Monthly Archives: June 2019


Growing evidence suggests Parkinson’s disease starts in gut

Read more https://www.theguardian.com/society/2019/jun/26/growing-evidence-suggests-parkinsons-disease-starts-in-gut


Evidence that Parkinson’s disease may start off in the gut is mounting, according to new research showing proteins thought to play a key role in the disease can spread from the gastrointestinal tract to the brain.

The human body naturally forms a protein called alpha-synuclein which is found, among other places, in the brain in the endings of nerve cells. However, misfolded forms of this protein that clump together are linked to damage to nerve cells, a deterioration of the dopamine system and the development of problems with movement and speech – hallmarks of Parkinson’s disease.

The latest findings, which are based on studies in mice, back up a long-held theory that abnormally folded alpha-synuclein may start off in the gut and then spread to the brain via the vagus nerve – a bundle of fibres that starts in the brainstem and transports signals to and from many of the body’s organs, including the gut.

“It supports and really provides the first experimental evidence that Parkinson’s disease can start in the gut and go up the vagus nerve,” said Ted Dawson, professor of neurology at the Johns Hopkins University school of medicine and co-author of the research.

Dr Beckie Port, research manager at the charity Parkinson’s UK, said the latest research builds on previous studies.“This study adds support to a growing base of evidence [implying] that changes in the gut play a key role in the initiation of Parkinson’s, although it is not believed to be the only place where the condition may start,” she said.

“By identifying and halting these changes before they reach the brain, we may be able to prevent the majority of Parkinson’s symptoms ever appearing and improve the lives of people who will be affected.”


September 7 – 8, 2019 – Team Davis Phinney bicycle ride


From Steve Hovey:

Dear Friends,

For the past couple of years, I have used the Mohawk Hudson Cycling Clubs Century weekend cycling event as a fundraiser for the Davis Phinney Foundation (www.dpf.org). Many of us – people with Parkinson’s (PWP’s) and caregivers alike, living in the Capital District have been inspired by the positive message and helpful “living well” tips available through the Davis Phinney Foundation (DPF). Many of us refer to their website and have a Every Victory Counts manual at home. As I write this letter, I am in discussions with the DPF and Albany Medical Center to bring a Victory Summit to the Albany area in the fall of 2020. I encourage you to learn more about Victory Summits on the DPF website. Victory Summits are exciting and inspirational day-long events and are free to the Parkinson’s community.

As a 501c3, not for profit organization, the great work provided by the DPF is funded almost entirely through personal donations. In fact, a substantial amount of the DPF revenue comes from cycling events around the country. And that is why I am asking if you would come out on either September 7th or 8th and join us by riding for TEAM DPF (https://www.davisphinneyfoundation.org/team-dpf/) to support the Davis Phinney Foundation’s tremendous work. My wife Nancy, and I will be there both days to ride with you and support our wonderful community of “PWP’s” and their care partners!

One of the many things I really like about this particular event is the course options available. The day offers a family friendly, not too challenging 12-mile course, as well as 25, 50, 62 and 100-mile course options. The MHCC does a great job marking the courses on the road and provides rest breaks every 20 miles with food, drinks and toilet facilities. The post-ride barbeque is one of the best I’ve ever enjoyed. I promise you will enjoy some delicious food, soft drinks, and beer after a beautiful bike ride for a wonderful cause! 

Here are the steps to register:

Step OneClick here (http://events.dpf.org/site/TR?team_id=1330&fr_id=1130&pg=team) to join the Capital District Team DPF and create your own individual fund raising page, or make a one-time pledge if you do not want to fund raise. You will see the tab to click on the right side of the page. When considering you pledge goal or one-time pledge amount please take a look at the very cool TEAM DPF cycling clothing/gear and T-shirt,  (https://b9p3b5u6.stackpathcdn.com/wp-content/uploads/2019/06/2019-Incentives-updated.pdf). We would love to have everyone wearing Team DPF shirts (T or Cycling) the day of the event!!

Step Two – If you haven’t already, you now need to click here to register for the ride (https://www.bikereg.com/mhcc-century) with the Mohawk Hudson Cycling Club.

You can learn more about the cycling course and start times at MHCC registration page. Scroll to the bottom of the page and click on “show all notes”.

I realize that these cycling route options may be too difficult for many of us. You can still support Team DPF by passing this information on to others you may know who cycle, or by making a personal donation on the event page – See step one above.

