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| Shown in the front row are Josh Zastrow, senior patrol leader, and Aaron Swanson, scoutmaster for Boy Scout Troop 829. In the back row are Bob and Lori Russell, hosts for the first Youngstown Chili/Cornbread Cookoff and Basket Auction this Sunday. (Photo by Bob Russell)
Youngstown resident Bob Russell has a story to tell about Parkinson's disease. It's not actor Michael J. Fox's story or the late and "greatest" boxer Muhammad Ali's story.
It's his.
It's why he and his wife, Lori, have organized the first Chili/Cornbread Cookoff and Basket Auction to be held this Sunday, Oct. 2, at First Presbyterian Church, 100 Church St., Youngstown.
Russell, longtime Lewiston-Porter schools stage manager, local Scout leader and home builder/remodeler, was diagnosed with early onset Parkinson's more than 12 years ago at the age of 45. He is the father of five children, ranging in age from 30 to 23, all Lewiston-Porter High School and college graduates.
Russell will add proceeds from the cookoff to the $7,000 he and his team raised for the National Parkinson Foundation of Western New York's Moving Day on Sept. 11 in Buffalo. He's already listed as the top collector for that event.
Parkinson's is a progressive degenerative neurological disease of the brain.
"Most people and a surprising number of doctors know very little about this disease that can't be diagnosed clinically and has no cure ... yet!" Russell said. "I won't stop telling my story until I can start by saying, 'I used to have Parkinson's. ...' "
The Russells are challenging those who believe their recipes are the best to prove it by bringing a pot of chili or pan of cornbread to the church from 4:30-5 p.m. Sunday. Entry in the contest is free.
Beginning at about 5:15 p.m., the public can sample the contestants' offerings for $10 a person or $25 per family.
Check out the basket auction starting at 4:30 p.m. Donations of additional baskets also can be dropped off. Basket auction tickets are $5 a sheet; 50-50 tickets are $1, or an arm's-length for $10.
There also will be a silent auction of artwork donated by local artists. Auction drawings begin at 6:30 p.m. and those with entries need not be present to win.
Lori Russell has supported her husband's fight against Parkinson's ever since he was diagnosed six months after their wedding in 2004. She is active in planning and publicity for the Buffalo Moving Day and points out 60 percent of the funds go for local support systems right here in WNY, while the other 40 percent funds research to find a cure for this terrible disease.
The chili cookoff event was her idea.
"I want to raise awareness so that people can be diagnosed earlier and get the proper care sooner," she said. "Not only that, I love basket auctions!"
Western New York has a significantly higher rate of Parkinson's than normal, according to Bob Russell. In addition, a nationwide push is underway to get firefighters involved in the fight against Parkinson's, because they are up to 10 times more likely to contract this disease due to the inhalation of toxins on the job.
Five-alarm chili, anyone?
Russell isn't sure what caused his own encounter with the disease. Exposure to photo chemicals or pressure-treated lumber could have played a part, or even the fact that he has lived and worked downstream from chemical and nuclear waste sites for 35 years.
"The disease took away the job that I loved; it continues to steal my talents right from under me; it destroyed my plans for retirement; but, most of all, it wastes my time. There is nothing more precious in life than time," he said.
Faith in God, support of family and friends, a sense of humor and a quest for information and guidance have brought him through the fight thus far, Russell said.
After he could no longer do his job without help, he took an early disability retirement. Since then, he has been active with the NPFWNY. This group can answer questions on Parkinson's, sponsors support groups for both caregivers and patients, and offers a variety of therapist and educational symposiums. NPFWNY has held Moving Day, designed to keep Parkinson's patients active, as well as raise funds, for the past five years.
For more information on the cookoff, contact the Russells at 716-534-3601 or 716-745-7547.
Russell produced a video on the 2015 Moving Day in Buffalo, where he was honored as the WNY "face" of Parkinson's disease. The video can be seen at www.youtube.com/watch?v=wuwLFZK994M.
