The full infographic can be viewed by clicking the link below or the image to the right and below is his accompanying blog post.
As we enter May — which is both National ALS Month and the beginning of baseball season — my mind goes immediately to the “Iron Horse,” Lou Gehrig. Mr. Gehrig is best known for his Hall of Fame baseball career and amazing consecutive game streak. Even though Mr. Gehrig’s battle with ALS occurred in the 1930s, we have an opportunity to learn from his personal testimonials. We also have an opportunity to leverage the important work that is being done today by researchers, people living with ALS, Advocacy organizations and healthcare providers.
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.
Recognizing ALS Symptoms: From the Beginning
“I just can’t understand. I am not sick. The stomach complaint which was revealed last year in three separate examinations I underwent has been cleared up. 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
The quote above highlights the vague, complex nature of ALS symptoms. A 2012 study calls out additional barriers that often delay diagnosis:
“Common patient barriers included access to ALS-specific resources…symptom recognition…timing of diagnosis…difficulty accepting diagnosis…and care team communication.”
To further validate the challenge of ALS symptom recognition, we visited a number of client discussion boards. One forum entitled, “Do I have ALS?” really brings this barrier to life:
“Severe breathing problems, twitching, atrophy, no diagnosis – please help!”
“It is probably stress-related, but I have to ask?”
“Right and left leg feels weird.”
“Any possible way this is not ALS?”
“ALS or cervical stenosis?”
The early signs of ALS can be different for each person. However, theALS Association and the National Institute of Neurological Disorders and Stroke (NINDS) call out the common early symptoms listed below.
Early Symptoms of ALS.
· Stiffness of muscles
· Muscle weakness affecting an arm or a leg
· Slurred and nasal speech
· Difficulty chewing
*As ALS progresses, other symptoms can include: difficulty with breathing and swallowing
Changes in Daily Activities
“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. 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. Clients may struggle with the following daily activities:
· Walking (Tripping over carpet edges)
· Climbing stairs
· Turning in bed and adjusting clothes
Getting an Early, Accurate Diagnosis
“When I evaluated Mr. Gehrig, 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
As we have noted earlier, 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. The El Escorial World Federation of Neurology has published the following criteria for diagnosis to guide healthcare providers who diagnose ALS.
The ALS Association offers a directory of ALS Centers for Excellence where teams of ALS experts work together under one roof to diagnose and treat ALS.
Coping with Change
“I decided last Sunday night on this move. I haven’t been a bit of good to the team since the season started. It would not be fair to the boys, to Joe (McCarthy) or to the baseball public for me to try going on. In fact, it would not be fair to myself.” -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, roles, and plans for the future. The ALS Association offers a tremendous brochure that validates these changes, and offers tips for managing them.
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:
· Neurologist who has experience treating ALS
· Registered Nurse
· Physical therapist
· Occupational therapist
· Speech Therapist
· Respiratory therapist
· Social Worker
· Psychologist and/or Psychiatrist
· Massage/Relaxation Therapist
Fighting back with Advocacy, Support and Education
“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
Hearing the diagnosis of ALS is very difficult for clients, family caregivers, and friends. The good news is that there are things you can do to fight back. The quote above captures the importance of support from family and friends. We also learn that there are positives that come out of challenging times.
Fighting ALS Action Plan
“I might have been given a bad break, but I’ve got an awful lot to live for.” -Lou Gehrig
The quote above captures the amazing courage that Lou Gehrig showed as his condition progressed. Lou Gehrig’s greatest tool was his bat. Whether you are a client, family caregiver or healthcare provider, the tools below can help you to fight ALS from the beginning.
- Learn about ALS and how to manage symptoms
- About ALS: http://bit.ly/YFCtHc
- Coping with Emotions and Change: http://bit.ly/18tWIcs
Fighting ALS Toolkit – For Healthcare Providers
Clinical Criteria for Diagnosis: http://bit.ly/12eoark
AAN Practice Parameter Updated Guideline on ALS Treatment and Management: http://bit.ly/13ibb96
The ALS Functional Rating Scale-Revised (ALSFSR-R): http://bit.ly/11jwOrM
Symptoms of ALS: http://bit.ly/10buHmH
The Self-administered ALS Functional Rating Scale-Revised (ALSFSR-R): http://bit.ly/ZHZG6x
Living a Fuller Life with ALS Brochure: http://bit.ly/ZPU5yL
Living with ALS Manuals: http://bit.ly/12VI7kf
ALS Newly Diagnosed webpage: http://bit.ly/15pSHqP
Resources for Military Veterans: http://bit.ly/10GHKZ5
Assistive Devices: http://bit.ly/10qX4ig
Home Care Guide: http://bit.ly/ZI02dq
ALS Association Video Series: http://bit.ly/16ZhD87
For more information, please review our Amyotrophic Lateral Sclerosis (ALS) Resources.