Ataxia Profiles: Faces Of Ataxia...Mary Scheetz

   
     Hello Everybody, it's time once again to bring to you another Ataxia Profile...and this time I will be putting my focus on, and introducing you all to Mary Scheetz.

     Mary lives in Portland, Oregon...and twelve years ago, she was diagnosed with Spinocerebellar Ataxia number Eight. However, if we look back to the nineteen-eighties, that's when the process that would lead to her eventual diagnosis seemed to begin. At first, Mary started experiencing food allergies...and then just a few short years later, she developed prisms in her eyes. Sometime around the year two-thousand, Mary noticed that her left knee had become stiff...and she would often fall when stepping off a curb or going downstairs.

     Mary consulted a Chiropractor...but after trying for several years to follow their advice, and finding little relief, she turned to an Orthopedic surgeon in two-thousand-and-eight. The Doctor saw something unusual and immediately sent her to see a Neurologist. Upon the initial exam, the Neurologist diagnosed Mary with Multiple Sclerosis...but after doing an MRI and bloodwork, Mary's diagnosis was changed to SCA 8.

     Currently, Mary likes to stay active and attends an exercise program called Rebel Fitness twice a week. It is a program that has mostly been set up for patients who have Parkinson's...but they will work with anyone that has mobility issues. Through the activity of boxing, they focus on movement and balance...but they also offer classes that concentrate on vocal skills. Among these two, are classes offered that focus on dancing, nutrition, yoga, Thai Chi, and golfing techniques. Mary also enjoyed attending a water aerobics class for a season...and moved into this form of exercise when her loss of balance no longer enabled her to attend the work-out class that she had previously been doing. Eventually, she needed to stop attending this class as well...when the dressing room, walking on the slick deck and no longer feeling comfortable in deep water became issues for her.

     Mary also really appreciates being able to attend an Ataxia Support Group. She feels that a group that she can attend...where there are people who really understand what she experiences and goes through on a daily basis...is a precious thing!

     One of the lessons that Mary has learned in this...to refrain from being so hard on herself. I hear you Mary...and this can be a tall order. We can quite often make our situation worse, (and by we...I am thinking strongly of me)...so this thought is ALWAYS a good reminder. We need to practice patience...not just with ourselves, but with those we come into contact with that act in negative ways...who, more-often-than-not, possess no knowledge concerning Ataxia. If, after educating someone...they still choose to see you as faking to gain attention, or as a hypochondriac...then, as Mary says...that's their problem.

     Mary would like to leave us with one more thought, or piece of advice.  We all need to find someone, or someones, to talk to. Having people, such as through a support group or the many Facebook groups, is a very valuable thing!

     Thank you for the encouraging story, Mary. It has been a privilege and an honor to write your story...and I am happy to present it to the Ataxia Community to read...as we all learn to know you better.

    As we continue to work together...and every time we share our stories with one another, Ataxia loses and we gain. We gain both in encouragement and strength...so, let's keep those stories comin'! If you haven't yet sent me yours then please consider doing so!

    That's all for know...take care, be safe...and until next time my friends...
    Jason

Ataxia Profiles: Faces Of Ataxia...Travis Guy Lebel

     It has truly been a joy and an honor for me to write the Ataxia Profiles over the past several months. I get to know each person that I have written about...sometimes probing deeper with the people being featured each week in areas of interest...so that I can do as thorough a job as possible.

     Making that extra inquisition brings us to Travis Guy Lebel...and the title that Travis would like to be applied to his Profile. Which is: Never Give Up...and Always Find A Way

     This is a perfect title, and an excellent way to begin this Blog...so thank you, Travis.

     Travis has been dealing with Spinocerebellar Ataxia since his birth. An official diagnosis didn't come until several years later...but Travis confides having some difficulties very early on and his parents identifying quickly that something wasn't quite right. He didn't learn to walk on level ground until the age of fourteen-to-sixteen months...and didn't walk outside until over the age of two.

     For several years...between nineteen-sixty-seven and nineteen-seventy...Travis was taken to be seen by numerous specialists...but does not remember exactly when he first heard the term Ataxia. He grew up knowing that he was different...and many years later, while undergoing a routine physical exam, he asked if he could be seen by a Neurologist. Travis wanted to discover why his balance and coordination were off....and after many tests, numerous negative results, and four different Neurologists...he was given a diagnosis of an unknown SCA.

