Some of you may have heard of Barbara Hutchinson and her late husband Bill who had LBD. A few years ago, they drove around the US in a motor home to raise awareness for LBD. Barbara is now living in North Carolina and is still raising awareness for LBD.
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Cycling turns woman's grief into awareness campaign
Carteret County News-Times
Published: Wednesday, October 20, 2010 3:06 PM EDT
NEWPORT â After watching her husband slowly die from a debilitating disease, one 66-year-old woman is turning her grief into action.
Barbara Hutchinson of this community will ride 100 miles on her bike Saturday to raise awareness of Lewy body dementia (LBD) and money for Lewy Body Dementia Association Inc., based in Atlanta.
She will do her ride at Between the Waters Bike Tour in Onancock, Va.
This isnât the first time Ms. Hutchinson has traveled to raise awareness of LBD, a progressive brain disease and the second leading cause of degenerative dementia in the elderly.
For the last year of her husbandâs life, the couple toured the nation in a motor home speaking to groups about LBD. Her husband, Bill, died Aug. 29, 2007.
âFew people know about Lewy body dementia and itâs often misdiagnosed,â she said. âI want to raise awareness of the disease and see that people are properly diagnosed and receive the proper meds. If people arenât aware of the disease, they donât know what to do.
âLBD affects cognitive thinking first; Alzheimerâs affects memory,â she continued. âLBD people lose the ability to use tools and do things. Unlike Alzheimerâs, most people with LBD know their people. Bill knew who I was until the end.â
The three major symptoms of LBD are: fluctuations in cognition, Parkinsonâs symptoms and hallucinations. Rapid Eye Movement sleep disorder may be a precursor to LBD years before it shows.
The disease accounts for up to 20 percent of all dementia cases, which in the United States translates to about 800,000 patients.
More than 50 percent of Parkinsonâs disease patients develop Parkinsonâs disease dementia, which is also a type of Lewy body dementia.
In primary and specialty settings, physicians many times donât recognize the distinguishing symptoms of LBD. Many times the symptoms are misdiagnosed as Alzheimerâs disease or Parkinsonâs disease.
Ms. Hutchinson said the first time she realized something was wrong with her husband was in 2003, when he was 67.
âHe walked like an old man and was really stiff,â she said. âHe told me he had lost his sense of direction and wasnât thinking right.â
Being a nurse, Ms. Hutchinson first had him tested for a stroke.
âHe had some deterioration, and they diagnosed him with Parkinsonâs (which affects motor skills), but it didnât address his mental problems,â she said. âThen he started having hallucinations.â
They finally found a doctor who diagnosed the disease correctly in August 2005.
âThey said he probably had Parkinsonâs with Lewy body dementia,â she said.
Unfortunately there is no medication for LBD.
âThey treat patients with the same medications used for Alzheimerâs and Parkinsonâs patients,â she said. âBut it has to be the right balance. The meds used to help the hallucinations of Lewy body can exacerbate the Parkinsonâs. And the meds for Parkinsonâs can exacerbate the hallucinations.â
Ms. Hutchinson placed her husband in long-term care on Nov. 30, 2005, at the hospital she worked at in Valdez, Ala. But his condition worsened, and she decided in March 2006 to resign from her job and take care of her husband.
âAs long as I was with him, he was fine,â she said. âSo we decided to load up our motor home and travel from Alaska to Florida raising awareness of LBD. It was the adventure of a lifetime.â
Along the way, Ms. Hutchinson spoke to about 100 different groups, from Lionâs Clubs to churches, about LBD.
While the trip was rewarding, Ms. Hutchinson said there were tough times, as well.
âWe had a lot of good times, but there were times when he would collapse,â she said.
The couple arrived at their daughterâs home in Fort Meyers, Fla., in May 2007. Her husband died three months later.
âWe stayed at my daughterâs until he died,â she said. âWe put him in hospice for the last week and they were wonderful.â
Ms. Hutchinson said her grief was combined with feelings of relief.
âMy grieving was watching him suffer and not being able to do anything about it,â she said. âI cried almost every day he was in long-term care.
âWe had the most wonderful year when we traveled. He enjoyed going to the meetings where I would speak. He was my most avid fan,â she said.
Following her husbandâs death, Ms. Hutchinson drove her motor home to Newport during Thanksgiving 2007 to be near another daughter, whose husband was deployed to Iraq at the time.
Ms. Hutchinson got a job as a registered nurse at Carteret General Hospital, where she worked for a year and a half.
âI retired from there and I now work part-time at Carteret Community College teaching CNA (certified nursing assistant) students,â she said.
Ms. Hutchinson still lives in her motor home and has spoken to a few area groups, including the Morehead City and Newport Rotary Clubs, and at the Leon Mann Jr. Enrichment Center in Morehead City.
She also plans to start a support group for families struggling with LBD.
âIâve met caregivers of Lewy body people here,â she said. âItâs nice to talk with other LBD caregivers because they understand what youâre going through.â
Ms. Hutchinson also posted a video on YouTube about LBD and the trip she and her husband made across America. That video can be accessed at: youtube.com/bbhutch44.
Those wanting to donate to the LBD Association on behalf of Ms. Hutchinson can go to: firstgiving.com/barbarahutchinson.
Those interesting in taking part in an LBD support group can contact Ms. Hutchinson at 269-9748.