Dec 26 2008 by Lisa Boyle
PARKINSON’S disease sufferers are crusading for a specialist nurse to be based in Ayr.
And they have taken their campaign all the way to the Scottish Parliament.
It comes after the massive success of a pilot project over the last year.
Specialist nurse Paula Hewat has made an invaluable difference to the lives of Parkinson’s sufferers up and down Ayrshire.
It is hoped that health bosses will listen to those sufferers and make Paula’s position permanent. And the Parkinson’s Disease Society (PDS) have even vowed to fund Paula’s post for two years if her job is here for good.
The group put their case to MSPs at Holyrood last week in a bid to get as much support as possible.
Eleanor Meikle of the Ayrshire branch explained: “People affected by Parkinson's in Ayrshire know how terrifying it can be when accurate medication is not given on time. The balance of chemicals in their brains can become severely disrupted – leading to symptoms including being unable to move, speak, eat or swallow, uncontrolled movements and hallucinations.
“It can take weeks to restore effective symptom control.”
And Eleanor described the difference Paula has made: “She has supported people to get their drugs on time, and we really feel that the situation is improving.
“Paula has made such a difference to people with Parkinson's who live in South and East Ayrshire. We really hope that Ayrshire and Arran Health Board will make her post permanent.”
MSPs Cathy Jamieson and John Scott were among those who heard what the PDS had to say in Edinburgh.
Mr Scott reckons the health board could reap big rewards from having a permanent specialist nurse in Ayrshire.
He said: “Because she is there, the consultant has more time for the most serious cases, and this is certainly saving NHS Ayrshire and Arran money.”
Ms Jamieson added: “"It is very clear from speaking to people with Parkinson's what a difference Paula has made.
“I'm glad to add my voice to those of the families affected.”
Saturday, December 27, 2008
Sunday, December 21, 2008
Parkinson’s patient completes bike marathon
By Kim Nguyen, Staff writer
(Created: Saturday, December 13, 2008 5:52 PM CST)
In July 2008, Lori McWilliams’ life turned upside-down after doctors diagnosed her with Parkinson’s disease.
At 45, McWilliams felt she was at the top of her game. She loved her job as a kindergarten teacher at McKinney Christian Academy. With a degree in deaf education, she was very active in the deaf community and taught sign language.
“I was overwhelmed with sadness. I lingered on things that I would not be able to do in the future,” the Allen resident said. “I still wanted to be a good mother and good grandmother. I thought, ‘Why me?’”
With the support of her family and friends, she accepted the cold, hard truth and became determined to continue doing everything she loved despite her diagnosis. She immediately cut back on stress, changed her eating patterns, began exercising and started taking the medications to combat Parkinson’s disease.
“It took a lot of support from my husband and family, but mostly self-determination,” McWilliams said. “I tried not to complain about it and didn’t let it bring me down. Hopefully, I have encouraged my children to fight to overcome their obstacles in life.”
In April, McWilliams was in New York as part of a book-launch campaign for “Proud Hands: Personal Victories with Parkinson’s - A Show of Hands,” a collection of success stories from people diagnosed with Parkinson’s disease. Teva Neuroscience, Inc. and the American Parkinson’s Disease Association (APDA) partnered to compile the stories for the book. McWilliams is one of the featured stories.
Another of the Parkinson’s patients featured in the book suggested to McWilliams to participate in the El Tour de Tucson bicycling marathon. She immediately signed up to ride on a tandem bicycle with her husband.
McWilliams' determination climaxed as she and her husband took part in the 26th annual University Medical Center El Tour de Tucson in November. Riding alongside the Teva Neuroscience team supporting the Arizona Chapter of the APDA, the McWilliamses completed the 35-mile bike journey.
“It was so exhilarating to cross the finish line,” McWilliams said. “I felt awesome and so positive, especially because we were riding to raise awareness of Parkinson’s.”
McWilliams was so pumped after finishing the marathon that she wanted to go again.
“I have this new motto: I may have Parkinson’s disease, but Parkinson’s disease does not have me,” McWilliams said. “It may take a while to overcome the shock, but never give up.”
According to the American Parkinson’s Disease Association, Parkinson’s disease (PD) was first described in 1817 by James Parkinson, in An Essay on the Shaking Palsy. It is a neurodegenerative disease, meaning it is caused by degeneration, or dysfunction and death, of neurons within the brain. Parkinson’s causes motor and non-motor symptoms.
The disease is believed to affect approximately one million people in the United States. Misdiagnosis of Parkinson’s is common, however, so this figure is not precise. The likelihood of developing the disease increases with age, typically beginning in people between the ages of 50- 60, and slowly progresses with increasing age. The average age of onset is 62.4 years. Onset before age 30 is rare, but up to 10 percent of cases begin by age 40.
