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.
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     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....

     

     

Ataxia Profiles: Faces Of Ataxia...Bill Baldwin

     I am pleased to present another installment in the Ataxia Profiles: This Is Us. Today we will be introduced to Bill Baldwin. Bill lives in Georgia and is the father of a daughter who is a school teacher.

     I will let Bill tell you a little bit about himself:

     

 

     I’ve always been awkward and clumsy, but I wasn’t diagnosed with any abnormality until age 40-ish (I’m 60 now). My first diagnosis of “cerebellar degeneration” came from a neurologist in a nearby city who I was very displeased with. I got my primary care doctor to refer me to Emory where they made the general diagnosis of ataxia. Haven’t had genetic testing for a specific diagnosis yet because (1) it’s so expensive, and (2) my neurologist hasn’t encouraged it.

     My hobbies/interests didn’t really change much when I was diagnosed. I worked, drove, sang, read, rode my bicycle.... As I’ve aged, things HAVE changed. I was able to keep working until I became eligible for regular retirement, but then I quit. No future in driving 30 miles in the dark every morning. Haven’t stopped driving, but I pretty much confine it to around my small town during daylight.

     I still sing, but I notice that I’m not able to enunciate as well as I once was. Hope that doesn’t become something that makes me quit. Don’t read as much as I used to. My eyes don’t track very well, and I think that’s why I don’t enjoy it as much. The bicycle eventually became a recumbent tricycle, and a couple of years ago I stopped riding altogether. My peripheral vision’s pretty much gone, and I didn’t feel real safe. Also, I couldn’t carry around the rollator I’ve started using.

     My main ‘new’ hobby is going to the gym 4-5 days a week. Don’t lift weights, but I stretch and spend 30 minutes each on the rowing machine and the stair-stepper. I feel like the exercise and the fact that I watch my weight have combined to keep me ambulatory.

     Guess the hardest things to do on a day-to-day basis are to (1) put aside my pride in the interest of being safe, and (2) keep trying to do what I’m able to do while being realistic about what I can’t. I had a hard time with starting to use a cane a few years ago and an even harder time transitioning to a rollator year before last. I had to force myself to realize that the alternatives were falls and their consequences. Example of (2)—I can help unload the car when my wife gets home from the grocery store, but I can’t do a lot to help people move furniture.

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     Thanks, Bill! I really like the example given of helping unload groceries...but at the same time, being realistic about things like moving furniture. I am in the same place...and continuing to do what It helps me to remain positive. Good word, Bill!

     Until next time...take care, and I will write again soon. Jason

  

Ataxia Profiles: Faces Of Ataxia...Allison Dana

     Well...with the success of the first profile featuring Jason Baxter there is only one thing to do...keep posting! Today we are going to feature a special lady who is a mother of two precious, identical seven-year-old twin girls. She is happily married and resides in South Carolina.

     Say hello to Allison Dana....

     Allison was twenty-years-old when she was diagnosed with Friedreich's Ataxia. She was in her junior year when she received the news of the Neurological Disease...but went on to finish and graduate with a degree in Nuclear Medicine Technology. She worked in this field for seven years...ultimately giving it up. Patients that she worked with required injections of small amounts of radioactivity. Allison recognized that this ability had become something that she couldn't do anymore.

     Allison then moved on and spent the next four years working as a Clinical Research Coordinator. It was at the end of those four years that her daughters were born...and now Allison finds fulfillment in being a mom...which includes volunteering at her girls' school. She sees her volunteer work at the school as a way to help her girls...but also, as a way to help herself to get out and be around other people. She also considers daily exercise to be important and views it as a pleasant hobby.

    When asked what advice she would give...based on something learned through Ataxia...Allison replied, "to keep your independence for as long as possible...but it is okay to accept help when you need it).  Hear, hear Allison! Great advice...we just need to do what we need to do. Speaking of that...Allison also has a four-year-old Great Dane named Zeppelin that serves her as a mobility or balance dog.

     Allison has volunteered and participated for the last three years in RideAtaxia. She has never actually ridden in the event...but this year she will be riding her trike, with her two daughters riding also. She loves to raise awareness and money for the cause...and this year hopes to see that amount significantly increase. Allison also serves as an Ambassador for FARA...which stands for Friedreich's Ataxia Research Alliance.

