Our Journey with ALS

Phyl transitioned to the spiritual realm on June 15, 2020, after dealing with the symptoms of ALS for about 5 years.  After two years of trying to figure out what was causing the symptoms of weakened muscles, she was diagnosed on March 15, 2017.  For the past three years, Phyl asked me to keep her friends and family informed about the progress of her disease and our efforts to “live well with ALS” as she called it.  The following is a record of my email messages and blog posts which were password protected up until now (Phyl didn’t want to read these posts).  I’ve  added some photographs.  The links below provide a record of her courage and her resilience in dealing with what is always a terminal illness.

Emails to Family and Friends

April 12, 2017 – The first message to friends and family

May 1, 2017 – Update for the family with a bit of good news

June 5, 2017 – One month later

June 19, 2017 – Our best day in months

July 24, 2017 –One day at a time

August 23, 2017 – Phyl starts a clinical drug trial 

November 13, 2017 – And more adventures

December 14, 2017 – The holidays approach

February 8, 2018 – Headed for Costa Rica

February 28, 2018 – The news from Costa Rica

April 15, 2018 – We are feeling pretty good

May 14, 2018 – The fundraiser, golf cart and more

May 23, 2018 – Phyl speaks about ALS

July 3, 2018 – After the beach

October 15, 2018 – We need your help

December 20, 2018 – The holidays approach again

February 3, 2019 – Back from Aruba

April 12, 2019 – Keep smiling and live life

April 12, 2019 – Caregiver suffering 

May 21, 2019 – Phyl’s speech from the ALS Walk

August 14, 2019 – A caregiver’s perspective (from John)

August 22, 2019 – An update from the beach

November 25, 2019 – A Thanksgiving message from Phyl and more

January 1, 2020 – A New Year’s Day request

January 7, 2020 – Communicating with Phyl from now on…

February 27, 2020 – An update from Florida

April 17, 2020 – A day in the life of Phyl (and John)

May 11, 2020 – And hospice begins

June 12, 2020 – Phyl is not doing well

June 14, 2020 – Not much time left

June 16, 2020 – The letter I never wanted to write

June 20, 2020 – The Obituary


And one of my favorite videos showing Phyl over the past few years…..

Afterwards…..

June 28, 2020 – The first two weeks

July 4, 2020 – Navigating Transitions

August 15, 2020 – After Two Months

August 19, 2020 – Change in Plans for the Walk-a-Thon


Important dates;

  • Fall 2015 – symptoms appear (trouble breathing while running)
  • Fall 2016 – foot drop and weakness in left hand
  • March 15, 2017 – first diagnosis by neurologist
  • August 28, 2017 – began Amylyx trial at UMass Medical Center
  • February 2019 – Trilogy used over night
  • April 2019 – PEG tube for meds
  • July 2019 – first used power wheelchair regularly
  • October 2019 – Trilogy used part time during the day
  • November 2019 – Trilogy used 24/7 except for meals
  • May 8, 2020 – stopped meals
  • June 15, 2020 – Phyl leaves us

More

Spring 2020 – Phyl’s experience with Amylyx (pdf of article)

May 22, 2020 – The car parade for Phyl and Sue

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