AANEM Foundation News Express

AANEM Foundation News Express

Taylor’s Many Blessings in Life: Faith, Family, Friends, Hockey, and Myasthenia Gravis

5/31/2018
 
For Taylor Williamson, life is centered on her strong circle of family and friends as well as her Christian faith. Just 21-years-old with one year left of college, Taylor already has many achievements for which to be proud. 

The girl who first skated at 11-months-old is now a Division I athlete, having played 3 seasons on the women’s hockey team at the University of Minnesota. In 2016, Taylor’s life was at an all-time high, as she helped her Golden Gopher team win the national women’s hockey championship. But in February 2017, things began to feel out of sorts for Taylor. 

“From time to time, I started noticing inconsistency when I was speaking. I wasn’t sure why it was happening, but it was embarrassing, frustrating, and really concerning. I thought the speaking issue would subside, so I didn’t say anything to anyone, but then I started experiencing some facial problems … mainly my inability to smile,” said Taylor.
 
Taylor next noticed a difficulty in chewing and swallowing food. Then came the muscle weakness. 

“When I started having a droopy left eye, I became very concerned. However, out of all those symptoms, my slurred speech happened the most. The most frustrating part of it all was having a difficult time getting normal words and thoughts out of my mouth,” Taylor recalled.  

It took a few months, but eventually Taylor found the strength to tell her parents. 

“After telling them, within 12 hours, we had scheduled a visit to see a doctor. At that doctor’s appointment, my speech really came crashing down and they immediately scheduled an MRI where they found a mass in my brain.”

One day later, Taylor was admitted to the hospital for emergency brain surgery to alleviate the mass rapidly growing on the right side of her brain. 

“We all thought this was the reason behind my symptoms and the outlook was positive. Brain surgery obviously takes a toll on a person’s body, but it seemed to have solved my speech issue -- for the time being,” she said.

Taylor was cleared to begin physical activity again in June 2017. That summer, Taylor was training her hardest to get her mind and body back to the level needed to compete with her teammates – some of the best women’s hockey players in the world. 

“As the summer of 2017 wore on, my family and I noticed my slurred speech creeping back. Concerned, I went back to my neurosurgeon, who called for another MRI. But, there was nothing alarming on the scans. In his words, my brain was ‘pristine.’” 

Relieved, Taylor continued along with her training regimen. It was in late August 2017 when Taylor noticed a significant decline in her athletic performance. 

“My muscles would fatigue extremely quickly when skating. My stick handling skills had regressed to the point where I could barely hold onto my stick. On top of that, my shot was alarmingly weak and I could hardly keep up with my teammates, to say the least.”

Beyond the athletic decline, Taylor’s inability to communicate was becoming more of a challenge and she could barely chew or swallow her food. 

“To cap things off, there would be times where I could hardly put my hair up in a ponytail because my arms were so weak.” 

The doctors kept telling Taylor it could take 6 months to a year to fully recover from brain surgery and that the symptoms should subside. So, Taylor decided to forge ahead. She made it through her summer training camp and told herself she would play in the season opener on September 29, 2017, to see how her body would perform in an actual hockey game. 

“That game was the beginning of the end and all five symptoms locked me down midway through the second period. I pulled myself from the game and everyone could tell something was very wrong.”

Taylor spent that night in the ER. A number of doctors examined her to determine what was going on with her body. 

“It was a resident on call that had a hunch it was myasthenia gravis. He told me he wanted to run a test to see if this rare disease was causing my problems,” Taylor recalled. 

The resident had to consult his attending physician before they could complete any neuromuscular autoimmune tests. A couple of hours later, the resident returned saying his attending physician didn’t think the myasthenia gravis test was necessary.

But Taylor trusted this resident’s hunch. She told him to run the blood test anyway. 

“He ordered the labs which ended up changing my life forever,” she said.  

At the end of that week, the attending physician who initially said there was no chance Taylor had myasthenia gravis (MG), called Taylor to inform her that she had, in fact, tested positive for it.  

“At that point, my dad and I reached out to a Myasthenia Gravis group in Minnesota for advice and direction. They had given us three recommendations for neurologists.”

They ended up selecting Guarav K. Guliani, MD, a neurologist in St. Paul, Minnesota, and member of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM). 

“It was Dr. Guliani who ultimately diagnosed me with generalized myasthenia gravis,” noted Taylor.  

As explained on the AANEM website, MG is a disorder causing weakness and easy fatigue of voluntary muscles. It is caused by a breakdown in the communication between nerves and muscles, usually because of an immunological problem. Early symptoms include eyelid drooping, double vision, weakness of the face, swallowing, chewing, and weakness of the limbs. Anyone can get MG, but women are more likely to have it. 

After receiving the diagnosis, Taylor says she was in complete shock. 

