Individuals with ALS and their families find unwavering support from MDA
Like all people living with amyotrophic lateral sclerosis (ALS), Joan Sucher, 65, a mother of three adult children in Ballwin, Mo., was devastated when she received her diagnosis. “My life collapsed,” Sucher shares in an email interview with Quest. “We were inconsolable. I had been healthy and active all my life. I ran regularly and finished nine half marathons after age 48. And I had no family history of the disease. Why was this happening to me?”
But Sucher has accepted her diagnosis and coped well during the two years since she first received the news, thanks not only to her close-knit family, her friends and her faith, but also to the support she’s received from the Muscular Dystrophy Association (MDA). “[MDA] basically came to me with open arms, soothing voices and offers to help walk this walk with me and my family,” she writes. “They are there for me when I need something, anything.”
Sucher is just one of thousands of people living with ALS who rely on MDA for medical care, information and emotional support. “Countless people in communities across the country are depending on us as they navigate their journey with ALS,” says Michelle Morgan, MDA’s senior vice president of health care services. “We are ready, willing, and able to help with a variety of needs through specialized programs made possible by generous donors.” This includes access to nearly 200 multidisciplinary clinics, including 44 designated ALS centers; an extensive support network for people with ALS, their caregivers and loved ones; a national equipment program; and many other resources and services. MDA also is the world leader in funding ALS research. (For more on MDA’s role in ALS research, read From Lab to Clinic.)
|Kristin McCoy, diagnosed with ALS in 2012, has found support in many forms through MDA.|
Many ALS families first become acquainted with MDA through referrals to its world-class clinic network. Before Kristin McCoy, 47, of Marshville, N.C., visited the MDA/ALS Center at Carolinas Medical Center in Charlotte, she had seen a neurologist and a respiratory therapist. “At my MDA clinic, I met with an entire team, including a speech therapist, occupational therapist and physical therapist,” says McCoy, who received her ALS diagnosis in 2012.
When McCoy needed a walker and shower bench, her MDA clinic team helped her obtain it. “If you need assistance obtaining medical equipment that’s been prescribed,” says Morgan, “reach out to your local MDA office to see if it’s available through MDA’s equipment inventory program.”
MDA/ALS clinics also often serve as an access point for ALS families to connect with each other. During a clinic visit, McCoy and her husband, Bob, met another couple in the same situation that lives just 20 minutes away. Now, she says, “we lean on each other.
“The clinic has opened new doors for us,” she adds. “Every person on staff is dedicated to helping us maintain our lifestyle and live life to the fullest.”
Tim Shaw agrees. The 30-year-old former linebacker for the NFL’s Tennessee Titans was diagnosed with ALS last April following a puzzling decline in his athletic abilities. In speaking about his local MDA/ALS Center at Vanderbilt University Medical Center in Nashville, where he lives with his father and mother, Shaw says, “We feel a genuine concern for us [there]. They’re focused on helping us cope with symptoms.”
Shaw plans to become involved with MDA in other ways, too. “I hope to use my platform to help impact this disease by raising money and awareness for the organization,” he says. In fact, Shaw first revealed his diagnosis in a video where he dumped a bucket of ice water over his head as part of last year’s ALS Ice Bucket Challenge and then challenged the Titans, as well as his college and high school teams, to do the same. “It was the vehicle for him to make the news public,” says his father, John. “The outpouring of response and support since has been overwhelming.”
Compassion and support
|Tim Shaw (center), a retired NFL football player, was diagnosed with ALS last year.|
When it comes to support, ALS families know they have a one-of-a-kind resource in MDA. The organization’s ALS support groups have been a godsend for many, including Patty and Alan Blake of San Diego. Patty, 58, who received a diagnosis in 2012, is now in the advanced stages of ALS, unable to stand or use her hands. She uses an eye-tracking communication device as well as a word board and head-mounted laser pointer to communicate with others and even writes about her experience with ALS on her own OK, So Far blog. Many of Patty’s blog posts also are featured by MDA on alsn.mda.org/blogs.
