WPC: Final Thoughts

As the 2nd World Parkinson Congress comes to a close, PDF is humbled and honored to include the following closing thoughts from guest blogger and CRLI/WPC reporter, Diane G. Cook.

World Parkinson Congress: A “Tremor Safe” Zone

“Here at the World Parkinson Congress, we’re in a Tremor Safe Zone.” Those words were spoken by Davis Phinney to describe how it feels to be among thousands of others where it’s okay to have PD. No one notices the drag of foot, the slowness of step, the shakiness of hand, the softness of voice. Everyone does it! No self consciousness here!

But there’s something much more significant happening in Glasgow…it’s tangible. You can feel it in the smiles in the corridors, the instant friendships forged over a question posed of a speaker, the hug from a stranger, the expression of interest in a poster, the spontaneous gathering of people after lectures. There is a commonness of purpose and an honoring of each role in the fabric of how we will help ameliorate symptoms while working for a cure. Physicians, scientists, researchers, executives, nurses, therapists, people with Parkinson's, caregivers and the many others working to fight the devastating effects of this disease on many levels are in one conference hall … learning, exchanging views, questioning, and pushing the agenda forward.

One leaves each session in awe of the great minds at work, clear that there is a role for each one of us, stimulated by the learning, comforted by the cross fertilization of ideas, encouraged by the new partnerships and collaboration being forged, inspired by those overcoming limitations, and thankful that you somehow ended up in this special Parkinson’s disease community.

It doesn’t get any better than this! I, for one, am signed on for 2013 in Montreal and will offer my help in any way I can to make the 3rd WPC a significant step forward for the Parkinson’s community.

As I approach my last day, my focus turns to my next challenge: ”How will I translate the power of the Congress and the urgency of Now into my life back home.”

Diane

WPC Posters: More CRLI Grads Present

As we chatted about in a previous post, the 2nd World Parkinson Congress includes two poster sessions, one led by researchers about the science and care of Parkinson's and another led by Parkinson's community members who have made efforts in their community to move the cause forward.

We profiled a few of PDF's CRLI graduates yesterday and wanted to update you on some other individuals who have presented their work. Check out Israel's poster on the left and a list of others who presented during the week.

Israel Robledo
Parkinson’s Outreach. Hope For Tomorrow. Help For Today
(Robledo, I)
Israel works to educate people living with Parkinson’s in Midland, TX about clinical trials and, along with his wife Chris, he recently established a local non-profit to cover the cost of Parkinson’s medications and clinical trial participation for his neighbors in need. His poster discusses his first year of work and the lessens he has learned. Israel says that his participation in the WPC is not only an opportunity to talk about his work, but also to learn about the programs of others around the globe. He remarks,

“Sometimes we [people living with Parkinson’s disease] just live in our little shells because we feel that the disease is beyond us. But it’s not. We can help ourselves and others, too.”

Girija Muralidhar
The Neurowriters’ Guide To The Peripatetic Pursuit Of Parkinson’s Disease (PD): A Preview
Muralidhar, G (United States); Wittekind, P (United States); Kell, P (United States); Huseman, K (United States); Wheeler, J (United States); Brooks, L (United States); Herman, L (United States); Citron, J (United States); Willocks, P (United States); Ashford, L (United Kingdom); Cummings, R (United States)

Jean Burns
Working And Crossing National And Cultural Boundaries To Spread Parkinson’s Awareness
Capitanio, F (Spain); Burns, JE (United States); Martinez, C (United States)

Kate Kelsall and Valerie Graham
Role Of Patient Support In Shaping Expectations And Decision Making With Deep Brain Stimulation (DBS) Surgery
Klepitskaya, O; Kelsall, K; Graham, VW; McRae, CA (United States)

Jean Burns
Grassroots Effort To Make The PD Tulip The National Symbol For Parkinson’s Awareness In The United States
Burns, JE (United States)

WPC Roving Reporters: Day Two Science

The 2nd World Parkinson Congress continues its three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in to a variety of these sessions. They are reporting back what they have seen and heard….and sharing the most important messages they are hearing as people living with Parkinson’s.

Please note that this post was updated on October 5.

