaulting horse in gymnastics.  My parents took me to an orthopedic doctor who basically said there was nothing wrong. Boy was I glad when those high school years were done!  And I kept trying to fit in.  I learned to ski, and went on ski trips with my coworkers – and spent my entire skiing career on the green slopes, never graduating to anything tougher.  I rode my bicycle until I got so tired of falling off that I quit doing it.  And kept pretending that I was like everyone else….  

     By my early 30’s I was a couch potato.  And I convinced myself it didn’t matter. I had my career, my children, a house I was rehabbing.  I was busy, I was happy.  But by my early 40’s it was clear there was SOMETHING really wrong, but what?  My neurologist called it lots of things, finally settling on “atypical MS”. Then at age 50 – after a couple of years of working on and off again – I collapsed and ended up in the hospital for 3 weeks.  My sister visited me, and the neurologist grabbed her and did a neuro exam out in the hall.  He came into my room and said, “I know what it is.  It’s genetic.  It’s Spinocerebellar Ataxia.”  I had the genetic testing, such as it was at that time more than 15 years ago, but no particular SCA type popped up.  The neurologist said that it didn’t matter; more than 50% of the people with SCA were of an unknown type.  So that’s me, SCA – unknown type.  Finally, at age 50, I had a name to put on this thing that, in my eyes at the time, had pretty much ruined my life.    

     I never went back to work after that hospitalization.  After 30 years of working at senior levels in high tech, I felt like I had lost my identity.  For a while, it didn’t matter all that much since I could barely get out of bed.  Then finally I began being able to rejoin the world, a little.  I got my first wheelchair – freedom!!! I could go to the grocery store without being afraid I would get to the back of the store then be unable to return to the front under my own power.  I discovered, rather by accident, that I am less sick in a less humid environment, so I packed up and moved to the very rural high desert community in southwestern Colorado where I live now.  And began trying to discover who I am, if I’m not a high tech person.  

     It’s an interesting question.  Who am I?  I am a person who spends most of her time literally in bed – the only place I am really comfortable is in my super fancy adjustable bed with the super fancy mattress pads.  But when I’m talking to someone on the phone, they don’t have to know the person on the other end of the phone line is propped up with the back of the bed at a 45-degree angle, in her PJ’s, with a cat or three on her legs.  I sound just like anyone else, as long as no one sees me.  Most of my online friends don’t even know about my power chair – the one with every bell and whistle you can possibly get on a power chair, that elevates and reclines and does every other cute wheelchair trick.  

     I won’t claim it has been all that easy.  Going from being the person in charge to the person forced into retirement at age 50.  Going from the person who built room additions to the person who can’t stand on a ladder.  I have a cat named Junie, who only has two and a half legs – in the rear, she has a short stump on one side and no leg at all on the other.  But she doesn’t seem to care. She doesn’t compare herself to other cats, or get depressed, or see herself as limited.  In fact, she’s the cat in charge of my household – she whacks the other cats to keep them in line.  She accepts her body totally and just deals with what is.  I try very hard to learn from Junie and accept that this is me, and I just have to deal with it.  

     And I have found my place and discovered who I am.  I am president of our local all-volunteer humane society.  When pet owners are faced with expensive vet bills they just can’t cover, I help them track down funding. I write Facebook posts to raise money, or to find a new home for a dog or cat who has nowhere to go.  Every once in a while, I get to bottle-feed some puppies or kittens, though mostly I leave the hands-on stuff to others.  Most days, from the time I wake up in the morning until I decide to quit for the day, I’m either on the phone or on my computer, doing something related to helping animals.  I’m literally known around the country as a cat expert on some really obscure topics (if your cat ever develops an esophageal stricture, I’m the person to contact).  I went to Walmart earlier today, and someone stopped me and said, “You’re with the humane society, aren’t you?”  I have no clue how she knew that.  Yup, that’s me – the crazy cat lady charging around town in the bright red power wheelchair.  

