In recognition of ALS Awareness Month, we’re sharing stories nearly every day in May about people living with the disease and their caregivers, the volunteers and health care providers who help make the lives of people with ALS better, the powerful fundraisers and the participants in Walk to Defeat ALS and Team Challenge ALS events, and the researchers fighting for a cure.
Studies have shown the value of attending a multidisciplinary clinic for a person with ALS, including longer survival, increased quality of life, and improved access to potential therapies. Since 1998, The ALS Association’s national Certified Treatment Centers of Excellence (CTCEs) network has provided ALS care and services in a supportive atmosphere, with an emphasis on hope and quality of life.
This is the first article in what will be an ongoing series of spotlights on the 62 CTCEs across the U.S. that have partnered with The ALS Association.
We recently talked with Dr. Paul E. Barkhaus – director of the ALS Program at Froedtert & Medical College of Wisconsin, professor of Neurology and Physical Medicine & Rehabilitation at the Medical College of Wisconsin, and chief of the Neuromuscular and Autonomics Program at Froedtert Hospital – to learn about his CTCE.
Serving approximately 270 people, the ALS Program at Froedtert Medical College of Wisconsin was started in 1997 and certified by The ALS Association in 2006.
Froedtert & Medical College of Wisconsin – ALS Program
Center Director: Dr. Paul E. Barkhaus
Co-Director: Dr. Dominic Fee
How is the multidisciplinary ALS clinic model beneficial to people living with ALS?
The benefits are reciprocal. First, the patients typically need only one long (2-2.5 hour) visit, during which they see all the disciplines involved with their ALS care. While the visit is longer and tiring for those with advanced disease, it saves them from multiple appointments.
From the provider standpoint, our assessments are synchronized, allowing us to make concise, consensus recommendations to patients and their families. We participated in a recent study that showed this model to be, overall, cost-effective.
What is a person’s first multidisciplinary clinic visit like? Please describe what can be expected.
About two days before the clinic appointment, our case manager calls the patient to discuss current concerns, problems, and social issues, and forms needing completion while in clinic. On the day of the appointment, the patient has a brief intake session to review medications, take vital signs, etc.
Then, the patient begins seeing various team members, some of whom work together, such as occupational and physical therapy, or the social worker, The ALS Association patient services coordinator, and the chaplain. We have four rooms going at once, so there is usually no order in which they are seen.
Recently, we put up a board with pictures of each team member in each room. Once the team member has been seen, their picture is moved from right to left. This process helps (particularly newer patients) track who they’ve already seen.
Why did you want to work with people living with ALS?
I didn’t begin my career in 1980 with this in mind. Ironically, my first presentation to a group of colleagues, on caregivers in ALS, occurred that same year. Perhaps that was a sign I didn’t appreciate. I would begin focusing on ALS in the late 1990s.
At that time, there was a small group of investigators called the Great Lakes ALS Study Group. I was at a Neurology meeting when my friend, Dr. Jerry Mendell from Ohio State University, approached me and said, “Paul, you should get involved with ALS.” One does not say no to Jerry.
I quickly rekindled my interest from 1980. That interest fortuitously melded perfectly with my research in electromyography signal analysis in tracking motor unit loss. Looking back, I’d like to say I’ve made a difference, however small, in advancing care of ALS patients.
We’re constantly inspired by people living with ALS. How do your patients inspire you?
I think, in a single word: courage. Each person with ALS has his own way of coping with his disease. It’s a true privilege to be there with patients at the various stages of their disease progression to see how they and their families deal with ALS.
In what types of ALS research is your center involved? What specific areas of interest or current projects do you want to highlight?
Over the years, our Center has been involved with multiple drug and other clinical trials. Our most remarkable achievements have been in studying the electrophysiologic measurement of motor unit loss, especially in ALS.
In the past 20 years, we’ve been researching a newer technique to assess this called the motor unit number index (MUNIX) that was originally devised by my colleague, Dr. Sanjeev Nandedkar. It was slow to gain acceptance, but with hard work and the contribution of many hours from our patients, this technique is gaining widespread acceptance as a preferred technique to track motor unit loss.
Recently, we’ve collaborated with Dr. Melinda Kavanaugh at the University of Wisconsin-Milwaukee in doing research on children as caregivers in ALS. Finally, I’ve engaged our basic science staff at Medical College of Wisconsin to start examining the genetics of this disease.
Caregivers are vital for people living with ALS, and often, family members serve as primary caregivers. Does your center offer support services specifically for these caregivers?
Absolutely! In the military, each combat soldier requires several other military to support them. The same is true in ALS. When patients come for their visits, we make a special point of assessing their support network.
No single person can be a support (e.g. a spouse). If a patient has only a single support person and they become unable to provide support (which we have experienced), the care for the person with ALS is severely compromised or collapses. Often, people with ALS and their families don’t appreciate how tenuous their situation may be. We strive to ensure patient care is assessed very comprehensively.
In your opinion, what is the value of collaborating with The ALS Association to serve your patients and their families?
I must pay tribute to The ALS Association Wisconsin Chapter that has supported us from the start. We have regular and multiple support groups around our region, plus an annual symposium directed to patients and their families. The groups help support educational activities for our team. The chapter also regularly raises significant funds for both research and clinical care.
To become certified, each CTCE must meet The ALS Association’s clinical care and treatment standards, which are based on the American Academy of Neurology (AAN) Practice Parameters. They must also actively participate in ALS-related research and successfully complete a comprehensive site review to be certified as a CTCE. Clinical trial participation is imperative to the research process of finding treatments for the disease. Thanks to donations from the ALS Ice Bucket Challenge, The ALS Association has increased the number of CTCEs as well as the size of its annual grants to each one.