Ataxia Profiles: Faces Of Ataxia...Simone Van Alstine-Jasch

     It's time for another entry in the Ataxia Profile Blog...and for today's, I am happy to introduce you to Simone Van Alstine-Jasch.

     Simone's story begins in nineteen-ninety when she was nineteen and attending The Boston Conservatory of Music, Dance, and Theatre. Simone remembers the exact moment like this...when everything began to change..." one moment I was sitting on the steps outside the building waiting for a friend...and the next I was on the ground after standing up". This incident sent her to the hospital where she spent a week being tested and having numerous blood-draws...only to hear, after all of that, that they didn't know what was wrong with her.

     Simone spent the following three months talking with psychiatrists and psychologists...and finally given the diagnosis of Cerebellar Atrophy. In nineteen-ninety- seven, she was given a more exact neurological explanation...that being Spinocerebellar Ataxia type 2. However, this conclusion was reached by a process of elimination...because, in the late nineties, only tests for types One and Three were available...and she had tested negative for these. In fact, twenty-plus years later Simone applied for consideration in a drug trial for SCA2...and was told that instead, she may have Ataxia Ocular Apraxia.

     Simone is an Air Force housewife and fills her days with housekeeping, reading and writing fiction, watching television, and exercising. She also does some volunteer work for a Hospice...and is greatly aided in this service by her gifts for sympathy and her strong musical talent. She finds great comfort, peace, and strength in the Lord...and, although she has now lost some of her physical abilities...acknowledges that she simply continues to be Simone.

     This is a powerful point that Simone just made...and I want to interject here with a comment on Simone's observation...because I think it is an important one, especially for those who might be struggling to process a new diagnosis in their life. It is quite common to view yourself as two separate people...who I was before (pre-diagnosis), which was normal and happy...and who I am now (post-diagnosis), which is limited and sad. However, this is NOT true. You are the same person now as you were then...with the same gifts as before to offer...life for you now has just become a little more challenging...but you can't let yourself become defeated and give up. You learn lessons that will probably change or strengthen you in different areas...but the physical limitations that come with Ataxia do not fundamentally change who you are.

     Which brings us to the lessons that Simone's disability has taught her...and what she has learned. It has taught Simone patience...it has deepened her ability to laugh at herself...and taught her to not sweat the small stuff. Her advice to others is to concentrate ALWAYS on what you can do, not on what you can't...and to remain positive, even though there are times when this may seem to be hard to do!

   

     Thank you so much for your words, Simone...and thank you for sending me your story so we could all benefit from it and get to know you better.

     That wraps up another Profile Blog...so until next time, God Bless you all my friends.
     Jason

Ataxia Profiles: Faces Of Ataxia...Rosie Ruiz

     Hey, everyone! Time for Ataxia Profile number twenty...wow! Time is going so fast...it's hard for me to believe we are here already. I have very much enjoyed writing every profile and hope to bring you more. Some of you reading this will need to step up and send me your information...I only have eight more profiles available after today's...and for this week's Profile I am happy to introduce you to Rosie Ruiz...

     Rosie was thirty-five when she was diagnosed with SpinoCerebellar Ataxia. For two years numerous blood tests were done...as the doctors sent sample after sample to the lab in an effort to zero in on a specific type. Finally, after all the previous tests had come back negative, a positive result of SCA 8 was found. She remembers feelings of deep sadness at the news of a progressive disease...because she felt she was still quite young and was very active at that time.

     SpinoCerebellar type 8 is a form of Ataxia that is marked by a slower progression. Even so, Rosie...like many...hates the attention that comes when one experiences difficulty walking. She relays that she feels very uncomfortable when people stare because she may jerk when walking, drag her foot, take small steps, or move slowly. Conversations can also be embarrassing for her...as she struggles with crisp diction and hears herself garbling her words.

