(Bob Finch was a beloved musician and friend to many. Diagnosed in his early-30’s, he was completely disabled by MS by the time he was in his 50’s leaving only head movement and speech. Lacking the resources he needed to remain independent, he spent the last 15 years of his life in a nursing home before finally succumbing to complications of the disease at the age of 72. This is an excerpt of a memorial written for Bob’s funeral by Dave Layton.)
“…..in 2011, Greg Fier met Bob after talking with JC Monroe at Brent Tinderholt’s Halloween party. At the party, Greg was telling a group of folks about his new assistive technology. JC asked if you can Facebook and email with that. Greg replied, “Yeah and lots more.”
JC: “We’ve got to get one of those for Bob.”
Greg: “Bob who?”
When JC explained who Bob was and his situation, Greg knew he could help.
Soon, Greg and I met with Bob. Bob mentioned how he could no longer operate his computer and how he had to ask the staff to turn on his lights, change channels on TV, or turn up his stereo and change CDs whenever he wanted to listen to music or watch the Cubs.
When we left the room, Greg said adamantly, “He doesn’t need to live like that!” I looked at my friend who seemed destined to a fate similar to Bob’s and asked, “What could be different?”
“A lot! You saw that computer that Jon Turnquist from St. Ambrose installed at my house to turn on TV and lights etc. with just a sip and puff switch. He’d do that for Bob too. Plus, if Bob had a new computer, there’s new technology that he can use to run it with just voice and head movements. Then, with the internet and websites like Pandora, he could listen to as much music as he wants. When I needed money for home modifications, fundraisers were held and people pitched in enough for a ramp, widened doorways, and a roll-in shower in a short time. They’d do the same for Bob and he doesn’t need nearly as much for what I’ve been talking about. I bet we could get enough for his new computer by Christmas.”
I soon learned that when Greg puts his mind to something, it tends to happen.
First he got Jon Turnquist, the head of the occupational therapy department at St. Ambrose University, to provide Bob with an environmental control unit (ECU) computer. Now he could turn on his fan and lights and operate his TV and stereo by himself. These seemingly small bits of autonomy are huge to someone who’s lost them.
Next we established the Bob’s Assistive Technology (BAT) Fund to raise some money to buy a laptop computer, hands-free mouse, and voice activation software - and people stepped up - just like Greg said they would. We did raise enough money for his new computer by Christmas, but I drug my heels and didn’t get it purchased until January. Money continued coming in, allowing us to pay for his internet (They didn’t have wi-fi at Wincrest yet.) and eventually we had enough donations to get him a new HD TV as well. He had a good view of the Cubs winning the World series!
Enough was donated to the fund that we were even able to help a couple other people too. A lady in Morrison who had recently been hospitalized with advanced MS received a laptop with the same hands-free technology. The same for A 22-year-old man in Clinton. A young lady in Maquoketa was provided with wifi to her rural home so she could finish her final semester of high school in spite of a recent leg amputation due to bone cancer.* Most recently we bought Bob an Amazon Echo dot , but we never really got it working for Bob - his health was deteriorating.
So here’s the project. There’s an ongoing need for funding to help people in this area with MS maintain independence and quality of life. The local MS support group has been very successful at raising money that went to regional and national MS societies and foundations, which is important for research and major campaigns, but there never has been an official outlet for some of that money to be channeled locally. The BAT fund was really only a credit union account and Greg and I have been concerned about making it too active because of tax liabilities.
Now we are going to change that. With the blessing of Bob’s sister. Kathy. the BAT fund will soon become the Bob Finch Memorial Fund - complete with 501 (C)(3) non-profit status and all that entails - such as financial statements, board of directors, meeting notes. bylaws and this mission:
“To provide resources for people in our community who are affected by MS to help them maintain independence and quality of life.”
Now we’ll be able to raise enough money to provide someone with large home modifications like a new ramp, accessible bathroom, or a power chair or small projects like a handrails and computers. Plus people who donate will be able to write their donations off from taxes as charitable deductions - just like all official non-profits, except now, all of the Finch Fund money will stay local….:”
* (BTW, the following May, donning a full-length prosthetic leg under her gown, that incredible young lady walked across the stage to receive her diploma! We like to think we played a small roll, but it was all due to her grit, determination, and bravery.)