It’s rare that we’re surprised by the power of connection in the PatientsLikeMe community—we see members connect everyday and transform their lives through the exchange of information. This story extends beyond shared knowledge, though; it displays the powerful bonds of internet friends who offered truly life-changing support from opposite coasts. Below, listen to them tell their amazing story to our community moderators Sarah and Jeanette. Click to learn how Gary helped Nola regain her independence, her ability to clean herself, and most importantly, her dignity.
Nola (6.02x10e23) lives with progressive MS in California. In the past ten years, she’s gone from walking to slightly limping, to using a cane and then a walker. Now, she’s in a wheelchair and cannot use her right arm.
“I had to keep adjusting slowly how I did any little thing. How could I write a check? How could I make something to eat? Or get something to drink? Or just get to the bathroom and back? It’s constant change and you have to accept the change and learn how to adapt and try to still be able to get things done that you want done. You’re going to have do it in some very different ways that might be uncomfortable or absolutely undignified. But you have to do what you have to do.”
As her MS progressed, Nola discovered that the 6-inch lip at the bottom of her shower was an impossible barrier. She could get one leg up over it, but she could no longer pull the other leg in, which prevented her from being able to get into the shower to fully bathe herself.
She hired a contractor to build her a handicap-accessible bathroom, and paid half of the money up front:
“He started the project, but he got ill. He lost his regular job and eventually lost his home. I had paid him ahead of time half of the amount, but then when all of these terrible things happened to him, I went ahead and paid him for the rest of the job, even though he had hardly started. He really needed the money. He’d come every once in a while and do a little work. As he got more ill, it just became impossible for him.
It ended up that I still didn’t have a bathroom and I had lost quite a bit of money. I did not have the money to hire somebody else to do this. I wanted to be able to stay in my home, but it was getting to the point where I couldn’t even take care of personal hygiene.”
Nola went 6 years without a shower, until:
“Members of PatientsLikeMe that are in this one particular group with me, we’ve all become close friends over about maybe the past 5 or 6 years. We’ve always relied on each other for moral support. It was my place to complain a little bit. Everyone knew the story and they’d all been rooting for me and hoping that I could get this bathroom done. It had been over a period of 2 years of waiting and waiting.
Gary, here, who works at a Home Deport, 3,000 miles away, on the other side of the country, got this idea. Home Depot sometimes does these charity projects. He suggested that I find out if they might help me.”
Gary (1955chevy) did indeed help Nola from his home in North Carolina. Check out the photos on Pinterest below!
We told Nola we’d share some tips and tricks she learned from her PatientsLikeMe community for others to learn from. With a number of different products and limited resources, it’s hard to know what to invest in. Visit this thread to see some of the suggestions Nola has for you and to add your own.
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