To contact the NPFWNY for more information on Parkinson's disease, call 716-449-3795, or email cjamele@npfwny.org. National headquarters offers a helpline at 1-800-473-4636, or email inquiries to contact@parkinson.org.
http://www.wnypapers.com/news/article/featured/2016/10/01/126131/heats-on-in-youngstown-chili-cook-off-aids-parkinsons-fight
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Saturday, October 1, 2016
Heat's on in Youngstown: Chili cook-off aids Parkinson's fight
October 1, 2016, By Susan Mikyla Campbell
Parkinson's Disease — a drain on the psyche | Bob Shryock Column
October 01, 2016
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| Bob Shryock |
Tubby Raymond, former head football coach at the University of Delaware, had a patented expression he used to describe a slow and painful loss:
"It's like being bitten to death by a duck." How's that for a graphic portrayal?
The analogy was clear and excruciatingly accurate. And, unfortunately, it translates to the way I'm feeling these days as I battle the sinister disease Parkinson's.
Well-wishers continue to encourage me to keep fighting, and, for the most part, I do just that. But the disease is a lousy way to squirm out of helping my wife with the housework. And the alternative is unthinkable.
The fight is long and arduous and mentally draining because there is no cure and little hope for progress in that area in my lifetime. It is said "Parkinson's won't kill you." And while that's refreshing to hear, the cumulative effects are, quite candidly, a drain on the psyche. The buzz word appears in far too many obituaries to suit me.
I was diagnosed with the disease 17 years ago after enduring a litany of office visits to Parkinson's specialists and "essential tremor" explanations.
I also endured DBS (deep brain stimulation) surgery at Pennsylvania Hospital in 2003 to successfully eradicate the tremors that threatened to compromise my lifestyle.
The surgery didn't hurt — you're only mildly sedated and awake for most of it.
But while the procedure qualifies as a minor miracle, and continues to do so, I'm now linked indefinitely to a post-op battery-operated device that requires daily charging, or, if not properly tuned, will throw the user into a full-throttle abyss within a few days. When re-charged, there is a euphoric tingling sensation that permeates.
On the negative side, I find myself falling too frequently, usually forward, and have cuts and bruises on my knees and legs to show for it. For the most part, I manage to avoid the helter-skelter "welcome home, Bob" attacks staged by the dogs, although one failed defense resulted in my worst singular fall on steps bridging our bi-level. In that case, I broke a finger when I used my left hand to brace myself against the fall. That wasn't too smart, a lefthander breaking a finger on his left hand. While my finger heals, I've been attempting to type with my right hand. That's a lot of fun.
So I limp around with the aid a cane and tri-pod walker and have learned to avoid most perils that a Parkinson's patient routinely faces on a daily basis.
I still miss driving a car, although convinced taking myself off the road absolutely was the right thing to do.
On the plus side, my appetite is very good and I sleep well an average of nine hours a night.
My caregiving wife should have been a nurse. And my support base is terrific. I enjoy it when Jim Clark, who has had a far worse year than I, can easily figure out ways to keep me laughing at myself.
Every time my morale dips, I think of those whose physical maladies far out-weigh mine.
My struggles are intensifying. But as long as I'm able to wake up and write, how taxing can life be?
Bob Shryock may be reached at bshryock@njadvancemedia.com. Find NJ.com on Facebook.
http://www.nj.com/south-jersey-voices/index.ssf/2016/10/parkinsons_disease_a_drain_on.html
Jeane Graves Charity Cupcake Challenge
When:
10/16/2016 at 2:00 pm EDT
Where:
The Heritage Center
2140 14th Avenue
Vero Beach, FL 32960
United States
It is year number SEVEN and time for the Jeane Graves Charity Cupcake Challenge; a competitive bakeoff to raise money for charities’, including The Michael J. Fox Foundation, The event is Sunday October 16th at 2:00pm at The Heritage Center in downtown Vero Beach.
"Raising the Bar to End Parkinson's" presented by Pedaling 4 Parkinson's and Team Fox
Oct.1, 2016
Pedaling 4 Parkinson's and Team Fox invite you to join PS 303 Restaurant + Bar for their grand opening at 1959 16th Street in Downtown Denver. This private event benefiting The Michael J. Fox Foundation is held on Wednesday, October 12th, 2016.
