Voters approved Initiative 1000 on Tuesday, making Washington the second state to give terminally ill people the option of medically assisted suicide.
By CURT WOODWARD
Voters approved Initiative 1000 on Tuesday, making Washington the second state to give terminally ill people the option of medically assisted suicide.
The ballot measure, patterned after Oregon's "Death with Dignity" law, allows a terminally ill person to be prescribed lethal medication, which would be self-administered.
With about 43 percent of the expected vote counted Tuesday in unofficial returns, I-1000 was being approved by a margin of about 58 percent to about 42 percent.
Supporters, led publicly by Democratic former Gov. Booth Gardner, said the initiative would provide a compassionate way for terminally ill people to die.
Gardner has Parkinson's disease, an incurable disorder that causes tremors and stiff or frozen limbs. Gardner, who would not be eligible under I-1000 because Parkinson's is not considered fatal, said he pushed the measure in his "last campaign" because he understood why other ill people would want the option.
Opponents, including the Catholic church, said assisted suicide is a dangerous step that devalues human life. Critics also said the assisted suicide measure could exploit depressed or vulnerable people who worry they've become a burden on their families.
The measure involved a multimillion-dollar campaign, including TV advertisements featuring actor Martin Sheen, who urged a "no" vote. But polling before Election Day showed I-1000 with significant support.
Outside of Oregon, advocates of similar laws haven't fared well. California, Michigan and Maine voters rejected the idea, and bills have failed in statehouses around the country. In Washington, voters rejected physician-assisted suicide in 1991.
This year's proposal differs from the earlier Washington measure - it doesn't allow doctors to administer lethal drugs on behalf of patients who can't do so themselves.
Any patient requesting the fatal medication must be at least 18, declared competent and a resident of Washington state.
The patient would have to make two oral requests, 15 days apart, and submit a written request witnessed by two people, including one person who is not a relative, heir, attending doctor, or connected with a health facility where the requester lives.
Two doctors also would have to certify that the patient has a terminal condition and six months or less to live.
Forty-nine people died in Oregon last year under that state's assisted suicide law, according to a report by the Oregon Department of Human Services. Since it went into effect, more than 340 Oregon patients have used the law to end their lives.
Most suffered from cancer, and the most common reasons reported for choosing assisted suicide were loss of autonomy, loss of dignity and a decreasing ability to participate in activities they enjoyed.
The decision on I-1000 was a personal one for 82-year-old Jean Hoggarth of Yakima. She battled breast cancer and the disease now has spread to her bones, but voted against the initiative.
"I've had experience with people dying, but I believe it can be done peacefully," Hoggarth said. "And we have doctors today who give the best care. They should be allowed to do that all the way to the end."
Mike Dingus, a 39-year-old long-term care worker in Yakima, voted "yes."
"You don't get much choice coming in, so you should get some choice going out," Dingus said.
Wednesday, November 19, 2008
Famed pastor says there's a cure for Parkinson's
Robert Schuller is under scrutiny from medical experts and those suffering from the disease.
By JENNIFER MUIR
GARDEN GROVE — Robert H. Schuller announced Sunday during an internationally televised sermon at the Crystal Cathedral that his friend has discovered a cure for Parkinson's disease, sparking a backlash among those who suffer from the neurological disease and bewilderment among medical professionals.
Schuller was introducing a different guest for his "Hour of Power" sermon when he made the announcement, promising his congregation that the medical researcher would soon fly in from Pittsburgh "to share with us how God helped him to discover a cure — that's the word they use — for Parkinson's disease."
But no one else in the medical community has heard about it.
"This is giving people false hope," said Bob Kendall, 48, who was diagnosed seven years ago. "To me this is really sad. If there was a breakthrough and a cure, it wouldn't be a televangelist announcing it, believe me. There are a lot of people up in arms."
Neurological experts say they're not aware of any breakthrough. Dr. Neal Hermanowicz, director of the movement disorder program in UCI's Department of Neurology, said it would be unusual for such a discovery to remain a secret, as promising work in progress is routinely presented and discussed at medical conferences.
"I don't know of anybody anywhere in the world who is close to a cure for Parkinson's disease," said Hermanowicz, who was first asked about Schuller's sermon by a patient on Thursday.
"Usually if something big is about to occur, there's evidence presented at our meetings," he said. "So if somebody has something really big it would be unusual to have no inkling of it in advance."
Schuller told congregants that he learned about the breakthrough while at a recent conference in Toronto for members of Horatio Alger, a nonprofit group that honors community leaders who have achieved success "through honesty, hard work, self-reliance and perseverance over adversity," the group's Web site says.
"One of my friends there is a famed researcher and he whispered to me, 'I've done it,'" Schuller said during the sermon. "I said, 'You have?' I've known him 20 years. He has discovered a cure to Parkinson's disease and he will be with me here in person in a few weeks."
He did not disclose the researcher's name during his sermon, but a spokesman confirmed Friday that the pastor was referring to Dr. Peter J. Jannetta, a professor of neurosurgery and namesake of the Jannetta Center for Cranial Nerve Disorders at Allegheny General Hospital in Pittsburgh, Penn.
The spokesman, Michael Nason, referred questions about the research to Jannetta.
A secretary for Jannetta said he was not available for comment.
"We want to be very cautious at this point on what we say further," Nason said. "We think that this has tremendous, very positive ramifications, and we want to take care that we help the doctor make sure that this is responsibly reported."
In his sermon, Schuller said the research has been "triple-checked" and will appear in the London-based medical journal Lancet. A representative for Lancet declined to comment, saying that the journal's "peer-review process and all correspondence with authors are confidential."
Parkinson's disease is caused by the degeneration of dopamine cells in the brain. Symptoms include tremors, slow speech and a shuffling walk. More than 1.5 million people across the U.S. suffer from the disease, according to the American Parkinson's Disease Association.
There is no known cure, and recent research has primarily focused on finding ways to slow its development, determine its cause and better treat the symptoms, Hermanowicz said.
While he's not aware of Jannetta's expertise in Parkinson's research, Hermanowicz said Jannetta is a known expert for surgeries that stop facial twitching, and that the University of Pittsburgh is home to many well-respected neurologists.
Kendall, who lives in Ashland, Ohio and is on disability because of the disease, first heard about Schuller's announcement Monday, when he was emailed a link to the "Hour of Power" webcast. Ever since, he's been calling the Crystal Cathedral and Allegheny General Hospital for answers.
"Why would someone in his position stand up and say something like that?" Kendall said. "It makes you angry."
Nason acknowledged the Crystal Cathedral has received phone calls about the sermon from viewers suffering from Parkinson's, and cautioned people not "to put a total answer on it without first finding out what the significance of the paper is."
