Written by Larry Kellerman
I am the MSA Coalition support line volunteer for a coalition representing a very rare and devastating disease. I have found being that person who can share resources, advice, a shoulder to cry on and the voice of hope brings people back again and again to share their thoughts and questions. Every call helps me meet the mission my deceased wife and I developed during her last months suffering from multiple system atrophy (MSA), a rare and terminal neurodegenerative disease. “Help others who are on this da#ned journey” was her lament that led to me dedicating my life to be a support for MSA patients and caregivers.
One caller in particular is the reason for this story. I’ll call him Gary but that is not his real name. He first called the call line about 18 months ago and after our first conversation he asked if he could call back if he had any additional questions or just needed to talk. I told him it would be my pleasure to be there for him and put his contact information in my contacts list.
Over these last 18 months we’ve probably talked a dozen times. He’d call when the journey was getting difficult or when he’d see a change in his wife’s condition and needed to have some reassurance. Over those months we became comfortable talking to each other and a couple of times advice I shared helped make a positive difference in his wife’s treatment and condition. During that same period of time I heard in his voice a resolve grow that was not there at first, a resolve to be a positive part of the MSA journey.
Two weeks ago he called and told me how quickly his wife had taken a turn for the worse. She was now unable to hold herself up and leaned to one side, had difficulty eating and was very fatigued. We talked about what that might mean and I shared some advice heard at a recent support group meeting; “If there’s a change for the worse in an MSA patient it’s quite likely to be a urinary tract infection.” He was sure they were giving her antibiotics to prevent a UTI but would check. When the conversation ended I could hear in his voice that worried sound of “could this be the last time a symptom impacts her like this?”
He called four days later and when I took the call I could hear cheerful voices and laughter. He told me he wanted me to hear how crazy it was now that his wife was home and the children were there visiting. He even introduced me to his wife and we got to exchange a few words. Her voice was weak but I could understand everything she said. He got back on the line and said he just wanted to share that family time with me. Talk about feeling humbled as I hung up.
Early Friday evening the phone rang and Gary’s name appeared. I immediately answered and said “Hi.” He said to me “Larry, she passed away today, and we were all here when she did.” He shared some of the information about those last hours with the family and calling the hospice nurse to come out, only to have his MSA wife pass before the nurse arrived. I think at that point I was the more sentimental of the two of us, trying to hold back the tears of “S#*t, another MSA patient taken from us.”
Then he shared something that made my night, week and maybe even my year. We had talked a couple of times during that 18 months about his wife donating her brain. Just days before she passed he called a nearby research center that has a brain bank. Over a few hours they confirmed his wife’s approval of the harvest, contacted the funeral home and pathologist who would complete the harvest and made the process very smooth for Gary and his wife’s donation.
He told me he had asked them how many MSA brains they have in their bank and they said “less than twenty.”
I paused for a short time before words would come out of my mouth. “Gary” I said. “One of those brains is my wife’s. You have donated to the same brain bank that has my wife’s brain.”
One day in the life of a support line volunteer.
Written by Larry Kellerman, MSA Coalition Board of Directors & Support Line Volunteer