This post is part of the series 14 Questions, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, we are honored to welcome special guests - Numotion CEO, Mike Swinford, who joins us to interview the Wendler family.
Trickett Wendler was a friend and customer of Numotion who lost her fight to ALS in 2015. Trickett was a passionate woman, but perhaps never more so than when it came to advocating for those battling ALS. It was her belief that all people fighting a terminal illness should be granted the “right to try” any and all potential cure options available to them. Last week, Trickett’s passion became reality, S.204 - Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017, was passed in Congress and is now scheduled to be signed into law by the President today with the Wendler’s by his side.
Trickett is survived by her husband, Tim, and three children, Tealyn, Tanner, and Torynn. The Wendler family has continued to advocate and raise money for ALS all over the country. In honor our friend Trickett, we have asked her family to answer our 14 questions to promote ALS awareness, with May being ALS awareness month.
Swinford: First, please let me say that our team here at Numotion has been incredibly touched by your family’s strength in the face of adversity, dedication to raising awareness of ALS and commitment to honoring Trickett’s life and legacy. Prior to Trickett’s diagnosis, how aware were you of ALS? What, if any, had your experience with ALS been up to that point?
Numotion is proud to stand beside the Wendler family and thousands of other customers and their families in their fight to end ALS. We are equally proud of our premier partnership with the ALS Association, collaborating nationally to provide services and solutions to all those living with ALS.
Tim: I never got to meet Tricketts dad Roger, he had passed in 1997. The science wasn’t perfect then, but he passed when he was in his late 40s and the cause of death eventually came back as ALS. So it was something we were aware of. We would attend fundraisers periodically and even though it would always be in the back of our minds, we were really focused on building our lives. The diagnosis changed everything.
Swinford: How did your lives change in the first weeks and months following your mom’s diagnosis?
Tealyn: My mom tried to keep everything the same and create a normal setting for us. She did her best job to make sure that we wouldn’t be consumed with worry about her condition. She wanted our worlds and our childhoods to be something we remembered as happy.
Swinford: By all accounts, your mom was an amazing person. Though we are sure there are many, what three things would you want people to know about her that most may not already know?
Tori: Mom was very inspiring and very persistent. She was really caring, like she really cared about everybody that had ALS. She wanted to take care of them. She cared about people that were going through ALS. Even though she was sick, she cared about me, and Tealyn and Tanner. I love her and miss her so much. When I think about mom – she was able to put up a fight.
Tanner: Everyone knows she’s funny but one of the things that people never knew was how creative mom was. On nights when dad was gone on a business trip we would all sleep in mom’s room. We would wake up each morning and tell each other what we dreamt of. And mom always had the most creative dreams. There was one dream that mom had where she was a mermaid stuck on a rock. Every day dad (or someone who looked like him) showed up and took her back into the ocean and then every day dad would come back to the beach and take her back to the ocean.
Another thing, she had a secret language. My dad said he knew how to speak it but mom said he didn’t. Whenever she was with a group of friends that knew the language, they would speak it and no one would know what they were talking about.
Swinford: Trickett took the extraordinary step of documenting the progression of her diagnosis through a series of media interviews. Why do you believe she felt that it was important to provide others a glimpse into her progression and what affect do you think the interviews have had on those who have viewed since her passing?
Tim: At the time, I didn’t appreciate the impact. Trickett was way ahead of me every step of the way. She understood the opportunity to have an impact very early in the diagnosis. Most patients sort of draw back and try to focus on quality of life and spending time with family. Trickett was unbelievable in balancing family with the process of educating and raising awareness. She had been through her father’s progression and passing and she knew that people could not truly understand the complete decimation that ALS has on both the patient and their family. The documentation is honest and awful. I’ve seen the progression video twice and will never watch it again. That being said, the impact and reach of the videos and interviews has been overwhelming. Trickett passed a little over three years ago and still everyday people reach out to tell me how they have been effected and inspired by Trickett.
Swinford: How important has the ALS Association (both your local Wisconsin chapter and ALSA National) been to your family as you’ve experienced the effects of ALS? What services and support efforts provided by these organizations have been the most important to your family?
Tealyn: The ALS Association has been with us in every part of the journey. When my mom was sick they stayed through the good, the bad and the ugly. They have supported us through raising awareness online, commercials, through fundraisers and so much more. They have not only been there physically but emotionally too and I am so grateful for their never ending love for my family.
Swinford: What have you learned about your mom that you did not know prior to ALS? What about your lives today would make your mom the most proud?
Tori: I don’t know, maybe Tanner could answer that one. I was seven when she was diagnosed. I think she would like that I was getting good grades and I had good friends and a lot of people care about me and a lot of people cared about her.
Tanner: I think mom would really like that I am into sports and I’m doing really well. We won our baseball league last summer and mom really liked to come and watch me play. I think she would really like that I am doing well in school. She would really like that I am good in math and she would think that was really cool.