     Travis also recalls...( I was going to add with fondness, but that just doesn't seem to fit)...that he suffered from a constant bruising of his shins up until about the time he began High School. In reflecting on his childhood, Travis also remembers that he never possessed the balance necessary for him to learn to ride a bike.
 
     Travis attended High School at the Bellows Free Academy...were he was the captain of the junior varsity baseball team. He attended Southern Vermont College, and it was during this time that Travis felt his Ataxia go somewhat into a state of remission. Even so, Travis has always made a point to adapt to defeat any obstacle that stood in his way...and to find a way to accomplish the things in life that he wants for himself. He graduated with an Associate's of Science in Bussiness Management,

     He maintained a full-time job for a little over thirty years...finally giving in when Ataxia made work too difficult...and then filed for Long Term Disability. Nonetheless, Travis maintains the attitude of work that he has always possessed. He has also been a longtime weight lifter and continues to work out three to four times a week.

     In closing, Travis reflects that none of the early Physicians could come up with any answers...so he just had to adapt and learned to make his situation work for him. He knows that life is never easy...but maintains that nothing can stop you from continually adopting a positive attitude. Travis remains happy and enthusiastic. His motto again, which bears repeating...and the title of this blog about Travis's life, is: Never Give Up...and Always Find A Way
   

     Thank you, Travis! It has been a pleasure...and until next time my friends...
     Jason
     

Ataxia Profiles: Faces Of Ataxia...Celia Baculi

      For today's Ataxia Profile, I am featuring a lady from Salem Oregon. She and her husband Ray attend the two same Support Groups that my wife and I attend...and it is my pleasure to introduce Celia Baculi to you. I am going to let Celia tell you her story...in her own words.

     I was 52 when I was diagnosed, in 2016.    I was diagnosed based on my MRI and symptoms.   I am a medical mystery--I have been genetically tested but I was negative for everything.  I am hoping to retest in a few years and have a specific diagnosis then.

Before my diagnosis, I volunteered at the local high school in pre-college planning.  It was brutal to give that up, but eventually, I became too tired to spend a whole day or even a few hours at school.  I can still sew/knit/crochet, so I try to do a little bit each day to keep my fine motor skills up.  

Before ataxia and children, I was a manufacturing consultant and got to travel around seeing factories (one of my favorite things).

I speak Spanish well, and it is on my bucket list to spend some time in southern Mexico or Guatemala in the Mayan culture.  I know a lot about Spanish books for children also.

I go to the gym several times per week with my husband, and I also do physical therapy, strength training, and Pilates training.  I also take Riluzole, 4AP, CBD, and I would like to try Tanganil. My sons and husband tease me mercilessly about being a pothead, but the CBD helps me sleep.  I know a lot about importing medicine (there is an exception in customs law), and I am very good friends with Mr. Google. I do tDCS regularly and wear my balance vest.  I wear sticky socks all the time and they help! Handwriting practice also helps when I remember to do it.

I attend the support group meetings in Albany and Portland (Oregon) when I can.

I no longer drive, so my high school student son takes me to some appointments.  My family has been an absolute rock with this difficult, unplanned turn of events called ataxia.

If I could give advice, I would repeat what a dear friend said to me a long time ago, which is to allow people to show how much they love you!  I would also say to take things one day at a time like you were parenting a small child. Make it through today, and let tomorrow take care of itself.  We are really lucky we are living today, with hope for defeating this monstrous disease, and I am hopeful that something will be discovered that will benefit us.

Thank you, Celia...for sharing your story with us. We all continue every day to live, and strive to learn, the best ways to deal with Ataxia. Your story has become an important part of that process.

Until next time my friends, Jason

   

Ataxia Profiles: Faces Of Ataxia...Ashley Sharp

     For this week's Ataxia Profile, I will feature...and introduce you to Ashley Sharp.

     At the age of...or right around the age of ten-years-old...Ashley was diagnosed with Friedreich's Ataxia (FA). At such a young age...she had no way that she would be able to anticipate how this would shape the rest of her life...and Ashley's parents never talked about it. However, she did have a support system...and experienced an abundance of help at school. Ashley's friends did all manner of things for her...from providing a backpack that she could grab on to for support...to giving her a helping arm to steady herself...and providing piggyback rides from class to class. Her writing also began to suffer from the affects of FA...but her teachers were very gracious...and Ashley has wonderful memories of those early years...which she notes, outweighed the bad.

