What is Amyotrophic Lateral Sclerosis (ALS)?
We have all probably seen the social media blitz on the ice bucket challenge. This is a fundraising and awareness campaign for a neurologic disease called ALS or more commonly known as Lou Gehrig’s Disease. We at The Kensington have embraced this phenomenon and have been accepting Ice Bucket Challenges August 18th through the 22nd.
ALS or Amyotrophic Lateral Sclerosis is a neurologic disorder that effects the nerve cells in the brain and spinal cord. These nerves relay the information that our bodies need to function. They tell the muscles how to act so we can walk or reach out for something . As the nerve cells degenerate, they no longer send the messages to the muscles, the muscles then atrophy or become weak from not being used causing difficulties with walking and balance.
While ALS is considered a progressive disease, no two people have the same experience. In some, the progression is slow and there are documented cases of the disease stalling out where the progression of the nerve damage halts and the person shows limited further symptoms. There are clinical trials of new treatments and medications and a drug named Riluzole which slows the progression of the disease once diagnosed. Symptomatic treatment is necessary to alleviate issues as they arise, increasing the quality of life for people living with ALS. Most of the symptoms are Muscular in origin, cramps, fasciculations, stiffness and fatigue these can be assisted many of the same medications utilized for MS and Parkinson’s disease. Management of respiratory complications is also essential in the treatment of this disease, managing secretions and monitoring swallowing ability and the strength of the cough and the gag reflex.
Neurology, primary care and nursing need to work together with the person living with ALS to optimize treatment and be clear that treatment goals and plans are the same across the continuum of care. Management and treatment protocols must be established and initiated early on so that in the event of a progression each part of the team understands what is required and what steps to take to manage the symptoms and always observe the wishes of the ALS patient.
The road for the person living with ALS is not easy, we cannot fully understand what these people experience but we can walk the road together being mindful of each other in understanding and providing strength, love and hope.
“Physical strength is measured by what we carry. Inner strength is measured by what we can bear” -Anonymous