Maureen Stemmelen's Journey with ALS
Maureen Stemmelen has been fighting for one cause or another for the past several decades. Her twin sons were diagnosed with epilepsy at a young age and Maureen jumped right into holding events to raise funds for the Epilepsy Foundation, participating in the Purple Pumpkin Project every year.
In March of 2016 Maureen began to experience little oddities. Some weakness in her arms and a twitching in her tongue which didn’t seem to be resolving. By August she received her ALS diagnosis. This news shook her family and friends to the core but Maureen was determined not to let this hold anyone back.
Maureen began making plans. She gathered her closest friends for a girls' trip and planned circle tour around Lake Michigan, traveled to Ireland with her husband Walter and their two sons, and walked the Mackinaw bridge with her Michigan family.
Maureen’s symptoms progressed; she began to lose use of her arms and hands. She had spent her professional career as a speech pathologist specializing in working with stroke patients; that irony was not lost on her when ALS took her ability to speak.
Navigating and leaving her home has become stressful and energy-depleting for Maureen.
As a result, she is spending the majority of time in bed. Maureen is intubated relying on a ventilator for breathing assistance, has a feeding tube and communicates via a Tobii Dynavox eye gaze augmentative speech device. “Tobii is a life saver!” she tells us.
Maureen has found that the drastic changes ALS incurs as your body “defies you” also foster a change in perspective. She shares that embracing the freedom this change in perspective provides and doing the things you always wanted to do while you can is paramount. Preparing for what is to come and having the hard conversations with your loved ones about feeding tubes and ventilators is a relief to you and to them.
Maureen encourages everyone, be we persons living with ALS, caregivers, family, friends, and neighbors to “Nurture these relationships; not just technically but emotionally.”
“Let everyone around you rally in support of you and your immediate family."
"Allow them to take part in making decisions, not only about your own health but in your family life from small projects around the house, to meal choices and prep to planning and celebrating holidays. Have fun with them. Let them be helpful and supportive, it’s good for everyone and helps us stay connected and hopeful."
“Find a good therapist, someone you can talk to,” Maureen imparts. Maureen believes in having a “big tent and a long table” and ALS has not changed this. She is known among her friends as “the Gatherer” and receives visitors from all over the world.
“The smaller your world becomes the larger you have to open your mind.”
Maureen finds solace in watching the news, keeping up with politics, finding new recipes for her experimental kitchen, and continues to fully participate in her wine & book club. “We have to dilute it,” Maureen’s close friend Elaine shares, “but the wine can be delivered by feeding tube, and it works a lot quicker!”
“Read, read, read”, Maureen encourages. “Continue to set goals. Express your feelings freely. Be informed about your diagnosis and the world. Be good to yourself. Nurture your friends and family. Caregivers are your lifeline.”