100% of event proceeds will go straight to funding Parkinson's research programs.
Be the first to get a sneak peak of their chef-driven menu, exclusive craft beers & seasonal artisan cocktails.
Tickets are $50 (fully tax deductible) and include entry, drinks & bites from 6:30 - 9:30 pm. We hope you can make this fun event in Downtown Denver to help fundraise for Parkinson's research!
Event Committee:
Laura Fiske, Lauren Williams, Jackie Williams, Greg Fiske, Jennifer Vogler, Laurisa Truemper, John Carlin, Jon Starr, Pat Gregory, Rachel Oliver, Steven Fields, and Jane Roe of Pedaling 4 Parkinson's in Denver, CO
To Purchase tickets or to Donate:
https://fundraise.michaeljfox.org/PS303-Denver/Donate/Tickets?os_cid=tw-a300P000005r0lx&s_src=MJFFtw&s_subsrc=raising_the_bar_denver
Sky Sports presenter and former Ilkley Grammar School pupil raises £100,000 for Parkinson's UK
September 30, 2016
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| Sky Sports presenter Dave Clark (third from the right), who lives with Parkinson's, with Parkinson's UK supporters on the beach at Robin Hood's Bay in North Yorkshire, after successfully walking 200 miles Coast to Coast in 13 days
SKY Sports presenter Dave Clark, who lives with Parkinson’s, has helped raise more than £100,000 for Parkinson’s UK after completing a Coast to Coast walk.
The presenter, a former Ilkley Grammar School pupil, completed the 200-mile hike in 13 days, starting at St Bees in Cumbria and finishing in Robin Hood’s Bay in North Yorkshire on Friday, September 23.
Dave, who was diagnosed in 2011 when he was 44, said he had been to Robin Hood’s Bay with his father, also diagnosed with Parkinson’s at 44, as a child and had wondered why people were running into the sea.
“I wanted to raise funds for Parkinson’s so it was that memory that made me want to do the walk," said Dave, who is Champion of Walking for Parkinson’s UK.
While Dave is still able to manage his condition, he wants to show what can be achieved through determination and positive thinking, and to encourage others with Parkinson’s and members of the public to take on physical challenges, whether that be walking one mile or 200.
Sky committed to doubling every pound raised through donations up to £50,000.
The presenter completed the hike with Sky Sports F1 executive producer Martin Turner, who in 2015 was also diagnosed with Parkinson’s. He was also accompanied on his walk by Stephen Senior owner of Ilkley hardware store Mortons.
Dave added: “Thirteen days, 200 miles, half-a-million steps, climbed height of Everest and £100,000 for Parkinson’s UK. Job done.
“The generosity and kindness shown by so many has been incredible.
“There were mishaps, injuries, exhaustion and much more over the fortnight, but we battled on. In the end all of that was far outweighed by the sense of achievement, the camaraderie and laughter and by so many amazing gestures of support before, during and after the walk.
“When we reached Robin Hood’s Bay there was a huge sense of elation, but I was overwhelmed with so many emotions. Looking back it seemed to touch everyone; a tide of positivity from sea to shining sea.”
Add to the donations by visiting: justgiving.com/fundraising/ClarkysC2C.
To find out about Parkinson’s UK’s Walk for Parkinson’s series across the country, visit www.parkinsons.org.uk/walks
http://health.einnews.com/article/347243094/VQAx97QPGFIdobql
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Friday, September 30, 2016
Natural health: Parkinson's disease
September 30, 2016 By Megan Sheppard
Early symptoms of Parkinson’s include a sensation of stiffness and weakness in the limbs, often accompanied by a slight trembling of the hand while it is resting.
Broad Beans are a natural source of Levodopa
Q. My husband has recently been diagnosed with Parkinson’s disease and we are willing to do whatever we can. Any information you could provide would be much appreciated.
A. Slightly more common in men than women, this condition affects around one in every 100 individuals over the age of 65.
