GREENFIELD — Dave Barkes spent years as a nurse in the intensive care units of Wishard Hospital and Community Hospital North, helping extremely ill patients with their every need.
Diagnosed with amyotrophic lateral sclerosis — known better as ALS or Lou Gehrig’s Disease — in October, Barkes, 58, of Greenfield, has struggled to reconcile the fact that as the nervous system disease progresses, he will have to accept the kind of help he gave others for so many years.
Already, friends and family have taken up the charge, saying it’s the least they can do to support a man who built a life around reaching out to those in need. That support has come in many forms; from meals delivered by church family to donations aimed at keeping Barkes connected to the community he loves.
A community-wide effort to raise money for a specialized wheelchair-accessible van has been a major factor in bolstering Barkes’ spirits, he said; a friend, Mike Hurst, cajoled Barkes into allowing him to create an online fundraising page for the van and a Florida vacation for Barkes’ family — wife Pam and their four children, who range in age from 14-23. Donors from around the world have given the husband and father of four around $25,000 so far — nearly half the campaign goal — in just two weeks.
Hurst said when he noticed Barkes getting more ill, he felt it was important to spend more time with him and help him and his family. Sharing Barkes’ story has helped accomplish those goals.
Through the fundraiser, Barkes has heard encouraging messages from friends he hadn’t seen in decades and received notes from former coworkers at the hospitals where he’s worked through the years.
Doctors have told Barkes his disease is fast-progressing; they gave him six to 24 months to live. Barkes passed the six-month mark Sunday. Though his speech is slower than it used to be, and he struggles with some activities as his muscles degenerate, he has tried to keep in good spirits.
It’s meant making some adjustments. Until last year, he was able to walk and travel. Now, a power wheelchair helps him get around the house, which has ramps installed.
Finding ways to venture outside his house more easily is the next priority; Barkes hopes to be able to purchase a 2015 Dodge conversion van, about $41,000, so he can travel to doctor’s appointments and his children’s events. Band concerts and church activities have always kept the family going, and Barkes doesn’t want his disease to rob the family of sharing those experiences.
Barkes initially resisted the idea of the fundraiser, he said, because it’s hard for him to accept help from others when he’s used to providing for himself and his family. He left his nursing job in 2015 as his disease progressed, but the mentality of looking out for others first stayed with him.
When helping others no longer came so easily, Barkes began to withdraw — a change Hurst noticed.
His once active friend stayed at home, doing crossword puzzles and showing little interest in getting out. Hurst set out to make sure Barkes knew people cared about him.
And that meant telling Barkes’ story — online and to anyone who would listen.
“My friend is persistent,” Barkes joked.
It’s a trait he quickly came to appreciate.
“It has perked up my spirits to know there’s so much support and hearing from people I haven’t heard from in years,” Barkes said.
The online fundraiser, found at helpdavebarkes.com, has drawn the attention of friends and strangers alike. And people have donated not just money but funded ways for the family to spend time together.
Someone Barkes knew donated a week at his timeshare in Orlando. Then, a stranger pledged to pay for a three-night stay at any beachside Marriott hotel; the woman who donated said a loved one suffered from ALS, and now she tries to help others affected by the disease, Barkes said.
“I can’t believe it,” he said. “People have been so generous.”
He’s quick to acknowledge the generosity didn’t begin with the webpage, however. He and his wife have hosted a small church study group at their house for about 10 years, and after his diagnosis, members of that group have taken turns bringing the family home-cooked meals twice a week. It’s a huge help, since Barkes can no longer work, and his wife is busy with her in-home daycare, he said.
She’s had to focus on the business, since Barkes had to step away from his nursing career, she said. She still remembers his last day of work — March 15, 2015 — because of how hard it was for him.
“He misses being able to help people,” she said.
It hasn’t been easy to stay positive after the ALS diagnosis, Pam Barkes said. Their four children, especially the youngest two, ages 14 and 16, struggle witnessing their dad unable to do things he once did with ease.
“It’s a crucial time in their lives, as they’re teenage boys, so it’s rough for them,” she said.
However, their church family from Brandywine Christian Church and their faith have provided them valuable emotional support, Pam Barkes said. Dave Barkes spends time reading a daily devotional and praying, he said.
“With our faith, there’s hope,” Pam Barkes said. “It helps him, and it helps me.”
What is ALS?
Amyotrophic lateral sclerosis, or ALS, is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. As the terminal disease progresses, the brain loses the ability to initiate and control movement. Patients in later stages of the disease are often fully paralyzed.
Source: The ALS Association, alsa.org
An estimated 6,000 people — or 15 each day — in the U.S. are diagnosed with ALS every year. ALS patients usually range from 40 to 70, with 55 being the average age of diagnosis.
Source: The ALS Association, alsa.org
Friends and family members of Dave Barkes, a 58-year-old husband and father of four from Greenfield who is battling ALS, have started a fundraiser for his expenses.
If they reach their $50,000 goal, they plan to purchase a wheelchair-accessible van for Barkes and send the family on a vacation to Florida.
To donate, visit helpdavebarkes.com.