The team at the University of Iowa Health Care ALS Clinic offers expertise and care, whether you’re diagnosed here or are seeing us for a second opinion.
We’re a multidisciplinary ALS clinic. This means we have multiple experts with different medical backgrounds working together for you. When you receive care from a multidisciplinary team, each specialist uses their expertise to recognize and address your symptoms right away. This means a better quality of life for you.
As an academic medical center, we offer you the opportunity to be part of clinical trials for new treatments. While there’s currently no cure for ALS, you’ll have access to therapies that aren’t yet widely available.
Our clinic is set up for your comfort and convenience. Our care team focuses on your—and your family’s—physical and emotional needs from every angle.
ALS symptoms and diagnosis
ALS is a progressive disease of the nervous system that affects nerve cells in the brain and the spinal cord.
The disease attacks nerve cells that control voluntary muscle movements. Over time, the muscles weaken, causing a range of disabilities and loss of movement.
Symptoms of ALS usually come on gradually. They might include:
- A tired, heavy feeling in your arms and/or legs
- Overall fatigue and weakness
- Stumbling or tripping
- Slurred speech
- Dropping things
- Muscle twitching or cramping
How ALS is diagnosed
For diagnosis or a second opinion, your first stop at UI Hospitals & Clinics will be the neurology clinic.
There isn’t a specific test that diagnoses ALS, so the neurology team will likely run tests to rule out other conditions. These might include:
- An electromyogram (EMG) to measure how well electrical impulses travel through your nerves
- A neurological examination
- Blood and urine tests
- Imaging, including X-rays and MRIs
How ALS progresses
ALS gets worse over time, although you might have periods when your symptoms hold steady. The disease eventually affects movement, speech, swallowing, and breathing.
ALS is a fatal disease, but it progresses at different rates for everyone.
ALS treatment at UI Health Care
There is no treatment that can stop ALS from progressing or reverse damage to nerve cells. Care for ALS involves controlling your symptoms, maximizing your independence, and making it easier for you to live with the disease.
Your customized care plan might include:
- Medications for symptoms such as muscle cramps and excess saliva
- Physical and occupational therapy to teach you exercises for mobility and strategies for daily living
- Speech therapy for speaking and swallowing, and for using technology to communicate when talking becomes difficult
- Respiratory therapy to teach you techniques for breathing and coughing, and mechanical ventilation to help you breathe
- Nutrition therapy to help you maintain a healthy diet and get enough calories
- Assistive devices for daily living, including mobility devices such as a walker or motorized wheelchair, home modifications such as ramps and grab bars, and other specialized in-home equipment
- Genetic testing to see whether your ALS is the type that can be inherited (true in about 10% of cases)
- Counseling to help you and your family cope with the difficulties of living with ALS
Your care team
You’ll be treated by providers who have special training in managing ALS, including:
- Neuromuscular physicians
- Physical and occupational therapists
- Speech pathologists
- Respiratory therapists
- Social workers
- Genetic counselors
The team works together and collaborates with you and your family to build your care plan.
They’ll also work with your primary care provider, therapists, home health care professionals, and others to make sure you get the care and equipment you need while at home.
A clinic centered on your needs
You can get your ongoing care at our ALS clinic locations in Iowa City or the Des Moines area. Most people visit the clinic every two to three months. The period between your clinic visits may be longer or shorter, depending on your needs.
Both locations are set up to make your visits as convenient and streamlined as possible. Each time you visit, you’ll have one appointment in one location, so you don’t have to travel to multiple offices. You’ll stay in a single room for your three- to four-hour visit, and all your providers will come to you.
Every appointment will be tailored to your symptoms, questions, and concerns. You’ll have one contact person you can call or message through the MyChart online portal.
Access to the latest innovations in treatment
You’ll have access to the most advanced treatments for ALS. UI Health Care is the only system in Iowa where you can take part in clinical trials for new ALS therapies and treatments.
Because our clinic is part of an academic medical center, many of our specialists are also researchers seeking to advance ALS diagnosis and treatment. You may be eligible to participate in trials of new therapies before they’re available anywhere else.