Kate Kelsall
Attended: Music as Pleasure and How It Can Empower You
Presenter: Concetta (Connie) Tomaino, D.A., MT-BC, LCAT, Executive Director of the Institute for Music and Neurologic Function in the Bronx, New York

"Some of the points in Connie’s presentation included:

• We all experience music, but we all feel the beat differently.
• The importance of singing songs one knows well to cue yourself (she sang “You are my ____”; the audience filled in the blank with SUNSHINE).


• The prosody (rhythm, stress and the intonation) of singing matches that of the voice.


• Songs can promote memory retrieval of past events that are associated with certain songs.


• Music and songs can help with psychological issues such as depression or fatigue.


• Choose music to move by and choose different music to lull yourself to sleep.


• People with Parkinson’s have difficulty with articulation and lack of breath support. Singing can help with these issues. She illustrated with the song “Amen," noting she was able to help her patients increase their breath support from three syllables to 19 syllables."

Learn More:
Find resources on music and PD
Watch Ms. Tomaino's video presentation from PDF 2009 educational seminar


Jackie Hunt Christensen
Attended: Non-Motor Symptoms: Sleep, Pain, and Autonomic Dysfunction

"This session gave scientific validation to symptoms that many of us with Parkinson’s disease have been experiencing for years, often without acknowledgment from our physicians. Treatments haven’t been identified for most of these problems, but having them recognized as real phenomena that Parkinson’s disease may cause for some patients is a giant step in the right direction toward better patient care.

• Sleep issues: It is estimated that 90% of people with PD will experience some sort of “sleep disturbance.” These can include reduced sleep; sleep fragmentation (waking up a lot during the night); Rapid Eye Movement (REM) Sleep Behavior Disorder (acting out our dreams, such as kicking, punching, screaming); or excessive daytime sleepiness. Some of these conditions can be worsened by PD medications.

• Pain: Two-thirds of PD patients report pain that is directly related to their PD symptoms. This pain can occur in arms, legs, back, shoulders and usually occurs on the side of the body most affected by PD. It may improve after PD drugs are begun. Some people with PD may feel pain in a situation or experience that is painless for those without Parkinson’s. Others may feel extreme pain when people without PD feel only mild discomfort.
  

• Autonomic dysfunction: The autonomic nervous system regulates “automatic” body functions. For those of us with Parkinson’s disease, autonomic dysfunction can include bladder problems; constipation; sexual dysfunction – in both women and men, excessive sweating, and sensitivity to cold."

Learn More:
Find resources for nonmotor symptoms in PD
Watch PDF's online seminar on nonmotor symptoms

WPC Science Day Two: Genetics Updates

From James Beck, Ph.D., Director of Research Programs

Here are some additional scientific updates from this week's 2nd World Parkinson Congress (WPC).

Michael Schlossmacher, M.D., reported the results of his recent experiments that demonstrate that mutations in the GBA gene, which were recently identified as a major risk factor for Parkinson's disease (PD), actually contribute to an increase in the levels of alpha-synuclein in nerve cells. Alpha-synuclein is the protein that accumulates in dying nerve cells and is the hallmark of Parkinson’s disease. This result provides a biological explanation as to the significance of these GBA mutations and their relevance to PD. That is to say, Dr. Schlossmacher has shown how mutations in the GBA gene are related to an increased risk of PD. His work has gone through peer review and is currently awaiting publication—we will let you know when it is published and report on his findings in more detail.

Additionally, Haydeh Payami, Ph.D., a research scientist from the Wadsworth Center and Director of the NeuroGenetics Research Consortium in New York State, reported late-breaking results of the re-analysis of a large-scale genetics study her team published this past March in Nature Genetics. The re-analysis examined whether there was a genetic interaction with the onset of Parkinson’s disease and the amount of coffee study participants consumed. Her team found a strong link with a particular gene called GRIN2A, which makes one component of the receptor protein that binds to an important neurotransmitter called glutamate. When this receptor protein binds too much glutamate, it becomes over-activated and can lead to cell death.