(Created: Saturday, December 13, 2008 5:52 PM CST)
In July 2008, Lori McWilliams’ life turned upside-down after doctors diagnosed her with Parkinson’s disease.
At 45, McWilliams felt she was at the top of her game. She loved her job as a kindergarten teacher at McKinney Christian Academy. With a degree in deaf education, she was very active in the deaf community and taught sign language.
“I was overwhelmed with sadness. I lingered on things that I would not be able to do in the future,” the Allen resident said. “I still wanted to be a good mother and good grandmother. I thought, ‘Why me?’”
With the support of her family and friends, she accepted the cold, hard truth and became determined to continue doing everything she loved despite her diagnosis. She immediately cut back on stress, changed her eating patterns, began exercising and started taking the medications to combat Parkinson’s disease.
“It took a lot of support from my husband and family, but mostly self-determination,” McWilliams said. “I tried not to complain about it and didn’t let it bring me down. Hopefully, I have encouraged my children to fight to overcome their obstacles in life.”
In April, McWilliams was in New York as part of a book-launch campaign for “Proud Hands: Personal Victories with Parkinson’s - A Show of Hands,” a collection of success stories from people diagnosed with Parkinson’s disease. Teva Neuroscience, Inc. and the American Parkinson’s Disease Association (APDA) partnered to compile the stories for the book. McWilliams is one of the featured stories.
Another of the Parkinson’s patients featured in the book suggested to McWilliams to participate in the El Tour de Tucson bicycling marathon. She immediately signed up to ride on a tandem bicycle with her husband.
McWilliams' determination climaxed as she and her husband took part in the 26th annual University Medical Center El Tour de Tucson in November. Riding alongside the Teva Neuroscience team supporting the Arizona Chapter of the APDA, the McWilliamses completed the 35-mile bike journey.
“It was so exhilarating to cross the finish line,” McWilliams said. “I felt awesome and so positive, especially because we were riding to raise awareness of Parkinson’s.”
McWilliams was so pumped after finishing the marathon that she wanted to go again.
“I have this new motto: I may have Parkinson’s disease, but Parkinson’s disease does not have me,” McWilliams said. “It may take a while to overcome the shock, but never give up.”
According to the American Parkinson’s Disease Association, Parkinson’s disease (PD) was first described in 1817 by James Parkinson, in An Essay on the Shaking Palsy. It is a neurodegenerative disease, meaning it is caused by degeneration, or dysfunction and death, of neurons within the brain. Parkinson’s causes motor and non-motor symptoms.
The disease is believed to affect approximately one million people in the United States. Misdiagnosis of Parkinson’s is common, however, so this figure is not precise. The likelihood of developing the disease increases with age, typically beginning in people between the ages of 50- 60, and slowly progresses with increasing age. The average age of onset is 62.4 years. Onset before age 30 is rare, but up to 10 percent of cases begin by age 40.
Tuesday, December 16, 2008
Parkinson's disease affects more than just the body
Washington, Dec 15 (IANS) Parkinson's disease affects 6.3 million people worldwide with 40 percent of its patients not only suffering physical problems but also developing changes in thought, behaviour and judgment, says a medical expert.
In more advanced stages, these symptoms include hallucinations and paranoid delusions where they become distrustful of even their closest friends and family members.
"While the physical manifestations of Parkinson's disease are difficult to deal with, the changes in thought, behaviour and judgment strain the bonds between patients and their care givers and families," said Bernard Ravina, director of the Movement and Inherited Neurological Disorders Unit at the University of Rochester, New York.
According to a recent online survey, over a third of those attending to patients of Parkinson's are unaware that changes in thought, behaviour, and judgment can accompany the disease.
"As a registered nurse (RN), I was prepared for the physical problems with my husband's Parkinson's disease but, despite my job, I was totally unprepared for the psychiatric issues," said Carol McLain, a care giver who took the survey.
"It's the non-physical symptoms of the disease that are often most devastating for both the patient and care giver. As the patient's mental health deteriorates, the family often has to make the painful and expensive decision of moving the patient into a nursing home," said Ravina.
There are currently no approved treatments for these particular non-physical symptoms of Parkinson's disease, according to a Rochester release.
Nevertheless, doctors often resort to the use of potent anti-psychotic drugs to treat these symptoms even though these drugs sometimes have serious side effects, particularly in the elderly, including worsening of motor skills, excessive sleepiness, increased infections, stroke, and sudden death in some patients.
IANS
In more advanced stages, these symptoms include hallucinations and paranoid delusions where they become distrustful of even their closest friends and family members.
"While the physical manifestations of Parkinson's disease are difficult to deal with, the changes in thought, behaviour and judgment strain the bonds between patients and their care givers and families," said Bernard Ravina, director of the Movement and Inherited Neurological Disorders Unit at the University of Rochester, New York.
