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Local couple hopes raise awareness of rare disorder

Mike Bailey and his wife Dianne display one of his paintings, which is being raffled off to help pay medical expenses. Bailey has Multiple System Atrophy, along with other health issues. The raffle coincides with the MSA Awareness campaign during the month of March. (Donna Rhodes) (click for larger version)
March 21, 2012
TILTON — March is National Awareness Month for Multiple System Atrophy, but none are more aware of the terminal illness than Michael and Dianne Bailey of Tilton.

In 2006, Dianne began to notice her husband was becoming very clumsy and accident prone. He hit himself in the foot with a sledge hammer, stumbled frequently, and would fall quite often.

"It wasn't like him," she said. "He was always really active, and suddenly, he was falling all the time."

The final straw came in February of 2006, when Dianne found her husband sitting on the back porch with no coat or shoes on.

"He had gone snowshoeing while I was out and fainted, and that was how he came home," she recalls.

Trips to the doctors brought no answers until 2009, when a doctor at Dartmouth-Hitchcock Medical Center diagnosed his illness as MSA.

MSA is a degenerative neurological disease which causes problems with movement, balance, bladder control, blood pressure and other systems within the body. Dry mouth and difficulty in speech are other complications. Some symptoms can mimic Parkinson's Disease, but the progress of MSA is generally faster.

"What it comes down to is, he is dying from the inside out," said Dianne.

More than half the cases of MSA occurr in men, typically in their late 50's and early 60's. Bailey is now 53. There is no known cause for MSA, nor a cure. The best doctors can do is treat the symptoms.

Since the MSA diagnosis, the couple has lost both of their incomes, and relies on Social Security to pay the bills. Their savings and pensions have been spent, and the two cars they owned were sold to purchase a utilitarian van to transport Bailey and his wheel chair.

"We've cashed in everything we have except a life insurance policy to help pay medical costs," said Dianne.

A long time paraprofessional and substitute teacher in the Winnisquam School District, she now stays home searching for cheaper ways to purchase his medications. Some are as much as $300 a month.

In order to receive any assistance from state or federal agencies, she said they would have to cash in the life insurance policy as well, but Dianne is fearful to do that.

"It's all I have now for my future," she explained.

Mike spends his days doing what he can to keep his body functioning. Jigsaw puzzles help utilize fine motor muscles in his hands, and he reads a lot to stimulate his brain. He still picks up his paint brush when encouraged to do so, using wrist weights to help steady his hands.

"It takes me a lot longer to finish a painting, but I still paint," Mike said.

His movements are quite unsteady now, and Dianne worries about leaving him alone for extended periods. She has to rely on others to sit with him on occasion so she can shop and run errands.

Their small home had to be outfitted with ramps to enter the house, as well as a ramp to allow Bailey to get to the living room. A wooden "cage" was built around his chair so he can safely sit or stand up.

His greatest difficulty remains the bathroom, where he has to step over a knee-high wall to get into the tub. Handles were installed on the shower walls, but are not very secure, and Bailey has had more than his share of incidents.

"We really need a walk-in shower stall, but we can't afford it right now," Dianne said.

Windows in the home need replacement, and while solid panes of glass were installed over them to keep the drafts out, they now cannot open the windows for fresh air in the warmer months.

As if that wasn't enough, last year, the couple had another setback when Bailey was also diagnosed with esophageal cancer. They spent the summer traveling daily to Hanover for chemotherapy treatments. Dianne herself has some serious health issues that worry her as well.

"If I go down, I don't know what's going to happen to Mike," she said.

While Bailey's speech is slurred and he has difficulty walking, he remains cheerful and works with therapists to keep his muscles working as best as possible.

"You just keep trying. It is what it is," he said.

Bailey made a list of things he would like to do in the time he has left and has been gradually checking them off. He was invited to Fenway Park for a special tour of the stadium, and attended batting practice, where he caught a fly ball. He also got to cross off seeing Rascal Flatts in concert, but as an avid race fan, he would now like to attend a race at New Hampshire Motor Speedway. And there was one more wish.

"Believe it or not, I want to go sky diving," Bailey said with a crooked smile. "I've always wanted to do that."

In the meantime, his wife is focused on getting a chair lift for their van so he can get in and out of the vehicle without falling. To help raise money, the couple has decided to raffle off one of Bailey's paintings. Since Mike's father was George "Pudgie" Bailey, a long time member and former chief of the Tilton-Northfield Fire Department, the winning ticket will be pulled at the Center Street Station on April 20. Tickets are $5 each, and can be purchased by contacting Dianne Bailey at 455-1925.

Mike Cryans
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