What is the role of coffee? Well, the caffeine in coffee indirectly alters how much glutamate is released from neurons by blocking the function of another receptor protein—the adenosine A2A receptor. This in turn, may prevent the cell death observed in the presence of too much glutamate. Indeed, epidemiological evidence suggests that coffee drinkers may have a lower risk of PD. However, Dr. Payami introduced a wrinkle in this concept. She suggests that her teams’s genetic data reveals that only some people may benefit from the strategy of blocking the A2A receptor. You see GRIN2A comes in two forms and only 25 percent of the population have the version which Dr. Payami suggests is beneficial.

Please keep in mind that Dr. Payami's study results were part of a late-breaking science presentation at the WPC, meaning the results were fresh from the lab and will need to be validated and reviewed by her peers. So as compelling as the results are, it will be interesting to see if these findings will stand after a critical examination has been performed. Whether her hypothesis regarding which form of GRIN2A is important is right or wrong, she raised an a critical issue that may be impact future drug discovery—the significance of genetically characterizing research participants. We are all genetically different, so is it so surprising that some people respond better to certain drugs than others? Maybe this is why many drugs fail clinical trials? What do you think?

As the science advances, you can count on PDF to keep you updated.

WPC Roving Reporters: Day One Science

The 2nd World Parkinson Congress includes three days of sessions discussing the latest news in Parkinson’s science and care. PDF’s reporters have been listening in during this first day and a half. We have asked them to let us know what they have seen and heard….and to share the most important messages they are hearing as people living with Parkinson’s.

Here are two reports from Wednesday, September 29:

Steve DeWitte
Session Attended: Early Diagnosis and PD

“This session included four presentations. In the second, Andrew Siderowf, M.D., presented results from trials studying olfaction, or sense of smell. He and other colleagues said that there is now more certainty than before that olfactory failures (loss of sense of smell) may show themselves in people upwards of five years before the clinical symptoms of Parkinson’s are displayed. Over 80 percent of people with Parkinson’s suffer loss of their olfactory sense. This exceeds tremor as a common early onset identifier. With such results, neurologists in the future may be able to look for other markers to validate PD diagnosis earlier, and consider treatment options sooner.”


Jackie Hunt Christensen
Session Attended: Environment, Epidemiology and PD

"In this session, researchers discussed several environmental (meaning things that are in the world around us or that happen to us) factors that are associated with increased risk of developing PD. These include, among others increasing age; being male; head injury + alpha-synuclein gene; pesticide exposure; and non-smokers + LRRK2 gene.

One theory of PD hypothesizes that, in addition to the dopamine system, at least four other parts of the brain are affected. Sense of smell, sleep disorders and constipation MAY be early indicators of PD, but there is not enough evidence to allow any of those conditions to be used as biomarkers (indicators of disease that can be measured before a person dies).

Caffeine intake (coffee, tea or other caffeinated beverages) and smoking may be associated with lower risk of PD.

It's suspected that many things that we have done in our home and work lives could have unwittingly played a role in our Parkinson’s disease. Having certain genes could have increased our risk, too.

This was a very technical presentation, but in my opinion, many patients can learn to understand this information and ask thoughtful questions."

WPC Roving Reporters: Day One Insights

Each day during our coverage of the 2nd World Parkinson Congress (WPC)…we ask our WPC reporters, “What’s the most interesting thing you heard today?” Here are some answers from Wednesday, September 29:

From Kate Kelsall:

"The most interesting thing that I heard/saw today was a presentation by David Iverson entitled: Genetics and Me: Patient Perspective. Background of David Iverson:

David Iverson has been a producer, writer and correspondent for public broadcasting for 30 years. Most recently, he was the writer, correspondent and co-producer/director of the February 2009 PBS Frontline documentary My Father, My Brother and Me, which explored his family’s battle with Parkinson’s disease. Iverson is based in San Francisco, where he also hosts radio and television programs for public broadcasting, including the Friday edition of Forum on KQED public radio.

The three Iverson men all have one thing in common: PD.

He offered an interesting perspective on genetic testing that I hadn't considered. While David Iverson may want to consider genetic testing for himself, his decision impacts his entire family. If he decides to proceed with the testing while his family does not want to know the results, he has to live with the burden of the tests results, good or bad, and not be able to share with his family.