     Before Ataxia, Rosie worked at a desk job. She worked out regularly at a gym that she loved...and enjoyed going on nature hikes or long walks in the city. She still works and drives...although, Rosie notes that before the diagnosis she had better dexterity and loved to drive a stick...but now has transitioned to driving an automatic. She also notes a difference in the way she approaches public and social places. Before, Rosie was very energetic and loved meeting new people...but now she has become very apprehensive. She also quit the gym that she loved...for a preference that she now has to work-out alone.

     Activities that Rosie finds to be helpful include working in her garden...which gets her outside...and spending time on her treadmill...which is helpful for her stiff leg and gives her time to enjoy her favorite Podcast.

     When asked what her disability has taught her...Rosie's response was an important one for all of us to hear...because she let this progressive, non-curable neurological disease develop a much deeper sense of humility and empathy in her life. This journey has been a growing experience for her...as she learned that she now has an opportunity to reach people...just by accepting herself and being who she is.

     She would like people to know...especially those who are trying to come to terms with a new diagnosis in their lives...that life with a disability is not the end. Life is different...but it is not over.
Thank you for those words, Rosie...I personally, can testify that in my life and experiences I can see this disease as opening doors for me, providing opportunities, and giving me insights about myself and others...that I would not have realized any other way.

     Thank you, Rosie...for sharing yourself with us, as we all deal with this neurological disease and seek to learn from the lives of others.

     God Bless you all, my friends. Until next time...
     Jason

Ataxia Profiles: Faces Of Ataxia...Carmen De La Quintana

     It is time for the nineteenth Ataxia Profile...and for this writing, I am pleased to put the spotlight on Carmen De La Quintana.

     Carmen was officially diagnosed in two-thousand-and-fourteen at the age of fifty.  Earlier that year, however...she had been misdiagnosed with both Vertigo and a Stroke. After going to see an Ear Specialist, she was admitted to the hospital...and after numerous exams and tests, Carmen was diagnosed with PCD or Paraneoplastic Cerebellar Degeneration.

     She was also told at that time that she had Ovarian Cancer...and began Chemotherapy in the latter part of that year. Then in January of two-thousand-and-fifteen, she underwent surgery...but no evidence of cancer was found, so her rounds of Chemotherapy were discontinued. She continues to have check-ups every six months...with no evidence of the presence of cancer.

     Although Carmen has since had to stop working...she was employed by a large Health Insurance Company as an Account Manager. When not working at this job, Carmen enjoyed traveling to other countries, lounging on a beach, riding her bike, and spending quality time with her two kids, boyfriend, and friends. She also now enjoys watching movies and television series, and following her friends on Facebook and Instagram.

     To keep herself active and to get exercise...Carmen likes to go to the beach or a swimming pool. She finds a feeling of great happiness in these places. When I asked Carmen what her disability had taught her...she instantly replied that for her, her family is everything. Her mother moved from California to Florida to help take care of her...and she now has two beautiful grandchildren that fill her heart and make her smile. Her boyfriend now takes care of her full-time...both of her children live close to her...and she is very grateful to have a great support system.

     While Carmen is now in a wheelchair and needs assistance full-time...she continues to engage in therapies of many kinds...Physical, Occupational, Water, and Speech... and recommends this for everyone dealing with a disability. In short, she believes strongly that we all must remain active...and always be striving towards having a positive attitude and outlook. It is a choice...and Carmen has decided to be happy and laugh...ALOT!

     Thank you, Carmen, for those wise words...and, for the timely reminders of the importance of staying active, daily exercise, and maintaining a positive view. Thank you also for allowing me to share your story with others through this Blog. It has been very helpful.

     That wraps up another Ataxia Profile. If you have sent me your story, rest assured I will get to it and share it through this Blog. I am trying to get to each one in the order they were sent to me. If you haven't submitted anything to me then I would like to encourage you to do so...because YOUR story would be a benefit to all of us.

     Until next time my friends...Jason

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