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.
View Comments (23)
Omg!! I signed on to PLM exactly because I'm at wits end as to what to do about my bathroom. I'm in the same position as Nola. I've been in a wheelchair for 10 yrs but have progressed over the past 2 yrs where I too can't clear the 6" shower curb. Using the toilet prompts terrible anxiety attacks! Like Nola and others with MS, I also have money problems and hesitate to do this to do reconstruction. I'm so sorry she had to go through the nightmare she did. Her patients and generosity are overwhelming. So glad PLM and Gary and Home Depot were able to help. The new bathroom is beautiful. Kudos to you all and best off luck Nola!!!
Hello
See how one MS patient is thriving and enjoying a better quality of life with the help of this community
I was wondering if you could help us by sharing this on your web page and anyone else that you think would find interest in this? Thank you in advance.
http://www.castingnewlives.com/2014/09/stillpoint-life-inside-zen-community-penny-peyser
This was wonderful, spectacular. I'm so proud to have been a small part of this coming together and remain thankful and overjoyed to call these people my friends.
How wonderful that this story had a happy ending, even if a deferred one! I can sympathize totally with Nola. My Parkinson's Plus has made so many elements of ordinary life into extraordinary challenges. As I type at the lap top, banging and sawing downstairs promises great things in the immediate future: a handicapped-accessible bathroom that will serve me when I can no long handle our house's stairs. That will be soon, it appears. God bless us both, Nora, and all who face challenges and find ways around them!
How awesome! PLM, Home Depot, Gary, Nola and everyone else involved in this movement rock!
I just wanted to offer another resource that maybe able to help some of you! When I was working and deparate for help for my mother a friend suggested I call the county social services for seniors. The nice lady came out and interviewed my Mom and was able to offer to put in a hand rail in our attached garage to help my mom negotiate a couple concrete steps.They came out and installed a steel handrail set into the concrete garage floor. They offered meals on wheels and a gal from Comfort Keepers to come out and help with house cleaning,vacuuming,floor mopping,bed changing,bathroom cleaning. I also found out from them that in order to get social service help when she was released from the hospital,that I need a script written from her G.P. requesting this service. The social service came the next day after the doctor wrote the script and ordered her a walker with tray, a wheel chair and bath seat for her shower and a cane. Her G.P also offered to write a prescription for a handicap tag that I could get from BMV to put in my car since she didn't drive but would convenience her so she didn't have to walk so far in the shopping parking lot. I learned so much from one service reccommending another. I HOPE THIS CAN HELP SOMEONE!
So great to hear there are people helping others. I struggle with LUPUS.. and I find the number one thing i must do is push forward.. and not talk myself into giving up...
This is wonderful people & things like this should be in most area's. such a blessing
So Good to see this.. she's not alone a have been truly blessed to have some one to reach out and help her. .what a blessing !!!
I am a Certified Holistic Practitioner who works with autoimmune disorders,especially with psoriasis, celiac disease and gluten free nutrition.