So much of what Hadley puts out speaks exactly to the issues and frustrations I’m going through right now.
Jeff Kuehn lives on a small hobby farm in rural Minnesota. He worked as a process engineer at a plastic factory for more than 20 years. Diagnosed with retinitis pigmentosa (RP) at the age of 12, he started noticing the impact of progressive vision loss in the year 2000 and ultimately chose to switch gears. "When you’re dealing with molten plastic with temperatures up to 1,000 degrees, it gets a little hairy when you can’t see precisely anymore."
He and his wife decided to become licensed foster parents at that time, something they did for more than 17 years. Then after he went through what he describes as a “really bad bout of COVID," landing him in the hospital for several days, Jeff’s vision degraded significantly.
He contacted Minnesota State Services for the Blind and asked for help to learn how to get around more easily and get the most out of the tech tools he knew could help him. Someone from the state came to his house and helped quite a bit. They also introduced him to Hadley.
"To be honest, Hadley is my go-to website ever since. In the evening, I sit down and try to do a few workshops or listen to a podcast or two. It’s just been great. So much of what Hadley puts out speaks exactly to the issues and frustrations I’m going through right now."
"I go back to and review the tech workshops again and again. I don’t need to learn everything right away. Instead, I figure it out bit by bit."
Jeff’s grandson also has RP. And while Jeff is a dedicated iPhone user, his grandson has an Android. "What’s great is that Hadley has workshops on both Androids and iPhones. So I could show my grandson some of the features that will be helpful on his phone, too."
The Hadley Presents podcast is a favorite of Jeff's. Like many, Jeff at times struggles with feelings of shame—as if his disability means he’s "not good enough." The podcast directly addresses these topics and suggests how to cope with and manage through these difficult feelings. As Jeff lives surrounded by family, the episode on family dynamics was especially helpful to him. "I listened to it and then had a couple family members listen to it with me. We played it over a couple of times. It was so helpful to everyone."
Jeff participates in Hadley’s Peer-to-Peer program and was matched with another Hadley member, Jack. "Boy, that is awesome! Jack and I just talk about what we’re facing, how we’re dealing with issues, and just help each other out. We’re just a couple of guys talking about things we enjoy, like fishing. And we point out things that we’ve found to be helpful. For instance, Jack introduced me to a talking tape measure, and I told him about a great book I read called "White Cane Fishing."
Connecting with others facing vision loss has proven so helpful to Jeff that he asked about local low vision support groups. As he lives in a rural community, unfortunately, there aren’t any groups nearby. "But now Hadley taught me how to use Zoom. So, I am going to try joining a group online."
Looking back, Jeff reflects: "The thing that really amazes me is when I first was diagnosed with RP, one of the doctors told me there was nothing they can do. Just go home and go blind. And I’m going to go blind kicking and screaming and fighting the whole way. That’s what I’ve said all my life." He actively follows research on his eye disease and has even participated in treatment offered out of the country. Jeff also advocates for others by talking about Hadley throughout his community and asking his ophthalmologist to refer. "Everyone with low vision needs to know about Hadley," Jeff exclaims.