If you have any questions, please feel free to reach out to me by email at shovey23@gmail.com, or phone at 484-894-0614.

Be Well! And hope to see you at either the Saturday or Sunday rides the weekend of September 7th & 8th!!

Steve Hovey

Steve
DPF, Ambassador


WPC 2019 Wrap-up

Highlights from Kyoto
Dear friends,
As we all return home from Kyoto, after participating in the 5th World Parkinson Congress, it’s hard to capture in one eNews the impact of the WPC experience and mention all the highlights. We’ll be posting for a few months about the outcomes, but our immediate reflection starts with the beginning of the week at the Opening Ceremony.


Tuesday – Opening Ceremony

The Opening Ceremony was a moving evening with incredible highs and a few tears shed during emotional tributes. Opening the night with a performance by the WPC Choir, singing the two winning songs from the WPC Song Competition, they started the evening off with an incredible showcase of the power of music. We are so impressed with our our Choir Director, Judi Spencer who used technology to allow 60 different people from around the globe to train together virtually to perform for the first time live at the WPC 2019. 

WPC President, A. Jon Stoessl, welcomed two key note speakers during the evening, Lyndsey Isaacs of UK to speak on behalf of care partners globally and Dr. Linda Olson, who spoke as a person with PD about perseverance, positivity and overcoming challenges we face in life. Video clips of these talks will be shared in a future eNews.

The evening was wrapped up with two lively performances. The first by Pamela Quinn and her dancers who trained virtually for the past six months in order to perform, as a group, for the first time at the WPC. They were followed immediately by Japanese taiko drummers, who inspired the audience with a lively performance that then lead to the Welcome Reception in the Exhibit Halls.

The winners of the WPC 2019 Video Competition were announced:

Winner of the WPC 2019 Video Competition Grand Prize: Anders M. Leines from Norway

Click here to watch his video

Winner of the WPC 2019 Video Competition People’s Choice Award: Fumiko Moriya from Japan
Click here to watch her video
Wednesday
WPC Award for Distinguished Contribution to the Parkinson Community was presented to Lorraine (Lori) Ramig, PhD, CCC-SLP & Susanna Lindvall, BS Chem by Marie-Françoise Chesselet, MD, PhD. Susanna Lindvall was unable to accept her award in person. ClickHERE to read more about all of the award winners.

Networking evening
As at past WPCs, Wednesday evening hundreds of non MD clinicians joined up for a social gathering and networking evening. The WPC believes in interdisciplinary care and supports the clinicians who treat and care for people with PD and their families. We want to make sure this community connects to learn from and support each other. 

THURSDAY
WPC Robin A. Elliott Award for Service to the Community Presented to Sara Lew Lai Heong & Nancy Tingey, OAM, CF, MA, BA by Eli Pollard


Music and Movement Lounge 
For the second time, we hosted the WPC Music and Movement Lounge. This fun evening was sponsored by Adamas Pharmaceuticals and was filled with performances by musicians, dancers, comedians and more. A huge THANK YOU to Eros Bresolin and Gaynor Edwards for all of their work to make the evening a success! Artists from a dozen countries joined in for great fun, some raunchy jokes, (thanks, Emma Lawton), and a lot of laughter. We even had a special cross cultural performance of the song “Cups” sung by Omotola Thomas with back up from the Japan Cups Team.

Friday
WPC Award for Distinguished Contribution to the Parkinson Community was presented to Soania Mathur, BSC,MD, CCFP by A. Jon Stoessl, CM, MD, FRCPC, FCAHS

Stanley Fahn Young Investigator Award
Mattia Volta, PhD was awarded the Stanley Fahn Young Investigator Award for his abstract “A novel target for neuroprotection: The small GTPase RIN inhibits LRRK2 to promote autophagy and reduce alpha-synuclein pathology.” Named after WPC founder and world renowned Parkinsonologist, this award is presented to ONE outstanding abstract submitter whose work is deemed innovative and visionary. We were delighted to present this award to Dr. Volta and we look forward to seeing his future research.

Abstracts
We had an extraordinary showing of abstracts authored by abstract authors from around the world. We believe that knowledge should be shared and accessible to all, which is why we post the abstract book as a free, downloadable pdf book that will be up indefinitely. Download your own copy here and share the link. 

