The Communicator

  • The Communicator will not be posting during spring break March 23-30. We hope everyone is able to get some rest!

The Communicator

The Communicator

Living with ALS

It’s odd to be in a waiting room, waiting for test results, [whereas] most people don’t want to hear that they have a brain tumor, the ALS patient actually [wants] that to be the case. It just puts it in perspective,” said Kristin McGuire, a founder of Ann Arbor Active Against ALS (A2A3), a local ALS charity organization. Sometimes the last test the doctor will do before diagnosing a person with ALS is a CAT Scan for a brain tumor.

ALS is such a dire diagnosis that often times, people who suspect they have ALS would prefer news of almost any other diagnosis. Diagnosing ALS is often a difficult process in and of itself. “ALS is very difficult to diagnose and the way you diagnosis it is by first eliminating everything else,” explained Dave Lowenschuss, another founder of A2A3.

Amytrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s Disease, is a progressive neurodegenerative disease for which there is no cure, or even wide-spread treatment, that has been shown to significantly slow its fatal rampage. ALS affects the motor neurons in control of voluntary muscle movements. The progression of ALS is neither simple nor easy. ALS is an aggressively progressive disease that increasingly impairs the nerves’ ability to send messages from one’s brain to the muscles.  From the point of diagnosis, a person with ALS is typically told he or she has two to five years left to live.

Bob Schoeni is an Ann Arbor resident who was diagnosed with ALS on July 29, 2008. Schoeni noticed his first symptoms while playing tennis. He was having difficulty getting the ball over the net. “About a week before [the diagnosis] I had kind of already self diagnosed. I had looked on the computer and thought ‘my symptoms are kind of like people with ALS,’ but when I went in [to the doctor’s office] and they told my wife and I, I was like, ‘Wow, this is real.’”

Typically, the progression of the disease starts with weakening muscle mobility in one appendage (a leg, a hand, or a foot) and spreads to limit mobility in other appendages. Eventually, in many cases, the muscles used for breathing fail as well. Although in the late stages of the disease someone with ALS may no longer have the ability to control their muscles, swallow, speak, or breathe on their own, the individual’s cognitive functions remain intact throughout the progression of the disease. Perhaps the scariest or most frustrating part of the disease’s progression is the fact that even as the body deteriorates, the mind is unaltered and trapped within an immobile body.

One of the ways Schoeni copes with ALS is through his positive, live-for-today outlook on life. Rather than focusing on his restrictions, Schoeni focuses on what he can do. “There are lots of great things to do in this world and I think we get tied to doing certain things. For me, I liked sports a lot– participating myself– but I can’t do that anymore, so I have to find other things. For now, it’s coaching. At some point I may not be able to do that, but I’ll find something else,” said Schoeni.

Schoeni does what he can to live a life not dictated by the symptoms of ALS. “There is scientific evidence showing that those who receive social support– help from friends– maintain their health longer and live longer. It’s the most effective drug that we have for diseases like this where there is no [significant] medical treatment,” he explained. This is where A2A3 comes into play.

“Bob (Schoeni) was diagnosed in the summer of 2008 and [he] shared the news with a lot of people,” said McGuire of the inspiration behind A2A3. Upon receiving the news, McGuire thought “we’re close with Bob and we’re like ‘Oh, my God.’ It’s really sort of shocking and devastating and then immediately we’re like, ‘what can we do?’ In the beginning, at least for Bob, his symptoms weren’t visible. There [weren’t] things we could do to help care for him like cook for the family. It [was] not at that point. So I remember one day Dave just saying, ‘You know what we should do? We should get people together and just try to raise as much money as we can for ALS research.’ That was the beginning,”

The mission of A2A3 is as follows. “Ann Arbor Active Against ALS (A2A3) is a grassroots, nonprofit organization whose mission is to raise funds for research toward effective treatments and ultimately a cure for ALS, while raising awareness of the disease, encouraging physical activity, and building a compassionate community.” The name of the organization, Ann Arbor Active Against ALS, was an intentional effort to promote activity and active lifestyles, in order to combat exactly what the disease takes away.

McGuire explained why raising money for and awareness about ALS are so necessary: “One thing that is ironic about ALS is that it’s considered an orphan disease. It’s an odd pharmaceutical term and it means a disease from which not enough people suffer to make it worth their while to put research money into it. The thing that is ironic about ALS is there aren’t many people in one given moment that have it because the life expectancy is so short after you are diagnosed, but over the course of time, many people have had it.”

Schoeni said that “A2A3 is a wonderful example of how one can show compassion and do great things. It has definitely helped me in a tremendous way.”

Since his diagnosis, Schoeni has gained much wisdom. “I hadn’t thought much about death or severe health problems and I think it’s useful to think about it when you’re healthy. To think about these, I think, makes for a stronger life and more informed decisions. I think you’ll think about decisions of career, family, and what brings meaning to your life in a different way if you were to ask yourself, ‘If I only had one year left in my life would I be living the life that I am currently or not?’ ‘If I only had one day, or one week, or one year, or even three or four years, would I change the way I’m living?’” said Schoeni. “I asked myself that question a lot shortly after diagnosis and I still ask myself that today. I feel fortunate to say I think I’ve made and I’m making the right decisions. I enjoy the career that I have, the family I have, and where we’re at.”

Schoeni expressed the need for high schoolers’ help. “If a high school student reaches out to [someone], it has even a more special meaning to them because there’s a young person who typically, stereotypically is concentrated on their own world and their own development, [who] has broken out of their shell and said ‘I’m going to reach out to this person in need and try to do something to help them.’”

Though ALS is a terribly debilitating disease, Schoeni’s positive outlook on life and the selfless efforts of A2A3 are an inspiration to all.

For those interested in getting involved with this unique organization, please visit A2A3’s website at www.a2a3.org

 

 

More to Discover
Activate Search
Living with ALS