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. While there is no cure, there are strategies to both lengthen and improve quality of life. At the University of Michigan’s ALS Clinic, we provide expert diagnostic services, comprehensive treatment and compassionate, supportive care throughout the entire disease course of ALS.

While ALS is the most common motor neuron disease, we also treat all other forms, including:

  • PLS (Primary Lateral Sclerosis), affecting the upper motor neurons in the brain and spinal cord
  • PMA (Primary Muscular Atrophy), affecting the lower motor neurons from the spine to the muscle
  • PBP (Progressive Bulbar Palsy), affecting the speech, swallowing, and breathing areas of the brainstem
  • Kennedy’s Disease, an inherited disease that affects lower motor neurons

We assess ALS with a thorough patient history and neurological examination. The exam includes assessing muscle atrophy, strength and reflexes. We also rule out other diseases that mimic ALS. Diagnostic testing includes MRI and EMG (electromyogram), which localizes the source of the trouble.

There are three treatments available that lengthen life:

  • Medication taken twice a day.
  • Non-invasive ventilation: a therapy involving wearing a mask over the nose to take deep breaths with less effort, using a portable machine. Can be used intermittently.
  • Diet and nutritional therapy, to prevent weight loss, and in some cases, increase weight.

ALS Clinic

We are 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. Within our clinic, we use 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 therapy
  • Nutrition services
  • Social work consultations
  • Genetic counseling

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

We know that some patients are not fully covered by health insurance or have limited insurance and large co-pays. With ALS, there are many assisted devices for patients that may not be available to them due to financial reasons. We have a loaner closet for these patients so everyone, regardless of insurance, can use and benefit from these devices.

Cutting edge research

While treating and diagnosing patients 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 and clinical trials, the University of Michigan is making major contributions to our understanding of ALS and the discovery of new treatment options.

One study in our ALS Clinic involves a 3-pronged design to help us understand the causes and basic biology of ALS.

  • Occupational and lifestyle surveys of ALS patients are providing insight into the role environment plays in the development and progression of ALS.
  • Patient blood samples are collected to investigate the genetics and genetic modifications (epigenetics) which may be involved in ALS. Epigenetics is an important new field of research and we are hopeful that it will aid us in the understanding of the development and cause of ALS.
  • We are collecting skin samples from ALS patients to develop induced pluripotent stem cell lines. These lines will be used in the laboratory to understand ALS pathogenesis and create models to screen and identify new therapies.

In collaboration with the Department of Radiology, we are using a new MRI technology available at the U-M that allows researchers to visualize smaller molecules in the brain that past research has suggested may be important for the cause and progression of ALS. Standard MRI techniques do not aid in the diagnosis of ALS and, in fact, MRI reports of individuals with and without ALS often do not differ significantly. Therefore, this new technique has the potential to provide important insight into brain changes in ALS patients which have previously gone undetected or unmeasured. The goal is to gain insight into previously undiscovered brain changes in ALS patients that may ultimately reduce the time for diagnosis as well as aid in the design of future therapies.

Working with the Department of Physical Medicine and Rehabilitation and our ALS patients, we are exploring brain-computer interfaces (BCIs), which are intended to provide an option for communication for individuals with advanced ALS or other conditions which limit verbal communication. BCIs are currently very slow, with typing rates of about 5 selections per minute. The goal is to make BCIs more practical and user-friendly.

Dr. Eva Feldman is examining the safety of stem cell therapies in ALS patients through a phase II clinical trial that is only offered regionally at U-M. She is also investigating ways to enhance these therapeutic stem cells in order to improve the effectiveness of stem cell therapies.