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Welcome to Our Parkinson's Place


I copy news articles pertaining to research, news and information for Parkinson's disease, Dementia, the Brain, Depression and Parkinson's with Dystonia. I also post about Fundraising for Parkinson's disease and events. I try to be up-to-date as possible. I have Parkinson's
diseases as well and thought it would be nice to have a place where
updated news is in one place. That is why I began this blog.
I am not responsible for it's contents, I am just a copier of information searched on the computer. Please understand the copies are just that, copies and at times, I am unable to enlarge the wording or keep it uniformed as I wish. This is for you to read and to always keep an open mind.
Please discuss this with your doctor, should you have any questions, or concerns. Never do anything without talking to your doctor. I do not make any money from this website. I volunteer my time to help all of us to be informed. Please No advertisers, and No Information about Herbal treatments. This is a free site for all.
Thank you.


Friday, May 20, 2016

Rajesh Pahwa: Developing New Treatments for Parkinson's Psychosis

May 20, 2016
 MD Magazine Staff


Up until recently there had been no approved treatment methods for patients diagnosed with Parkinson's Disease psychosis or treatment options for patients. This changed recently with the approval of pimavanzserin.

Rajesh Pahwa, M.D., of the University of Kansas Medical Center, discussed the use of anti-psychotics for the treatment of Parkinson’s psychosis during the American Academy of Neurology's annual meeting in Vancouver prior to the drug's approval. Pahwa said that the anti-psychotics for dementia, for example, are not necessarily a treatment for a Parkinson’s psychosis.

“They not only affect dopamine but they also affect other neuro-transmittors,” Pahwa said.
Pahwa also discussed access to treatment, and how a patient from a rural center versus a research center might have difficulty, such as finding a specialist who treats Parkinson’s psychosis and other Parkinson’s symptoms, compared to a general practitioner.

However, Pahwa said a general neurologist can often prescribe some of the same treatments as a Parkinson’s specialist, and often with the same monitoring.
He said the future of treatment needs to expand the number of options, and furthermore, many patients respond differently, so efficacy and expansion of treatments is needed.



http://www.hcplive.com/medical-news/rajesh-pahwa-developing-new-treatments-for-parkinsons-psychosis

Flying high: how I raised $22,000 for my dad’s Parkinson’s… by eating chicken wings

Author: Geoffrey Chang 19 May 2016



From winning ‘The Amazing Race Canada’ to beating Parkinson’s with chicken-chomping contests, Tim Hague Jr is really winging big – and it’s all to honour his father

Tim Hague Jr is no stranger to races. Since winning TV show, ‘The Amazing Race Canada’, the 26-year-old has raised more than C$22,000 for Parkinson’s research from an unlikely source – an epic chicken wing-eating race called ‘Wingin’ It’. Tim’s accomplice for the TV show happens to be the same person who inspired the food fundraiser – his father, Tim Hague Sr, who was diagnosed with Parkinson’s disease, aged 46. In this exclusive interview, the Winnipeg student tells us about the family impact of diagnosis, why young people are the best fundraisers for Parkinson’s and how his dad bounced back from depression of diagnosis to winning ‘The Amazing Race’.
When was your father diagnosed with Parkinson’s? And how did it affect the family?
He was diagnosed at the age of 46 in 2011. I was 21 and knew nothing about it at the time. So when I was first told my dad had Parkinson’s, I couldn’t appreciate what that quite meant. Not knowing what it did. Not knowing how it would affect his body. Not knowing how this was going to change our lives. One of my first questions was: “Is he going to die in the next five years?”
It took some time to wrap my head around it and it was a hard couple of years, for sure. My dad has always been really active but for the first year after diagnosis, he really struggled with depression as he tried to come to terms with it. It was hard to understand and hard to accept as a family.

“One of my first questions was: ‘Is he going to die in the next five years?'”

Wing men: Tim Hague Jr (left) with Tim Sr (right)
How much of an inspiration is your dad for you?
The bounce back he has had since that first year has been truly inspirational. It was incredible to win ‘The Amazing Race’ with him in 2013 and then watch him go on to create a career as a speaker and bring hope to thousands of people living with Parkinson’s. It’s been really fantastic to witness that.
It sounds like ‘The Amazing Race’ was a springboard for your dad’s recovery?
Definitely! When you win something like that you have to ask how much this really affects your life. The simple answer is, it dramatically affected our lives. It really did give us a confidence to accomplish things that we didn’t necessarily know we could. Everything from ‘Wingin’ It’ to speaking engagements, to just thinking big. It gave us the confidence to step out and do things others may not. The Race was definitely a springboard to launch us into helping other people.
How did his career as a speaker for Parkinson’s advocacy come about?
We received quite a few requests for speaking after we won ‘The Amazing Race’, which formed a great platform to practice working and speaking together. From that he was able to refine his speaking style. Over the years he has become more focused on his speaking engagements for Parkinson’s, which was a very natural progression. It’s been very cool to see how he has developed into a fantastic speaker after initially training as a nurse.

