Receiving a diagnosis of amyotrophic lateral sclerosis (ALS) can be a devastating and overwhelming experience. The uncertainty of what you and your family are about to face will undoubtedly lead to a long list of questions, and it will be important to find answers from a trusted source as you navigate the future.
What do I do now?
That’s where ALS experts at The Ohio State University Wexner Medial Center excel. During the period following diagnosis, we can confidently give you a plan of how we’ll help you manage symptoms, try new therapies being tested in clinical trials and mentally cope with the grief of living with ALS, also called Lou Gehrig’s disease. Our multidisciplinary ALS/Motor Neuron Disease Clinic will bring efficient, personalized care to you at one convenient location.
But we’re more than just a clinic. We’re a community of passionate people all working toward the same goal: to give you as much quality of life as possible and provide you with the autonomy to make informed health care decisions.
Why choose Ohio State for ALS care?
Though there isn’t a cure for ALS, where you go for care matters. Our expertise in ALS is unmatched in the region, and we’re a leader nationwide in caring for people with ALS and their families.
A team approach to treatment
We know ALS, which is a neurodegenerative disease that affects the cells in the brain and spine, is a complicated and progressive disorder. That’s why we’ve established a team of experts dedicated to diagnosing and proactively managing your ALS symptoms to lead the ALS/Motor Neuron Disease Clinic. Our team includes:
- Neurologists with fellowship training in motor neuron diseases
- Nurse practitioners who are expert ALS clinicians
- Genetic counselors
- Respiratory, physical, occupational and speech therapists
- Social workers
- Research coordinators
- Nurses specially trained in ALS care
ALS can be difficult to diagnose in the early stages, often taking up to a year to receive a definitive diagnosis. The fellowship-trained neurologists at our ALS clinic are recognized worldwide for their ability to diagnose the most complex ALS cases, which can give you more time to focus on managing symptoms and enjoying life.
Our physician-scientists relentlessly pursue answers to explain what’s happening to you. In addition to a thorough medical history and physical exam, our doctors may perform electrodiagnostic tests, tests for other motor neuron disease syndromes and tests to rule out alternative diagnoses. We may recommend genetic testing.
We manage the care of more than 250 people with ALS at any given time, and we’ve cared for thousands since the opening of our ALS clinic in the mid-1990s. We know what people with ALS and their families need at various stages of the disease, and we know how to best serve you at this critical time. Whether you need assistance enrolling in leading-edge clinical trials, getting a referral for home health care or finding equipment to help with daily living, we’re here to help.
Research and clinical trials access
Our ALS clinic gives you access to leading-edge basic science research (studies meant to increase our knowledge base about how things work) and clinical trials for ALS that are available at only a handful of centers across the country. In addition, our integration with national research and clinical trial programs provides us with access to further our knowledge and expertise in treating unusual and difficult symptoms.
Ultimately, we’re inching closer every day to finding treatments that prolong people’s lives and eventually cure this disease.
How do I enroll in an ALS clinical trial?
Clinical trials are an important part of patient care as well as finding a cure. If you’re interested in enrolling in an ALS clinical trial, please email ALSResearch@osumc.edu.
If you’re interested in learning more about our ALS basic science research program, please click here.
What exactly is ALS?
ALS is a fatal motor neuron disease that affects the nerve cells in the brain and spine. It’s progressive, meaning symptoms worsen over time. The devastating disorder negatively impacts all types of muscular function but typically doesn’t affect cognitive abilities.
It’s often called Lou Gehrig’s disease, referring to the famous baseball player who died from the disease in the 1940s. ALS usually strikes between ages 40 and 60, but it can occur at other ages. Sometimes the disease runs in families with a certain genetic makeup, but most of the time, we don’t know the cause of ALS.
How will my ALS symptoms progress?
People with ALS often experience symptoms differently, and symptoms progress slower in some people and more rapidly in others. Early symptoms might mimic those of other diseases or be ignored as simply a sign of aging. That’s one of the reasons the disease can be so difficult to diagnose.
Early symptoms of ALS
Early warning signs of ALS include:
- Muscle twitches or cramps
- Muscle weakness in arm, leg or chest
- Tight or stiff muscles
- Slurred speech
- Difficulty with simple tasks, like buttoning a shirt or tying a shoe
Progression of ALS symptoms
Since the disease is degenerative, these symptoms will worsen over time. But our job is to offer hope that we can slow the progression when possible and minimize the effects on your health and quality of life as best we can. More advanced symptoms of ALS include:
- Loss of ability to walk, and eventual paralysis
- Difficulty breathing (dyspnea), to the point a ventilator may be needed
- Trouble swallowing (dysphagia)
- Inability to talk
ALS treatment: management of symptoms
While there is no proven treatment or cure, we can offer therapies to try to manage the symptoms and help you take control of this uncontrollable situation. Our ALS specialists will develop a personalized plan for your care to prolong the quality of your life and provide emotional support for you and your family.
Our expertise and experience help us anticipate your needs and determine next steps throughout the course of your disease, allowing you to focus on enjoying the time you do have. Because we have a collaborative clinic made up of experts from various fields, one of our strengths is the wide range of therapies we’re able to offer in one convenient place.
Targeted gene therapy
Ohio State has started administering an FDA-approved targeted gene therapy treatment for patients with ALS, who have a mutation in the superoxide dismutase 1 (SOD1) gene (SOD1-ALS).
There are some medications that can be used to help manage symptoms, including drugs that might slow progression, help control spasticity or improve quality of life.
Following a thorough assessment, our physical therapist customizes a plan that addresses:
- Maintenance or improvement of muscle strength and joint flexibility
- Energy conservation and fatigue reduction
- Equipment or adaptations in the home
- Minimizing pain due to muscle cramping or spasticity, overstretched or contracted muscles and body positioning or pressure
- Home exercises
- Safe and efficient transfer techniques as you are moved from one place to another
- Prevention of complications, such as shoulder and neck problems and falls
Occupational therapy helps you learn adaptive techniques for everyday tasks. Through our Assistive Technology Center, we provide you with resources and equipment, such as wheelchair and communication devices. We also work directly with mobility equipment specialists and rehab engineers to assist you with optimal use and comfort of wheelchairs and other assistive devices.
Respiratory therapy is overseen by providers who specialize in working with people with ALS. Therapists monitor breathing capacity and oxygen intake. As you have increasing difficulty with breathing, our therapists provide exercise and other tools for better breathing.
Many patients eventually require breathing support with a ventilator. We were the first multidisciplinary clinic in Ohio and one of only 30 ALS clinics in the United States to offer patients the implantable NeuRx DPS® (diaphragmatic pacing system) device. NeuRx helps a person breathe more easily by electrically stimulating the nerve that causes the diaphragm — the large muscle at the base of the rib cage — to contract. As the diaphragm contracts, it allows the lungs to expand so you can take in air. The device is implanted during minimally invasive surgery.
Speech therapy matches you one-on-one with a therapist who evaluates and treats speech, language, cognition and swallowing disorders associated with ALS.
Basic Science Research
Please bring to your first appointment all records, written reports and lab results from neurologists or referring physicians, as well as a CD of MRI and other imaging results. Also prepare a written family history of neurological diseases for our discussion during your visit.