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