As an obstetric anesthesiologist, Stacy L.F. used her hands for medical procedures all the time. In July 2020, those hands held the first signs something was wrong.
“I was having difficulty cracking open glass medicine vials,” Stacy recalls. “I ignored my symptoms — thought they were nothing. I subsequently dropped a pen, which was odd for me. I noticed my right leg was a little bit weaker than normal.”
At first, Stacy thought her symptoms might be related to her recent spine surgery. Then she began to have trouble swallowing. She saw two neurologists and underwent multiple tests. In February 2021, at age 56, Stacy was diagnosed with amyotrophic lateral sclerosis (ALS), also known as “Lou Gehrig’s Disease.”
ALS is a progressive neurodegenerative disorder that damages nerve cells in the brain and spinal cord responsible for controlling voluntary muscle movement and breathing. These nerves ultimately stop working and lose their ability to send messages to the muscles. Over time, this causes the muscles to weaken, leading to muscle paralysis, or the inability to move your muscles.
ALS is not curable, but several medications approved by the U.S. Food and Drug Administration may help slow its progression and help with the symptoms.
Stacy’s symptoms have evolved slowly since her diagnosis. Today, she uses a wheelchair for mobility.
“I have very little use of my hands and arms,” Stacy says. “I have some movement, which I try to keep going. My most concerning and troublesome symptom is my breathing. I am lucky enough to still have my voice, but it is limited by my breathing. I’m dependent on a non-invasive ventilator, which I have with me at all times.”
“ALS are three terrifying letters to hear,” Stacy says. She sought several opinions after her diagnosis and knew she needed to go to a specialty clinic for ALS care. A friend connected her to the Temple MDA/ALS Center of Hope and neurologist Terry Heiman-Patterson, MD, whom Stacy first met during her medical training.
“Once I walked into Temple’s ALS Center of Hope, I knew I was in the right place,” Stacy says. “Not only is their care exceptional, but it’s such an incredibly loving, warm environment to be in. It truly gives meaning to the word hope.”
Surrounded by support
The MDA/ALS Center of Hope provides leading-edge treatment and clinical trials for people living with ALS and muscular dystrophies. It also provides a wide range of support for patients, their caregivers, and their families.
The Center gives Stacy access to an entire team of specialists who address her symptoms, needs, and the progressive loss of function caused by ALS. This multidisciplinary approach to ALS care has been shown to extend life and improve quality of life for people living with the disease.
Stacy regularly meets with experts, including her neurologist; her physical, occupational, and speech therapists; a nutritionist; a respiratory therapist; and a mental health professional.
“I’m one person with one terrible disease that affects every part of my body and life,” Stacy says. “And they address each separate function but coordinate it and put it together as a team to make my best care plan.”
Among the benefits of being at the Center of Hope are the numerous ALS clinical trials and studies available, which help patients access the latest therapies and medications.
“They involve you in studies,” Stacy says. “They have a wonderful team that handles that as well.”
What’s more, Stacy is able to have all of her appointments in a single day at a single location. That’s especially helpful because decreased mobility makes getting to the hospital challenging.
“To be able to see every professional who takes care of you in one day is really remarkable and quite helpful,” she says.
Stacy typically visits the Center of Hope every three months for a full day of appointments.
“However, there are countless times I reach out to the team members with questions in between those visits, and they get back to me within 24 hours with answers,” Stacy says. “They address all of my issues — and questions I didn’t even know I had.”
In addition to treating Stacy, the MDA/ALS Center of Hope is just as focused on her family’s and her caregivers’ needs.
“In my appointments, they always take the time to ask my caregivers if there’s anything they need to make their lives easier while taking care of me,” she says. “Secondly, they reach out to my family, separate from my appointments, to make sure that they’re doing OK, which is really lovely to have in your corner.”
Stacy knows she and her caregivers can contact the Center of Hope whenever they have a need.
Stacy’s team at Temple has also done more than address the symptoms of her ALS.
“They also have taught me how to face this life with hope and to get full enjoyment out of it,” she says.
A resounding voice for ALS awareness
Ever since her diagnosis, Stacy has become very active in the ALS community. She says she feels very fortunate to be able to help others navigate their ALS journey.
“When I was diagnosed, I decided I wanted to live with ALS,” Stacy says. “I know the realities of the disease, but I wasn’t going to let it keep me down. I want to raise awareness and help other ALS families.”
Stacy is involved in fundraising, advocacy, and serves as a research ambassador for ALS. She is on numerous pharmaceutical company boards as a patient advisory member, been a keynote speaker at two Temple events, raises money through ALS walks, serves as an ALS mentor to other patients, and more.
“There’s very little I say no to, especially for Temple,” Stacy says. “While I’m able and have the energy, I will keep marching forward. It really does give me purpose and keeps me going.”
Although ALS has turned her world upside down, Stacy says she feels fortunate to have an incredible support system of family, friends, and her care team.
Among her messages to other people living with ALS?
“Find a place for your care that you are comfortable with,” Stacy says. “Temple has been my family. They’re not only my doctors and clinicians, they are also my family. I truly love them.
Helpful Resources
Looking for more information?