You use the term ‘Parkinson’s fighter’ on your website. Is that the way you view your father?
Absolutely. As a family, we know that unless we find a cure, Parkinson’s will eventually take my dad. But living each day in the moment – how you go about fighting that disease – is what’s important. My dad always says, “Parkinson’s may some day take my life, but today is mine”. And that philosophy seeps in to everything we do and the way we live our lives. It’s not a passive approach at all, it’s very much a ‘going out and smacking Parkinson’s’ kind of attitude!
And step one to “smacking Parkinson’s” is to organise your own chicken wing contest, naturally. I must admit I love wings myself, so how did the idea come about?
I wanted to create an event my friends and I could get excited about, something that would be an easy ‘yes’ for people my age, between 20-35 year-olds – the demographic that Parkinson’s has a hard time reaching. At the end of the day, the walks are great, the pancake breakfasts are great, but they’re not something I’m going to shout about to all my friends! So that’s really where the wings and beer came from. Here in North America, we LOVE our wings and beer. If you go out, it’s always wings and beer – I mean, who doesn’t love wings and beer?!

“It’s very much a ‘going out and smacking Parkinson’s’ kind of attitude”

Lord of the Wings: the chicken wing contest attracted a younger crowd

Why are you so keen to get the younger crowd involved?
I feel there’s this misconception that if you’re going to have a successful fundraiser, you need to have all these older people there with their chequebooks. Honestly, I wasn’t ok with that idea. I wanted to prove that this younger demographic are passionate about the causes and that we can generate money and help out. We definitely proved that with ‘Wingin’ It’.
Do you feel it’s important for younger people to become engaged with Parkinson’s?
Oh, absolutely! I always told people, I’m not expecting everyone to be as passionate about Parkinson’s as me. Unless you have personal experience, it’s hard to really appreciate what that person is going through. My advice to people has always been, find something you can be passionate about and give back to that cause. When we as people start giving back to whatever we’re passionate about, that’s when we start becoming a more compassionate society. Of course it’s about raising money and Parkinson’s awareness, but I really do want to encourage a younger generation to start looking beyond themselves and start finding ways to give back.
Feeling saucy? Young Canadians got behind the Parkinson’s cause
Was it hard getting the word out about ‘Wingin’ It’?
Winnipeg, as a city, got all over it! The amount of exposure and support we received was unbelievable. From TV stations, to newspapers and radio, we gained a lot of coverage. Around 250 people showed up at the event – with 20 teams of five – and I knew about a third of them. The majority came from outside my immediate circle, which is what you hope for as an event organiser. Then you’re not just asking your friends to come – it’s people who want to be a part of it, and part of the solution.
How did the event go down in the end?
People were having so much fun, and were so engaged. It was an absolute blast! It didn’t feel like they were coming out of obligation, but that they actually wanted to be there of their own accord. Also, my dad loved it! It’s so different from any other event out there and everyone really embraced the occasion. The grand prize wasn’t actually for the team who won the wing-eating contest, but the team that raised the largest amount: ‘The Wing Kings’!

“1000oz of beer and 800 wings later, we raised a total of $22,165.16″


What was the final amount raised?

We’ve done a final count. So after (collectively) drinking over 1000oz of beer and consuming over 800 wings, we raised a total of $22,165.16! It was phenomenal, I couldn’t believe the final number. I was anticipating between $10,000 and $15,000; $20,000 was the dream. The fact we passed that was huge!
Which charity are you donating to?
All the proceeds went to Parkinson Canada – they’re the national research foundation here in Canada. Further down the line, I would like to disperse the funds a little more. While we’re waiting for a cure, I think there is a lot of work to be done for the ‘right now’ – helping people cope and find ways to fight back today. At the end of the day, we’ve been searching for it so long now that helping people cope and live their lives in a functional, encouraging and positive manner can go a long, long way. My hope is that charities start really focusing on helping people in the now.
What next for ‘Wingin’ It’? Do you have other bigger plans?
That’s the million-dollar question. We will do it again next year, and keep it largely the same. Over the next year we’re going to start building a business plan for future events, so the idea of expansion is definitely there. Going back to my earlier point, I think anyone who is raising money always goes for this older generation because at the end of the day, they have the money. But I think there is an entire group of younger people that is being completely missed like myself who want to help and be part of something. If we can target this group in a positive way and show them we are worth supporting, I think we could be wildly successful.
Wingin’ It: over 800 wings were eaten and $22,000 raised
http://parkinsonslife.eu/wingin-it-parkinsons-fundraiser-tim-hague-chicken-wings/



The comic book that explains Parkinson’s to young children


RESOURCES & TOOLS 

 

Author: Parkinson's Life editors

Published: 18 May 2016

Ever struggled to put Parkinson’s into words for children? This comic series explains things in an accessible way to baffled youngsters

Chronic conditions like Parkinson’s disease are hard enough to understand for adults, let alone children.
A full colour 32-page comic book aims to explain for young minds how Parkinson’s disease affects the body, as well as what little things can be done to help people with the condition.
The book, called ‘What’s up with Alys’ Grandad: Medikidz Explains Parkinson’s Disease’, is the result of a partnership between Medikidz – a global initiative set up by doctors to explain medical information to children – and the European Parkinson’s Disease Association (EPDA).