     Ashley has always been close to her family...but she became tighter with her parents when, sadly and tragically, her brother took his own life. She witnessed the emotional pain and anguish that they went through...and his death changed not just her parents'lives...but also the lives of everyone who knew the family.

     One of the lessons that having Friedreich's Ataxia has shown Ashley about herself...is that she is mentally strong...and being so helps her to push through many obstacles that get in her way! Every day Ashley's thoughts and her physical reality try to drag her down...but she is determined to remain positive. Ashley knows that the only one that can change her thought is herself.

     This is a great message for us...and an example to us. More power to ya...thanks, Ashley!

   
     Thank you, Ashley...thank you for sharing with me a little bit of your story so I could write it...and we could all come to know you a little better.

     And that's another Profile...so until next time my friends...
     Jason

Ataxia Profiles: Faces Of Ataxia... Marie Lefevre

     For this week's Ataxia Profile, we are going to be introduced to Maria Lefevre...and get to know her a little better through reading her story.

     Marie first began to notice physical difficulties at the age of twenty-nine...but had nothing done until she was thirty-nine. At this point, Marie was diagnosed with Multiple Sclerosis...which was changed when she was forty-five to Cerebellar Degeneration.

     Marie looks back on her life before the diagnosis of Ataxia...and realizes that she didn't take the time to appreciate what she had. She had the ability to do whatever she wanted...and everything from working, eating, and everyday simple tasks came mostly without effort, and like so many of us did before these things became an issue...never gave these things a second thought. Marie reflects on her life...and comes to the conclusion that she has been much more appreciative in the last thirty years than she was in the first thirty.

      Marie has volunteered for many places that provide aid...and began the road of service at a Center for MS patients. She also spent some time working as a teacher's assistant in a classroom for children with Autism. Marie decided to study for a career in childcare...but soon realized that this was not a good fit. Instead, she studied adult education, and at forty, she also did course work in community service studies. It took her almost six years to complete because she was doing it all on a part-time basis...but she believes that if a person wants something bad enough they will find a way.

     Marie remains independent. She relies upon herself, and an example of this is her furniture...if it is too heavy to move by herself, she either replaces it with something lighter, puts it on wheels, or sits on the floor and pushes it with her legs (which I have affectively done before). I have also put furniture on a blanket or towel...sat down and pulled the furniture to me, as I have continued to scooch backward a few feet at a time. Anyway, this reinforces Marie's belief...that if you desire to do something bad enough...that you will find a way.

     One of the benefits of pushing furniture with her legs...is that it keeps the legs exercised and strong. Marie was told when she was first diagnosed that she should just go home and sit...that she would most likely be in a wheelchair by the age of forty or fifty at the latest. But at the age of thirty, Marie was not willing to accept that...she felt too young for that. She lives alone and her Ataxia has taught her to depend on herself. Marie has one daughter and four grandchildren.

     Marie also likes to garden...and has served as a volunteer gardener for the last three years. Walking in her own yard has become difficult as of late...so she has either planted trees to hold on to or placed long sticks in the yard that she can grab...with the note that they need to be long enough that she won't fall and stab herself:-) Good idea, Marie...safety first...hahaha. She does not let anything stop her from doing the things she loves and finds fulfillment in...and will often sit down to do her gardening. This gives Marie the motivation to keep moving and a feeling of worth.

     I admire that Marie...because one of the saddest things to me is seeing people easily defeated by Ataxia or other physical challenges. With Ataxia, in particular, I have witnessed too many who use it as an excuse to give up and become more and more dependant...so thank you for your story of encouragement Marie...and giving me the privilege to write it.

     That's another Profile...and until next time friends...
     Jason
   

Ataxia Profiles: Faces Of Ataxia...Breaunna Hoffman

     Ataxia Profile number twenty-four...and let's get right to it. Today, I am pleased to introduce Breaunna Hoffman to you...

     Breaunna is twenty-three...and lives in Pennsylvania. Her journey began at fifteen when she was diagnosed with Scoliosis...and was told that she would need to undergo surgery. However,  her mother questioned whether or not Scoliosis explained Breaunna's moment of stumbling...which she was experiencing whenever she would initially rise to walk. The doctors confirmed that it would not...and so further testing was done. After a period of several months, a diagnosis of Friedrich Ataxia was given. From that day life changed for Breaunna.

