This article in the Highlands Today newspaper is about Sebring, FL resident Jean Maas, a member here. (She hasn't posted in a long time.) She discusses learning about LBD from a member of a dementia support group, her husband Bill's reaction to anesthesia, and brain donation to Mayo Jax. After her husband's death, Jean became a co-leader of the local dementia support group.
In this post on the Forum, Jean indicates that her husband's neuropathology report shows his confirmed diagnoses to be Alzheimer's Disease and Transitional Lewy Body Disease.
Here's the newspaper article:
http://www2.tbo.com/content/2010/apr/04 ... s-cluster/
By GARY PINNELL
Published: April 4, 2010
SEBRING - About seven years ago, William Maas had a back operation, and that's when an undetected problem was found.
"He had Lewy body dementia," said Jean Maas. His wife read from a list of indicators that are similar to Parkinson's: stooped posture, shuffling feet and occasional tremors. But here's the one that alerted his wife - Lewy Body clients are hyper-sensitive to medications.
"When he came out of the anesthetic, he was psychotic for two days," Jean Maas said. "He was totally out of his mind. He thought he saw people coming in through the windows. We thought it was a reaction to the morphine." In the next few days, the medication wore off, and Bill returned to normal.
Until the next operation. She told the anesthesiologist about her husband's reaction. He assured her, "Oh, we don't use any of those drugs."
But Maas knew something, and she's one of those women who doesn't mind telling doctors what's what. "In five minutes, he's going to be uncontrollable."
A dementia cluster
In the United States, one person in every 57 has Alzheimer's disease.
In the Sunshine State, it's one in 38, according to the 2009 Alzheimer's Disease Facts & Figures estimate, available at www.alz/FLGulfCoast
Now get ready for this: one in every 20 Highlands County residents has Alzheimer's.
One-third of Highlands County's 100,000 population is 65 or older, so that means one in every six seniors has Alzheimer's. The disease mostly affects people over 60.
Gulf Coast president Gloria Smith's educated guess is that since more seniors live in Florida, and since seniors are living longer, and since the incidence of Alzheimer's goes up as people age, well, that's the reason why Florida has so many Alzheimer's.
For the same reason, Highlands, with its vast retirement population, is presumed to have three times the national average of Alzheimer's. A few counties, like Charlotte, have even greater incidence.
One day, a man from West Palm Beach showed up in Sebring.
"Bless his heart," said Nell Hays. "We didn't know who he was. It took four or five officers to track it down. And that's not terribly unusual. It happens, maybe, once a year."
Hays, a crime prevention specialist, takes the callat the Highlands County Sheriff's Officewhen an Alzheimer's patient wanders. In the last few months, she's gotten about 20 alerts.
The first time a patient wanders, they get a free temporary bracelet. It has an ID number and a telephone number that answers at the sheriff's office.
Sixty percent of Alzheimer's patients will wander at some point during their disease, Smith says, so she advocates a permanent bracelet for each one.
More info: 385-0024. Dial extension 2 for Nell Hays.
Sam McKissock never got lost, but once, while they were in Walmart...
"He didn't know where I was," said his wife, Ellen McKissock. "He panicked. They don't want you out of their sight. You are their security blanket."
Sam had Alzheimer's for 10 years, and the time came when she could no longer care for her husband. His health was failing, and she was afraid he would fall and break a bone. Finally, she followed a doctor's suggestion and signed a paper so Sam could go to a Lake Placid nursing home.
"I had no idea he was being Baker Acted," McKissock said. "They pushed antipsychotic drugs into him, which made him a zombie. He lost all ability to communicate. It was just a horrible thing to have happen. He was a very dignified man."
In just nine or 10 days, she brought him back home. He was only there for a month, and half of that time he was in hospice care.
When he was lucid, Sam knew exactly what was going on. At other times, he would walk with his wife, encounter a neighbor, and not recognize him.
"He couldn't remember what happened yesterday," McKissock said. Likeother Alzheimer's, Sam's long-term and childhood memories were unaffected, but he couldn't form short-term memories.
Alzheimer's humiliated Sam. A former maintenance superintendent for an electric company in his hometown of Cambridge Springs, Pa., Sam couldn't recall which way to turn a screwdriver. He'd forget phone numbers. In his life, he'd built two homes, but he no longer knew which tool to use.
"You are so stupid," he would say to himself.
"No," Ellen would remind him. "You have an illness in your brain."
No one knows what causes the disease, but autopsies reveal an excess of plaque in the brain. The Alzheimer's Association suggests that the lack of proper diet and exercise could be one cause. Studies with football players show head injuries may also have an effect. When Sam was a lineman, he was once jolted by 7,200 volts, so Ellen thinks that may have been the catalyst.
One other thing McKissock wants caregivers to know: "I had the impression I could take care of him better than anybody else. But now, I know there are other people who could have taken care of him too."
