The Rare Path of Transverse Myelitis

NTI advocates around the world for disability, and we are happy when our efforts make a difference in the lives of people who use our job services. But we are even more thrilled when our efforts draw people to us because they see the work we do and they want to be a part. NTI employee Jennifer Agersea was drawn to apply for a position at NTI after seeing the work we do, and we are lucky to have her now be a part of NTI’s team! Jen was drawn to our disability advocacy efforts because at the age of 12 she suddenly lost the use of her legs and within about 24 hours was paralyzed from the waist down. Testing eventually led to a diagnosis of transverse myelitis. Transverse myelitis (TM) is a rare inflammation of the spinal cord; only about 1400 new cases are diagnosed each year in the United States. Doctors are not always sure what causes it, but it is known to sometimes be the result of an infection or autoimmune disease. In Jen’s case, doctors suspect TM was somehow associated with the flu which she had prior to her diagnosis. The condition disrupts the normal flow of information from the nerves in the spine to the brain and vice versa and thus can lead to pain, weakness, and paralysis. Jen’s lower spine was affected which is what led to her sudden paralysis from the waist down.


Because the disease is rare, many medical professionals are unfamiliar with it, even today. The night Jen’s parents took her to the ER because she couldn’t move her legs, doctors thought maybe her symptoms were psychosomatic or she was faking it to get out of going to school. Because many doctors have no experience with TM, many people choose to become their own advocates to teach family, friends, employers, and even doctors more about the condition. TM affects people of all ages and backgrounds without respect for gender or race and as far as researchers can tell it doesn’t have a genetic component. There is no cure for TM, and recovery, if it happens at all, can take months or even years. Treatment for the disease includes medication to alleviate symptoms and make people with TM more comfortable. Jen was lucky that after several months of intense physical therapy she was able to walk again with the use of first a walker and then braces on her legs. Throughout her journey, which has included several surgeries on her feet, Jen’s mom has been her rock and spent countless hours ferrying her to and from doctor’s appointments and therapy.



Jen acknowledges that her journey with TM has affected not only her life, but the lives of her friends and family on whom she has relied for support and encouragement. And now Jen is ready to pay it forward to other’s who are on their own journey with TM. Jen plans to volunteer her time at a camp for children diagnosed with TM. She is also participating in the Massachusetts Walk-Run-N-Roll sponsored by The Transverse Myelitis Association. The Walk is scheduled to be held in Danvers, MA at Endicott Park on Saturday October 13, 2018. NTI is looking forward to participating in this and other events as part of our ongoing advocacy efforts for disability. For more information about the walk for TM visit their Facebook page at https://www.facebook.com/MAWalkRunNRoll/.



Many people diagnosed with transverse myelitis do find relief is possible through medication and therapy. With lifestyle changes and the support of friends and family, symptoms can be managed if not completely eliminated. For those who want to work from home in order to reduce stress, there are options available. NTI helps those diagnosed with transverse myelitis and other disabilities find suitable employment. If you would like to learn more about NTI’s job services call us at 877-248-8912 or visit www.NTIcentral.org.



Kate Brouse lives in southwest Florida and works as the Public Relations Administrator for NTI. A sometimes author and an avid reader, she is the frequent recipient of choice gestures from drivers who find her stationary vehicle an annoyance at green lights as she is finishing a paragraph at a light that moments ago had been red.  Follow her on Twitter @Outreach_NTI.

Riding to Remember: Lee's RIDE to End Alzheimer’s

After an exhausting 10-hour shift, he comes home to get his bike and rides at least 40 miles each day.  It's the same rigorous routine for the past three months to prepare for his journey.  June 9th is his target along with 500 other riders as they are focused on the RIDE to End Alzheimer’s.  Lee along with Lee the family and friends that support him hopes through his efforts a cure can be found for Alzheimer's.  Like many who participate, they have been touched in their lives through a loved one who have experienced this debilitating disease.  

Lee Johnson, riding in the RIDE to End Alzheimer's

Sometimes referred to as “Old Timer’s Disease,” Alzheimer’s Disease (AD) is the 6th leading cause of death in the U.S. It is also the only top-ten killer that is so little understood. Doctors and researchers are stymied on how to prevent, slow the advance of, or cure Alzheimer’s. Currently, more than 5 million Americans have Alzheimer's Disease and that number is expected to grow to as many as 16 million by 2050. As anyone who has seen a loved one slowly lose their memories and ability for self-care can testify, the loss is heartbreaking. People with AD can lose the ability to recognize their own families and/or caregivers and can experience profound and disturbing behavioral changes. 