“I immediately called my mom not knowing what to do or think. She was in just as much shock as I was, but then said to me: ‘You know what T? At least we have an answer!’ My mom was exactly right. There was no mystery anymore, and for that, I was so thankful.”

Taylor explains that in that moment, God had presented her an answer to so many prayers.

“I was introduced to a new obstacle that is arguably the toughest challenge I have gone through in my entire life. All I focused on from that point forward was having faith, staying positive, and taking this scary and difficult battle day by day.”  

One of the hardest parts for Taylor was being unable to play the sport she loves so dearly.

“I was out of competitive hockey starting on September 29, 2017. There is no question that sitting in that press box during games was miserable, but I relied on my faith that God has a path and was determined to stay positive and strong for my family and friends. Sure, I was battling a disease, but I kept thinking that there are a lot of other people dealing with worse things than me.”

After being out of hockey for nearly 3 months, Taylor laced up her skates again on Christmas Eve 2017.

“I have to admit, the first time back on the ice was really scary and depressing … it wasn’t like riding a bike. I basically started from scratch, but slowly progressed each and every day. As things started to come around, I made a goal to throw on the Gopher jersey for at least one game. I was bound and determined not to let MG end my hockey career.”  

And, it didn’t. Being able to suit up again for the Golden Gophers was a moment Taylor will not soon forget.

“I still get chills even thinking about dressing for my first game back on January 13, 2018. I knew the coach wasn’t going to play me, but I got to warm up with the team and loved being on the bench back in the fray of college hockey,” noted Taylor. “To my surprise, the coach decided to give me a shift in the third period and I barely remember a thing because my heart and eyes were filled with tears of joy. One game turned into two, and soon I was playing a regular shift.  I’m so grateful to be back in the mix and excited to help my teammates. I will never take this gift for granted.”

For Taylor, this battle has been life changing and she admits she started it from rock bottom.

“The simplest tasks such as eating, drinking, smiling, and talking were stripped away from me and there was nothing I could do to change that. But it was my faith that kept me strong, positive, and certain I was going to be okay no matter what.”

To treat her MG, Taylor takes 3 different types of medication: Pyridostigmine, Prednisone, and Azathioprine. She visits Dr. Guliani every 6 weeks to complete muscle and blood tests and discuss how she’s feeling on her medication dosage. Taylor says she’s tried many different types of treatments, but has found massage to be the most effective method to decrease her symptoms and help her get back to the performance level needed to play Division I women’s hockey.  

Taylor has 1 year left at the University of Minnesota and is unsure of what’s to come after graduation. 

“I do know that I want to devote a part of my life to sharing my experiences to help others through their own personal struggles.”

Taylor has not been alone on her MG journey and says she is thankful for her strong support system. 

“I know I can only speak from my own experience, but I can honestly say I don’t think there are many families these days that would have handled this experience as well as my family has. My friends have also been incredible. Whether we were at the rink or at home, they always managed to get the biggest smile on my face and make me laugh so hard that I no longer remembered the challenges I was facing in life. I am so blessed for each person that has been there and supported me. It’s hard to find words to say how thankful I am.”

Taylor is very passionate about ensuring there is continued funding for scientific research in neuromuscular and musculoskeletal diseases. 

“The first reason continued research is needed is because there is no clearly listed cure for MG. People with MG and other neuromuscular diseases have amazing goals and aspirations for their lives and the thought of letting those goals go unachieved because of the lack of research crushes me.”

Taylor says any donation can go a long way.

“Your donation could be the difference maker for some kid’s life that still has their whole future ahead of them.” 

Taylor says one of her future goals will involve getting the word out about neuromuscular disease research and funding. 

“Just like my dad said to me when I first found out I had MG, these diseases cannot and will not control us. We will control them.”  

Many people would not consider a disease a blessing, but for Taylor, she says MG has been one of the biggest blessings in her life.

“It has made me a better person, given me a new perspective on life, and opened so many doors for me to help and meet new people.”

Make a Donation
Your donation to the AANEM Foundation will help fund research to assist in improving the lives of patients with neuromuscular diseases, like Taylor. Together we can support the researchers who are finding the treatments and cures for tomorrow. Help the next generation of researchers and donate today.


Recent AANEM Foundation News

Taylor’s Many Blessings in Life: Faith, Family, Friends, Hockey, and Myasthenia Gravis

Meet Kristin: Mother, Social Worker, and Charcot-Marie-Tooth Survivor

AANEM Foundation Announces Clinical Research Fellowship on Chronic Inflammatory Demyelinating Polyneuropathy

Meet James Higginson: Award-Winning Artist and Guillain-Barré Syndrome Survivor

AANEM Foundation’s Clinical Research Fellowship on the Neurological Application of Neurotoxins – Apply by March 1, 2018!