Caregivers exhaust themselves to the point of getting sick themselves. McKissock has Sjorgen's Syndrome, an auto-immune disease that dries out the body. A CAT scan revealed her lungs look like broken glass. Her joints get dry and arthritic, and her voice is hoarse.
At Thursday's support group, Marc Mangus stepped out to take a phone call.
"I have second-stage Alzheimer's. My wife and I come here to find out some of the things I have to look forward to."
Mangus intends to sound humorous. He is 85. His wife, Dolores Beecher, 74, also has dementia. But it's not getting them down.
"I've had it for five years. I'm on Aricept, so I'm in pretty good health," said Mangus, a former code enforcement officer, from Harrisburg, Pa., and a property casualty underwriter in West Virginia and Pennsylvania.
He does have symptoms of the seven-stage disease: he loses his balance, he gets confused. Mangus didn't want to cause an accident, so he stopped driving years ago when he realized he wasn't paying attention and wasn't watching his mirrors.
But Mangus remains happy. "I think that's a big help. I want people to know that they don't have to look on Alzheimer's in a downhearted way, with a long face. Be happy, converse with one another. That's what we do."
Help for the weary
McKissock and Maas are co-facilitators of the Roche support group, which meets at 1 p.m. on Thursdays at Sebring Christian Church, 4514 Hammock Road. Appointments aren't needed, and caregivers can bring their spouses or guests.
The free, non-denominational group is named for Lyn Roche, who died last year. She started the group because several members of her family had dementia, and she knew the caregivers also suffered.
"People can just walk in," McKissock said. Both caregivers and victims are encouraged to tell their stories. "If they are able to talk about it, it's wonderful to hear what they have to say."
"It's an uplifting experience for caregivers," Maas said. "We have a lot of laughs, and we also help them get information they need."
More info: Jean Maas, 314-9193, Ellen McKissock, 385-5408.
So far, there is no cure, but some symptoms, like stress or the effects of medicine, can be reversed. More than 90 drugs are in clinical trials. Smith says four drugs can slow the progression of Alzheimer's.
Smith and Lisa Rodriguez, who is in charge of the Highlands office, have mobile offices. "If you can't come to us, we'll come to you," Smith said
More info: 727-667-8184 or 385-3444.
Lewy body dementia
It was from Lyn Roche that Jean Maas learned about Lewy body dementia.
"She said, 'I just found out about another type of dementia,'" Maas recalled. Roche started calling out the symptoms, and Maas realized they described her husband.
She took Sam back to a neurologist, who wasn't convinced.
"He doesn't have Parkinson's," the doctor insisted.
"No, but he has the symptoms of Parkinson's," she pointed out.
Lewy body dementia isn't rare, but it's new enough that most doctors still aren't familiar with it, so these days, Maas educates doctors. Recently, she brought brochures to three hospital anestheologists who weren't aware the effects their medicine would have on Lewy patients.
Maas believes she can spot the rigid muscle movement of Lewy body victims as they stand in line at the pharmacy. About 800,000 Americans have one of the five forms of Lewy body.
Sam's neurologist changed his diagnosis, agreeing with Jean, but she wanted absolute proof. She wasn't able to afford an autopsy, so when Sam died last year, a local doctor - Maas can't recall his exact name - stayed on call all weekend. The doctor removed Sam's brain within the hour, which was rushed to Mayo Clinic. They confirmed the presence of round Lewy proteins that control or block thinking, attention, hallucinations, alertness, balance and tremors.
Maas and Smith advocate going to the Memory Disorder Clinic at Sarasota Memorial Hospital. They say it has the equipment and the expertise to accurately diagnose dementia, and distinguish one disease from the other.
That's important to Bill's nieces, great-nieces and great-nephews, because Alzheimer's may be genetic.
"They are in a straight bloodline," Maas said. Their mother died from Alzheimer's, and Lewy body took their uncle. Scientists aren't certain yet whether either disease is passed genetically, but in the future, if they do find out, those nieces and nephews will know their medical history.
"The best thing you can do is educate yourself," Maas said. "You can not leave it in the hands of the physician. You are the person in charge of your health. You are the caregiver."
The future of Alzheimer's
This year, 5.5 million Americans will be 85 years and older; by 2050, that number will balloon to 19 million.
Since the incidence of Alzheimer's and other dementias increases with age, the number of victims will also grow.
In 2000, an estimated 411,000 people were diagnosed with Alzheimer's. By 2050, 959,000 Americans will get Alzheimer's every year.
By 2050, 11-15 million seniors could have Alzheimer's.
Only a medical breakthrough to identify, prevent and treat the disease will bar these developments, according to the Alzheimer's Association.
Highlands Today reporter Gary Pinnell can be reached at 863-386-5828 or firstname.lastname@example.org