     FARA is very active in the FA community...and their goal is to work towards finding a viable treatment...or better yet, a cure. As an Ambassador, she has presented her story to local drug companies who are working towards the goal of an answer to this disease. Telling her story to these companies helps to more personalize their efforts...and puts a face to the research and work that lies before them.

     It has been enjoyable for us to learn a little more about Allison...and she would like to leave us with this sage piece of advice: Live your life to the best your ability. Life still goes on even though you were diagnosed with a rare,  debilitating disease.

     Thank-you, Allison...thank-you for taking the time to let us take a peek into your world. I have enjoyed writing this. Pedal a few for me in the RideAtaxia...

     Until next time, my friends...

Ataxia Profiles: Faces Of Ataxia...Jason Baxter

     There are roughly One Hundred and Fifty Thousand current diagnoses of Ataxia in the US...in one form or another. I am not sure what that number expands to when considering the World stage.

     One Hundred and Fifty Thousand...that seems like a pretty big number. But it isn't. Not when you think of other diseases, such as MS and Parkinson's. Ataxia, again in its various forms, is rare. That's what we are told when we receive the diagnosis.

     This news, coming from a medical professional... really only registers for many who hear this news as one thing...I am now alone. This is simply not true. This is why I started this project...so that we can have a voice in one another's lives. So that we can laugh together...grieve together....and learn from one another.

     It seemed appropriate that for this first blog I share with you the writing from a man with the same first name as mine...because Jason is an awesome name! Different last name though (one out of two isn't too bad). So, for my first victim...uh, I mean profile....I would like to introduce you to Jason Baxter.

     I am going to let Jason put it in his own words...but before I do I'd like to point out three things from his writing that I would like you to notice:
1. The humor that Jason has been able to find. 2. The advice that Jason gives. And, 3. That Jason now finds fulfillment in volunteering, (life is not over because we lose our abilities to remain employed).

     With that, I present Jason Baxter

In 2015, when I was 44, the bottom fell out of my world.

I was one of the few people lucky enough to enjoy their work and although it was pressured and hard I never woke to the alarm clock with a sinking feeling. I worked as an assistant manager in a Police control room and although it was sometimes horrifying, it was also tremendously rewarding. I managed people who had heard things that nobody should ever hear. 

If that wasn’t enough, I also volunteered as a Special Constable. This is a police officer who is expected to do everything a regular police officer does but for free. I saw things nobody should ever see.

So it was that on April 2015, my wife rang me at work to tell me I had a letter. This letter informed me that I had a diagnosis of Spinocerebellar Ataxia type 2.

Up until this point, I had never heard of Ataxia because unlike most sufferers, I had not had to witness the relentless march of this condition in someone else whilst wondering if it had started to nibble away at my own brain. I had this fortune because I’m adopted so I spent the first 40 years or so of my life blissfully unaware.

This lack of awareness, however, did make the road to diagnosis a little longer (and for many, it is long enough already). When I was on duty, my colleagues noticed that I had difficulty walking in a straight line, had problems with depth perception and possessed similar driving skills to Mr. Magoo.

I had also, since my early twenties been clumsy in biblical proportions. I don’t think we ever had one complete set of cups, glasses or plates thanks to me. 

So began a long line of tests, MRI scans, and neurologist consultations. MS was an early frontrunner but swiftly ruled out. I had done some research myself (but here’s my bit of advice - do not, under any circumstances, attempt to google your symptoms and try to diagnose yourself - you most likely will convince yourself that you have approximately three hours to live and no-one needs that stress in their lives) and had read a little about Ataxia. I mentioned this to my neurologist who was skeptical but agreed to run the tests.

I have now been medically retired from work for around two years - I found that I was increasingly unable to do my job (the equivalent of juggling twelve chainsaws on fire) with any degree of confidence, my speech would fail me in important meetings and I was generally not on top of my game. Fortunately, I had a fantastic manager (we still speak to this day) and I was in the union. I also had paid into a pension so I had great support and had some financial stability.

Now, I volunteer in the local library offering technical advice to those who find technology confusing and am an active member of the Labour Party where I am working with my local party to both raise awareness of rare conditions (including Ataxia) and campaign for better access to for disabled people. Only the other day, I met (and shook hands with) the leader of the opposition, Jeremy Corbyn (if you don’t know who that is, google him) and heard him give a speech to our local group. It was one of the highlights of my year so far.

Thank you for reading. As a last mention, I point out that the blog has a link for your email. This is so you can sign up to receive new ones when they are posted