     Up to this point, she had been spending her days like any other average fifteen-year-old...very active. Breaunna played all types of sports...and was very involved in cheer, which was her favorite. She was especially devastated when she had to quit her involvement in that particular enterprise. However, other than the effects of her Scoliosis, and a little bit of the initial staggering when first standing up... she was not yet experiencing any other signs from her early diagnosis of FA. She could not imagine that just eight short years later she would be dependent on a walker.

     But as much as she thought using a walker would be horrible...it turned out that Breaunna grew to appreciate it. Because, she found that her walker gave her freedom...it offers her stability and allows her to go shopping, hang out with friends, and enjoy herself during the time that she spends with family.

     One of the great lessons that Breaunna has learned from having a neuromuscular disorder...is a lesson that is important for us all to hear and pay attention to. The life that she now finds herself in has humbled her. In Breaunna's words...before her diagnosis, she wasn't the loving, caring, and empathetic person that she is today. The reality of FA has caused her to slow down...reflect...and look around. She realizes that everyone has a different story to tell...and there is no room for judgment anymore.

     This is such a true assessment...and definitely my experience as well. This outlook also seems to be a pretty common theme for many...but it can't be stated enough, so thank you Breaunna.

     Breaunna finds raising awareness for FA to be very important and tries to spread knowledge whenever she has an opportunity...be it through social media or participating in a public event...such as the rideATAXIA SoCal at Huntington Beach that she attended. She also went to her first FARA SoCal event in 2018...and went to the FARA/UCLA FA Symposium. Her family and boyfriend work towards bringing awareness to FA as well.

     Breaunna would like to leave us with one piece of advice...which is to reach out to the community. You ARE NOT alone...though it can feel that way when you first receive that diagnosis of a rare neurological disease/disorder. There are more of us than you are initially led to think...so reach out because we are here for you!

     Thank you Breaunna for sharing your story with us. We benefit from each other...and your story is inspirational. Keep sharing and raising awareness...I wish you the best.

     Until next time my friends...

     Jason

Ataxia Profiles: Faces Of Ataxia...Dana Creighton

     For today's Ataxia Profile, I am pleased to introduce Dana Creighton to you.

     In Two-Thousand-and-Six, at the age of Thirty-Three, Dana went to the Athena Diagnostics Lab to undergo a blood draw and genetic workup. She went because Spinocerebellar Ataxia ran through the generations of her family. Her mother had struggled with it...and had passed away at the age of Fifty-Three. She had experienced three of her siblings pass away who had been similarly affected as well...and Dana's mother had always been terrified that she would pass this on to one, or all of her children.

     Dana had been waiting for a long time to find out if this would be the case...so she said "no" to waiting any longer...when it was suggested that she make an appointment to talk with a Genetic Counselor after the results of her blood work came back. She, instead, asked them to immediately call her when the results had come in.

     Dana was working at UNC-Chapel Hill in the Public Health Research Department at the time...and on December twenty-eight of that same year received a call with the news. She had definitively been diagnosed with Spinocerebellar Ataxia Type 2. She remembers feelings of deep sadness...shock, and devastation. She left work early that day...just to spend a few precious hours by herself, and then went to pick up her husband after his twelve-hour shift at the hospital. They spent time crying together.

     I think that in one way or another we can all relate to Dana. The first time we are given the news is a blow...and can be devastating. I remember hearing the words of my diagnosis and feeling numb. I think we all were hoping, at that moment...that the Doctor would look at the results again and be like, "oh you know what, I was looking at the wrong chart...no, you're fine".

     Since that time, Dana has found a passion for working out and getting daily exercise. She sees a Physical Therapist a few times a year and incorporates these exercises into her daily routine. She also rides her Catrike (three-wheeled bike). She feels that there is nothing she can't do...but jokes there are, however, a lot of things that she doesn't do very well! Dana feels that, for her, exercise is a re-calibration of the connection between her mind and body.

      On her journey towards the healing process, Dana has found that regarding her trauma... writing about her innermost feelings has been very therapeutic, both emotionally and spiritually. She also enjoys helping others. Dana loves to support others...but also, is not afraid to ask for help when she needs it. This is one of the lessons she would like to pass on...we are in this together and helping one another is just a part of who we should be.

     Thank you Dana for allowing me to write your story...so that we could all come to know you a little better...and know your story.

     Until next time my friends...
     Jason