ALS/Lou Gehrig’s Disease and other Motor Neuron Diseases

Amyotrophic lateral sclerosis, better known as ALS or Lou Gehrig’s disease, is a motor neuron disease that causes degeneration throughout the brain and spinal cord, and affects about 30,000 people in the United States. At the University of Michigan’s ALS Clinic (http://www.umich-als.org/), an ALS Association Certified Center of Excellence, we employ strategies to both lengthen and improve quality of life. We provide expert diagnostic services, comprehensive treatment, and compassionate, supportive care throughout the entire disease course of ALS.  Dr. Stephen Goutman is the Director of the ALS Clinic, Dr. Eva Feldman serves as Director of ALS Research, and Dr. Dustin Nowacek is the newest addition to the team.

We are also experts in treating other forms of motor neuron diseases including Primary Lateral Sclerosis (PLS), Primary Muscular Atrophy (PMA), Progressive Bulbar Palsy (PBP), and Kennedy’s Disease/Spinobulbar Muscular Atrophy.

As an ALS Association Certified Center of Excellence, which means we are recognized as the best in the field with regard to knowledge of and experience with ALS, we take a multidisciplinary team approach, allowing patients visits to be comprehensive while reducing the need for multiple visits. Services provided include: 

  • Respiratory therapy
  • Physical therapy
  • Occupational therapy
  • Speech and Language Pathology Evaluation
  • Nutrition services
  • Social work consultations
  • Genetic counseling
  • Physical Medicine and Rehabilitation Evaluation
  • Assisted Ventilation Clinic Consultation

We prescribe medications that are approved for ALS including riluzole and edaravone. We evaluate the need for non-invasive ventilation which can extend life by 13 months and also improve quality of life. We also closely monitor nutritional status as weight maintenance is beneficial.

These therapies are crucial to maintain and/or improve function and reduce fatigue. We tailor and alter treatments, as needed, throughout a person’s life. In addition to providing medical care, we also provide psychological support and education for patients and their families. We want persons with ALS to be able to stay in their home for the duration of their disease. We also help with preparations and strategies for the progression of the disease, so persons can make individualized disease-related decisions and maintain control over their life.

We know that some patients are not fully covered by health insurance or have limited insurance and large co-pays. Therefore, we are grateful for those that donate to our program to help provide some services at no cost to our patients. With ALS, there are many assistive devices for patients that may not be available to them due to financial reasons. We work with the ALS Association, ALS of Michigan, and other community resources to identify loaner closets for these patients so everyone, regardless of insurance, can use and benefit from these devices. 

Cutting edge research

We also offer cutting edge research and every patient that comes to our clinic can participate in some form of research. While treating persons with ALS or other motor neuron diseases is a large part of our clinic, we are also at the forefront of ALS research. Using many approaches, including basic laboratory research, epidemiologic research, and clinical trials, the University of Michigan is making major contributions to our understanding of ALS and the discovery of new treatment options.

One major research focus is identifying why people living in Michigan seem to be at a higher risk of ALS compared to other states. Led by Dr. Stephen Goutman, we evaluate for environmental risk factors via a survey and house an ALS patient biorepository that provides samples of biofluids (such as blood) to ALS researchers (https://umhealthresearch.org/#studies/HUM00028826). Researchers under the direction of Dr. Eva Feldman use these biofluids to better understand changes in gene expression and the immune system. These biospecimens are used in the laboratory to understand ALS pathogenesis and create models to screen and identify new therapies.

We are also active in ALS clinical trials. We recently completed a safety study of stem cell therapy for the treatment of ALS led by Dr. Eva Feldman. We are active with the Northeast ALS Consortium (NEALS) and have recently participated in studies of retigabine, mexiletine, and tirasemtiv. Our current trials can be found at ClinicalTrials.gov