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Living with ALS: The Women's Voice

WHO AM I, REALLY?
Reflections by Paula Goldstein
June 2011

Before ALS, I had control over my life.  I attended all of my children’s activities, was able to run the household as I wanted to.  I was able to walk Valley Forge Park every weekend and plant my gardens every year. I had a successful career.  My husband and I had no worries.

As my ALS has progressed, the first thing I have learned is that I don’t have control over anything except my attitude. I cannot change my body nor can I do what I’ve done in the past.  I have come to terms with this but at the same time I fight ALS as much as I can by compensating on how I do things.  I have lost the use of my hands (fingers), so I use my knuckles, fists or elbows.  It’s amazing how creative one can be.

My priorities have changed and I know that they are where they should be.  ALS taught me this.  God, my family and my friends are the most important part of my life.  I spend as much time as I can with them.  I have become a better listener and my Type A personality has gone away.  I now know what it means to relax and I really enjoy it.  I’ve reconnected with friends from my past and that feels good.  I no longer obsess about the house, the yard or anything materialistic.  I have continued to work.  When people would ask me when I am going to quit, I answer “not today”.  Well today has come.  I left my job on June 3^rd.

I’ve learned to ask for help.  I was recently on a long flight by myself to meet my husband.  I was sitting next to an elderly gentleman and when the food came I realized I couldn’t open the containers.  I asked the gentleman if he could help me as I have ALS and little use of my hands.  He took care of me the entire trip.  I explained to him what ALS is as he didn’t know.  I take every opportunity to do so, so that more people can be educated.

So “Who am I really? I am a person with ALS and that changed my life in some very positive ways.

Paula Goldstein is now 57 years old; she and her husband have three children in their 20’s.  She was diagnosed  one and a half years ago, but believes she has had ALS for over three years.