To be whole again, the desire that sometimes overwhelms chair-bound Mandy Painter, fuels the Realtor each day through walking lessons during physical therapy and it's also what could see her through a cutting-edge program in Boston, where world-class neurologists can reawaken her cerebellum and see the mother of three to her feet again.
Systemic auto-antibodies began searching Mandy’s body for cancer cells back as early as 2008 — the defensive antibodies ultimately attacked proteins in her cerebellum that resembled the target cells in the tumor that was later discovered in her right breast.
“Now, everything that I want to do, I have to depend on someone else to do it and it breaks my heart to have to do that,” says Mandy. “Sometimes, I do sit around and feel sorry for myself. But I have to look at things around me and for the opportunities to come up. If I don’t push ahead, I won’t get anywhere.”
Based on what her doctors told her, she has literally been making baby steps as physical therapists work with her to retrain muscles that had regressed in movement memory to their beginnings, according to Mandy. The physical therapy she’s been doing has reinvigorated her limbs with ginger movements, but she says it hasn’t sparked her cerebellum’s full drive.
“Hopefully, in going to Massachusetts, they’ll be able to do whatever needs to be done to the cerebellum to make it work properly.
“At one time, I couldn’t even bathe, at all, and (caretaker, ex-husband) Phil would have to bathe me, completely,” she says. “And then I got to where I could bathe a little bit and Phil would wash my hair. And then finally, I got to where I could wash my hair. But I still have to sit on a seat while I wash my hair. So it’s taken me a year to bathe on my own.”
If a representative from Dr. Jeremy Schmahmann’s office beckoned her to Boston today, it would be bittersweet news for Mandy and Phil Painter. Phil quit his job as Mandy wove in and out of some of Florida’s best hospitals, where she had to be placed on life support 10 times and resuscitated at least 14 times during her hospital stays.
But Mandy has made progress, and it prompts the pair to attempt the possibly quarter-year program in Boston.
Time in Schmahmann’s Ataxia Unit, with access to treatments that would prompt neuralgic studies, could completely cure the paraneoplastic syndrome that has muted Mandy’s cerebellum in addition to the half-a-dozen other neuralgic and neurological disorders that she’s endured.
“All research on the paraneoplastic syndrome indicates that it happens to 50 percent of all cancer patients,” says Phil. “I think as they also do studies in looking at the paraneoplastic syndrome and the anti-RI protein. There is a chance, from what I research, some people who are having cancer may not be dying from the actual cancer. It may be the paraneoplastic syndrome, like she has gotten. I’m not a medical expert, but there’s got to be a correlation there because of what I saw it do to her body.”
Phil saw the horrors, he says. He remembers receiving news of Mandy’s dire situation via fax in December 2010 and he recalls feeling as if the entire hospital descended upon Mandy’s room during a code-blue call.
“He lost his job because he wanted to come be with me,” says Mandy. “They told him I was going to basically be a vegetable and die.”
Not only did Phil lose his job as he opted to care for Mandy — he divorced Mandy so she could get the care she needed.
“I lost my job with the government and had to resign due to excess absences, which was due to taking care of Mandy in March 2011,” says Phil. “The payments were tough, but we were able to keep the continuation of coverage, which would last 18 months for me and Mandy. But at the end of the period, she would be left without insurance. So we filed for a divorce after 18 months ran out so that would give her 18 more months. If she stayed disabled after that, then she’d get Medicare. So right now we do have Blue Cross and Medicare.”
With Mandy edging closer to some semblance of independence, Phil says he’s close to returning to the workforce. But the math — which involves airfare, lodging in to Boston, transit between outpatient facilities and treatment — hasn’t added up so far.
“I'll be honest with you. It’s been a rough road that I’ve been glad to be on,” says Phil. “Until probably July of last year, I spent every effort to make sure she lived. From where she was to now. Of course, she’s depressed, but we’ve made progress.”
The reason the pair has made it this far is because they’ve had a lot of prayers from friends and God has been looking, says Mandy. They’ve had donations from several different organizations, such as the Methodist church and the Board of Realtors, but they need the entire community to help Mandy take her next step.
“So now it’s time to go on to the next step, which will hopefully be a big baby step in Boston,” says Mandy. “If it’s a small step, then hopefully it is the one before our final step. I really need to fight. But without the support of the community, I can’t get to Massachusetts without the help of others, because I’ll have to be an outpatient and I’ll have to travel back and forth between the hospital and the appointments. I really need their help.”
How to Help
An account has been opened at Commercial Banking Company in Valdosta: The Amanda C. Painter Rare Disease Assistance Fund, Commercial Banking Company in Valdosta, at either 1215 Baytree Road or 3462 North Valdosta Road.