The church is hopeful Jannetta has found a cure, and they're looking forward to him appearing as a guest on the show, Nason said.
Dixie Bullington, a 75-year-old paralegal who has Parkinson's, says she's waiting to see proof.
"I'm not one to jump on something quickly just because somebody says it," said Bullington of La Mirada. "I would want to see the research and talk to the neurologist about it and see where the research came from….You would think there would be some headlines in the paper about it if that were true."
Hermanowicz learned about Schuller's announcement from a patient, and offered some hopeful advice.
"I tell my patients that there is reason for optimism," he said. "It's of intense interest and effort by a lot of very bright people.
"I don't know of a fix for Parkinson's disease that's foreseeable in the immediate future, but there's a lot of effort going on around the world."
By JENNIFER MUIR
GARDEN GROVE — Robert H. Schuller announced Sunday during an internationally televised sermon at the Crystal Cathedral that his friend has discovered a cure for Parkinson's disease, sparking a backlash among those who suffer from the neurological disease and bewilderment among medical professionals.
Schuller was introducing a different guest for his "Hour of Power" sermon when he made the announcement, promising his congregation that the medical researcher would soon fly in from Pittsburgh "to share with us how God helped him to discover a cure — that's the word they use — for Parkinson's disease."
But no one else in the medical community has heard about it.
"This is giving people false hope," said Bob Kendall, 48, who was diagnosed seven years ago. "To me this is really sad. If there was a breakthrough and a cure, it wouldn't be a televangelist announcing it, believe me. There are a lot of people up in arms."
Neurological experts say they're not aware of any breakthrough. Dr. Neal Hermanowicz, director of the movement disorder program in UCI's Department of Neurology, said it would be unusual for such a discovery to remain a secret, as promising work in progress is routinely presented and discussed at medical conferences.
"I don't know of anybody anywhere in the world who is close to a cure for Parkinson's disease," said Hermanowicz, who was first asked about Schuller's sermon by a patient on Thursday.
"Usually if something big is about to occur, there's evidence presented at our meetings," he said. "So if somebody has something really big it would be unusual to have no inkling of it in advance."
Schuller told congregants that he learned about the breakthrough while at a recent conference in Toronto for members of Horatio Alger, a nonprofit group that honors community leaders who have achieved success "through honesty, hard work, self-reliance and perseverance over adversity," the group's Web site says.
"One of my friends there is a famed researcher and he whispered to me, 'I've done it,'" Schuller said during the sermon. "I said, 'You have?' I've known him 20 years. He has discovered a cure to Parkinson's disease and he will be with me here in person in a few weeks."
He did not disclose the researcher's name during his sermon, but a spokesman confirmed Friday that the pastor was referring to Dr. Peter J. Jannetta, a professor of neurosurgery and namesake of the Jannetta Center for Cranial Nerve Disorders at Allegheny General Hospital in Pittsburgh, Penn.
The spokesman, Michael Nason, referred questions about the research to Jannetta.
A secretary for Jannetta said he was not available for comment.
"We want to be very cautious at this point on what we say further," Nason said. "We think that this has tremendous, very positive ramifications, and we want to take care that we help the doctor make sure that this is responsibly reported."
In his sermon, Schuller said the research has been "triple-checked" and will appear in the London-based medical journal Lancet. A representative for Lancet declined to comment, saying that the journal's "peer-review process and all correspondence with authors are confidential."
Parkinson's disease is caused by the degeneration of dopamine cells in the brain. Symptoms include tremors, slow speech and a shuffling walk. More than 1.5 million people across the U.S. suffer from the disease, according to the American Parkinson's Disease Association.
There is no known cure, and recent research has primarily focused on finding ways to slow its development, determine its cause and better treat the symptoms, Hermanowicz said.
While he's not aware of Jannetta's expertise in Parkinson's research, Hermanowicz said Jannetta is a known expert for surgeries that stop facial twitching, and that the University of Pittsburgh is home to many well-respected neurologists.
Kendall, who lives in Ashland, Ohio and is on disability because of the disease, first heard about Schuller's announcement Monday, when he was emailed a link to the "Hour of Power" webcast. Ever since, he's been calling the Crystal Cathedral and Allegheny General Hospital for answers.
"Why would someone in his position stand up and say something like that?" Kendall said. "It makes you angry."
Nason acknowledged the Crystal Cathedral has received phone calls about the sermon from viewers suffering from Parkinson's, and cautioned people not "to put a total answer on it without first finding out what the significance of the paper is."
The church is hopeful Jannetta has found a cure, and they're looking forward to him appearing as a guest on the show, Nason said.
Dixie Bullington, a 75-year-old paralegal who has Parkinson's, says she's waiting to see proof.
"I'm not one to jump on something quickly just because somebody says it," said Bullington of La Mirada. "I would want to see the research and talk to the neurologist about it and see where the research came from….You would think there would be some headlines in the paper about it if that were true."
Hermanowicz learned about Schuller's announcement from a patient, and offered some hopeful advice.
"I tell my patients that there is reason for optimism," he said. "It's of intense interest and effort by a lot of very bright people.
"I don't know of a fix for Parkinson's disease that's foreseeable in the immediate future, but there's a lot of effort going on around the world."
Living With Parkinson's
Courtny Gerrish
RACINE - Imagine being diagnosed with an incurable, progressive disease at the prime of your life.
When a Kenosha woman was diagnosed with Parkinson's disease, she knew it would be tough, but she's battling it head-on.
Exercise isn't easy for any of us. For Cindy Grueter...it's especially a challenge.
"You have to look at what you can, not what you can't do," Cindy explains.
Cindy has Parkinson's disease, a brain disorder that leads to shaking and difficulty moving.
"My hand tremors started in my right hand, but they've progressed to my legs, which when your legs shake, your whole body shakes," Cindy says.
Cindy was diagnosed six years ago at age 43. Most cases don't develop until after age 50.
"You look at it and think, 'Where am I gonna be in 10 years?'" she admits.
The diagnosis came right at the peak of Cindy's career. She also had two kids in high school. Her daughter Dana recalls that difficult time.
"My mom was very depressed for a long time, and our family kind of went into chaos, crisis mode," she says.
Cindy's husband John adds, "Once in awhile I'll see where she can't do something, and that'll upset me."
Cindy decided it was time for a change...and that's where Razor Sharp Fitness and personal trainer Ernie Zuberbuehler came in.
"She was a go-getter. She wanted to do everything, jumps right to it," Zuberbuehler says.
Cindy takes several medications a day, but nothing works as well as exercise.
"The exercise helps a lot. I feel better. I look better," Cindy notes.
