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Welcome to the Rhode Island Chapter of the American Parkinson Disease Association

Welcome to the website for the Rhode Island Chapter of the American Parkinson Disease Association. Our mission is to "Ease the Burden, To Find A Cure" for the people with Parkinson's Disease and their caregivers in Rhode Island and Southeastern Massachusetts. Our goal is to provide education, support and socialization. Along with educational information found on our website will hold many event, both educational and social during the year and there is something for everyone. Please feel free to call: 401-736-1046 with any questions that maybe of concern to you. You may email us at:   Mthibodeau@kentri.org

Our mailing address is:

American Parkinson Disease Association- Rhode Island Chapter

PO Box 41659

Providence, Rhode Island 02940


17th Annual Optimism Race Walk & Roll for Parkinson Disease - September 12th

17th Annual Optimism 

Race Walk & Roll for Parkinsons

in Honor of  Dr. Leslie Mahler, PhD, CCC-SLP

September 12, 2015

Goddard State Park

Warwick, Rhode Island

Presented by

Our 17th Annual Race, Walk & Roll for Parkinson's Disease Will be held on September 12th at Goddard State Park in Warwick.  Last year over 1200 people  attended and we had 55 teams registered. Our RI APDA families and friends raised  $75,000 !!!

Special thank you to our presenting sponsor Care New England.

We could not do this with out you!

REGISTRATION IS NOW OPEN!!!!

To learn more about this event and how to register please check out our informations under our walk tab at the top of our home page!

 


8th Annual Optimism Golf Tournament at Quidnessett Country Club

Thank you to all who helped make this event such a success!!! See you next year!!

It is time again for our 8th Annual Parkinson's Optimism Golf Tournament. This year our event will be held at beautiful Quidnessett Country Club. Come and join in the fun while raising funds for our Respite Care program on Monday, June 22, 2015.  This is a scramble format. Lunch and check in starts at 11:30am with a shot gun start at 1:00PM. Following the tournament, our cocktail hour begins at 6:00 pm and a Prime Rib Dinner to follow along with raffles and prizes!  

Thank you to FLOOD AUTO GROUP for again supporting RI APDA as our Hole in One Sponsor!    For more Information....

 

 


Support Group Summer Schedule - Some July Meetings cancelled

Some of our support groups...have taken some time off for the summer. While others will continue through the summer.

July meetings for Cranston, Coventry, Friends & Family and Young Onset -Pawtucket and Warwick are cancelled for July. They will all meet again in August!!

Please call the support group leaders to confirm meeting times and places! That information can be found.....


July 13th - South County Support Group is on the MOVE!

The South County Support Group is on the move! We will meet on July 13th at our new location on the URI Campus, Independence Square, 25 W Independence Way, Kingston, RI. We will meeting in the large conference room. Going forward we will meet the 2nd monday each month at our new time of 1:00PM!  Dr. Leslie Mahler has agreed to be our new support group leader and you may reach her at: lmahler@uri.edu 


July 14th- Chapter Board Meeting

The next  meeting of the APDA Rhode Island Chapter will be on on Tuesday, July 14th at 6:30PM. We meet the second Tuesday each month at Kent Hospital in the Westmoreland Conference Room on the first floor. This meeting is open to the public and all are welcome.


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July 22nd - Dr Bellafiore Lectures at Arturo Joe's in Narragansett

On Wednesday, July 22nd Dr Bellafiore will be our guest speaker at Arturo Joe's Restaurant at 140 Point Judith Rd in Narragansett. His Topic; "Managing  Parkinson's Disease".  The luncheon and lecture will begin at 12:00PM. The luncheon and presentation are sponsored by Teva NeuroScience. Reservations are required. Please RSVP to Mary Ellen at 401-736-1046.

 


August 8th - Deep Brain Stimulation Support Group

The Deep Brain Stimulation Support Group will meet on Saturday, August 8th at 10 am at Kent Hospital in the Doctors Auditorium. This will be a general discussion meeting with both those who have had DBS and those who would like to learn more about it. Kim Givens from Medtronic will be in attendance!


August 22nd - Our "Friends & Family PD Support Group" is on the move!

Our "Friends & Family" Caregiver PD Support Group is canceled for July and will meet again on August 22nd at their new location!.  Going forward we will meet the 4th Saturday each month at 10 AM at Atria Senior Living Harborhill 159 Division Street East Greenwich, RI 02818

 For more details about this or any support group please call Mary Ellen at 736-1046.


