Last updated: February 17. 2014 12:47PM - 2570 Views
By Mary Therese Biebel mbiebel@civitasmedia.com

Erin Boote of Wilkes-Barre hugs her granddaughter, Ari Boote. At right are Boote's daughter-in-law, Erica Boote, and son, Bryan Boote, of Kingston.
Erin Boote of Wilkes-Barre hugs her granddaughter, Ari Boote. At right are Boote's daughter-in-law, Erica Boote, and son, Bryan Boote, of Kingston.
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To learn more about Erin Boote’s fight against Central Pain Syndrome, you can log onto facebook.com and then look for “Fighting CPS with Toby Hannon Boote.” (Toby is a nickname that dates back to Boote’s childhood.)

If you don’t have computer access, Boote will send you information on CPS if you write to her at 84 Amherst St., Wilkes-Barre PA 18702.

It started with a simple Saturday-morning shower.

Standing in the stream of water, Erin Boote decided to turn off the faucet. Only she couldn’t. She willed her hands to move, and they didn’t. The next thing she knew, the Wilkes-Barre woman had fallen to the floor.

And the water continued to run.

“It ran for two days,” Boote said, recalling she lay on the floor, heard church bells signal Sunday morning, and heard her phone ring several times but couldn’t move to answer it.

She was alone at home because her daughter, Hayley, was spending the weekend with her father. It wasn’t until Monday, when Boote’s sister, Cindy Hannon, who was bringing Hayley home from elementary school, summoned police, who broke into Boote’s apartment.

It turned out Boote suffered a cerebral hemorrhage that day in 2009. Already a survivor of ovarian cancer and open-heart surgery, she subsequently suffered two strokes in 2010 and another last July.

And in a way, her waterfall of health problems seems as difficult to control as those shower faucets once were.

“I go to bed at night in pain, and I wake up in the morning with pain,” said Boote, 51, who was told by a neurologist in October that she has Central Pain Syndrome. “It’s like you feel the fires of hell, and you feel intense cold and then, you know it’s coming, you feel as if someone took all the pins from a pin cushion and is sticking them into you.”

“Sometimes it even hurts to smile. I can’t laugh with my granddaughter. I can’t run after her or pick her up,” said Boote, who nevertheless enjoys visits with little Ari Boote, who is going on 2 and lives in Kingston with her parents.

Suffering from a lack of mobility due to the pain, Boote recently resigned her job as a paraprofessional working with autistic and emotional-needs children in the Wilkes-Barre Area School District.

Giving up her job led to a loss of health insurance and a fresh crop of worries.

The only medication that offers some pain relief, about two hours a day — without interfering with the Coumadin she takes because of her mechanical heart valve — is an anti-seizure drug called Gralise, Boote said. Her pharmacist told her it’s not covered by medical assistance, which Boote believes is her only resort because health insurance through COBRA would cost more than $1,000 per month, and she has no income at this point.

“I’m a little ashamed, but I’ve got no choice.” Boote said, clearly feeling frustrated. “If you knew me years ago, I was a soccer mom, I raised money for the PTA. I don’t like asking for help.”

Eager to help others, Boote wants to spread awareness of Central Pain Syndrome, because she believes many other people have it and don’t know. She shares information about it through a Facebook page and has planned an educational event for 4 p.m. June 8 at the River Street Jazz Cafe in Plains Township. She hopes to invite Dr. Forest Tennant, an expert on intractable pain, to speak.

“It will be a CPS awareness rally with a lot of bands,” she said. “I’m gonna do this big. I’m very motivated, and it’s getting my mind off my pain for awhile. I’m going to have fun organizing this, and I’m going to help people.”

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