There's even research to back up the benefits of exercise in Parkinson's patients. Dr. Karen Blindauer is a neurologist at the Medical College of Wisconsin.
"There's some theories that the increase in blood flow to the brain when we exercise, or even just circulating endorphins that just make us feel good when we exercise, that might even help to preserve the dying nerve cells in Parkinson's," Dr. Blindauer says.
Cindy has another coping mechanism besides exercise: Her new red sports car!
"Cindy hit me with the 'I'm not sure how much longer I'll be able to drive, and I'd really like to have it, and we could afford it,’ so yeah, she got her little red sports car," John says.
While Cindy has improved...it's still not easy for the family.
"The things that upset me most now...she has a very hard time smiling. I miss seeing my mom smile," Dana admits.
Cindy's condition will eventually worsen. But for now, she's hitting the gym, and beating the odds!
"I think the bottom line is, is you can't look for a Utopia, cuz it's not coming. You gotta learn to live with this disease, and all the little things it does to you," Cindy explains.
The Medical College and Froedtert Hospital offers treatment and advice for patients and their families.
There's no cure for Parkinson's, but medicine and surgeries like Deep Brain Stimulation can help control the symptoms.
RACINE - Imagine being diagnosed with an incurable, progressive disease at the prime of your life.
When a Kenosha woman was diagnosed with Parkinson's disease, she knew it would be tough, but she's battling it head-on.
Exercise isn't easy for any of us. For Cindy Grueter...it's especially a challenge.
"You have to look at what you can, not what you can't do," Cindy explains.
Cindy has Parkinson's disease, a brain disorder that leads to shaking and difficulty moving.
"My hand tremors started in my right hand, but they've progressed to my legs, which when your legs shake, your whole body shakes," Cindy says.
Cindy was diagnosed six years ago at age 43. Most cases don't develop until after age 50.
"You look at it and think, 'Where am I gonna be in 10 years?'" she admits.
The diagnosis came right at the peak of Cindy's career. She also had two kids in high school. Her daughter Dana recalls that difficult time.
"My mom was very depressed for a long time, and our family kind of went into chaos, crisis mode," she says.
Cindy's husband John adds, "Once in awhile I'll see where she can't do something, and that'll upset me."
Cindy decided it was time for a change...and that's where Razor Sharp Fitness and personal trainer Ernie Zuberbuehler came in.
"She was a go-getter. She wanted to do everything, jumps right to it," Zuberbuehler says.
Cindy takes several medications a day, but nothing works as well as exercise.
"The exercise helps a lot. I feel better. I look better," Cindy notes.
There's even research to back up the benefits of exercise in Parkinson's patients. Dr. Karen Blindauer is a neurologist at the Medical College of Wisconsin.
"There's some theories that the increase in blood flow to the brain when we exercise, or even just circulating endorphins that just make us feel good when we exercise, that might even help to preserve the dying nerve cells in Parkinson's," Dr. Blindauer says.
Cindy has another coping mechanism besides exercise: Her new red sports car!
"Cindy hit me with the 'I'm not sure how much longer I'll be able to drive, and I'd really like to have it, and we could afford it,’ so yeah, she got her little red sports car," John says.
While Cindy has improved...it's still not easy for the family.
"The things that upset me most now...she has a very hard time smiling. I miss seeing my mom smile," Dana admits.
Cindy's condition will eventually worsen. But for now, she's hitting the gym, and beating the odds!
"I think the bottom line is, is you can't look for a Utopia, cuz it's not coming. You gotta learn to live with this disease, and all the little things it does to you," Cindy explains.
The Medical College and Froedtert Hospital offers treatment and advice for patients and their families.
There's no cure for Parkinson's, but medicine and surgeries like Deep Brain Stimulation can help control the symptoms.
Also on the ballot: Assisted suicide measure
Jordan Lite
There's renewed energy behind the right-to-die movement: A voter initiative on the Washington State ballot would allow doctors to prescribe lethal drugs to dying patients.
If residents approve the measure, known as Initiative 1000 or the "Washington Death with Dignity Initiative," the state would become only the second in the country to allow the terminally ill to die with the help of a doctor. Oregon approved its own law in 1994.
Washington State voters rejected physician-assisted suicide in 1991, as have those in California, Michigan and Maine, the Associated Press notes. But unlike the first, failed initiative in Washington State, this one—sponsored by a coalition led by former Washington State Gov. Booth Gardner, who has Parkinson's disease—wouldn't let doctors administer lethal medicines to patients who can't take them on their own. Only the patients themselves would be able to use them to commit suicide.
Here are the parameters of the proposed law, according to the Yes on I-1000 Web site: Patients would have to be state residents who are 18 or older, be diagnosed with a terminal illness that gives them six months or less to live, and be mentally competent. They'd have to make three requests for medication — two verbal, and one in writing — with a 15-day waiting period between the first verbal request and the written one. There would be another 48-hour wait between the written request and the writing of the actual prescription.
Two people would have to witness the signing of the written request.
Since Oregon's law went into effect in 1997, 340 people have taken their lives, the AP says. That law, as well as the proposed Washington State measure, stop short of allowing euthanasia as it works in the Netherlands, the Seattle Times notes. There, doctors can administer lethal drugs.
There's renewed energy behind the right-to-die movement: A voter initiative on the Washington State ballot would allow doctors to prescribe lethal drugs to dying patients.
If residents approve the measure, known as Initiative 1000 or the "Washington Death with Dignity Initiative," the state would become only the second in the country to allow the terminally ill to die with the help of a doctor. Oregon approved its own law in 1994.
Washington State voters rejected physician-assisted suicide in 1991, as have those in California, Michigan and Maine, the Associated Press notes. But unlike the first, failed initiative in Washington State, this one—sponsored by a coalition led by former Washington State Gov. Booth Gardner, who has Parkinson's disease—wouldn't let doctors administer lethal medicines to patients who can't take them on their own. Only the patients themselves would be able to use them to commit suicide.
Here are the parameters of the proposed law, according to the Yes on I-1000 Web site: Patients would have to be state residents who are 18 or older, be diagnosed with a terminal illness that gives them six months or less to live, and be mentally competent. They'd have to make three requests for medication — two verbal, and one in writing — with a 15-day waiting period between the first verbal request and the written one. There would be another 48-hour wait between the written request and the writing of the actual prescription.
Two people would have to witness the signing of the written request.
Since Oregon's law went into effect in 1997, 340 people have taken their lives, the AP says. That law, as well as the proposed Washington State measure, stop short of allowing euthanasia as it works in the Netherlands, the Seattle Times notes. There, doctors can administer lethal drugs.
