While many people have heard of “Lou Gehrig’s disease” or perhaps participated in the Ice Bucket challenge, few know much about the realities of amyotrophic lateral sclerosis (ALS).
In the United States, there are about 20,000 people living with this condition, says Tomas H. Holmlund, M.D., a neurologist and medical director of the Neuromuscular Center/MDA Clinic at DENT Neurologic Institute. The disease can strike anyone, regardless of gender and race, but it mostly affects people over the age of 55. A person diagnosed with ALS is expected to live between two and five years after diagnosis, but medical advances are helping improve quality and length of life in many people with the disease.
HealthCentral talked to Dr. Holmlund and his patient, John Hamilton, a 56-year-old man who was diagnosed with ALS in 2016, about what it’s like to live with this aggressive condition — and the hope for a cure.
HealthCentral (HC): John, can you please tell us about your journey to diagnosis with ALS?
John Hamilton: My road to being diagnosed with ALS started when I had injured my ankle. It wasn’t healing, so I ended up having an x-ray taken. I got an orthopedic doctor, and while he was examining me, he noticed that my legs were very weak. He asked me why I thought my legs were weak, so I told him that I worked for over 30 years as a carpenter doing heavy construction, so I just figured my legs were getting tired and worn out. And he said, “You know, John, for your age, and what you’ve done all your life, your legs should be a lot stronger than that.”
So he had me get up and walk for him, and as he watched how I was walking, he said, “I need to get you to a neurologist right away. I don’t know if you have a pinched nerve in your neck or your lower back that’s creating some nerve damage in your legs.” So that was the start of my road to being diagnosed with ALS. I was fortunate enough to get in to see Dr. Holmlund, who was my neurologist.
HC: Dr. Holmlund, how does this condition affect people?
Dr. Holmlund: ALS is a neurologic disease, and it causes weakness. This weakness can occur anywhere in the body. It could be in the foot, the hand — it can even be the tongue. And what really sets it apart from any other disease is that it relentlessly and quickly progresses. So the hand that’s weak becomes weaker, and then the arm gets involved. With weakness of the tongue, the speech gets slurred, and you have difficulty swallowing. For many — and this is what we really dread — is that it can affect breathing. And all of this occurs without pain, numbness, or tingling, so it relentlessly progresses. And it cuts many patients’ lives short. Many patients don’t live more than three to five years.
HC: John, what are some things you do to cope and stay hopeful while living with ALS?
John: I’m fortunate enough to have a beautiful wife of 37 years who has been by my side every step of the way, and tremendous support from my children, family, and close friends, so that’s what gets me through every day. I just try to take the right attitude to live each day to its fullest, and try to not let the disease consume me as it did in the very beginning. I have a great support group with my doctor, too.
HC: What is your greatest hope for the ALS community?
John: My greatest hope is that we can continue with the research and development to hopefully find a cure for this disease — if not, [then perhaps] more drugs to help combat it.
HC: Dr. Holmlund, what new treatments are being developed for ALS?
John: There is a lot on the horizon. As we speak, there are new drugs being tested, stem cells are being tested in a way they haven’t before. There is hope in this research. I think the biggest hope lies within the genetic issues surrounding ALS. And the research will hopefully give us the answers to why a person develops it, and when we know why, it is going to be easier to find a treatment. And I’m not just saying this — I really am hopeful. There is more research now for this disease than there has ever been. So I think we’ll have an answer in the coming few years.
HC: John, what is something you wish others knew about ALS that they may not know?
John: It becomes challenging. Every day, it’s a little harder. Just the simple tasks that you took for granted before become a little bit more difficult to deal with. It’s tough to put into words how you’re going to deal with it. Every person deals with a little differently. I’m just fortunate to have a great support system standing by me. And just trying to have the right attitude to keep living and hoping that we can finally have a cure for this disease.
I would like to just bring awareness to people to listen to their bodies. If you notice that something doesn’t seem right, definitely don’t shrug it off, and get yourself checked out — because the simplest thing can lead to something like this.
[Interview has been condensed and edited]
See more helpful articles:
Lara is a digital editor for HealthCentral. She is the site’s staff writer, Sexual Health editor, and email newsletter chief. Previously, she worked as the patient education editor at the American College of OB-GYNs, where she became obsessed with learning about women’s health, and as a news writer/editor at WTOP.com. Connect with her on Twitter @laradesanto.