HARWICH – It started with a frozen shoulder last summer. When Bill Olivier started seeing doctors about the shoulder, in addition to some recurring back pain, there were MRIs and X-rays taken that stumped the orthopedic specialists. When he started to develop a foot drop, which he described as feeling "like I was walking in clown shoes," more tests were done and a neurologist recommended he be seen at the Mass General Healey Center for ALS.
In October it was clear. Olivier had ALS, or Amyotrophic Lateral Sclerosis, a nervous system disease that weakens muscles and impacts physical function. Often called "Lou Gehrig's disease," the variety of symptoms sometimes means it takes a while to diagnose.
The average life expectancy prognosis of two to five years was grim, but a conversation with Olivier recently revealed his remarkably positive and upbeat outlook. As year one comes to an end, he reflected on his experience with the disease.
"At least I can say that I took it one day at a time, looking for the positive with a lot of good friends and family for support," he said.
When Olivier retired to Cape Cod in 2013 he got his part time "dream job." A golfer who always loved the outdoors, he applied to the Harwich Port Golf Club, where he was a member, and was hired to work in the clubhouse and as a starter. He also worked at The Captains in Brewster. "It was a lot of fun and I got to meet good friends from here and out of state," he said.
He has not been able to work this summer, but he is still part of the Harwich Port Golf Club family. This week the Men's and Women's golf leagues at Harwich Port organized a fundraiser that included ice bucket challenges by Harwich Port Course Superintendent Bob Kingsbury and Course Pro Kevin Eosco to raise money for Olivier's needed home alterations.
"Bill's a friend and past employee and we know there are a lot of financial needs in his future," Kingsbury said. "It was the right thing to do."
"I was very surprised that they wanted to do it," Olivier said. "I feel very appreciative."
Chief among Olivier's family cheerleaders is his wife of 41 years, Karen. "My wife and I have dealt with a lot over the years," he reflected. "Whenever we have gone through a crisis, we came out stronger."
Olivier and his wife have two sons who live outside of Phoenix, Ariz. When the couple went out west to visit them earlier this summer they all attended an Arizona Diamondbacks game. The day was Lou Gehrig’s birthday in early June, when all stadiums around the country honored the Hall of Famer as well as recognizing ALS and those living with the disease. Olivier's gratitude and joy that day was infectious. He recalled remarks from Gehrig's famous farewell speech: "Today I feel like I'm the luckiest man on the face of the earth!"
In addition to having been accepted into a Mass General's Healy Center clinical trial, Olivier takes two FDA approved medications, one orally and another an infusion. Two weeks a month are spent receiving one hour daily infusions at Cape Cod Hospital to help slow the progression of the disease.
So far he has experienced no side effects of the medications, but he sometimes wonders "is it helping?" It's hard to tell day to day, he says. His symptoms started in his legs. "I went from walking oddly to using a cane, then to a walker. Each progression involved falling frequently," he said. He now uses a wheelchair.
Before he retired, Olivier worked as a clinical social worker, providing help to those in need. Now that he is on the receiving end, he says, "the shoe is on the other foot." While he can find it hard to accept help, he now has a better appreciation of both sides and it has "helped me deal with day to day." As a social worker, he recalled learning and working with Elizabeth Kubler Ross's five stages of grief (denial, anger, bargaining, depression, and acceptance) and admits, "on any given day I can experience any and all of them."
While many costs are covered by Medicare, there are other expenses that are not. For example, although his brother helped him modify his home to add a ramp in the back, there is a lot to be done inside to ensure doors are wide enough for wheelchair access. A power wheelchair will soon be needed as will an accessible minivan, among other modifications.
Olivier is grateful to his "terrific team of neurologists and a dozen other professionals," he said. "ALS is what I've got," he said, "but sometimes it is a full time job, with infusions, doctors' appointments and dealing with the insurance bills." His social work skills are coming in handy, he added with a laugh.
He knows that right now there is no cure for ALS, but "the more that we know, the more that funding can be provided" to solve the mystery, he said. "It's shocking," he said, "that in the 80 or 90 years since Lou Gehrig died we are not there yet."
Olivier and his wife are also grateful for several ALS support groups and agencies on Cape Cod, including Compassionate Care ALS in Falmouth and the ALS Association, MA Chapter. Their work with support groups, educational materials and donated equipment has been invaluable, he said. For more information go to www.als.org/massachusetts