Henry Ford Awarded $1 Million for Parkinson Research
The Department of Neurology at Henry Ford Hospital has been awarded a $1 million endowment by the late William T. Gossett to advance research in Parkinson’s disease, a devastating neurological disorder.
Jay M. Gorell, M.D., division head of Movement Disorders and director of Gossett Parkinson’s Disease Center, has been named the first holder of the William T. Gossett Chair in Neurology.
The $1 million gift will be placed into an account, and the interest generated will be overseen by Gorell to support research in Parkinson’s disease. Gossett, a prominent Detroit attorney, was former president of the American Bar Association. He died last year.
"This endowed chair will allow Dr. Gorell and his team of researchers to continue to make a real difference in the treatment and understanding of Parkinson’s disease," said Gail Warden, president and CEO of Henry Ford Health System.
In recent years, Gorell and his research team have found:
* Evidence that chronic occupational exposure to several metals such as copper, manganese lead and iron is associated with the disease;
* An association of Parkinson’s disease with occupational exposure to herbicides and insecticides;
* In the first population-based case control study of the relationship between smoking and Parkinson’s disease, that current heavy smokers were more protected than ex-smokers or non-smokers;
* Evidence that dietary intake of total fat and cholesterol, as well as a high intake of iron, were risk factors for the disease;
* Evidence that Lutein, a dietary antioxidant, was highly associated with Parkinson’s disease, possibly acting in a protective role; and
* A significant risk for Parkinson’s disease among first- and second-degree relatives of patients with the disease compared with those without the condition. These findings have provided a basis for continued study of the underlying mechanisms for Parkinson’s disease.
Jay M. Gorell, M.D., division head of Movement Disorders and director of Gossett Parkinson’s Disease Center, has been named the first holder of the William T. Gossett Chair in Neurology.
The $1 million gift will be placed into an account, and the interest generated will be overseen by Gorell to support research in Parkinson’s disease. Gossett, a prominent Detroit attorney, was former president of the American Bar Association. He died last year.
"This endowed chair will allow Dr. Gorell and his team of researchers to continue to make a real difference in the treatment and understanding of Parkinson’s disease," said Gail Warden, president and CEO of Henry Ford Health System.
In recent years, Gorell and his research team have found:
* Evidence that chronic occupational exposure to several metals such as copper, manganese lead and iron is associated with the disease;
* An association of Parkinson’s disease with occupational exposure to herbicides and insecticides;
* In the first population-based case control study of the relationship between smoking and Parkinson’s disease, that current heavy smokers were more protected than ex-smokers or non-smokers;
* Evidence that dietary intake of total fat and cholesterol, as well as a high intake of iron, were risk factors for the disease;
* Evidence that Lutein, a dietary antioxidant, was highly associated with Parkinson’s disease, possibly acting in a protective role; and
* A significant risk for Parkinson’s disease among first- and second-degree relatives of patients with the disease compared with those without the condition. These findings have provided a basis for continued study of the underlying mechanisms for Parkinson’s disease.
Stanford gets $75 million for stem cell center
Demian Bulwa, Chronicle Staff Writer
Atherton philanthropist and Business Wire founder Lorry Lokey is donating $75 million to the Stanford University School of Medicine to help build what may be the nation's largest center for stem cell research, school officials will announce today.
More Bay Area News
Lokey, who at age 81 has become one of the country's most generous givers, promised to give at least $33 million to the center in February 2007. At the time, the pledge was the largest in the medical school's history.
With today's announcement, Lokey more than doubles his commitment. School officials say he is the lead contributor for a $200 million stem cell research building that will break ground Oct. 27 and be finished in the summer of 2010.
In a statement released by the medical school, Lokey said stem cells would be "as significant as the silicon chip that created Silicon Valley," producing treatments for disease and saving lives.
He said he was driven to fund research after President Bush, in August 2001, forbid the use of federal funds for stem cell research that involved the destruction of human embryos.
"It's very narrow-minded," Lokey said of the position. "This is about lives being saved."
Stem cells have the potential to morph into virtually any of the specialized cells and tissues of the body. Researchers believe they may deliver therapies for diseases and medical problems such as cancer, Parkinson's disease, Alzheimer's disease, diabetes, spinal cord injuries and amyotrophic lateral sclerosis, often called Lou Gehrig's disease.
Some 350 scientists will work in the 200,000-square-foot Lorry I. Lokey Stem Cell Research Building, the school said.
The center is also getting a $43.6 million grant from the California Institute for Regenerative Medicine. The institute, the state's $3 billion stem cell funding unit, was created by a 2004 state initiative from research advocates opposed to Bush's restrictions.
The remainder of the building's cost will be covered by other private contributors and the university.
The medical school hopes the new center will bring more top scientists to Stanford's faculty and lead to collaborations with others. Plans call for 60 laboratory benches for visiting researchers.
"This is an extraordinary, wonderful gift," the medical school's dean, Philip Pizzo, said in an interview.
He said Lokey is "an individual of remarkable intelligence, integrity and commitment. He has become deeply interested in the stem cell research efforts going on not only at Stanford but internationally, and is eager to do whatever he can to push the discipline forward.
"This is a new area of science and it requires a critical mass of incredibly intelligent scientists and innovators," Pizzo said.
Lokey, a 1949 graduate of Stanford and a veteran journalist, started the Business Wire press-release service in 1961 in San Francisco. In 2006, he sold the company, which was valued at more than $500 million, to Warren Buffett's Berkshire Hathaway. He stayed on with the company initially before retiring this year.
Lokey has now given more than $500 million in personal donations, primarily to educational institutions, the medical school said.
According to the Chronicle of Philanthropy, Lokey was the nation's 23rd most generous giver last year, with $93.5 million in gifts. In 2006, he gave $163 million, ranking him 11th among donors.
Lokey gave $20 million to Stanford in 2000 to help build a research laboratory for the university's biological science and chemistry departments. He has given to Mills College in Oakland, the University of Oregon, several schools in Israel, and his own grammar school.
Education, Lokey said in a recent online chat with Chronicle of Philanthropy readers, is "the basis of civilization and the key to humankind's future welfare."
Atherton philanthropist and Business Wire founder Lorry Lokey is donating $75 million to the Stanford University School of Medicine to help build what may be the nation's largest center for stem cell research, school officials will announce today.
More Bay Area News
Lokey, who at age 81 has become one of the country's most generous givers, promised to give at least $33 million to the center in February 2007. At the time, the pledge was the largest in the medical school's history.
With today's announcement, Lokey more than doubles his commitment. School officials say he is the lead contributor for a $200 million stem cell research building that will break ground Oct. 27 and be finished in the summer of 2010.
