PatientsLikeMe ™

I was born in Los Angeles, the second of six siblings, in a staunchly Roman Catholic family.  My father was a doctor, a general practitioner.  My mother was educated to be a teacher and did some substitute teaching before she married.  After that she was a home mother, though she had many outside interests.

I spent my young adulthood training to be a Jesuit priest and was ordained.  I left the Jesuits in 1979.  Since I lived in San Jose, my options for work were mostly in high tech.  I started in a training and course development department, but spent most of my 25 years in the company as a software development engineer.  During that time I left the Church and all forms of faith.

In 1984 I married my wonderful wife, Ruth.  She had a daughter who was 7 at the time our our marriage.  My daughter asked me to adopt her when she was a teenager.  I did so gladly.

When I retired, we decided on a retirement adventure.  We rented out our home in Los Gatos, CA, next to San Jose.  We chose to live in Portland, Maine.  We moved in in Maine in May of 2006.  We had a wonderful time visiting many places on the U. S. east coast, and spent some time in eastern Canada.

Then in December a Maine neurologist told us he thought I had ALS.  He sent me for a second opinion at Massachusetts General.  While I had bad results on nerve conduction tests and EMGs in Maine and in Boston, the Boston neurologist was slow to diagnose, due to insufficient symptoms.  Tuesday, May 27, 2008, he decided that I had enough symptoms and made the diagnosis.  He does think that my progression is slow.

We returned to our home in Los Gatos, CA in June, 2008.  We sold this house and moved to Vancouver, Washington in fall, 2008

While there were stirrings of faith prior to any mention of ALS, the disease has brought me back to my Christian faith.  The experience of the love and forgiveness of God over the past months has made these months more endurable and filled me with hope that good things will come from the increasingly weakened state I will be in.

While we lived in our home in Los Gatos, California, with the help of my pcp I found a wonderful young neurologist in Los Gatos, Dr. Sharon Drost.  She trained at Stanford and worked at Stanford from some years before going into private practice.  She knows ALS comprehensively.

Now that we are here in Vancouver, I am making use of the ALS clinic under Dr. Kimberly Goslin at Providence Hospital in Portland, Oregon.  My first visit with Dr. Goslin confirmed what I had heard several times, that she is an outstanding doctor and a very nice human being.  I have also had sessions with PT Kathy Cutter, another warm, caring woman who certainly knows ALS.  Vancouver, WA, is just across the Columbia River from Portland.

I now can no longer walk, nor even stand for transfers.  I am in a power chair.  We have a Hoyer lift and a board for transfers.  I am very dependent on my loving wife Ruth and my loving daughter Robyn and her caring husband Mike.  Robyn and Mike live with us to help with my care. 

I am having slight troubles with my arms and hands.  I get cramps and I have lots of fasciculations.  My hands shake when I eat.  My handwriting was never good, but it is more difficult now.  I am thankful for computer keyboards, with which I still have no trouble.

We have found a wonderful Episcopalian community to share our faith with.  Helping there is one of the things that keeps me going.  I have taught a class on prayer, and on two Sundays have been invited to preach.  I am helping the rector start a men's spirituality group and am on the adult education planning committee.

For the moment, I am homebound, but we will complete the purchase of a van to carry me in my power chair in about three days.  This will give me a new freedom.

We recently participated in the ALS Association walk to Defeat ALS in Vancouver.  Our family and friends amazed us with donation total we received.  Some friends travelled from San Jose to walk with us (for me it was a roll) and a friend from Maine who is a recent ALS widower also came.