Swinford: The children of the Wendler family appear to be wise well beyond their years. Strong, articulate and passionate for the cause. What impact has Trickett’s life had on the Wendler children and what advice would you give to another parent whose spouse or partner has recently been diagnosed with ALS?
Tim: The kids have been unbelievable. I mean, the bottom line is that these three kids do not have a mom. Birthdays, holidays, special occasions are always difficult, but everyday stuff is the hardest. After the diagnosis and eventually accepting the progression, Trickett recorded audio and video files for each of the kids for different occasions as they grow up and build their own lives. We also have a closet full of wrapped presents to give to the kids for each birthday and Christmas. Nothing replaces the real thing though. In their own way, each one of the kids takes what their mom gave them and expresses it in their own way. Every day they see the impact that their mom has on people and each one of them has found ways to continue that duty. It’s been humbling to watch them go through this.
Swinford: You’ve been strong advocates for “Right to Try” legislation on both the state and federal levels, including a meeting and discussion of the issue with Vice President, Mike Pence and the opportunity to be present on the floor of the House of Representatives for the final vote, securing passing of the "Trickett Wendler, Frank Mongiello, Jordan McLinn, and Matthew Bellina Right to Try Act of 2017." Please tell us about “Right to Try,” why it was important to Trickett and why it is important to your family today.
Tim: Like most families, when we got diagnosed, we tried everything; diet, clinical trials, second opinions, third opinions – we went all over the country, talked to dozens of doctors, hundreds of patients, the answers all came back the same. Over time, you become immune and hope slowly fades away. It is awful. Right to Try offers hope. It’s legislation that allows terminal patients in concert with their doctor to try FDA stage 1 drugs that have not made it to market yet. Trickett knew that the right to try to save your life was fundamental for any terminal patient and she became its loudest advocate. The kids have picked up the torch after her passing. 40 states have passed it and the national bill is named for Trickett. Getting the bill passed will have an immeasurable effect on terminal patients and their families.
Swinford: Those of us at Numotion and within the Complex Rehab Technology industry who have had the opportunity to work directly with ALS customers are often struck by the positivity, humor, kindness and generous spirit of those who have experienced this diagnosis. Why do you think so many choose to use their remaining time spreading love and kindness when it may instead be easier to become consumed by the day-to-day challenges of living with ALS?
Tealyn: It’s a difficult choice and a thin line between survivor and victim. In order to overcome something that is all consuming and has never ended well – maintain hope, even when all is lost. I guess people want to show others that instead of letting the disease control your life, you can make the best out of the worst situation.
Swinford: Numotion was honored to serve as Trickett’s CRT provider. Based on your experience, how important is complex rehab technology, its ability to provide continued mobility and an individual’s relationship with their CRT provider as needs change after diagnosis?
Tim: I’m convinced that we prolonged the quality of our time together after diagnosis because of the chair and the technology. I mentioned before, we’ve met hundreds of patients and families and found that many will wait to commit the chair for various reasons. Not Trickett though, she saw the chair as a way to extend her freedom. Even before she was unable to walk on her own she embraced the chair as an extension of her mobility. For us, the progression was particularly rapid. Tweaks to the chair to improve comfort became frequent. We changed the controls dozens of times as the disease continued to steal away ordinary everyday functions. Numotion was there every step of the way. We honestly could not have lived without them.
Swinford: Considering the importance of this equipment, what message would you provide to legislators and policy makers responsible for ensuring continued access to complex rehab technology?
Tim: For us, important does not scratch the surface. You should not have to experience a devastating disease to understand the importance of the technology and access to it. It is essential. Period. Every patient and their family should have access. I can’t even imagine Trickett going through her progression without it. It was torture for us and we had the best people and equipment available. Not having it access to it and knowing it was available would just be an act of cruelty.
Swinford: Earlier this year we were proud to welcome Steve Gleason as the keynote speaker at Numotion’s National Leadership Conference. I understand that Steve and his foundation were a source of inspiration for your mom. What impact have Steve and Team Gleason had on you and your family?
Tealyn: They allowed and showed my mom what it is like to be a hero and how to impact others to be heroes. They have changed my life and they changed my mom’s by showing us that there is life after the diagnosis of ALS.
Swinford: Speaking of our National Leadership Conference, Numotion has established an annual leadership award which is provided in your mother’s name. Your family has had the opportunity to meet with and assist in the recognition of the three exceptional female leaders honored thus far. What leadership qualities did your mother portray that may serve as a guide for leaders both outside and within our organization?
Tealyn: My mom was funny and persistent and most likely the most stubborn woman you would ever meet, but this was all for the better and only made her stronger. Clearly her kindness has spread to people that never even had contact with her and I think that was her overall goal. To make people feel strong and hopeful.
Swinford: You’ve had tremendous success fundraising for the ALSA Wisconsin chapter. What do you believe to be the most important ways in which one could become engaged in the fight to defeat ALS?
Tealyn: Get involved, check their websites, advocate and volunteer.