It is not passed from one generation to the next.
Early symptoms typically include a sensation of stiffness and weakness in the limbs, often accompanied by a slight trembling of the hand while it is resting.
On a cellular level, the cells responsible for producing dopamine —which governs muscle activity — begin to degenerate, resulting in a drop in dopamine levels which then triggers an imbalance of other transmitters, such as acetylcholine.
Environmental exposure to pesticides or toxins is thought to be of significant concern in relation to Parkinson’s disease, which is why foods such as fruit, vegetables, seaweeds, fresh vegetable juice, sprouted grains, spelt, sunflower and pumpkin seeds are usually recommended as part of dietary therapy — all preferably organic.
Avoiding processed foods, coffee, tea, artificial sweeteners, sugar, tobacco and alcohol is strongly encouraged since they are over-stimulating to an already stressed nervous system.
Vitamin B6 (pyridoxine), found in bananas, beef, fish, liver, oatmeal, peanuts, potatoes, and whole grains, interferes with the action of Parkinson’s medication (usually called Levadopa or L-Dopa), so he may need to reduce his intake of these foods.
Broad beans, however, are a natural source of levadopa (half a cup contains around 250mg — equivalent to one L-Dopa pill).
Your husband will, of course, need to discuss any dietary changes or supplementation with his doctor.
Constipation is a common side-effect, but your husband should steer clear of bran as a solution to this problem since it is high in vitamin B6.
Prune juice and psyllium hulls are preferable as a natural solution. He should also drink plenty of pure water, around two litres daily, to help flush toxins and maximise nutrient absorption.
Hot spices are to be avoided, since they can trigger uncontrollable physical movements in some individuals.
High meat consumption aggravates the symptoms, and inhibits the uptake of vitamin B6, so a dietary ratio of 7:1 (carbohydrates:proteins) is usually advised.
The following supplements are believed to help with symptoms and side-effects of Parkinson’s:
* Gamma-aminobutyric acid (GABA), an amino acid that acts as a neurotransmitter, works by strengthening and relaxing the nervous system. Take 500mg, three times daily for three months.
* Calcium and magnesium are necessary for the nervous system — any supplement you choose should contain 500mg of calcium and 250mg of magnesium. Take twice daily.
* Green superfood supplements supply chlorophyll and essential trace minerals. Choose one that contains chlorella as this will bind to heavy metals and toxins so that they can be safely excreted. NAC (N-Acetyl-cysteine; 500mg, 2 x daily) is recommended if you know that heavy metal toxicity is a problem.
* Evening primrose oil contains valuable essential fatty acids, often deficient in those with Parkinson’s. Take 500-1000mg twice daily.
* The enzyme NADH (Nicotinamide adenine dinucleotide hydrogen) helps to improve neurotransmitter function. Take 25mg twice daily. Phophatidylserine is a lipid with similar properties — low levels of which are associated with the onset of Parkinson’s. Take 50mg, three times daily.
* Vitamin C. Ensure it is combined with bioflavanoids and begin with 1000mg, three times daily for a month, then increase gradually. n For support log onto parkinsons.ie or phone 1800 359 359.
http://www.irishexaminer.com/lifestyle/healthandlife/naturalmedicine/natural-health-parkinsons-disease-423354.html#
Why become a doctor? Deep brain stimulation hooked this Stanford neurosurgeon
September 30, 2016
Neurosurgeon Casey Halpern , MD, can't remember a time when he wasn't interested in the brain. Thanks to a mentor at the University of Pennsylvania, he was able to refine his interest and gain exposure to an actual brain surgery as an undergraduate.
Deep brain stimulation hooked this Stanford neurosurgeon
Why I Went into Medicine: Casey Halpern, MD
Neurosurgeon Casey Halpern, MD, can’t remember a time when he wasn’t interested in the brain. Thanks to a mentor at the University of Pennsylvania, he was able to refine his interest and gain exposure to an actual brain surgery as an undergraduate.
The procedure he watched was a deep brain stimulation surgery, which is often likened to installing a pacemaker for the brain. It can help patients with tremor, Parkinson’s disease or even with Obsessive-Compulsive Disorder.
