Three years ago Eric Von Schaumburg was at that sweet spot in life. He was 29 years-old with an amazing job, a wonderful girlfriend, and a future as bright as one could hope for. Then in early summer of 2013 he received the shocking news that he has ALS, also known as Lou Gehrig’s disease. Faced with a devastating progressive neurodegenerative disease that has little treatment option and no cure, the Chicago man says he spent a short amount of time coming to terms with the battle ahead of him, and then quickly turned his focus to doing whatever he could to inspire others. Although he has lost the ability to speak, eat, or breathe on his own, Eric says he is filled with gratitude and an unwavering focus to live each day to the fullest while bringing as much awareness as possible to ALS.
Q: Your first personal blog on the website that documents your battle with ALS – www.fightlikeachampion.org – was posted on July 18, 2013, one month after your diagnosis. What made you decide to write about your experience with this disease?
A: I think it was multi-faceted. First, the logistical reality of updating people instead sending one-off replies kept me from feeling completely overwhelmed. Second, this was when I was at my lowest point. Putting my pen to paper in a serious but sarcastic tone was my first dose of self-therapy. It was a way to circle the wagons and show myself that I could still be “me.” Lastly and most importantly, early on I felt a responsibility to tell my vast network all the devastating things I was learning about ALS. Once I emerged from the depths of futility, I viewed my diagnosis as an opportunity to spread awareness. I was conscious that not many 29 year-olds with amazing friends and family were getting diagnosed with ALS.
Q: You were diagnosed almost three years ago, at the very young age of 29. Since then you have gotten married, traveled to wonderful places, spent a lot of time with family, and you even became a first-time uncle. At the same time you have been seeing the effects of ALS and have lost your ability to speak, eat, and breathe on your own. There have been so many highs and lows in such a short time. What keeps your mind in a positive place?
A: ALS can take many things from me which I don’t have the ability to control, but it cannot change the core of who I am, and that has always been a positive, optimistic person with a great passion for life. This attitude has stayed consistent for me throughout my journey with ALS. It is inevitable for your mind to go to dark places at times when battling a disease like ALS, but what prevails is my desire to constantly challenge myself to become a better person in the face of adversity and to experience life in any way possible. I try to view my ALS diagnosis as a unique opportunity to affect many people’s lives in a very meaningful way, instead of as a tragedy. This is an opportunity a lot of others do not get. It has given me a platform in which I can utilize the gifts I have to inspire others to also face the many challenges this disease brings with courage and hope. Also, being able to keep myself strong mentally and spiritually and separate my sense of self from my physical abilities has been key in maintaining positivity. I am determined not to let myself become a victim of ALS, no matter what ALS does to my physical being. Staying positive is not always easy, but sometimes you have to remember to take things one day at a time, put one foot in front of the other (figuratively speaking of course), focus on the things you do have and be thankful for the day at hand.
Q: There have been tremendous breakthroughs in recent years that are still in clinical trial stages. There are also experimental treatments for people with ALS, and unfortunately they are not covered by insurance. You have taken part in some clinical trials. Are there any more on the horizon? And how easy is it for people with ALS to access these trials?
A: I was part of two clinical trials. One was an infusion I received traveling 3+ hours every other week to Grand Rapids for 10 months. The other one was a high profile stem cell surgery outside of Boston that involved more than 10 flights. Both clinical trials had a placebo arm, which is extremely frustrating. I need to agree not to try any sort of experimental drugs while in a trial (as I watch my body deteriorate), yet there is a chance I’m receiving saline solution as my experimental drug of choice… not to mention the time and effort involved. I did find out that the first trial in Grand Rapids was a placebo. As for the stem cell surgery, we will not know until next year. The fact that they actually will put an ALS patient under anesthesia only to inject saline solution with a spinal tap is difficult to take, although I do understand the need for double-blinded experiments and placebo-controlled trials — it’s just different when it’s you. Unfortunately, most all clinical trials have several exclusionary criteria, as I alluded to previously. I no longer qualify for most trials for a number of reasons — the two biggest being that I am more than two years past my first symptom and I am using a ventilator.
Q: According to ALSA.org, approximately 6,400 people in the U.S. are diagnosed with ALS each year and it is estimated that more than 30,000 Americans may be living with ALS at any given time. While it’s characterized as a “rare” disease, it’s also among the most devastating – people with ALS will die in an average of just two to five years because an effective treatment does not exist. From securing more federal funding, to double-blind testing models and removing regulatory barriers that hinder the development of new treatments, what are your thoughts on how this disease is dealt with at a federal level?
A: One of the most difficult parts about living with ALS is the lack of any viable treatment and the length of time it takes to approve a drug with the FDA. It leads to a great deal of frustration and helplessness. Patients often have a difficult time finding clinical trials (I live in the 3rd most populated city in the U.S. and went to Grand Rapids and Boston for clinical trials due to lack of options), yet drug companies seem to have a hard time signing up patients. This is likely because there are many exclusionary criteria — e.g., patient must be within 2 years of “first symptom.” I do like the fact that there has been a recent push for “expanded access” or “compassionate use” which allows patients to gain access to investigational drugs. We still have yet to see this movement really take off in concrete form. One problem is that pharmaceutical companies may feel expanded access usage could possibly jeopardize their clinical trials without seeing much shareholder benefit to expanded access programs (especially if they are not collecting data). There are also several moral and ethical components around distribution of these types of drugs (who pays for them? Who receives them and how are the participants selected? etc.). There is a prominent expanded access program currently underway (in Europe only), which I hope will pave the way for many more programs that will lead to a quicker cure.