New Study on Fatigue in Parkinson's Recruting Participants

Have you been diagnosed with Parkinson's disease? Do you suffer from fatigue on a daily basis? We are looking for adults diagnosed with Parkinson's disease who suffer from fatigue on a daily basis.
Why:
• To understand how individuals with Parkinson's disease describe their fatigue and how if affects their life.
• To understand how individuals with Parkinson's disease manage their fatigue.
• To understand how fatigue in Parkinson's disease is treated by health care providers.

Fatigue is a common symptom in Parkinson's disease and can have a significant and negative impact on one's life. By sharing your experience, you can assist nurses in better managing fatigue in Parkinson's disease and you may gain insight on your own fatigue. For more information on how to participate in ths study, please check out the attached flyer.


Summer is Here! Remember to have your yearly skin check!


Summer is here and it is time to remind all our RI APDA members to have a yearly skin check and always reach for the sun screen! People with Parkinson's are at higher risk for Malignant Melanoma. Click through to learn the ABC's of Melanoma and read more about Melanoma .....


Parkinson's Disease Psychosis by Joseph H. Friedman, MD

If you are the caregiver of someone with Parkinson's disease (PD), you are likely well aware of the common motor symptoms associated with the condition, like tremors. However, you may not be aware that non-motor symptoms (those unrelated to physical movement), such as psychosis, commonly develop as the disease progresses.

To read the full article .....

 


Fighting Parkinson's by Tim Bickford

Fighting Parkinson's

By Tim Bickford

As I turned left down a back lane that led to a big old Pawtucket mill with a giant brick smokestack across from a recycle and scrap metal business, I followed the arrows to the back of the mill to the "Fight2Fitness" boxing center. Why would a sixty-five year old retired teacher want to go into boxing? One punch to my kisser and I would be close to rigor mortis!! I'll always remember Mohammed Ali pummeling his opponents with lightning jabs, hooks and uppercuts shouting "What's my name??" Luckily, this was not about receiving punches, but throwing them.

Recent studies have shown that intense exercise in "neurologically vulnerable points " (like my arm and leg tremors) can drastically reduce the symptoms of Parkinson's. The words of my doctor linger in my thoughts—"Parkinson's is a degenerative brain disease with no cure".... (Yet!!)... I was willing to try most anything to fight back........


Rock Steady Boxing at Fight2Fitness Gym in Pawtucket!

Rock Steady Boxing New England (RSBNE) provides an effective form of physical exercise for people who are living with Parkinson's. RSBNE is an affiliate of Rock Steady Boxing, a non-profit gym in Indianapolis founded in 2006 by former Marion County (Indiana) prosecutor Scott C. Newman who was diagnosed with Parkinon's at age 40.  This new exercise program is now available in Rhode Island at Fight2FitnessGym, 65 Blackstone Ave. Pawtucket, RI. To find out more check them out online at: www.RockSteadyBoxingNE.com or call 401-728-2039. Click through to see their flyer. 


"Shake, Rattle & Roll With It; Living & Laughing with Parkinson's" by Vikki Claflin

Vikki chonicles her hilarious and ofter poignant journey, dealing with Parkinson's Disease with her usual irreverance and laughter. Whether she is chasing her Chihuahuha or learning to pole dance in her living room, Vikki will have you laughing and crying at the same time.  Reviews include: "There is nothing funny about Parkinson's. Until there is. Vikki Claflin makes you laugh when you feel like crying. Shake, Rattle & Roll With It is a blueprint for getting through the often painful turns in life with grace, fortitude, and thank God, a wicked sense of humor." - Kathleen O'Donnell, author.

Vikki has been featured on many websites, Erma Bombecks's Writer's Workshop, The Huffington Post, Scary Mommy, Generation Fabulous to name just a few! 

We will soon have a copy in our lending library or you can obtain a copy on Amazon.com


New Study to Evaluate Speech and Swallowing Before and After DBS!

There is a new research study recruiting participants to evaluate speech and swallowing both before and after Deep Brain Stimulation Surgery.  The study will be conducted at the University of Rhode Island Speech and Hearing Centers two locations. You may chose the URI Campus in Kingston or their Independence Square location in Pawtucket. For more information please review their flyer....