According to a recent online survey, over a third of those attending to patients of Parkinson's are unaware that changes in thought, behaviour, and judgment can accompany the disease.
"As a registered nurse (RN), I was prepared for the physical problems with my husband's Parkinson's disease but, despite my job, I was totally unprepared for the psychiatric issues," said Carol McLain, a care giver who took the survey.
"It's the non-physical symptoms of the disease that are often most devastating for both the patient and care giver. As the patient's mental health deteriorates, the family often has to make the painful and expensive decision of moving the patient into a nursing home," said Ravina.
There are currently no approved treatments for these particular non-physical symptoms of Parkinson's disease, according to a Rochester release.
Nevertheless, doctors often resort to the use of potent anti-psychotic drugs to treat these symptoms even though these drugs sometimes have serious side effects, particularly in the elderly, including worsening of motor skills, excessive sleepiness, increased infections, stroke, and sudden death in some patients.
IANS
Friday, December 12, 2008
An amazing attitude
The cover article of the December 8 issue of People magazine is about Michael J. Fox. Many people remember him as the wise-cracking, Reagan-worshipping, conservative Republican teenager in Family Ties, or perhaps from his Back To The Future movies or his mid-90s role in Spin City. This article, however, was about the ten years since he shared with the world that he has Parkinson’s disease.
What was amazing to me was the attitude he has. You can read the article for all the details about the disease and the trials and tribulations it causes him. There also is a nice piece about his wife and four children. What I want to share is one of his quotes about his life and his circumstances.
In a section about the medications he has to take every couple of hours, he commented that having Parkinson’s “is part of an amazing life. And it’s not an “otherwise’ amazing life,” he said. It’s part of what makes my life amazing.”
Read that again. He did not say that he has an amazing life in spite of Parkinson’s. He did not say he had an amazing life until he discovered he had Parkinson’s. He did not say that he has an amazing life except or the Parkinson’s. He said that Parkinson’s is part of what makes his life amazing.
What would be possible if we looked at our difficulties that way? What if we said, “My [fill in the blank problem] is part of what makes my life amazing.” Try it. Every day.
For more information about Parkinson’s disease or how you can help, visit the Michael J. Fox Foundation for Parkinson’s Research website.
What was amazing to me was the attitude he has. You can read the article for all the details about the disease and the trials and tribulations it causes him. There also is a nice piece about his wife and four children. What I want to share is one of his quotes about his life and his circumstances.
In a section about the medications he has to take every couple of hours, he commented that having Parkinson’s “is part of an amazing life. And it’s not an “otherwise’ amazing life,” he said. It’s part of what makes my life amazing.”
Read that again. He did not say that he has an amazing life in spite of Parkinson’s. He did not say he had an amazing life until he discovered he had Parkinson’s. He did not say that he has an amazing life except or the Parkinson’s. He said that Parkinson’s is part of what makes his life amazing.
What would be possible if we looked at our difficulties that way? What if we said, “My [fill in the blank problem] is part of what makes my life amazing.” Try it. Every day.
For more information about Parkinson’s disease or how you can help, visit the Michael J. Fox Foundation for Parkinson’s Research website.
Sunday, December 7, 2008
Sir Michael Parkinson appointed NHS dignity ambassador
December 5, 2008
David Rose
London Patients are being encouraged to post candid online reviews of the successes and failings of NHS care in an attempt to improve standards. The Government has asked Sir Michael Parkinson, the chat-show host, to act as an ambassador for its “dignity in care” campaign to establish how well hospitals throughout England look after patients, in particular elderly people. Ministers say they want to know if patients were treated with dignity and respect, about cleanliness and the nature of staff teamwork. Comments should be posted on the NHS Choices website, www.nhs.uk.
The health ministers Phil Hope and Lord Darzi of Denham encouraged feedback at a visit to the Royal Marsden Hospital, London, which consistently receives top ratings from the official regulator, the Healthcare Commission.
David Rose
London Patients are being encouraged to post candid online reviews of the successes and failings of NHS care in an attempt to improve standards. The Government has asked Sir Michael Parkinson, the chat-show host, to act as an ambassador for its “dignity in care” campaign to establish how well hospitals throughout England look after patients, in particular elderly people. Ministers say they want to know if patients were treated with dignity and respect, about cleanliness and the nature of staff teamwork. Comments should be posted on the NHS Choices website, www.nhs.uk.
The health ministers Phil Hope and Lord Darzi of Denham encouraged feedback at a visit to the Royal Marsden Hospital, London, which consistently receives top ratings from the official regulator, the Healthcare Commission.
