To the Editor: ALS on MDI 

To the Editor: 

I live in Seal Cove. My family owns a boatyard, Redfern Boat, in Tremont, and I have amyotrophic lateral sclerosis (ALS). I have what’s called Bulbar Onset ALS (symptoms first occur in the face or neck). I cannot speak or swallow.  

ALS, also known as Lou Gehrig’s disease, attacks the motor neurons, the neurons you use in voluntary movements, including breathing, eating and moving about. Most people with Bulbar Onset ALS die of respiratory failure because their diaphragm gets incredibly weak. I’ve lost 56 pounds of mostly muscle. 

There is no effective treatment or cure for ALS and that’s why I want to bring awareness to those affected by this horrible disease. You lose your strength in all ways, eventually becoming paralyzed, and you lose your ability to breathe.  

Several people on Mount Desert Island have died of ALS. There was a cluster of cases here.  

I’m heartbroken about leaving my husband Carlton, our six children and six grandchildren before I’m ready to. People have been incredibly supportive. I get hugs everywhere I go, and people are patient with my inability to speak.  

There needs to be a tidal wave of awareness to enable research for effective treatments. I would very much like to live longer. I was incredibly healthy my whole life.

Kathryn Walsh Johnson 

Seal Cove 

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