During the summer of 2014, the ALS Ice Bucket Challenge took social media by storm, as millions of people across the world doused themselves, and each other, with buckets of ice water. Though there were some who may have associated the challenge as a way to goof off or participate in a new trend, the real goal behind the challenge was to raise awareness about Amyotrophic Lateral Sclerosis (ALS).
ALS, also known to many as Lou Gehrig’s disease, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It is a debilitating disease, which leads to paralysis, respiratory failure, and eventually death. What is worse – there is no cure.
The ALS Association estimates that there are about 30,000 Americans currently living with ALS, and on average, there are more than 5,600 people diagnosed a year.
In November 2015, Diane Mummaw, a friend and industry colleague of ReEmployAbility, was diagnosed with ALS.
“When I was diagnosed, I knew very little about the disease,” Diane said. “Of course, I was aware of the Ice Bucket Challenge, but very little beyond that.”
The more Diane learned, the more she realized that this disease will not only affect her, but it will have an impactful and lasting effect on her family and friends as well.
Preparing for What Lies Ahead
“There is nothing that can really prepare you for what lies ahead,” she said. “There are so many things you need to consider when you begin this journey, and no one’s journey is ever the same. This disease has a unique effect on everyone. But I did realize that eventually, I will have to rely heavily on my family to get through this.”
Because this disease eventually leads to paralysis, Diane knew that she would have to be proactive and start renovating her home and making the proper arrangements to make that transition easier.
“My home renovations are in full swing and I’m staying with my son and daughter-in-law during the chaos,” she said. “I expect my home to be completed in the next two weeks and I’m very excited by all that is being done.”
Renovations include a bathroom expansion with a zero entry shower, the widening of doorways inside and out, and new flooring throughout her house.
Diane has been very fortunate as her progression has been – what her neurologist has claimed to be – unusually slow. The disease often leads to rapid nerve and muscle loss.
“I am very fortunate to report I have only suffered some minor additional loss to my arm and hand strength,” she said. “I continue to deal with fatigue, but I’m learning to manage it.”
Though she is strong enough to continue working for now, she will go on disability in January.
“Once I go on disability, it will give me an opportunity to spend more time with my family and dedicate more time to my advocacy,” she said.
Fighting for Awareness
Since her diagnosis, Diane has not only spent her time finding out all that she can about her disease, she has also devoted her time to becoming an ALS Advocate and spreading awareness about ALS. This year, Diane traveled to Washington, DC with her son and other advocates for the National ALS Advocacy Day and Public Policy Conference. There she shared her story with Congress and learned about the latest policies and initiatives.
“It was important for me to make this trip,” Diane said. “You never know how this disease will affect you, or how quickly. I am glad I went. Not only did it give me an opportunity to hear other stories, it was a way for me to connect my story with what is happening in Washington.”
According to the ALS Association’s website, the policy issues included legislation to waive the five-month waiting period for Social Security Disability benefits for people living with ALS and further support of the Dormant Therapies Act of 2014, which provides incentives to drug makers to develop medications that may not be profitable. She said that the trip was eye-opening and she is looking forward to heading back to Washington in 2017.
Not only is the disease a physical burden for those diagnosed, the disease also carries a hefty financial burden. Diane said that the projected annual cost for a patient is $75,000, much to which is paid out of pocket, as many of the medical costs associated with the disease are not covered by insurance.
How You Can Help
In an effort to help Diane with the high cost of the disease, her friends and family set up a Go Fund Me page. GoFundMe is a crowdfunding platform that allows people to raise money.
“I am extremely fortunate to be surrounded by such an amazing support system,” she said. “Their continual support and love is really what is helping me get through this with such optimism and hope. I am blessed to have them in my life.”
Her Go Fund Me page has currently raised over $30,000. Her family and friends have also created a team to participate in the Walk to Defeat ALS that will be held in Orlando on March 12, 2017. You can join Diane’s team or donate here. All funds raised for the walk will go to the ALS Association.
Leaving a Legacy of Hope
For over 20 years, Diane has been running Free State Staffing, providing adjusters career opportunities within the insurance industry. She is currently grooming her son, Mike, to take over her role when she retires and acts as a consultant for the company.
In January, Free State Staffing will host a legacy party in her honor. It is an opportunity for everyone to pay tribute to Diane and to express the contribution she has made in their life.
Two people that will be in attendance is ReEmployAbility Co-founders, Debra Livingston and Frances Ford. Both have known Diane for over 20 years, and as they reflect over their time spent with her, they both expressed admiration of her inspirational business acumen, her grace, and her upbeat, positive attitude.
“Diane’s spirit has always been filled with such grace and optimism,” Debra said. “It is amazing that she hasn’t lost any of that through such a life-changing event. If anything, it has only enhanced those qualities and shed light on her strength and perseverance as well.”
Frances added, “Those qualities will help her not only in her battle with the disease, but with all of her advocacy initiatives as well. She is intelligent, driven, and is a fighter. There is no doubt that she will do amazing work, not only in her own journey, but helping others through theirs as well.”
Diane’s fight, advocacy, and optimism has been inspirational. Being diagnosed with a terminal, debilitating disease could – understandably – possibly lead to feelings of hopelessness. For Diane, it has had the adverse effect. She remains optimistic, grateful, and blessed.
“I have always loved the quote, ‘It is what it is…,’” she said. “I have always found it interesting that the rest of the quote is, ‘…because something is not as it should be.’ I think it perfectly applies to how I look at this disease. Something is not right but I can only deal with what I have each day! I’m grateful all the time that the disease seems to be progressing slowly for me. Many of the ALS community are not so lucky.”