Nola’s new bathroom

Posted September 11th, 2014 by

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.

Share this post on twitter and help spread the word for multiple sclerosis.


23 Comments

  1. 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!!!

  2. 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

  3. 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.

  4. 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!

  5. How awesome! PLM, Home Depot, Gary, Nola and everyone else involved in this movement rock!

  6. 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!

  7. 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…

  8. This is wonderful people & things like this should be in most area’s. such a blessing

  9. 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 !!!

  10. I am a Certified Holistic Practitioner who works with autoimmune disorders,especially with psoriasis, celiac disease and gluten free nutrition.

  11. This is such a wonderful story to read, I have too many conditions to list but I am lucky enough to have a wonderful family who support me through everything.

    Well done to the person who reached out from so far away to help!

  12. What a beautiful story, G-d does do miracles.

  13. My late wife had Friedreich’s Ataxia- a condition very similar to yours.

  14. Have any of you considered a stem cell transplant for MS.
    A year ago I had my transplant done for CIDP , it is a sister of MS .
    Dr Burt is at NWM hospital in Chicago and does transplants using your own stem cells from your bone marrow and is doing this fir many auto immune diseases.
    I am totally in remission and now out of wheelchair and walking !
    Let me know if you want more info .
    There is a group on FB called Dr Burt’s Stem Cell Group . Look it up or check out his iTunes videos .
    The success rate is very good and Chicago is the only place in the US that this is done .
    I want everyone to have a wonderful chance at a new life

  15. Brenda ,I have had what you have been diagnoiced with cidp. I asked the Doctor from uheath at the Miami hospital and he told me that stem cell didn’t help. I am I wheelchair and a walker and would like to get better

  16. look above

  17. I have CFIDS.I have one tub w a showerpped. in. it. It is difficult to get my leg over the tub at times to take a shower. Someone had told me in the past that you can get a walk in shower built for little or no cost if youre handicad. Has anyone heard of this. Beth R

  18. Sharing your stories are deeply appreciated and heart warming. We see how others have it worse than I do, currently. Reaching out to one another is very helpful. I am thrilled Nola got the needed help for her bathroom. Patients Like Me is a wonderful website and I have only been a member for a short time. Thanks to everyone. Yanny

  19. This is a truly wonderful story about people helping other people. Our world would be a much better place if more of this was going on. Thank-you PLM for providing a format that can facilitate such a beautiful, caring opportunity. marcia_holman

  20. That’s a wonderful, heartwarming story! We are all in this together, and it’s great to see what can come of a connection between two would – be strangers, because of kindness and the will to help.
    I am losing my home in less than a month – and I just found out that the closing bonus I MAY get, is not even enough for first and last.
    I am going to share the link to the fundraiser my mom started.
    I know that I was always there to help, when I could – I hope someday I will have the chance to again!!

  21. I could feel the love in this wonderful story, well done to all the donors. I have CIDP and have been told by my consultant that stem cell surgery doesn’t help. I am on a balanced mixture of Tramadol and Pregabalin, it seems to keep most of the pain away. I also have IVIG every three months which also helps a lot.

  22. I am so happy to hear about great outcomes like yours. I have similar issues with my shower, although I’m extremely blessed with a wonderful aide, and an unbelievable mother. In the back of my head though, I always worry about not having my mom around. Besides the fact that she is so supportive and I love her, I worry about being alone and having these issues.

    It’s such a relief to know there are people out there who will help, and you’ve given me/everyone ideas for what to do.

    I just updated my blog to give and get some ideas about tools and technology that can help us MYERS get by. Check it out!
    ladydisability.wordpress.com

  23. After 45+ years of MS and still on my feet (just), I feel really lucky. Reading these accounts is so inspiring when we feel we are so often left “to get on with it”. Can’t walk far now but hubby and I use a tandem. Great exercise outdoors. My dear Dad always used to say “folk don’t get enough fresh air”….thanks Dad, hope you are watching.

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