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