Because of this, he has decided not to proceed.

Inspiring thoughts in presentation:

• It's all about balance and hope
• Hope doesn't get you out but it gets you through
• PD steals your movement and robs you of your voice
• Life is fragile
• Each of us has our own version of PD with no operating instructions
• The power of family and the promise of science
• Time is our enemy and time is our ally
• Enduring power of the human spirit
• Run with what you've got and keeping running toward tomorrow."

From Garry Ballenger:

"On the first day of the WPC, I spoke with a man at breakfast who turned out to be a neurologist from Italy. He works at a clinic in a small town in the northern part of the country. He had spotted me immediately as a person with Parkinson’s and related that he has been running an exercise program for his Parkinson’s patients, working with them three hours a day, every day, for four weeks. He has gotten good results. It fit my own view: vigorous exercise is the best thing you can do to stall the progression of PD. The more you do, the more you can do."

Learn More:

• Read PDF's most recent article on exercise and Parkinson's
• Learn more about genetics and PD

Parkinson's Quilt Debuts at WPC!

It was a year in the making...but last night marked the debut of the Parkinson's Quilt!

The quilt, a project of PDF, includes 2x2 foot panels from more than 600 people from around the world. After the WPC Opening Ceremonies yesterday, the Royal Burgh of Renfrew Pipe Band led thousands of attendees into the exhibit hall...

...and for the first time the world saw the Parkinson's Quilt.

We have all been touched by the personal stories told by the quilt panels. As PDF's Executive Director noted,

"Each quilt panel has a story to tell, whether it was created by a person with Parkinson's about his or her experience, or by a care partner, family member or friend, in honor of a loved one living with the disease. These individuals illustrate the truly global nature of the quilt, and of Parkinson's disease. When the quilt is displayed for the first time this week at the World Parkinson Congress, it will radiate the contributions of these individuals and others like them who have been touched by Parkinson's. It will also remind the world that we need increased awareness and funds to find a cure."

Some other quilt highlights:

• Quilters have been stopping by the PDF informational booth to say hello and we're getting to meet the people behind these beautiful panels.
• The exhibit includes a "Living Quilt" where people can create panels on site. So if you're in Glasgow, don't miss it!
• Each day there are several "Meet the Quilter" sessions. Today, our very own WPC reporter/CRLI grad/video competition Pam Quinn chatted about her quilt panels.
• Exciting announcement: In 2011, the Parkinson's Quilt will be available for rental to the general public. See PDF's website for more info.
• See the official Parkinson's Quilt press release here, which links to several profiles of our quilters.

Quilt Photos

Why a quilt for Parkinson's? This sign tells visitors how the quilt aims to raise awareness of the impact of PD on people living with it and their loved ones...and on our urgency for a cure.

The Living Quilt is being assembled on site.

The Living Quilt.

WPC attendees admire the quilt.

WPC Posters: CRLI Grads Present

Today kicked off the not only the 2nd World Parkinson Congress (WPC) program - e.g., presentations about the latest Parkinson’s research and care - but also the scientific and lay poster sessions.

Most scientific meetings include posters by scientists, which summarize their most recent experiments. The WPC is unique because, alongside the scientific display, it features “Living with PD” posters. These posters display efforts undertaken by people with Parkinson’s disease, care partners and voluntary organizations around the world to further the cause.

PDF is proud to report that two of its Clinical Research Learning Institute graduates (who also serve as WPC reporters) presented posters about their work in the community. Today, they stood by their posters discussing their work with people from all over the world. They both chatted with us briefly during this time. Here’s a synopsis:

Renee

Renee LeVerrier

Yoga Teacher Training for Students with Parkinson’s Disease

(LeVerrier, R.; Rork DeAngelis, T; Thomas, CA (United States))

About Renee's Poster: As Renee says, "Yoga is becoming increasingly popular among all people, and people with Parkinson’s. For me, the focus is on making sure that yoga teachers know how to work with people with Parkinson’s, because it is different." She and her co-authors identified a need in the Parkinson's community for yoga instructors knowledgeable in disease who could tailor their teaching to its special needs. In this vein, Renee created a collaborative model for health care professionals to teach yoga instructors about Parkinson's. She has already conducted two workshops and 40 instructors have been trained.