In a statement released by the medical school, Lokey said stem cells would be "as significant as the silicon chip that created Silicon Valley," producing treatments for disease and saving lives.
He said he was driven to fund research after President Bush, in August 2001, forbid the use of federal funds for stem cell research that involved the destruction of human embryos.
"It's very narrow-minded," Lokey said of the position. "This is about lives being saved."
Stem cells have the potential to morph into virtually any of the specialized cells and tissues of the body. Researchers believe they may deliver therapies for diseases and medical problems such as cancer, Parkinson's disease, Alzheimer's disease, diabetes, spinal cord injuries and amyotrophic lateral sclerosis, often called Lou Gehrig's disease.
Some 350 scientists will work in the 200,000-square-foot Lorry I. Lokey Stem Cell Research Building, the school said.
The center is also getting a $43.6 million grant from the California Institute for Regenerative Medicine. The institute, the state's $3 billion stem cell funding unit, was created by a 2004 state initiative from research advocates opposed to Bush's restrictions.
The remainder of the building's cost will be covered by other private contributors and the university.
The medical school hopes the new center will bring more top scientists to Stanford's faculty and lead to collaborations with others. Plans call for 60 laboratory benches for visiting researchers.
"This is an extraordinary, wonderful gift," the medical school's dean, Philip Pizzo, said in an interview.
He said Lokey is "an individual of remarkable intelligence, integrity and commitment. He has become deeply interested in the stem cell research efforts going on not only at Stanford but internationally, and is eager to do whatever he can to push the discipline forward.
"This is a new area of science and it requires a critical mass of incredibly intelligent scientists and innovators," Pizzo said.
Lokey, a 1949 graduate of Stanford and a veteran journalist, started the Business Wire press-release service in 1961 in San Francisco. In 2006, he sold the company, which was valued at more than $500 million, to Warren Buffett's Berkshire Hathaway. He stayed on with the company initially before retiring this year.
Lokey has now given more than $500 million in personal donations, primarily to educational institutions, the medical school said.
According to the Chronicle of Philanthropy, Lokey was the nation's 23rd most generous giver last year, with $93.5 million in gifts. In 2006, he gave $163 million, ranking him 11th among donors.
Lokey gave $20 million to Stanford in 2000 to help build a research laboratory for the university's biological science and chemistry departments. He has given to Mills College in Oakland, the University of Oregon, several schools in Israel, and his own grammar school.
Education, Lokey said in a recent online chat with Chronicle of Philanthropy readers, is "the basis of civilization and the key to humankind's future welfare."
Forecast Insight - Parkinson's Disease - Market upgrade following evidence of disease slowing with Azilect - Companies and Markets adds new report
Introduction
Stimulated by evidence of disease slowing with Teva/Lundbeck´s Azilect (rasagiline), and successful reformulation of leading dopamine agonists, the Parkinson´s disease market value is set to grow by an compound annual growth rate (CAGR) of 10% over the next 5 years (20072013), peaking at $3.1 billion in 2013.
Scope
*This report gives a strategic analysis of the likely impact that recent events will have on the future Parkinson´s disease market.
*Includes Parkinson´s disease-specific sales forecasts for the key brands and pipeline agents in the seven major markets to 2017
*Provides a global market snapshot by including Parkinson´s disease-specific sales analysis for leading brands outside the seven major markets
*Key conclusions are supported by key opinion leader comment
Highlights
Datamonitor has upgraded its forecasts of Teva/Lundbeck´s Azilect (rasagiline) following clinical evidence of disease slowing. Over the next 5 years Azilect is expected to become a standard first-line therapy, with sales peaking in 2013, making it the leading market Parkinson´s disease drug at this time.
GlaxoSmithKline´s Requip XL (ropinirole extended-release) is set to become the market leading dopamine agonist in 2009. The convenience of once-daily dosing, supported by the theoretical clinical advantage of smoother dopamine receptor agonism, will drive switching from the parent compound and Boehringer Ingelheim´s Mirapex (pramipexole).
Datamonitor has downgraded its sales forecasts of UCB´s Neupro (rotigotine patch) as problems with crystallization of the active ingredient have led to supply issues at a critical phase in its lifecycle. Prescribers are now likely to switch to Requip XL, which arrived on the market at just the right time to take advantage of UCB´s misfortune.
Reasons to Purchase
*Understand the impact of recent and anticipated events on the Parkinson´s disease market during the forecast period 2008 to 2017
*Quantify the current size of the seven major markets and the trends in the rest of the world
*Assess the impact of events, such as patent expiries and new product launches, on the Parkinson´s disease-specific sales of key brands
Stimulated by evidence of disease slowing with Teva/Lundbeck´s Azilect (rasagiline), and successful reformulation of leading dopamine agonists, the Parkinson´s disease market value is set to grow by an compound annual growth rate (CAGR) of 10% over the next 5 years (20072013), peaking at $3.1 billion in 2013.
Scope
*This report gives a strategic analysis of the likely impact that recent events will have on the future Parkinson´s disease market.
*Includes Parkinson´s disease-specific sales forecasts for the key brands and pipeline agents in the seven major markets to 2017
*Provides a global market snapshot by including Parkinson´s disease-specific sales analysis for leading brands outside the seven major markets
*Key conclusions are supported by key opinion leader comment
Highlights
Datamonitor has upgraded its forecasts of Teva/Lundbeck´s Azilect (rasagiline) following clinical evidence of disease slowing. Over the next 5 years Azilect is expected to become a standard first-line therapy, with sales peaking in 2013, making it the leading market Parkinson´s disease drug at this time.
GlaxoSmithKline´s Requip XL (ropinirole extended-release) is set to become the market leading dopamine agonist in 2009. The convenience of once-daily dosing, supported by the theoretical clinical advantage of smoother dopamine receptor agonism, will drive switching from the parent compound and Boehringer Ingelheim´s Mirapex (pramipexole).
Datamonitor has downgraded its sales forecasts of UCB´s Neupro (rotigotine patch) as problems with crystallization of the active ingredient have led to supply issues at a critical phase in its lifecycle. Prescribers are now likely to switch to Requip XL, which arrived on the market at just the right time to take advantage of UCB´s misfortune.
Reasons to Purchase
*Understand the impact of recent and anticipated events on the Parkinson´s disease market during the forecast period 2008 to 2017
*Quantify the current size of the seven major markets and the trends in the rest of the world
*Assess the impact of events, such as patent expiries and new product launches, on the Parkinson´s disease-specific sales of key brands
PRF Announces new Parkinson Center of Excellence at USF
Larry Hoffheimer, Chairman of the Parkinson Research Foundation has announced that PRF has agreed to fund a new Parkinson’s disease Center of Excellence on the main campus of the University of South Florida. The $50,000 grant will support programs and services offered by USF to Parkinson patients and their caregivers primarily in the Tampa Bay area.