“It was that experience that made me realize this is what I wanted to do every day,” Halpern explains in the Stanford Health Care video above.
He continues:
What inspires me is how effective it is and how minimally invasive it is at the same time… And it is able to transform these patients’ lives into what many of these patients would say is almost feeling completely normal. And many of these patients haven’t felt normal in 15 years.To be able to have that kind of an effect on patients has been what inspires me every day.
http://scopeblog.stanford.edu/2016/09/30/why-become-a-doctor-deep-brain-stimulation-hooked-this-stanford-neurosurgeon/
5 inspirational moments from the World Parkinson Congress 2016
Author: Almaz OhenePublished: 29 September 2016
More than 4,600 people from 67 different countries came together in Portland, Oregon, for the biggest event in the Parkinson’s calendar. We round up some of the highlights
1. Brian Grant: “You guys are my team”
In his opening ceremony speech, Brian Grant – ex-NBA basketball star and founder of the ‘Parkinson’s Power Through Project’ – told the crowd: “For years my team had been 15 basketball players. But not any more. You guys are my team.
“The team consists of patients, caregivers, healthcare providers, scientists, and yes, all of you who are here today. As a team we are working towards a cure and who are also finding a ways to live our best lives, while we have Parkinson’s disease.
“This congress provides us with the best opportunity to learn from one another and to grow stronger together. As a person living with Parkinson’s disease I just want to thank you for being here and being a part of this community. Thanks!”
2. ‘Victory’ for stop-motion filmmaker
Lori Campbell was crowned winner of the WPC Video Competition and her short film was screened at the opening ceremony. Through the creative use of stop-motion animation, ‘VICTORY’, Lori describes the initial reaction of having Parkinson’s disease, and how she and her family have learned to be more optimistic.
3. Three ‘distinguished’ individuals
The ‘World Parkinson Congress Award for Distinguished Contribution to the Parkinson Community’ was given to three people this year; Julie Carter (US), Tom Isaacs (UK) and David Leventhal (US).
Julie Carter joined the Oregon Health & Science University (OHSU) Neurology and Movement Disorders faculty in 1979 and co-founded the Parkinson’s Center of Oregon (PCO), where she has been fully engaged as a clinician, clinical investigator, and educator.
For more than a decade, Julie served as the director of Clinical Research for the PCO. In this role she served as site principal investigator (PI) for more than a dozen clinical trials, and has published more than 75 papers in peer-reviewed journals.
"Greatest luck is doing what you love and get recognized for that." @WorldPDCongress
In 2002, seven years into his Parkinson’s journey, Tom undertook an incredible physical and fundraising challenge, to walk 4,500 miles around the coastline of Britain, climb the highest mountains in England, Scotland and Wales and run the London Marathon.
The walk united Tom’s interests in research and advocacy. Two years later The Cure Parkinson’s Trust came into being to fund research to slow, stop and reverse Parkinson’s, with the aim of making a difference to those living with the disease within five years. Since its creation, the Trust has raised £12 million for research.
@tomisaacs1 honoured @WorldPDCongress for outstanding contribution & service to #Parkinson community http://buff.ly/2dkmW9y #Proud #Hero
David Leventhal is currently the program director and one of the founding teachers of Mark Morris Dance Groups (MMDG)’s Dance for PD® program, which was originally conceived by Olie Westheimer. Begun in 2001 as a small monthly class for the Brooklyn Parkinson Group, the program has expanded to include weekly classes throughout New York City, training workshops for teachers in cities around the US and worldwide, and a network of affiliated classes in more than 100 cities in 16 different countries.
Congrats to friend David Leventhal for receiving the Award for Distinguished Contribution to the PD Community! @danceforpd @WorldPDCongress
4. Inspirational speakers take to the stage
Tim Hague Sr, winner of ‘The Amazing Race Canada’ encouraged people with Parkinson’s to “Stay in the race; don’t give up”.
