"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 TeamIf 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 EigAuthor 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 PhysicalTherapist Massage/Relaxation

Therapist

SpeechTherapist

OccupationalTherapist Dietician Psychologist and/or

Psychiatrist

Neurologist Experiencedin Treating ALS Respiratory

Therapist

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