The PRF Center of Excellence is to expand clinical services, conduct clinical trials and support basic research in Parkinson’s disease. In addition, the PRF grant will support the establishment of a PRF Chapter serving the Tampa Bay region. The primary goal of the PRF Chapter will be to deliver the best care and information about Parkinson’s disease. Anticipated services of the PRF Tampa Chapter will include the presentation of patient conferences focusing on medical management and therapeutic interventions that improve the daily lives of patients. These include physical therapy, occupational therapy, speech therapy, exercise, nutrition, etc.
The PRF Board of Directors has appointed Dr. Sanchez-Ramos to serve as Medical Director of the PRF Center of Excellence and Dr. Theresa Zesiewicz to serve as Director of Clinical Research. Together they will co-direct a Tampa Bay PD Chapter.
The PRF will also establish a post-doctoral fellowship to train future generations of experts in Parkinson’s disease. Training will include the diagnosis and treatment of a wide range of movement disorders, with emphasis on Parkinson’s disease. The candidate will have the chance to work with both Dr. Sanchez-Ramos and Dr. Theresa Zesiewicz and to collaborate with neurosurgery in treating patients who require deep brain stimulation. In addition, the candidate will have the opportunity to work at least 2 days a week in basic research in the laboratory of Dr. Sanchez-Ramos, with a focus on stem cell biology and regenerative medicine. The training program will be tailored to the unique goals of the candidate; however, those individuals who want to publish both basic and clinical research papers are most likely to benefit from this program. The Parkinson Research Foundation Fellowship is geared for the individual who plans an academic career.
Dr. Juan Sanchez-Ramos, PhD, MD is Professor of Neurology at the University of South Florida in Tampa where he holds the Helen Ellis Endowed Chair for Parkinson’s disease Research. He earned a PhD degree in Pharmacology & Physiology from the University of Chicago and a medical degree from the University of Illinois. He is board certified in Neurology and fellowship-trained in Movement Disorders. In addition to attending patients with Parkinson’s Disease and related movement disorders, he directs a basic research laboratory with active projects in neurodegeneration, neurotoxicology and adult stem cell biology. Dr. Sanchez-Ramos also serves as Editor for PD Update and is Medical Director of the PRF.
Dr. Theresa Zesiewicz is a Professor of Neurology at USF and a Fellow of the American Academy of Neurology. She is the Director of Clinical Research for the PRF COE, and has 15 years experience as a movement disorders specialist. She is a fellowship-trained expert in Movement Disorders. She has a busy clinical practice in PD and related movement disorders on the North Campus at USF. A native of the New York metropolitan area, Dr. Zesiewicz earned her medical degree at the University of Medicine and Dentistry of New Jersey. She completed her residency and chief residency at State University of New York, in Brooklyn NY, followed by a 2-year fellowship in Parkinson's disease and movement disorders at USF in Tampa. Dr. Zesiewicz has written 6 books and numerous peer-reviewed articles in Parkinson’s Disease and Movement Disorders. She is a member of the Quality Standards Subcommittee of the American Academy of Neurology, and a reviewer for the National Medical Board in Neurology. Her professional interests include therapeutics for movement disorders including Parkinson's disease, essential tremor, ataxia, and dystonia.
Lise' earned her Bachelors Degree in Nursing for University of Tampa, and her Masters in Nursing at the University of South Florida. She has spent her entire career in the care of patients with neurological injuries and illness. The majority of her career has been in the area of neurorehabilitation, caring for patients with a wide variety of neurologic disorders such as multiple sclerosis, spinal cord injury, brain injury, stroke and Parkinson’s disease. She joined Department of Neurology at the University of South Florida in 2006 as nurse practitioner in the multiple sclerosis clinic. She has recently joined Dr. Theresa Zesiewicz and Dr. Juan Sanchez-Ramos in the Parkinson’s Research Foundation Center of Excellence at USF. Lise’ is board certified as an Adult Nurse Practitioner, and is a multiple sclerosis certified nurse. She has lectured both locally and nationally and is active in her community. She has authored several publications and had been sub-investigator on several clinical trials. She has received several honors such as Nurse of the Year at Tampa General Hospital, Physician’s Medical Staff Award, Outstanding Contribution to Spinal Cord Injury Nursing, and the "Catch the Spirit" Award from the National Multiple Sclerosis Society.
The Parkinson Research Foundation is a national organization with more than 60,000 contributors from nearly all fifty states. It was founded five years ago and has become a major contributor to providing greater understanding about Parkinson's disease by patients and physician alike.
The PRF Center of Excellence is to expand clinical services, conduct clinical trials and support basic research in Parkinson’s disease. In addition, the PRF grant will support the establishment of a PRF Chapter serving the Tampa Bay region. The primary goal of the PRF Chapter will be to deliver the best care and information about Parkinson’s disease. Anticipated services of the PRF Tampa Chapter will include the presentation of patient conferences focusing on medical management and therapeutic interventions that improve the daily lives of patients. These include physical therapy, occupational therapy, speech therapy, exercise, nutrition, etc.
The PRF Board of Directors has appointed Dr. Sanchez-Ramos to serve as Medical Director of the PRF Center of Excellence and Dr. Theresa Zesiewicz to serve as Director of Clinical Research. Together they will co-direct a Tampa Bay PD Chapter.
The PRF will also establish a post-doctoral fellowship to train future generations of experts in Parkinson’s disease. Training will include the diagnosis and treatment of a wide range of movement disorders, with emphasis on Parkinson’s disease. The candidate will have the chance to work with both Dr. Sanchez-Ramos and Dr. Theresa Zesiewicz and to collaborate with neurosurgery in treating patients who require deep brain stimulation. In addition, the candidate will have the opportunity to work at least 2 days a week in basic research in the laboratory of Dr. Sanchez-Ramos, with a focus on stem cell biology and regenerative medicine. The training program will be tailored to the unique goals of the candidate; however, those individuals who want to publish both basic and clinical research papers are most likely to benefit from this program. The Parkinson Research Foundation Fellowship is geared for the individual who plans an academic career.
Dr. Juan Sanchez-Ramos, PhD, MD is Professor of Neurology at the University of South Florida in Tampa where he holds the Helen Ellis Endowed Chair for Parkinson’s disease Research. He earned a PhD degree in Pharmacology & Physiology from the University of Chicago and a medical degree from the University of Illinois. He is board certified in Neurology and fellowship-trained in Movement Disorders. In addition to attending patients with Parkinson’s Disease and related movement disorders, he directs a basic research laboratory with active projects in neurodegeneration, neurotoxicology and adult stem cell biology. Dr. Sanchez-Ramos also serves as Editor for PD Update and is Medical Director of the PRF.