"Stay in the race; don't ever give up!" #Livingwell w/#Parkinsons presentation frm @TimHagueSr #WPC2016 in #pdx
Emma Lawton, author of Dropping the P Bomb and graphic designer, sketched daily round-ups to record her WPC experience.
Emma Lawton's sketches
5. ‘This is Parkinson’s’ wows the crowds
Norwegian photographer Anders Leines – who lives with Parkinson’s – exhibited his photo series ‘This is Parkinson’s’. His photos were blown up, printed on fabric and displayed on a large curved framework that mimicked the curved architecture of the room. On the reverse side were individual photos with text about the images.
The 5th World Parkinson Congress will take place from 2-7 June 2019 in Kyoto, Japan
http://parkinsonslife.eu/5-inspirational-moments-from-the-world-parkinson-congress-2016/
Increase in the number of people dying with dementia, UK
September 30, 2016
The proportion of people dying with a recorded dementia diagnosis has more than doubled since 2001.
Public Health England (PHE) has launched a range of products which examine the deaths of people recorded with dementia between 2012 and 2014.
Figures show the number of deaths with a mention of dementia was:
- 6.6% of all deaths in 2001
- 15.8% of deaths in 2014
This is most likely due to an increase in awareness and recording of dementia.
The new reports were produced by the Dementia Intelligence Network (DIN) in collaboration with the National End of Life Care Intelligence Network (NEoLCIN) and draw on national data to see if there have been changes in dementia deaths over time, who the people dying with dementia are, where they die and the cause of their death.
The findings suggest that people who live in more deprived areas die with dementia at a younger age than those who live in more affluent areas.
There are also considerable differences between the place of death for people who have dementia and the general population. People with dementia are considerably more likely to die in hospitals and care homes and less likely to die at home or in end of life care settings such as hospices.
Professor Julia Verne, head of clinical epidemiology, at PHE, said:
"We hope that these products can be used to help the NHS and its partners to commission and deliver high quality end of life care in a way that makes the most efficient use of resources and responds to the wishes of dying people and their families."
Alistair Burns, National Clinical Director for Dementia for NHS England and chair of the PHE's DIN leadership group said:
"High quality end of life care is a key aspect of the quality of dementia services. This report highlights some important measures of end of life in people with dementia and is helpful in raising the profile of this crucial aspect of dementia care."
Professor Louise Robinson, Director Newcastle University Institute for Ageing, said:
"In order to improve the quality of end of life care we need to accurately know where people with dementia die and under what circumstances and these new PHE reports significantly help improve this understanding."
"Service commissioners and service providers now need to critically examine current care provision for people with dementia, especially their access to existing community and specialist end of life services, with a view to introducing better systems to facilitate preferred place of care and reduce unnecessary hospital admissions and care transitions in the last year of life."
http://www.medicalnewstoday.com/releases/313197.php
Parkinson's UK wins prestigious Charity Times award
30 September 2016
Parkinson's UK was named 'Change Project of the Year' winner at the prestigious Charity Times Awards on Wednesday 28 September.
Our entry highlighted the important role staff, volunteers and the wider Parkinson's community played in developing our plans for 2016-2019.
The award
The 'Change Project of the Year' award is given to a charity that has carried out a significant change project that has resulted in a more efficient or appropriately organised charity, that ultimately benefits the charity's users.
Driven by the voice of people with Parkinson's
Our entry described how new ways of thinking and working are enabling us to make a much bigger difference to the lives of people living with the condition.
The judges commended our "impressive organisational transformation, driven by user voice and based on strong values".
A big challenge
Our Chief Executive, Steve Ford, says:
"People living with Parkinson's set us a really big challenge. We responded to this by radically changing the way we do things.
"We're now leading from the front to find better treatments and a cure faster.
"We're working in much closer partnerships with professionals to improve care services. And we're empowering people living with the condition to take more control."
Thank you
Carolyn Nutkins, Director of Organisational Development, says:
"This award is for everyone involved. A massive 'thank you' to everyone who played a part."
https://www.parkinsons.org.uk/news/30-september-2016/parkinsons-uk-wins-prestigious-charity-times-award
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