“We attended our first [MDA support group] meeting in early 2013, and we rarely miss the monthly meetings,” Blake writes in an email interview with Quest. “Connecting with other ALS families has meant the world to us. They know. We have made some of our best friends through the group. It really makes a difference when you know you are not alone.”
Importantly, ALS caregivers benefit from their own support system through MDA. “ALS affects the entire family, not just the individual,” observes Scott Wiebe, MDA divisional director of health care services for the Western region. In fact, “Caregivers need a place to ‘vent’ even more than we PALS do, I think,” Blake says, referring to “People with ALS.” “We are grateful to MDA for making this happen and providing a space to meet.”
“The health professionals tell us ‘ALS people’ we must try to eliminate as much stress from our lives as we possibly can because that only accentuates and exacerbates the effects of ALS,” Sucher writes. “The best way to achieve this, I firmly believe, is to stay connected with MDA and use what they offer so freely.”
Tracking ALS causes and care
In addition to helping with the day-to-day challenges people living with ALS face, MDA is involved in ALS-related advocacy efforts and has launched the U.S. Neuromuscular Disease Registry with the goal of tracking patient data to help better understand the disease and determine best practices in care.
“There is much we have yet to learn about caring for people with ALS,” says Valerie Cwik, MDA executive vice president and chief medical officer. “By collecting physician-entered data in the MDA registry, we aim to develop a comprehensive picture of diagnosis, disease progression and outcomes related to medical management. Ultimately, we are working to identify the best medical practices for caring for those with ALS.”
The registry, which is already collecting data on ALS from over two dozen pilot sites with plans to expand, complements the National ALS Registry overseen by the federal Agency for Toxic Substances and Disease Registry (ATSDR); the latter focuses on the causes of ALS. “With both registries, we’re going to have a more complete story — data for researchers on possible causes of ALS and what works best to treat it,” says Carolyn Minnerly, MDA’s director of support services. “We’re going to have information we’ve never had before.”
While the ALS community waits for findings on both fronts — research on causes of and better treatments for ALS — MDA will keep providing critical support and care. Erin Brady Worsham, 56, of Nashville, knows more than most how important that can be. She was diagnosed more than 20 years ago. Through the years, she has received care at the Vanderbilt MDA/ALS Center, sought out MDA-sponsored support groups and taken advantage of the wheelchair-repair services the organization provides. She also is a regular contributor to the MDA ALS blogs, sharing her candid observations about living with the disease and offering guidance to other ALS families.
“These services have meant the world to me and my family,” Worsham writes to Quest. “MDA has our back, and that is incredibly comforting.”
Blake echoes those sentiments. “Knowing that people at MDA care about those of us with ALS so much — money for research, practical help, emotional support — feels like we have a champion in our corner fighting for us,” she writes. “And that’s a very good feeling.”
What is ALS?
In ALS (amyotrophic lateral sclerosis), the nerve cells in the brain and spinal cord that control muscle activity are gradually lost, leading to weakness or paralysis. Many people with ALS ultimately require mobility aids, such as power wheelchairs, and/or technology to assist with breathing, eating and speaking.
Share Your ALS Story
MDA offers a robust collection of ALS blogs that feature a stream of “ALS voices” from all walks of life. The blog posts, including those by Erin Brady Worsham and Patty Blake, who are featured in this article, cover the ups and downs of living with ALS from the perspectives of those who know it best: people with ALS, their family and friends, caregivers, researchers, advocates, therapists and others.
To share your own ALS story with MDA and the ALS community, send your ideas, submissions or a link to your blog to firstname.lastname@example.org.
MDA ALS Caregiver’s Guide
If you have a loved one living with ALS, be sure to read the MDA ALS Caregiver’s Guide. The guide will serve as a resource as you help your loved one through the progression of his or her disease. It also will help with your own journey as an ALS caregiver. Go to mda.org and read the guidebook or download it as a printable PDF.
Beth Howard is a freelance writer living in Charlotte, N.C.