Dr. Theresa Zesiewicz is a Professor of Neurology at USF and a Fellow of the American Academy of Neurology. She is the Director of Clinical Research for the PRF COE, and has 15 years experience as a movement disorders specialist. She is a fellowship-trained expert in Movement Disorders. She has a busy clinical practice in PD and related movement disorders on the North Campus at USF. A native of the New York metropolitan area, Dr. Zesiewicz earned her medical degree at the University of Medicine and Dentistry of New Jersey. She completed her residency and chief residency at State University of New York, in Brooklyn NY, followed by a 2-year fellowship in Parkinson's disease and movement disorders at USF in Tampa. Dr. Zesiewicz has written 6 books and numerous peer-reviewed articles in Parkinson’s Disease and Movement Disorders. She is a member of the Quality Standards Subcommittee of the American Academy of Neurology, and a reviewer for the National Medical Board in Neurology. Her professional interests include therapeutics for movement disorders including Parkinson's disease, essential tremor, ataxia, and dystonia.
Lise' earned her Bachelors Degree in Nursing for University of Tampa, and her Masters in Nursing at the University of South Florida. She has spent her entire career in the care of patients with neurological injuries and illness. The majority of her career has been in the area of neurorehabilitation, caring for patients with a wide variety of neurologic disorders such as multiple sclerosis, spinal cord injury, brain injury, stroke and Parkinson’s disease. She joined Department of Neurology at the University of South Florida in 2006 as nurse practitioner in the multiple sclerosis clinic. She has recently joined Dr. Theresa Zesiewicz and Dr. Juan Sanchez-Ramos in the Parkinson’s Research Foundation Center of Excellence at USF. Lise’ is board certified as an Adult Nurse Practitioner, and is a multiple sclerosis certified nurse. She has lectured both locally and nationally and is active in her community. She has authored several publications and had been sub-investigator on several clinical trials. She has received several honors such as Nurse of the Year at Tampa General Hospital, Physician’s Medical Staff Award, Outstanding Contribution to Spinal Cord Injury Nursing, and the "Catch the Spirit" Award from the National Multiple Sclerosis Society.
The Parkinson Research Foundation is a national organization with more than 60,000 contributors from nearly all fifty states. It was founded five years ago and has become a major contributor to providing greater understanding about Parkinson's disease by patients and physician alike.
Tuesday, November 18, 2008
A long road
Bryn Williams was apprehensive when he first told his work colleagues he had Parkinson's disease last month. But their positive reaction has filled him with optimism for the future
When my consultant phoned me to tell me I had Parkinson's disease, the first question I asked was: "How long do I have?". Not "How long do I have ... to live?" or "How long do I have ... to wait for a second opinion?" but "How long do I have left at work?". My immediate concern was how I was going to foot the bills of the next 20 years. It was September 2007, I was 36, I had two daughters aged five and three, and I had just doubled my mortgage to refurbish our - now beautiful - home. My fears were financial, not physical.
Parkinson's disease is a progressive disorder in which the brain cells that produce a chemical called dopamine die for unknown reasons. When one part of the brain decides that a particular movement would be a good idea, it is dopamine that carries that message to another part of the brain and activates the motion. As the dopamine-producing cells die, dopamine levels drop and the message can't reach its destination. The intention to walk, for example, remains an intention and the person "freezes". Losing a few billion dopamine-producing cells doesn't actually kill you - but freezing in the path of an oncoming bus will.
If not being able to move out of the way of oncoming traffic isn't inconvenient enough, a multitude of unwanted signals still reach the limbs. Unchecked by the brain because there isn't enough dopamine to carry the "please don't do that" message you lose the ability to sit at rest and your limbs tremble, twitch, shake and shudder.
I am in the early days of my Parkinson's journey and my physical problems revolve around my right arm, which is particularly irritating as I am right-handed. The arm, particularly the hand, trembles which makes using a mouse frustrating. A twitch combined with an inadvertent button press has sent a few paragraphs to the recycle bin, a place I often feel like visiting myself. There is also slowness of movement, the forerunner of freezing. Slowness makes the co-ordination of my fingers tricky; my ability to write is depleted and my screen is littered with typos.
It is at work when I notice the physical aspects of my Parkinson's most. I am a patent attorney and most days I am at my desk drafting legal documents, writing letters or answering emails. I have to adopt a different way of working: I dictate more, I use my mouse left-handed and I make periodic bouts of attempting to write left-handed. As such, I no longer comment on the quality of my children's handwriting. "Show us how it's done, dad," they say. Little darlings.
Away from work the physical symptoms of my Parkinson's are less noticeable and with luck the problems will diminish once the medication kicks in, for a few years at least. I am currently building up to a therapeutic dose of a dopamine agonist, a chemical which mimics the action of dopamine in the brain.
Overwhelmingly, the issues I deal with at the moment are psychological. Questions constantly run through my mind about the condition's rate of progression. Every ache and pain is dissected; things ignored in the days before diagnosis are analysed to see if it is a sign of the dreaded progression. As I have said my problems are all right-sided, and my life will be much easier as long as they stay there. I live in daily fear of the condition spreading and the slightest twitch or wobble in my left hand causes a level of scrutiny of which Hercule Poirot would be proud.
Just this week my left arm started to shake when I was at my desk. I sat and watched my hand tremble for a couple of minutes, while taking deep breaths and telling myself this wasn't the end of the world. I then realised I was using my desk fan for the first time this year and, in fact, my entire desk was showing signs of depleted dopamine levels. Generally speaking, in contrast to the physical symptoms, my work provides relief from this constant round of self-interrogation and analysis, and it is very easy to immerse myself in the detail of my job and escape the shadow that stalks me.
One of the biggest battles that people with Parkinson's face is against depression. When I first realised I had Parkinson's I didn't know what it meant. The journey from ignorant to informed takes in a lot of pretty depressing websites. But I believe the way to avoid depression is to retain hope and retaining hope is the key to living with Parkinson's.
My brother and I made a decision a few months after my diagnosis to raise awareness of Parkinson's disease and provide a website that offers this hope to sufferers (wobblywilliams.com). To achieve the maximum impact, this decision meant laying myself bare to the public; a message carries much more weight if it is expressed by the person holding the short straw.
As I was in possession of the short straw, I decided to tell my work colleagues and my clients prior to promoting the website and publicising my condition. This was difficult. I had already been through a couple of rounds when informing my family and friends. By far the worst way of breaking the news is telling people to their face. The combination of shock, sympathy and confusion does strange things to a person's expression, a bit like a new parent changing their first nappy.
