Amyotrophic lateral sclerosis (ALS) — also known as Lou Gehrig’s Disease — is a disease that affects motor neurons in the brain and the spinal cord. Motor neurons reach from the brain to the spinal cord and affect muscle movement. The ongoing damage from ALS causes motor neurons to die. When this occurs, the brain can no longer start or control muscle movement. This eventually can lead to paralysis.

1. "I just can't understand. I am not sick. My eye is
sharp, yet I was not swinging as of old. I reduced
the weight of my bat from 36 to 33 ounces,
thinking a change might work to my advantage,
but it didn't.”
- Lou Gehrig
This quote captures one of the most challenging aspects of living with
ALS – coping with change. The symptoms of ALS often cause clients
to adjust their routine and roles. The ALS Association offers a
tremendous brochure which highlights some of these changes, and
provides tips for managing them: http://bit.ly/18tWIcs
The ALS Functional Rating Scale-Revised (ALSFSR-R) is a proven tool
that can help healthcare providers to assess for these changes. There
is also a version that clients can use to self-assess and report changes
to their care team: http://bit.ly/11jwOrM
“You have to get knocked down to realize how
people really feel about you...when you have a
wife who has been a tower of strength and
shown more courage than you dreamed
existed – that's the finest I know.”
- Lou Gehrig
“I might have been given a bad break but I've got an awful lot to live for." - Lou Gehrig
The Starting Lineup – Forming your ALS Care Team
If you are living with ALS, it is important to surround yourself with an experienced team of healthcare providers and extenders. This can ensure that you have the information, tools, and resources
you need. Your care team should include a:
Click on the following link to find an ALS Center of Excellence near you: http://bit.ly/1444ne0
The early signs of ALS can be different for each person. However, the ALS Association and the
National Institute of Neurological Disorders and Stroke (NINDS) call out these common early symptoms:
• Twitching
• Cramping
• Stiffness of muscles
• Muscle weakness affecting an arm or a leg
• Slurred and nasal speech
• Difficulty chewing or swallowing
“When the Washington Senators went to Detroit…they heard from
some of the bellhops that Gehrig had fallen down the lobby staircase
on his most recent visit.”
Jonathan Eig
Author of “Luckiest Man – The Life and Death of Lou Gehrig”
In a recent article published in Neurology Review, Dr. Richard Bedlack emphasizes the importance of
noticing subtle changes in daily activities: http://bit.ly/YwA4Mt
Clients may struggle with the following daily activities:
• Writing
• Eating
• Walking (tripping over carpet edges)
• Climbing stairs
• Salivation
• Turning in bed and adjusting clothes
• Dressing
"I decided last Sunday night on this move. I
haven't been a bit of good to the team. It
would not be fair to the boys, to Joe (McCarthy)
or to the public for me to try going on. In fact,
it would not be fair to myself.”
- Lou Gehrig
Diagnosis and treatment are often delayed with ALS. Since there is no single test to diagnose
ALS, it is important to get a comprehensive evaluation. This evaluation is typically led by a
neurologist. Given how serious ALS can be, the ALS Foundation recommends that clients
seek a second opinion if there are any concerns about the accuracy of their initial diagnosis.
Key steps to a diagnosis include:
• Electrodiagnostic tests (body’s electrical activity)
• Blood and urine studies
• Spinal tap
• X-rays (MRI and myelogram)
“There was some wasting of muscles of his left hand as well as
the right. But the most serious observation was the telltale
twitching or tremors of numerous muscle groups.”
Dr. Harold C. Habein – Mayo Clinic
• Muscle and/or nerve biopsy
• Neurological exam
These quotes capture the amazing courage that Lou Gehrig showed as his
condition progressed. We also learn that there are positives that come out of
challenging times. Lou Gehrig’s greatest tool was his bat. Whether you are a
client, family caregiver or healthcare provider, there are many tools that can
help you to fight ALS from the beginning.
Nurse Physical
Therapist Massage/Relaxation
Therapist
Speech
Therapist
Occupational
Therapist Dietician Psychologist and/or
Psychiatrist
Neurologist Experienced
in Treating ALS Respiratory
Therapist
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