Understandably, people who have had close contact with a person with AD want to see further research to find ways to prevent and treat this disease, especially since some variations of AD are passed genetically from one generation to the next. The Noonan family is one example. Julia Noonan, Irish-American mother of 10 children, lived with her family outside Boston in the 1960sDiagnosed with early onset Alzheimer’s at 43, Noonan had been exhibiting signs for four years prior. The disease killed her in her mid-fiftiesof her 10 children, five were statistically likely to carry the same gene for the disease that took their mother. To date, three of the 10 have died from Alzheimer’s and the family has been the subject of an Emmy-winning PBS’s documentary, The Forgetting.” 

A screenshot from the PBS’s documentary, The Forgetting"

As part of outreach and advocacy efforts for AD, the Noonan family partnered with The Alzheimer’s Association on yearly fundraiser: a bike ride where individuals and families participate to raise funds for AD research. To date, “The RIDE to End Alzheimer’s” has raised over $5,000,000.00. Ninety-percent goes directly to research grants, and 10% stays right within the community near where the event takes place: Ordiorne State Park in Rye, NH. This year the ride in on June 9. 

Riding in the RIDE to end Alzheimer's 

Lee Johnson, of Norwood, MA has participated in the ride for the past 7 years. Lee watched his great-grandmother suffer with Alzheimer’s and knows there is a chance he too could develop the disease as he ages. Since he loves to bike, raising money and awareness through the local RIDE event just made sense to him. Each year he commits to ride 100 miles. The minimum amount required to raise as a participant in the 100 mile ride is $750. Lee gets support and funding from friends and family in his community.  You can feel free to donate here: bit.ly/LEE4ALZ2018.

Lee poses outside L.L. Bean at Legacy Place

Three months prior to the RIDELee begins his yearly training. Daily rides after he gets off work at L.L. Bean help him get in shape as he builds up his endurance. Even though there are days that he is tired or the weather is bad and he doesn’t feel like riding, Johnson always gets out there to train. “It’s mental…some days you don’t feel like it, but if you don’t do it, you won’t succeed,” Johnson said.  

Riders participating in the RIDE to End Alzheimer's (courtesy of Alzheimer's Association).

Lee's parents, knowing the possibility that he could develop Alzheimer’s, are very supportive of his fundraising efforts. His sister and her husband always donate to the ride, often donating an amount just under the required minimal goal so that Johnson will remain inspired to get more funding from other people and spread awareness. Humble and shy of the spotlight, Johnson assures people he does this not for himself, but because he enjoys riding and wants to support the cause.  Johnson says, "it is common for participants to pin the names of loved ones affected by AD to their jerseys and that he finds renewed encouragement when he sees that, as it reminds him of his great-grandmother and the importance of ongoing research for treatment and cure." 


Lee posing with his bike outside of the L.L. Bean Legacy Place location.

NTI (NTICentral.org), an organization that helps individuals with disabilities back into the workforce has sponsored Lee for the last 3 years. When asked why NTI sponsors Lee, Michael Sanders, the Director of Marketing at NTI stated, "It makes sense. Lee has genuinely embraced helping those with Alzheimer's through his ability and love of cycling.  As an organization focused on helping individuals with disabilities, we are proud to sponsor and promote this type of pro-social behavior.  We would love to see this passion in everyone."   

Lee successfully after the finish line in 2016

Johnson’s coworkers at L.L. Bean know that he participates in the RIDE, and they are very supportive of him. While Johnson is doing the RIDE on his own, the company supports his efforts and admires his dedication and perseverance. Store Manager Shawn McMullen says "L.L. Bean maintains core values of respect and perseverance, qualities she sees in Johnson." Shawn went on to say, "The company strives to allow their employees to find a positive work/life balance and to give their all to not only their customers, but also to their communities." In this, Johnson is an exemplary employee. McMullen describes Johnson as a “cool cucumber who never gets rattled" and she knows Johnson will succeed in his ride. She promises that Johnson’s coworkers will rally around him and his efforts to support a cure. “Lee is dedicated and perseveres. He will achieve his goal and his team at L.L. Bean will support him.”  If you would like to support Lee and his Ride to End Alzheimer’s, visit bit.ly/LEE4ALZ2018 to show encouragement as well as contribute to Lee's fundraising efforts.    



Kate Brouse lives in southwest Florida and works as the Public Relations Administrator for NTI. A sometimes author and an avid reader, she is the frequent recipient of choice gestures from drivers who find her stationary vehicle an annoyance at green lights as she is finishing a paragraph at a light that moments ago had been red.  Follow her on Twitter @Outreach_NTI.

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