Q: Last month the Independence Plus blog featured a quadriplegic man who is also a patient of ours. He was speaking of the importance of being cared for at home and how it has changed his frame of mind, among other things. What does being able to be at home with nursing care mean to you?
It really is everything to me. Having endured a recent 22-day stay in ICU followed by a 32-day stay at the RIC, I saw first-hand what it’s like to be away from home for a long period of time. You’re constantly remembering things you wish you had from home; sending family on scavenger hunts looking for the next item you need. There is definitely a feeling of being homesick. Other than the obvious mental uplift of being at home, there are other advantages too. My favorite aspect is the relationships I’ve formed with my IPI nurses. They’re some of the best people I’ve met and I always look forward to our conversations. They are the epitome of professional but they have personalities, too. I always look forward to the laughs we share.
Q: You were profiled for the MDA Telethon and you said that after being diagnosed with ALS you decided that the rest of your life would be spent inspiring people and trying to help find a cure for this terrible disease. Where do you get your amazing strength?
A: I think the foundation came from my grandparents and parents, who have always viewed everything as being half full. I was also fortunate to have some extraordinary teachers and coaches who helped me understand that we are not entitled and that hard work and determination should form the basis for all your actions. I decided that I would not let ALS ruin my life, I knew I had to try and stay positive and show inner strength for other people who desperately needed support. By being a vocal advocate for ALS awareness I understand that we have a long road ahead to conquer this disease. The strength I have lies in the knowledge that if I can help make someone else’s life easier and I can put some laughter and inspiration in their lives, then we all are better off.
Q: You wrote that the only way to cope with your own terminal illness is by compartmentalizing it and living day by day. What advice would you give a person newly-diagnosed with ALS or a similarly life-changing disease?
A: For me, after absorbing the initial shock, I dedicated myself to understanding the disease encompassing my body and began to devise a game plan to fight back. I would tell those newly diagnosed to do the same. This disease will never affect the mind, the most useful and powerful tool available to us. Projecting into the future is senseless so you must live each day to the fullest, enjoy the simple things, and cherish every moment. You have to realize that self-pity, denial, and negativity are not options. Most importantly, having the love and support of friends, family, even strangers, helps one to remain strong and continue to fight.
Q: As someone who was once a strong, athletic man, you now have the perspective of someone who requires much more effort to navigate the everyday things that most of us take for granted. Is there anything you have noticed that you would like to see changed in order to better accommodate the needs of people with physical disabilities?
A: The most difficult part about ALS is transportation. I am lucky enough to have a great network of friends and family who have fundraised enough for me to purchase a wheelchair accessible van, but even with the van, going anywhere takes several hours of prep due to all of the machines and tools we need to pack. Getting in and out of the van and around can be difficult. Just recently, I was able to attend a White Sox game, and their handicap accommodations were fantastic, although it did take around 9 hours to make the trip from the suburbs due to the extra effort involved in going anywhere. But some patients are not as lucky; they do not have an opportunity to leave home at all, so I am grateful for my supporters who have given me the opportunity to still get out. In terms of policy changes, I would like to see better transportation options across the US, especially from the likes of Uber and Lyft. There have been some recent lawsuits against the companies for violating the Americans with Disabilities Act for failing to provide cars that are handicapped accessible. I hope that these lawsuits will lead to new mandates allowing ALS patients and other handicapped individuals to travel more easily.
Q: In the video for the MDA Telethon, your mom said it is your family’s mission to bring awareness to this disease. She said if every person tells three other people about ALS, it can truly make a difference. In what other ways can people help?
A: May is ALS Awareness Month, a time to give support to those affected by ALS and their families and encourage funding and research. During May, but most importantly throughout the year, a person can get involved and help bring ALS awareness by:
- Staying connected with ALS news & updates to know the latest facts, trials and research. Google Alerts is a great tool.
- Becoming an ALS advocate and the voice of people living with ALS, educating others in your community to spread awareness.
- Getting involved with various scheduled events through organizations such as MDA, Les Turner, ALS Association, etc. They offer activities to participate in such as 5K runs, walk-a-thons, Tag Days, Ice Bucket Challenge, Freeze ALS, etc.
- Attending various ALS fundraisers to volunteer your service, give support, and make donations.
- Using social media to spread awareness and find out upcoming events and ways you can help.
Most importantly keep talking to others and spread the word until a treatment or cure is found.
ALS is a progressive, degenerative disease of the motor neurons of the brain stem and spinal cord, characterized by a general weakening and wasting of the voluntary muscles, and eventually complete paralysis. It is presently incurable and usually is fatal within two to five years.
According to The ALS Association at www.alsa.org:
- ALS usually strikes between the ages of 40 and 70
- An estimated 30,000 Americans have ALS at any given time
- Military veterans are twice as likely as the general population to develop ALS
Click here to find out how you can get involved.
To read Eric’s ongoing blog of his fight against ALS, visit www.fightlikeachampion.org.