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Clinical Trial Gives ALS Patient Hope

MDA Telethon To Air This Weekend

POSTED: 2:50 pm EDT September 2, 2010
UPDATED: 1:01 pm EDT September 8, 2010

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In one moment, Laura Tuttle, of Raynham, went from being a nurse to a patient fighting a losing battle for her life, but a new ALS clinical trial has given her and her family a new reason for hope.

For Laura, every day begins with an experimental but possibly life-saving treatment. She's being infused with the drug Zephtriaxium. The process takes about two hours and begins when they unfreeze the antibiotic.

"Rich does setup, and he flushes the line first and connects me up to the pump for about 23 minutes and when the bell goes off, I flush the line and I'm done for the infusion," Laura said.

The Tuttles have managed to keep their sense of humor in the face of a devastating diagnosis -- ALS or Lou Gherig's disease. It's a degenerative and terminal neurological illness that robs people of their ability to move and control their muscles.

It's often said doctors and nurses make the worst patients, and at first Laura was no exception. She spent more than 20 years working in the field, but since her diagnosis, her husband has had to take on that role.

"It's a hard transition when you've always been the caregiver and now you have to be dependent on somebody else. That probably, for me, has been the most emotional challenge," she said.

Laura is part of a 600-person MDA clinical trial, in hopes her new twice-a-day regimen will not only slow the progression of the disease, but also bring the ALS community one step closer to a desperately needed cure.

"She wants to do all that she can while she is still here and has a voice," Marissa Tuttle said.

"It is a commitment to be able to do this, it's part of living life and it's part of contributing to the rest of society and trying to make it better," Rich Tuttle said.

Laura was diagnosed in December nine months after she first started developing symptoms.

"And it got to the point where I was practically begging my physician for the diagnosis saying, 'I need to know. I need to put a name to what's happening to my body,' because I just felt like my body was disintegrating around me," Laura said.

"When the doctor finally came back and diagnosed it as ALS there were a lot of tears," Rich said.

Since that time, MDA has played a vital role in helping the Tuttles cope with the diagnosis and through the clinical trial has given them a reason for hope.

"Well, I have a lot of hope that this clinical trial is going to be effective for me and hope to keep me out of the wheelchair, keep me functional for as long as possible until we find a cure," Laura said.

"I want my wife around longer. It's what I want, and I don't want any other family to have to go through this process," Rich said.

The MDA Labor Day Telethon will be broadcast on Channel 5, starting Sunday at 9p.m. and continuing on Monday until 6 p.m.

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