Dance for our Aging Population- 8 week pilot begins in February

Dance for our Aging Population - DAP now meets at Brown University, Ashamu Dance Studio 77 Waterman St Providence, RI. These classes are under the direction of Rachal Balaban, Regional Coordinator for Dance for PD assisted by Brown University students. They meet on Thursdays from 11:00  to 12:15 PM. The class is open to our aging population and designed for people with movement challenges. No experience required, Caregivers are welcome. Classes are free! For more information....


Don McCarthy- This years LifeTime Achievement Award Recipient

On September 13th the Rhode Island Chapter presented Don with our "Lifetime Achievement Award" for a lifetime of service to our country and his active participation in our chapter!

On June 6th we remembered those who hit the beaches of Normandy and saved the world our thoughts are with our friend Don McCarthy.  Don returned to that beach this past summer to remember friends lost and heroes born. This article written by George Morse for AAA tells some of Don's thoughts as he planned for this memorable trip back to that beach, to that moment in history. All Don's friends at RI APDA wish him safe passage on his journey and we thank him for...his service and our FREEDOM!
http://www.aaahorizons.com/content.cfm?a=2304


Current Research Opportunities

Many members of RI APDA have participated or are currently participating in research studies at varies sites. We will now maintain a list of ongoing research studies that are available for those who are interested. As researchers make us aware of new studies they will be added to our website. For questions about participation.....

New studies at URI!


PD Exercise Instructors- Your help is needed!

In the next few weeks, the Department of Physical Therapy at the University of Connecticut will be sending out a research survey that focuses on gathering information on both a statewide and national level on the structure and intensity of Parkinson's exercise classes available to individuals with Parkinson's in each state. The end goal of our research is to provide an effective representation for each state of the exercise classes available for Parkinson's patients. Therefore, if there are any Parkinson's exercise class instructors who would like to lend assistance in providing more information about their classes in a short survey that will be sent out it would be greatly appreciated. Our goal is to capture the input and feedback from as many Parkinson's exercise class instructors in each state as possible to ensure that each state and region of the United States is equally and effectively represented in the research publication that will result from this research study.

For more information about the study please contact Tim Isselee at the University of Connecticut: tim.isselee@uconn.edu.


Breaking News

This new section on our website will keep you up to date on the latest articles found on the internet regarding Parkinson's disease. Just follow through to the next page and click on the links provided to be taken to articles of interest....


VA to Extend Benefits for Tramatic Brain Injury for those who also have Parkinson's

WASHINGTON – Some Veterans with traumatic brain injury (TBI) who are diagnosed with any of five other ailments will have an easier path to receive additional disability pay under new regulations developed by the Department of Veterans Affairs.The new regulation, which takes effect 30 days from today, impacts some Veterans living with TBI who also have Parkinson's disease, certain types of dementia, depression, unprovoked seizures or certain diseases of the hypothalamus and pituitary glands. To read the full press release.......


Making the Connection Between Brain and Behavior, Second Edition

Dr Joseph Friedman's new book is now available!

"Making the Connection Between Brain and Behavior, Second Edition"

The only complete and up-to-date book addressing the most common behavioral symptoms of Parkinson's Disease (PD), including depression, anxiety, hallucinations, disrupted sleep, and compulsive behavior. For more information....


Join RI APDA Chapter facebook group

   Yes!! Rhode Island APDA has it's own group on Facebook. Use this social networking site to meet others in RI and across the country who have or care about someone with Parkinson's disease.

http://www.facebook.com/#!/groups/119816945170/


Yoga Classes at the Kent Y for Individuals with Movement & Balance Disorders

 

The New and Improved Kent Y now has New & Improved Classes for People with Movement & Balance Disorders. Kent YMCA has Yoga classes with you in mind. For more information....


Donated Goods or Services

The Rhode Island Chapter of the American Parkinson Disease Association is a non-profit 503 (c).

Before you purchase a large item such as a walker or wheelchair please give us a call. We may have someone who is willing to donate such an item directly to you.

Call our office at 401-736-1046 and we will put you in touch with the families who are donating.

Contributions of goods and services are just as valuable as a monetary donation. They save on costs which allows the Rhode Island Chapter APDA to operate efficiently and use the maximum amount of funds toward our mission to "Ease the Burden, To Find a Cure". Please contact us if you would like more information about contributing goods and/or services to the RI Chapter APDA.  401-736-1046

Items needed:  Office supplies (paper, envelopes, ink),  laptop computer, golf items,  and all home medical devices (walkers, shower chairs, etc.)

For more information about items that are needed or available...