I told the managing partner the day I was diagnosed back in September, but the majority of my colleagues just assumed I had been drinking too much. Last month I broke the news to them in an email, setting out the facts and confirming that, as long as I avoided crossing roads, I wasn't in mortal danger. I took a similar approach with my clients.
The reaction of people has varied from ignoring the email was ever sent and never commenting on it (which is fine with me) to seeking me out to envelope me in a rib-breaking hug (punctured lungs is another cause of Parkinson's-related death). My colleagues have taken on board what I am trying to achieve through the website and have signed up to take part in the Great Scottish Run and walk the last day of the inaugural Wobbly Williams Walk in September. The walk is over the 93-mile West Highland Way and has the goals of raising awareness of Parkinson's and to raise funds to find the elusive cure (what do you mean, vested interest?).
My colleagues have been very positive and they fill me with optimism for the future. A letter of unequivocal support from the management board helped alleviate the fear which accompanied my diagnosis. I received this letter two weeks after diagnosis and its value in helping me retain hope, at a time when I could have drowned in self-pity, was immeasurable.
My employer and my colleagues play a major role in my life and their reaction to my predicament has eased my journey. I have always laughed and, with the support of my colleagues, family and friends, I still can. After all, laughter is the best medicine.
When my consultant phoned me to tell me I had Parkinson's disease, the first question I asked was: "How long do I have?". Not "How long do I have ... to live?" or "How long do I have ... to wait for a second opinion?" but "How long do I have left at work?". My immediate concern was how I was going to foot the bills of the next 20 years. It was September 2007, I was 36, I had two daughters aged five and three, and I had just doubled my mortgage to refurbish our - now beautiful - home. My fears were financial, not physical.
Parkinson's disease is a progressive disorder in which the brain cells that produce a chemical called dopamine die for unknown reasons. When one part of the brain decides that a particular movement would be a good idea, it is dopamine that carries that message to another part of the brain and activates the motion. As the dopamine-producing cells die, dopamine levels drop and the message can't reach its destination. The intention to walk, for example, remains an intention and the person "freezes". Losing a few billion dopamine-producing cells doesn't actually kill you - but freezing in the path of an oncoming bus will.
If not being able to move out of the way of oncoming traffic isn't inconvenient enough, a multitude of unwanted signals still reach the limbs. Unchecked by the brain because there isn't enough dopamine to carry the "please don't do that" message you lose the ability to sit at rest and your limbs tremble, twitch, shake and shudder.
I am in the early days of my Parkinson's journey and my physical problems revolve around my right arm, which is particularly irritating as I am right-handed. The arm, particularly the hand, trembles which makes using a mouse frustrating. A twitch combined with an inadvertent button press has sent a few paragraphs to the recycle bin, a place I often feel like visiting myself. There is also slowness of movement, the forerunner of freezing. Slowness makes the co-ordination of my fingers tricky; my ability to write is depleted and my screen is littered with typos.
It is at work when I notice the physical aspects of my Parkinson's most. I am a patent attorney and most days I am at my desk drafting legal documents, writing letters or answering emails. I have to adopt a different way of working: I dictate more, I use my mouse left-handed and I make periodic bouts of attempting to write left-handed. As such, I no longer comment on the quality of my children's handwriting. "Show us how it's done, dad," they say. Little darlings.
Away from work the physical symptoms of my Parkinson's are less noticeable and with luck the problems will diminish once the medication kicks in, for a few years at least. I am currently building up to a therapeutic dose of a dopamine agonist, a chemical which mimics the action of dopamine in the brain.
Overwhelmingly, the issues I deal with at the moment are psychological. Questions constantly run through my mind about the condition's rate of progression. Every ache and pain is dissected; things ignored in the days before diagnosis are analysed to see if it is a sign of the dreaded progression. As I have said my problems are all right-sided, and my life will be much easier as long as they stay there. I live in daily fear of the condition spreading and the slightest twitch or wobble in my left hand causes a level of scrutiny of which Hercule Poirot would be proud.
Just this week my left arm started to shake when I was at my desk. I sat and watched my hand tremble for a couple of minutes, while taking deep breaths and telling myself this wasn't the end of the world. I then realised I was using my desk fan for the first time this year and, in fact, my entire desk was showing signs of depleted dopamine levels. Generally speaking, in contrast to the physical symptoms, my work provides relief from this constant round of self-interrogation and analysis, and it is very easy to immerse myself in the detail of my job and escape the shadow that stalks me.
One of the biggest battles that people with Parkinson's face is against depression. When I first realised I had Parkinson's I didn't know what it meant. The journey from ignorant to informed takes in a lot of pretty depressing websites. But I believe the way to avoid depression is to retain hope and retaining hope is the key to living with Parkinson's.
My brother and I made a decision a few months after my diagnosis to raise awareness of Parkinson's disease and provide a website that offers this hope to sufferers (wobblywilliams.com). To achieve the maximum impact, this decision meant laying myself bare to the public; a message carries much more weight if it is expressed by the person holding the short straw.
As I was in possession of the short straw, I decided to tell my work colleagues and my clients prior to promoting the website and publicising my condition. This was difficult. I had already been through a couple of rounds when informing my family and friends. By far the worst way of breaking the news is telling people to their face. The combination of shock, sympathy and confusion does strange things to a person's expression, a bit like a new parent changing their first nappy.
I told the managing partner the day I was diagnosed back in September, but the majority of my colleagues just assumed I had been drinking too much. Last month I broke the news to them in an email, setting out the facts and confirming that, as long as I avoided crossing roads, I wasn't in mortal danger. I took a similar approach with my clients.
The reaction of people has varied from ignoring the email was ever sent and never commenting on it (which is fine with me) to seeking me out to envelope me in a rib-breaking hug (punctured lungs is another cause of Parkinson's-related death). My colleagues have taken on board what I am trying to achieve through the website and have signed up to take part in the Great Scottish Run and walk the last day of the inaugural Wobbly Williams Walk in September. The walk is over the 93-mile West Highland Way and has the goals of raising awareness of Parkinson's and to raise funds to find the elusive cure (what do you mean, vested interest?).
My colleagues have been very positive and they fill me with optimism for the future. A letter of unequivocal support from the management board helped alleviate the fear which accompanied my diagnosis. I received this letter two weeks after diagnosis and its value in helping me retain hope, at a time when I could have drowned in self-pity, was immeasurable.
My employer and my colleagues play a major role in my life and their reaction to my predicament has eased my journey. I have always laughed and, with the support of my colleagues, family and friends, I still can. After all, laughter is the best medicine.
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