  

     It’s kind of interesting, how that happened.  16 years into my retirement, I’ve found the “job” I probably should have been doing all along.  I’m having way more fun now than I ever did while working for a living. All because of SCA. There really is a silver lining….  

        Thank you. Cheri. Thank you for your work at the Humane Society...and the reminder that we often need to here...that some good can come from a handicap. It depends largely on your outlook and attitude. I needed to read that...because sometimes I feel myself getting drawn into a self-focus mode that only sees what I have lost....seeing only my current limitations. But then, I count my blessings and re-focus on the possibilities before me.

     Well, that's another profile. Until next time, my friends...Jason

Ataxia Profiles: Faces Of Ataxia...Kelly Rutledge

 

     Greetings...it is time for the next installment in the Ataxia Profile series. Today's entry will be number eleven...and it is with pleasure that I introduce and present to you all, Kelly Rutledge.

      Kelly was diagnosed with an unknown SCA, (if you want a number Kelly, just tell people you have SCA 24/7), in two-thousand-and-fourteen at the age of thirty-five. Like many...myself included...Kelly remembers that as a child she was always known as being clumsy. Her marked lack of finesse was often noted by family and friends...and quite often joked about. The more jokes told...the more Kelly became determined to be normal...to stand out less.

     Kelly became a competitive gymnast...until a severely broken arm put an end to that aspiration. After she recovered, she decided to take up dance. During High School, Kelly performed on the Drill Team...eventually becoming an officer of the sixty-plus member team. Her involvement at that level earned Kelly a college scholarship and a spot on the very elite collegiate dance/drill team, known as the Kilgore College Rangerettes.

     Kilgore College is a Junior College, so after two years Kelly transferred to the University of Texas in Austin. There she majored in Kinesiology and graduated in two-thousand-and-one...with the plan of going on further to Physical Therapy School. Before this, however, Kelly decided that she would first backpack the world. To date, she has been in over forty countries! Kelly loved the experience...but never did make it back to PT School. She got married instead...and as she jokes, "life got in the way"!

     Maybe, hahahaha....but, Kelly now has a beautiful family:

   Kelly is very active...and has always been a very determined person. To keep herself in shape, she began working out with a personal trainer a few days a week. One day, her trainer noticed something slightly "off" with Kelly and advised her that she should probably be seen and checked out by a doctor. She was alarmed at this time to note that she also could no longer run!

     Kelly went to see a Neurologist...who at first suspected MS. He ran her through an MRI and was at a loss when the results came back negative. Kelly then went to a second Neurologist, who happened to specialize in movement disorders, and Kelly was given the diagnosis of Ataxia. Five years later...several genetic tests...and Kelly's Ataxia is still unknown, but she continues in her quest to find her particular type. She currently maintains a full-time job, volunteers and is active in her church, and rides her trike on a regular basis.

   
     Kelly struggled with a fear...that there was a potential that Ataxia was beginning to create, and force her into, a new identity. She began feeling disconnected and isolated from her "normal" friends, and was experiencing a drain from the need to explain to everyone. She needed to find purpose...to feel like she could contribute...that SOMETHING positive could come out of this thing called Ataxia. Kelly attended the NAF Conference held in Las Vegas in two thousand and nineteen...and she came away from the weeklend knowing what she needed to do. She established the North Texas Walk-n-Roll. She envisions the event to be big...and dreams that over the coming years it will grow...becoming a huge source for raising money and awareness.

     Though it is not always easy, Kelly has learned that accepting herself...while letting go of that which she cannot change...has aided her, as she deals with Ataxia in her life...and this positive outlook has become the lesson that she would like to pass on. She also wants her fellow Ataxia family to know that they should never stop dreaming. A physical disability does not make you less of a person...God loves you regardless!

