Pratt native James Lemon wants to help others battling disease as he deals with his own struggle with Parkinson's.
Just over five years ago, James Lemon of Pratt, now 52, was confined to a wheelchair. He could not walk unassisted, he had trouble feeding himself, his life was a misery due to a rare form of Parkinson’s disease called Probably Progressive Supra-Nuclear Palsy.
“I had been through months of trying to get a diagnosis, evaluated by doctors at KU Medical Center, endured weeks of testing at the Mayo Clinic, and found I was facing a dismal future,” Lemon said. “I was at my lowest point in a waiting room at the Mayo Clinic that she came up to me and comforted me.”
Today, Lemon is still overcome by emotion and the impact of that special moment in a busy misery-filled medical waiting room. He said his goal in life now is to give back to child-cancer survivors and their families because an eight-year-old girl, obviously under some sort of cancer treatment, reached out to him five years ago, showing compassion at a time no one else could seem to get through to him.
“I don’t even know her name,” Lemon said. “She had a scarf over her head because her hair was gone. She just came and sat next to me, grabbed my hand and looked at me with beautiful eyes. We cried together.”
From that low point, Lemon’s life took a turn for the better. His wife Robin, mother Karen Lemon, and extended family members, had always been there for him, supporting him, looking for treatment options and helping him communicate with teams of doctors. And though there was not a standard approved treatment for the rare form of Parkinson’s that he found himself diagnosed with at that clinic in Minnesota, hope was not far down the road in his journey with a disease that had stolen his strength and ability to move.
“I had a great team of physicians here in Pratt who were willing to try anything to help me but nothing was working,” James Lemon said. “I spent a lot of time on the computer with social media, because that was about all I could do at that point, and I ran across a small study done at Stanford using sleep-aid medications to treat a similar form of Parkinson’s that I had.”
Further investigation revealed to Lemon another patient in Europe with the same disease helped by an accidental overdose of sleeping aids.
“I reached out to that family and the daughter of the patient responded,” Lemon said. “It was exactly what I was going through, and that person could now walk, work and live an almost normal life.”
Lemon went to his local team of physicians and convinced his primary caregiver, Dr. James Isaac (recently retired, from Hutchinson) to write him a heavy-duty prescription for Ambiance (an approved sleep-aid medication).
“My balance was off, I tremored, I fell over backwards unexplainably. I couldn’t work, drive, function without help,” Lemon said. “Within three days of taking a big dose of this prescribed sleep aid in the morning, and an additional half-dose at noon, I was able to get up on my own out of the wheelchair. I was more alert, the stiffness was gone, my eye movement was improving. It was a miracle.”
According to Lemon, the sleep-aid medication was able to trick his brain receptors to send out normal movement commands, despite the presence of the Parkinson’s in his nervous system.
“I still have Parkinson’s,” he said. “This treatment has masked the symptoms and given me several more years to enjoy my life to the fullest.”
That miracle took place in Lemon’s life five years ago this past October. Since then he had recovered his ability to walk, so much so that in 2015 he took a pilgrimage journey, on his own, to The Camino de Santiago, the trail of St. James, across Spain and Europe.
“It took me a month, but I walked all 500 miles on my own, around that mountain, along the path that pilgrims have taken for centuries. Going uphill was not as bad as going downhill, but I did it. And it reinforced what I want to do for others with the rest of my life.”
For Lemon, The Camino de Santiago trail was an exclamation point in his life, and brought home to him the realities that those who battle diseases (and their families) suffer.
“There are a lot of support systems in place for those climbing the hills, just like those battling to find a diagnosis, battling to find answers, looking for treatments, but once the disease is beaten back, once you reach the top of the hill, you find yourself all alone to go down the other side.”
Inspired by the unknown little girl who comforted him at the Mayo Clinic, and his experiences on the Trail of St. James, Lemon is working to establish a foundation called Walking with Jimmy to provide support for families of child-cancer survivors.
“We raise money to take these families on a vacation, to send them somewhere where they can be a family again, just spend time together without the extreme financial worries and everyday responsibilities that can get so heavy when a family is fighting a major disease alongside one of their own,” Lemon said.
To date, Lemon and his family have taken two families on Walking With Jimmy excursions. This past year they provided fund for a Nebraska family with a young girl now in remission from cancer to spend a week at a resort in Seattle. Plans are in the works to take another family to Island Adventures Camp Orkila, YMCA, just off the Pacific Coast.
“So many times families as just split apart by this type of battle,” Lemon said. “One parent has to work two or three jobs to provide the financial support, while the other is completely involved with the child and the disease and chasing treatments. Other children get lost in the melee. We have just found that, by providing a simple family vacation, these people can find themselves again. Support after the battle is so important and it is something that made such a difference for me and my family. I just want to give that to others.”
Lemon, currently works for Pratt Community College and Great Western Dining as manager of the Beaver Bites Cafe. He has been gathering donations and fund for his Walking With Jimmy foundation through an account set up with the All Saints Episcopal Church in Pratt. He is working with an attorney to set up a charitable account that is separate from the church, but donations are still accepted through that avenue.
Recently, Lemon and his support-team family provided pictures with Santa and sold handmade Christmas gifts at the Gamma Beta Craft Fair in Pratt to raise funds. Information about donating to his foundation is always available at walkingwithjimmy.org.
“I loved traveling as a child with my family,” Lemon said. “I just want to give back from my experiences, something I loved - traveling, and something I have realized that is of utmost important to those battling disease - the family support system. As that little girl held my hand, I want others to know that God is here, holding the hands of those who need it, through others.”
Donations made to Walking With Jimmy are tax deductible.