Dr Kate Hersov, co-founder and director of Medikidz, said: “It can be very upsetting for a child to see a family member living with the symptoms of Parkinson’s. We have therefore dedicated one of our titles to explaining about the disease in an accessible, understandable and friendly way.”
Both organisations were helped every step of the way by 14-year-old Alys Winstanley, from Wales, who takes a starring role in the comic. She was just seven years old when she became aware that her grandfather was getting ill.

Alys said: “The book really helped me to piece together all the symptoms that granddad started to get. I was upset that he was walking differently, always falling asleep and that he had lost the expression in his face, which I really miss.”
Each publication in the series features the Medikidz – a gang of five superheroes, each specialising in different areas of the human body. Each comic is written by doctors, peer-reviewed by international paediatric specialists, and has been endorsed by leading organisations around the world.

Purchases:
http://www.medikidz.com/gb-en/shop/brain-eyes-nerves/medikidz-explain-parkinsons-disease/

http://parkinsonslife.eu/medikidz-comic-book-explains-parkinsons-children/

Parkinson’s website could put lives at risk, says clinical director of Parkinson’s UK

May 19, 2016
Leading Parkinson’s specialist warns that medical claims made by a popular Parkinson’s website are “absolutely unsubstantiated”
Specialist doctors are worried about misleading advice being given on a popular website, promoting alternative therapies for people with Parkinson’s disease.
The website – Fight Parkinson’s (fight-parkinsons.org) – claims that health food supplements could reverse the symptoms of the condition and encourages people to ditch traditional prescribed drugs like levodopa in favour of alternative treatments.
Colin Potter, the Parkinson’s patient from Portsmouth, UK, who runs the website (its Facebook page has over 12,000 followers), goes as far to say that it is possible to live medication-free with the right diet and exercise regimes, based on his own personal experience of controlling his symptoms without drugs.
Putting lives at risk
In a radio interview Professor David Burn, clinical director of charity Parkinson’s UK, called these claims “absolutely unsubstantiated and outrageous” and is concerned that such information on the Fight Parkinson’s website may be putting lives at risk.
Dr Burn said: “I’m very worried about the website because it is making absolutely unsubstantiated and outrageous claims to a potentially vulnerable group of patients.
“What really upsets is that the website implies doctors are almost being dishonest by wilfully not giving full disclosure about medications.”
“Spectacular results”
In one video published by Potter, he talks of the “spectacular results” and “near complete reversal” of symptoms in a case study promoting the use of amino acid therapy – protein supplements that aren’t available in the UK. However, they are available in the US, though they are not approved by the FDA as a treatment for Parkinson’s, and are classified as a dietary ingredient rather than a medicinal drug.
The treatment plan costs £250 per month and requires the patient to stop their prescribed pills as soon as they start administering the amino acids, which is worrying doctors who say suddenly discontinuing their medication could even kill some patients.
“Parkinson’s isn’t necessarily the incurable, degenerative disease we are told. It’s just doctors who don’t have any answers,” Potter adds.



“Absolutely no evidence”
While Potter insists that his website is purely for sharing information, Dr Burn expressed strong concern at the some of the suggestions he makes.
“I think there is absolutely no evidence, for example, that the treatment is curative, which is what is being suggested,” said Dr Burn. “There is no evidence that amino acid therapy will slow down or cure Parkinson’s.”
Parkinson’s Life contacted Potter after the radio interview and he said he’s never advised anyone to stop their medication without consulting their doctor. He also argued that the existing medical regimes are limited, and that the alternative methods his website promotes are offering hope to others in difficult situations.
“Drug-induced symptoms”
“The consequences of medication are absolutely dire. I call them ‘drug–induced symptoms’, which have devastating consequences,” Potter told Parkinson’s Life over the phone. “My question to Dr Burn and Parkinson’s UK is: ‘why aren’t you looking at alternatives to the pharmaceutical route?’
“Fifty to 60 years ago, levodopa was considered the drug of last resort. Today it is the drug of first resort. Nothing has changed for half a century, and most people feel shocked by the standard of care.”
“The amino acid therapy actually involves administering levodopa along with amino acids, which allows more levodopa to get to the brain,” he explained.
“There are too many people saying it works. I don’t know why they [Parkinson’s UK] are so dismissive. And if you have Parkinson’s, you’re inclined to try it, as we’ve got nothing to lose. And we need something now and not in 10 to 15 years time.
“I’ve just come across too many people in disastrous circumstances who are told they have no hope. But I’ve found loads of evidence to show you can live well with this condition.”
Potter rejected the suggestion he publishes misleading information on his site, and denied ever selling the amino acids.
http://parkinsonslife.eu/fight-parkinsons-website-charity-parkinsons-uk-david-burn-colin-potter/

Challenges: Crowdsourced solutions

Interesting Find

May 11, 2016

Open competitions bring new minds, skills and collaborations to problems in biomedical research.