Diane

Diane G. Cook

Addressing the Needs of Newly Diagnosed PD Patients: Development of a Model Curriculum (Cook, DG; Vierck, E (United States))

About Diane's Poster: Diane's poster discusses strategies that she has used to address the needs of people newly diagnosed with PD. She has done this within her own support group, using surveys to monitor what information people are looking for and planning a formal curriculum accordingly. Several of her leading topics include nonmotor symptoms of PD. She hopes to make this curriculum a prototype that others could use. Diane says of her experience today,

“My experience in presenting is that much of the value of the conference takes place in the discussions held in front of our posters and in the booths, where common experiences are shared and cards are exchanged to continue the dialogue. There is a fierce sense of collaboration!”

Congratulations to Renee and Diane. We'll update you tomorrow on other CRLI presenters.

WPC Science Day Zero: Orthostatic Hypotension

From James Beck, Ph.D., Director of Research Programs

Yesterday, an industry-sponsored session for clinicians and scientists was held prior to the official start of 2nd World Parkinson Congress. Largely a review of current medical management of PD, the session included one tidbit that I found particularly interesting - a comment made by Mark Stacy, M.D.

He said that orthostatic hypotension, that is low blood pressure upon standing, is the most common, unrecognized symptom of PD.

Up to 40 percent of people with PD experience orthostatic hypotension. Drugs that are currently approved to treat hypotension, like midodrine, work, but may work too well. The problem for people with Parkinson's is that their blood pressure is generally normal upon lying down or sitting, and problematic only when standing. But midodrine is not “smart” enough to figure this out. So while the drug fixes the problem of low blood pressure when a person is standing up, it also acts when a person is not standing, often causing the problem of hypertension, i.e., high blood pressure.

A solution may be in the works in the form of a drug called droxipoda, approved in Japan and under clinical development in the US by Chelsea Therapeutics (one of the industry sponsors of the session). Much like levodopa, or L-DOPA, a dopamine precursor given to replace dopamine, droxidopa or L-DOPS, is a precursor to the neurotransmitter norepinephrine and is given as its replacement. Preliminary evidence from clinical trials, presented by Phillip Low, M.D. from the Mayo Clinic in Rochester, MN, seems to indicate that droxidopa may benefit orthostatic hypotension in PD without causing hypertension when a person is not standing.

It will be interesting to follow the fate of this drug as it is tested. Do you agree orthostatic hypotension is a problem? Are you waiting for better treatment for it? Let us know in the comment section below.

WPC Opening Ceremonies III

Rhona Johnson, one of PDF's WPC reporters and member of our People with Parkinson's Advisory Council, would like to follow-up on previous posts discussing last night's WPC Opening Ceremonies. Rhona and others communicated that they were particularly moved at the ceremonies by the words of Bryn Williams, founder of WobblyWilliams.com.

Here's Rhona's report:

"At the Opening Ceremonies last night, Bryn Williams, Founder of WobbyWilliams.com spoke eloquently of how PD impacts people living with the disease, their families, friends and carers. He issued an urgent challenge to them all the work for a cure, saying,

'Neurologists cannot do it alone. We cannot do it alone. People with Parkinson's are part of the solution.'

He urged us to work tirelessly and energetically to advocate and educate to find a cure."

What Do You Think?
If you have questions or comments for Rhona about her post, please click "Comment" or "Post a Comment" below.

WPC Day One

The first day of the 2nd World Parkinson Congress has begun. Scientific sessions are already underway and we hope to have some reports for you later today.

Who else is reporting on the WPC? Several other community members, including some of our very own reporters, are blogging all week long as well. We'll post some of these blogs below and start a new WPC Blogroll at right.

Do you know of others?

• Kate: CRLI graduate Kate has a wonderful story up about how she came to the WPC.
• Jackie: CRLI graduate Jackie is already blogging about her experience at the exhibits yesterday.
• Sharon: This PDF quilter is blogging about her trip to Scotland.