Tuesday, December 2, 2008
Spelling the end of Parkinson's
By Steve Hubrecht
Sharon Crawford-MacKay's father used to walk across the room to avoid disabled people. That changed when he was diagnosed with Parkinson's disease.
Crawford-MacKay said her father had a terrible time adjusting.
"We live in a world where we like everything perfect," said Crawford-MacKay, and people with Parkinson's don't fit that image.
"We haven't adapted and dealt with (Parkinson's) like we should," she said.
Parkinson's is a neurological disease that results in loss of motor skills. Its exact cause isn't known, but symptoms include stiff muscles, restricted ability to move, balance problems and tremors.
Last Saturday, Crawford-MacKay, 62, joined participants and a handful of volunteer judges and organizers at the third-annual Spell the End of Parkinson's, a fundraising Scrabble tournament. The event was held at St. George Catholic Church on Commissioners Road.
The tournament brought in $8,267 in pledges from 26 participants.
Over the day each person played five games of Scrabble. Several of the Scrabble players had Parkinson's. Any challenges were settled by Will Nedriger, one of the volunteer judges.
Nedriger, 16, is the London Scrabble Club champion. After playing 15 games a week for the past couple of years he is very close to being rated as a National Scrabble Association expert.
Eileen Wood, 73, was diagnosed with Parkinson's four years ago. Sometimes she becomes so stiff that she has to crawl to get out of her bathtub. Wood loves to play Scrabble-even though she considers herself a novice-because it keeps her mind active.
Wood said the tournament is important not only for raising money, but also awareness. Other diseases, such as breast cancer, are more glamorous and Parkinson's doesn't get noticed, she said.
Dawn Porter, 58, another Scrabble player, has been diagnosed with Parkinson's for 10 years. She also thinks Parkinson's doesn't get as much attention as it should. "People don't know the scope of the disease," Porter said.
People with Parkinson's don't socialize because they're worried about what others will think, she said. Unlike those who stay isolated, Porter is determined to keep active socially.
"I'm not going to waste the good days worrying about what's going to come in the future," she said.
Crawford-MacKay, who is the director of the London Scrabble Club, has been playing competitive Scrabble for 10 years. She jumped at the opportunity to organize a Scrabble fundraising event when approached by the Parkinson Society of Canada.
Andre Motuzas, 36, the communication coordinator for the society, said there are too many walking or running events, so the Scrabble tournament is something different.
Motuzas was very pleased with the success of the event. "The community did a great job," he said.
Sharon Crawford-MacKay's father used to walk across the room to avoid disabled people. That changed when he was diagnosed with Parkinson's disease.
Crawford-MacKay said her father had a terrible time adjusting.
"We live in a world where we like everything perfect," said Crawford-MacKay, and people with Parkinson's don't fit that image.
"We haven't adapted and dealt with (Parkinson's) like we should," she said.
Parkinson's is a neurological disease that results in loss of motor skills. Its exact cause isn't known, but symptoms include stiff muscles, restricted ability to move, balance problems and tremors.
Last Saturday, Crawford-MacKay, 62, joined participants and a handful of volunteer judges and organizers at the third-annual Spell the End of Parkinson's, a fundraising Scrabble tournament. The event was held at St. George Catholic Church on Commissioners Road.
The tournament brought in $8,267 in pledges from 26 participants.
Over the day each person played five games of Scrabble. Several of the Scrabble players had Parkinson's. Any challenges were settled by Will Nedriger, one of the volunteer judges.
Nedriger, 16, is the London Scrabble Club champion. After playing 15 games a week for the past couple of years he is very close to being rated as a National Scrabble Association expert.
Eileen Wood, 73, was diagnosed with Parkinson's four years ago. Sometimes she becomes so stiff that she has to crawl to get out of her bathtub. Wood loves to play Scrabble-even though she considers herself a novice-because it keeps her mind active.
Wood said the tournament is important not only for raising money, but also awareness. Other diseases, such as breast cancer, are more glamorous and Parkinson's doesn't get noticed, she said.
Dawn Porter, 58, another Scrabble player, has been diagnosed with Parkinson's for 10 years. She also thinks Parkinson's doesn't get as much attention as it should. "People don't know the scope of the disease," Porter said.
People with Parkinson's don't socialize because they're worried about what others will think, she said. Unlike those who stay isolated, Porter is determined to keep active socially.
"I'm not going to waste the good days worrying about what's going to come in the future," she said.
Crawford-MacKay, who is the director of the London Scrabble Club, has been playing competitive Scrabble for 10 years. She jumped at the opportunity to organize a Scrabble fundraising event when approached by the Parkinson Society of Canada.
Andre Motuzas, 36, the communication coordinator for the society, said there are too many walking or running events, so the Scrabble tournament is something different.
Motuzas was very pleased with the success of the event. "The community did a great job," he said.
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