     Thank-you for telling us your story, Kelly. It is important that we share our lives with one another...our struggles, insecurities, victories when we have them, and strengths that we learn. Sometimes it takes courage to share ourselves in this way...but I think we gain strength when we hear from one another...I know I do.

     Your story is inspiring, Kelly...so thank-you, again. Well, that wraps up another Ataxia Profile.

     Until next time my friends, Jason

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 



 

   
   

Ataxia Profiles: Faces Of Ataxia...Donny Gaudet

     Hey, my friends...It is time for another profile. Today I am happy to introduce you to Donny Gaudet. Here is his story...

     It all started for me seven years ago when I was forty-eight years old. My symptoms came on very quickly, hitting me very powerfully. By eight months my wife needed to take me into the Sunnybrook Hospital in Toronto Ontario to seek an answer to what had hit me so suddenly. I was prepared for... what I thought were good odds, that I may go in and not come out again.

     My first symptoms revolved around sleeping. All of a sudden it seemed, I was experiencing problems getting to sleep and then staying asleep once I actually got there. I was getting an average of three to four hours of rest every night. This went on for about two months when I noticed that now it appeared that my balance was rapidly declining. I was beginning to trip over things, and I was also falling down a lot and unable to get myself back up. I started having trouble with my hands and found it very difficult to write and maintain my grip on things. I became anxious and unable to settle down or rest for very long. I felt a need to constantly pace around and found myself wandering around during the night, as my wife and kids slept. There where many nights when I would fall down the stairs and wake them up.

     My wife then began to notice changes in my personality. My likes and dislikes were becoming uncertain...even foods that I had always loved, I would no longer eat because I couldn't remember having eaten them before, or liking them. Besides not knowing what I used to like, and what I didn't, I now began to choke on whatever I did eat. My speech became slurred, and I began to also stutter...making it hard for anyone to understand me.

     Thinking that maybe I had had a stroke my wife took me to the local Hospital. After conducting all of the necessary tests, they told me that I had not had a stroke. However, they did not understand why I was experiencing my symptoms and instructed me to follow up with my family Doctor. When I did see my Doctor he sent me to have a CT scan, thinking that they had missed something at the hospital. The opinion of that Doctor was that I was depressed and prescribed to me some antidepressants. I then had to wait for referrals to see a Neurologist and a Speech Therapist.

     It took six months to get in to see the Speech Therapist...and by then I was having tremors all over my body. My muscles were shaking uncontrollably, with the effects on the right side being markedly worse. By this point, I had lost fifty pounds.  The Speech Therapist accessed that the weight loss was due to the fact that I had lost over fifty percent of my muscle control and was now unable to swallow correctly.

     My wife and I decided that enough was enough, and she took to a larger Hospital...where they kept me for nine days. During those nine days, the medical team put me through several tests, including an MRI, CT Scans, blood work-ups, and full-body scans. The outcome was atrophy of the Frontal Lobe and the Cerebellum. The Neurologist told me that I had a form of SCA with Parkinson's Syndrome symptoms. I continue to see the Neurologist every six months for checkups.

     Once I was released from the hospital and sent home, I really started to struggle with my disease. I became depressed and I didn't want to go anywhere...nor did I want anyone to see me. I had been a transport truck driver for twenty-five years, driving all around Canada and the U.S. Because of this disease I no longer could drive, and my license was taken away from me.

     Despite these past experiences, my advice to anyone is....to NEVER give up! Always be thankful for each day as it comes. As much as possible, remain positive....and do the best that you can.

     I am still able to get around on my own without the need to use a cane. Most days I find things to do around the house. I can still climb on to our riding lawn mower and cut the grass...and most days I read and practice my writing. I am still able to work out and lift weights, and I continue to use my exercise equipment.
----------------------------------------------------------------------------------------------------------------

     Thank you, Donny, for sharing your experience with us. Until next time....