Thank You!

If you had the chance to attend WPC 2019, you already know how amazing our volunteers were. They did everything from greeting people at the airport, to translating, to helping people navigate the convention center, to answering questions and so much more. Their hard work makes the congress possible and we thank each and everyone of you for the tremendous amount of effort you put into making the Congress a great experience for everyone.

Thank you to all of our sponsors, particularly our platinum sponsor, Takeda Pharmaceuticals, and our gold sponsors, Abbvie and Acorda Therapeutics. A complete list of our sponsors can be found HERE.

There would be no program with out the tireless work of our Program Committee. They are the ones with the extremely difficult task of creating a program that can reach, educate, and inspire everyone in the global Parkinson’s community. You can view the full list of committee members HERE.

Thank you to our Local Organizing Committee and to the Japanese Parkinson Disease Association for making the first WPC in Asia a success! They worked on everything from promotion, to fundraising, to our Parkinson’s Ready Program. Thank you for being such wonderful hosts. 

We would also like to extend our heartfelt thanks to everyone who supported the WPC Travel Grant program by purchasing items through the WPC Store or donating through our website or Facebook page. By providing travels grants to junior researchers and people with Parkinson’s from across the globe you have inspired and educated the next leaders in the Parkinson’s community. You can make a donation for WPC 2022 HERE.

We are so grateful to everyone who helped us spread the word about this amazing meeting. A special shout out goes to our Ambassadors and Blogger Partners who worked for years to help us build the WPC Community. We deeply appreciate that so many of you turned to your friends and colleagues and said this is worth your time, energy and money to be at this congress. It means more to us than we can express to have your support.

To each and every amazing artist who contributed to the Video Competition and the Song Competition, we are humbled that you shared your art with us. If you have not experienced all of the great submissions you can watch all of the entries to the Video Competition HERE and listen to all of the entries to the Song Competition HERE

In the coming months we will be sharing more of what happened at WPC 2019, but for now we thank all of you for being a part of our WPC family and we hope to see you in Barcelona!

Kind regards, 
Elizabeth “Eli” Pollard
Executive Director



June 30, 2019 – Hope Soars teams up with the Tri City ValleyCats for a day of baseball

Join us as Hope Soars teams up with the Tri City ValleyCats for our Second Annual Day at the Joe, Sunday July 8th. $25 ticket includes an all-you-can-eat buffet picnic at 4pm, game starting at 5pm plus a ValleyCats cap. Benefiting the Parkinson’s Research Fund at Albany Medical Center. For tickets contact Mark Burek at 518 428-0056.

https://www.facebook.com/events/347611795914399/permalink/347611902581055/

LSVT Loud and LSVT Big – voice and movement treatments

Recent advances in neuroscience have suggested that exercise-based behavioral treatments may improve function and possibly slow progression of motor symptoms in individuals with Parkinson disease (PD). The LSVT (Lee Silverman Voice Treatment) Programs for individuals with PD have been developed and researched over the past 20 years beginning with a focus on the speech motor system (LSVT LOUD) and more recently have been extended to address limb motor systems (LSVT BIG).

 The unique aspects of the LSVT Programs include the combination of

(more…)

9 Things You Should Not Have in Your House if You Have Parkinson’s

from https://parkinsonsnewstoday.com/2019/06/19/9-things-household-discarded-items/

Following is my list of things I suggest people with Parkinson’s disease should consider discarding:

1. Unworn clothing: If you haven’t worn an item of clothing in over a year, there’s a reason why. Maybe it’s too big or too small, or perhaps you don’t like the piece but feel guilty about getting rid of it because it holds a sentimental attachment. But it’s in the way, and as a person with Parkinson’s, you need all of that clutter out of your life.

2. High-heeled shoes: Get rid of your high heels — they are a prelude to a fall that is waiting to happen.

3. Throw rugs: Have them collected and disposed of immediately. Throw rugs were invented by the people who do hip replacements.

4. Inaccessible clothing and footwear: These include shoes that are hard to get on or have laces to be tied. Consider slip-ons. I got a pair of Skechers at Costco a few months ago. They slip on, have great traction, and are among the most comfortable shoes I’ve ever worn. You may have heard of Marie Kondo and her advice to clear your closet of anything that doesn’t spark joy. The same goes for pieces of clothing that you can’t button because of limited mobility. Find clothing that doesn’t make dressing frustrating for you. I recently read about a magnetized shirt for people with Parkinson’s. 