Learn More:

What is the CRLI? Visit PDF's site to find out.

WPC Haiku from Renee

As we kick off the first full day of sessions of the 2nd World Parkinson Congress, we'd like to share (a bit belatedly so) a lovely Haiku emailed to us yesterday by Renee LeVerrier, as she waited for the opening ceremonies to begin

Pre-Congress Haiku

Cloudy sky, Glasgow fog
Cannot dampen spirits or
Clarity we seek

Renee is one of our WPC reporters and a graduate of PDF's Clinical Research Learning Institute. Later today, Renee is presenting a poster entitled, "Yoga Teacher Training for Students with Parkinson's Disease."

Learn More:

If you'd like to learn more about Renee and our other WPC reporters:

• Read their bios here

If you're interested in other creative works by people living with Parkinson's

• See PDF's Creativity and Parkinson's site
• Browse the Sharing Stories project

WPC Opening Ceremonies Part II

Last night's opening ceremonies of the 2nd World Parkinson Congress included not only inspirational words, but also action...in the form of the newly-announced Global Parkinson's Pledge.

With just one click, you can make your voice heard and help to make Parkinson's a priority around the world. The final two lines of the Global Parkinson's Pledge speak to its purpose:

"Furthermore, we celebrate the momentum created by the second World Parkinson Congress and commit ourselves to working together to build a global Parkinson’s movement, designed to elevate Parkinson’s disease as a priority health, social and economic issue around the world."

The Parkinson's community aims to have one million pledge signatures by the next World Parkinson Congress in Montreal in 2013!

Sign the pledge today to ensure Parkinson's is a priority around the world.

WPC Opening Ceremonies, Part I

The opening ceremonies of the 2nd World Parkinson Congress (WPC) included some inspiring and informative moments. Here are some quick highlights:

• Andrew Lees, M.D., Master of Ceremonies, opened the program and introduced the evening's speakers, including Glasgow's Lord Provost who welcomed everyone to the city.
  
  
• BBC News Presenter Jane Hill presented awards to Tony Cox and Pam Quinn, the winners of the WPC video competition. Special congratulations to Pam, a graduate of PDF's Clinical Research Learning Institute. (Watch her video!)



• Grace Griffith wowed everyone with two songs, accompanied by a guitarist. (See Grace's work on PDF's Creativity and PD site).
  
  
• Stanley Fahn, M.D., Co-Chair of the WPC and PDF's Scientific Director, discussed the history of the WPC, including the instrumental role of PDF and our Executive Director Robin Elliott in putting the first meeting together four years ago.



• Gavin Hastings, Former Rugby Captain of Scotland and the British Lions, announced that his wife Diane is living with Parkinson's and discussed his commitment to fighting it.



• PDF's on-site reporters, tell us they were especially moved by comments from Bryn Williams, who founded Wobbly Williams. (Read Bryn's full speech here).



• The next WPC will take place in 2013 in Montreal.
  

We have posted a few photos on our Flickr account and can't wait to share more as the sessions get underway tomorrow.

Preparing for WPC Opening Ceremonies

The 2nd World Parkinson Congress opening ceremonies begin in less than an hour. Tonight, the Parkinson's Disease Foundation will join nearly 3,000 other attendees - people with Parkinson's, care partners, spouses, loved ones, researchers, doctors, health care professionals and many Parkinson's nonprofit groups from around the world.

Check out the opening ceremony agenda. We'll report back in a bit on tonight's happenings!

Bringing the WPC to You

In just five days, members of the Parkinson’s community will gather for the 2nd World Parkinson Congress in Glasgow, Scotland. Can’t make it to Scotland? PDF will bring the WPC to you.

We’ll be reporting straight from Glasgow, providing scientific updates, interviews with attendees, photos of the Parkinson’s Quilt display and more.

What do you want to know from the meeting? Give us some ideas of the topics you'd like covered.

We'll do our best to report back to you next week, with help from our on-the-ground reporters, members of our People With Parkinson’s Advisory Council and Clinical Research Learning Institute.

Please share your thoughts below.

• To comment or view comments: Click "Comments" or "Post a Comment" below.