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Update 2008: Keeping hope alive - New team takes over for man suffering from Tourette's syndrome
By BETSY COHEN of the Missoulian

Although promises of surgery to possibly relieve Tyler Boshae of Tourette's syndrome did not materialize last fall, he says he wouldn't change anything about the last year. He married the love of his life, Kassie, and is now lined up with a more promising team of doctors to help him.
Photo by KURT WILSON/Missoulian
Tyler Boshae is still waiting for modern medicine to save him from himself.

Promises made by doctors in California did not materialize last fall, and so the 23-year-old Missoula man remains a prisoner of Tourette's syndrome.

Held captive by violent body-wracking spasms 24 hours a day, seven days a week, Boshae hopes for better days.

For 14 years, he has prayed for the day when he can sleep through the night. When he can quietly read a book, drive a car, go to college, start a career and raise a family.

And he continues to hold out hope for an experimental surgery called Deep Brain Stimulation.

Although his team of California doctors backed out of the surgery, another team has stepped forward to take on the challenge in January - this time in Cleveland.

The surgery, which has been successful for patients with Parkinson's disease, involves implanting electrodes into a deep part of the brain that can interrupt abnormal neurotransmissions.

In Boshae's case, the surgery could mean death - or it could mean a life free of spontaneous seizures, of the neurological chaos that causes Boshae to slam his body to the floor and contort his limbs in ways they are not intended to bend or move.

Weaker souls would dissolve in the face of such adversity, but Boshae believes there is a divine reason for his unexpected path.

In truth, he said, he never felt good about the doctors in California.

“They did a lot of screwing around and they were very inconsistent,” he said. “When I heard they dropped the case, I wasn't very disappointed. I knew something else would come up and shortly after, the Cleveland clinic called and said they would be willing to take up my case.

“Cleveland has a better reputation for this surgery,” he said, “and I feel really good about that.”

Granted, 2008 did not pan out the way Boshae had hoped. And he was hospitalized by his doctor last month so he could be sedated to give his body a few days of true rest.

But he wouldn't change anything.

In September, Boshae married the love of his life, Kassie. It's the one part of his life he feels is truly normal.

“We love each other very much,” Boshae said. “I'm loving married life. I feel like I'm moving forward with my marriage, but as far as my life goes, until this surgery happens, my life is at a standstill.”

Kassie, too, is happy to have found in Boshae the love of her life - a man who is thoughtful, caring and supportive.

It makes her all the more impatient for the day when her husband finally gets the surgery he needs.

“It's hard to sit here and watch Tyler go through bad days and not be able to do anything about it,” Kassie said. “How do you sit there and let a loved one suffer and not do anything about it?”

Despite the setbacks, Boshae's legions of supporters - called “Club Twitch” - never slowed their fundraising efforts to help Boshae and his family offset the astronomical costs of surgery, whenever the day comes.

The club's fund started out with a few hundred dollars last summer and by December had grown to more than $100,000.

“We will never stopped being overwhelmed with the outpouring of kindness to Ty and our family,” said Boshae's mother, Jonni.

Each day is filled with wonderful surprises, Jonni said. Recently, a woman came up to her and asked for the Boshae's address.

“She asked her husband not to give her a Christmas present this year because she wanted to give the money to Tyler,” Jonni explained.

“For me, it's hard to sum up the experience this has been. It's been very humbling and it makes you want to keep all that goodness alive and keep sending it out into the world,” she said.

The newlyweds are at a loss of words for the love, prayers and financial support they have received.

They know they aren't alone on their journey, and they won't give up on hope or God.

“All of this trial and tribulation makes us stronger and I can draw joy from that,” Kassie said. “If we can survive this as a couple, we can survive anything.”

The hardest thing now, Boshae said, is waiting for the holidays to be over.

“The surgeon said he has to coordinate his team around the holidays,” Boshae said. “Once Christmas and New Year's are over, things should move pretty quickly.”

“We are holding our breath, waiting for this,” Kassie said. “We are excited, but at the same time we are wary. We've been down this road before.”

As the year comes to a close, Jonni said she feels more and more confident about her son's future. She believes God's hand is behind all the orchestration that has connected them with the Ohio team of doctors, the ones who first attempted the experimental surgery on a patient with Tourette's syndrome.

“Somehow, it feels 2009 will be the first year of Tyler's life,” she said. “I think I'm right about this.”


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Dirk wrote on Dec 28, 2008 10:55 AM:

" hello!
...just wanted to let you know, your are in the BEST of hands. The professionalism and expertise you are to recieve are second to none. Think I may not know? Tell 'em "cookie man" says hi!
If you want, I can stop and see you on 01/14/2009. "

Matthew wrote on Jan 2, 2009 12:50 PM:

" I had DBS done for Essential Tremor 9/05 in Seattle. It will certainly change your life and I wish you the best of luck! "

Clarice wrote on Jan 27, 2009 7:43 PM:

" Hello!! I just read your story and I'm hoping that 2009 is a better year and that you're surgery will fix everything and you can finally live tic free!! With such a wonderful loving, caring support system and by the sounds of it you're wife loves you more than anything and with the support system and your magnificent wife in your life it'll make everything go much smoother because you know that people love you and are thinking about you and want whats best for you and they are always there to help you!!
I wish you the best!!
Good luck and hope you have the splendid year that you and your wife are hoping for!! "


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