Ataxia Profiles: Faces Of Ataxia...Linda Snider

     When I first envisioned doing this blog, I was thinking that most of us have a limited voice. We have valuable life experiences, as we deal with a disability...and we have a lot of positive things that we can share. Life lessons that we have learned, or picked up along the way...that would be beneficial in someone's life that has a struggle similar to our own.

     This will be the fourth entry in this blog series on introducing people in the Ataxia Community. And even though I have just started on this particular journey...I am proud of each entry so far because of the people each article has represented. They have been incredible lives...and today's entry is no different. I am honored to present to you, Linda Snider.

     In nineteen-ninety-four at the age of twenty-one, Linda learned that she had Spinecerebellar Ataxia type 1. She was the second person to be tested genetically for Ataxia. Linda had a fifty-percent chance of having a hereditary Ataxia because she grew up within the reality of having a father who also struggled with the Neurological Disease/Condition. Linda's diagnosis was labeled as SCA1....the "1" designation was because it was the first Ataxia gene to be discovered.

     The rest of what Linda has to say to us I am going to let her put in her own words. Before I do that though...I want to bring out something I learned about Linda in my email interactions with her that I think is very significant.

     When Linda was first disgnosed she was told that she would be in a wheelchair by the age of forty. Hear me on this: A wheelchair is not the focus here...and I am not implying a wheelchair is the end of a meaningful life! It is quite the opposite. A chair has absolutely NO reflection on the individual or the joy they can find in life. But the point I want to address is that when many of us first receive a diagnosis, (myself included), we are also told some medical predictions about what the future holds for us. Many lives are shattered by these bits of information...as now we find ourselves processing a rare disease AND the reality of a life spent in varying states of disability. What many of us come to realize later...sometiomes years down the road...is that these "truths" about our lives were no more than predictions that were based on statistics. Many of the symptoms can be slowed down by a positive outlook and attitude, consistent exercise, or diet...just to mention a few.

     Anyway...that's enough from the peanut-gallery....let's hear more from Linda:  

     I was diagnosed the summer between college and medical school so I was a student. I finished medical school and am currently a physician specializing in Radiology. Hobbies haven't changed much although I have to do them differently. I love to dance, scuba dive, and ride my bike but now I rely on a partner to keep me balanced dancing, use a boat specially designed for wheelchairs and disabilities to dive and use a recumbent tricycle to ride. 

Staying active and doing anything you love is helpful not only physically keeping up motor skills but also it's relaxing and increases your sense of purpose and humanity. Knitting, reading, and coloring are good for hand-eye coordination and you aren't being judged on the quality of the work so who cares if it's not perfect. 

Having ataxia has taught me that so many people will come together to support you in your daily struggle. I love the support and encouragement of others and feel their love in everything I do. I have learned that I am tougher and stronger than I knew. I'm a fighter and I don't give up easily. I see everything as an obstacle to be overcome. I'm positive and upbeat naturally and have the ability to help others see their situation from a different perspective so they too have a slightly easier time. It's all about perspective. No matter how badly you think your life is, there's someone else out there dealing with worse. I was born with all my limbs and at one time they functioned fine. Now, that's slowly disappearing but there are people that have had ataxia since the age of 2 or were born without arms and legs. 

I help raise ataxia awareness by running a local support group. I'm involved with the annual ataxia conference and try to educate the Nebraska and Iowa region about ataxia. I've met with our local neurologists and go to other support groups in the area to help with their fundraising efforts.

My piece of advice. Although I may struggle, I will never give up. This is a battle and although everyone has a battle to fight, Ataxi is mine and I use the support and love of the people around me to rally.

Thank you, Linda. Again, it was an honor to provide a place for your story. One more place that you can access Linda's story is on YouTube. I will provide the link to that video...and I highly recommend that you watch it if you have not viewed it before. It is very informative about her life with Ataxia...but also about others in her Support Group.
https://www.youtube.com/watch?v=8qlqFQOrb_4&t=40s

Until next time....