5. Expired items: Go through your cupboards and toss out outdated and expired food, vitamins, makeup, and medications. 

6. Unstable patio furniture: Flimsy, plastic patio furniture provides no stability. And if you do misjudge your position when trying to sit down, a garden chair can topple over, taking you down with it.

7. Clunky phones: Consider upgrading your phone for one that is easier to use and read. As someone with Parkinson’s, this piece of technology can offer you peace of mind, but if you can’t use it with ease, it’s useless.

8. Old books: Are you holding onto books that you’ll never read again? Don’t store something on your home’s prime real estate — bookshelves, coffee table tops, end tables — that you never use or don’t care to see. Get a Kindle or another e-reader — they’re more comfortable to hold than paperbacks or heavy hardcover books.

9. Items that don’t spark joy: Do you have items sitting around your home that hold bad memories for you? Throw them out or risk having those harmful recollections stirred up over and over again. Life is short. Live your best life now.


Dietary Supplement Eases Parkinson’s Symptoms, Improves Dopamine Function, Study Shows

N-acetyl-cysteine (NAC), a compound that is used by the body to produce an antioxidant called glutathione, may improve dopamine function and ease Parkinson’s disease symptoms, researchers report.

Their study, “N-Acetyl Cysteine Is Associated With Dopaminergic Improvement in Parkinson’s Disease” was published in Clinical Pharmacology & Therapeutics.

Low brain levels of the antioxidant glutathione (GSH) is one of the earliest biochemical changes in Parkinson’s, leading to oxidative stress — an imbalance between the production of free radicals and the cells’ ability to detoxify them — and eventually, cellular death.


Thaddeus F. “Ted” Burek – 1934 – 2019 | Obituary

Burek, Thaddeus “Ted” F. RENSSELAER Thaddeus “Ted” F. Burek, 85, passed away peacefully on Thursday, June 13, 2019, at the Hospice Inn at St. Peter’s Hospital in Albany, with his wife by his side. Born at home in East Greenbush on June 7, 1934, Ted was the son of the late Joseph W. and Frances A. (Byer) Burek. He is survived by his cherished wife of 63 years, Carol A. (Pitcher) Burek whom he met at Columbia High School. Ted was a star basketball player, scoring 27 points in one game to lead Columbia to their first Central Hudson Valley League Championship. Carol was a cheerleader who never stopped cheering for “Mighty Might” and she was devoted to him to the very end. After a stint in the U.S. Marines, Ted married Carol on September 10, 1955, in St. John’s Church in Albany. Ted was the owner of Century Monument Company in Rensselaer, and Grace Memorials in Colonie. He worked for many years at St. John’s Church in Rensselaer as superintendent for the school and Holy Sepulchre Cemetery in East Greenbush. Ted was a generous man to family and friends, as well as strangers in need, doing so because “that is what you do, help others.” He loved his family and friends immensely and will be greatly missed. Ted is survived by his five loving children and their spouses, Mark (Ann) Burek, David (Karen) Burek, Nancy (Kenneth) Troxell, Timothy (Tina) Burek and Mary (John) Bartis. He also leaves behind his 14 grandchildren, Joseph, Nicholas, Christian, Sean, Andrew, Rachael, Troy, Nathaniel, Zachary, Jackson, Steven, Lauren, Timothy, and Almy; and one great-grandchild, Vincent. Ted is also survived by his siblings, Mary LaPoint, Helen (Stephen) Krill and Paul (Maureen) Burek, as well as many nieces and nephews. He was predeceased by his siblings, Agnes, Joseph, John, Stanley, Frances, Margaret, Carolyn and Dorothy. Calling hours will be held from 3 to 8 p.m. on Tuesday, June 18, in St. Pius X Church, 23 Crumitie Road, Loudonville. A Mass of Christian Burial will be celebrated at 11 a.m. on Wednesday, June 19, in St. Pius X Church. Burial will be in the Holy Sepulchre Cemetery following the Mass. In lieu of flowers, the family requests donations be made to The Community Hospice Foundation, 310 S. Manning Blvd., Albany, NY, 12208 or St. Jude Children’s Research Hospital, , P.O. Box 1000, Dept. 142, Memphis, TN, 38148-0142.