Friends In Frederick 
Parkinson's Disease Support Group

August 7, 2019
Parkinson's Foundation of the National Capital Area (PFNCA) is proud to introduce the Parkinson's Mobile Resource Unit -- The AMP Mobile.  The vehicle is a former fire command unit from Ontario Canada that will be used to share information about Parkinson's Disease in community settings.  The truck features the ability to view educational videos, a Parkinson's lending library, a prize wheel and more.
The AMP Mobile will participate in the Montgomery County (MD) Fair August 9 to 17 in Gaithersburg, MD.  It will also participate in the Labor Day Parade on September 2nd in Kensington, MD.



June 27, 2019
On Thursday June 27th, representatives with the Parkinson's Foundation of the National Capital Area came to the Frederick Keys game to give out information, so people know how to fight the disease. Organizers with PFNCA were able to participate in some on-field actives as well. Jared Cohen, president and CEO of the foundation, says while there is no cure for Parkinson’s, there are steps people can take to fight the disease.

“What our foundation does is we provide programs, such as exercise or vocal cord strengthening and education programs to give people tools to fight Parkinson’s disease and to slow its progression,” said Cohen.

--CLICK HERE-- to see the complete story on the WDVM website.

The PFNCA sponsors an Exercise program, in Frederick, at OneLife Fitness North every Monday at 1:00 PM. --CLICK HERE-- to see programs the PFNCA offers in Maryland.

WDVM's inFocus series aired a special on Parkinson's Disease on the same night.

--CLICK HERE-- for the Muhammed Ali segment

--CLICK HERE-- for the Cause and Contributing Factors Section (features several local folks)

--CLICK HERE-- for the As the Disease Progresses segment

--CLICK HERE-- for the Wholistic Approach Segment

--CLICK HERE-- for the Speech Program Segment

June 13, 2019
The more specific you can be with your health care team about the types of PD symptoms you’re experiencing, the better your doctor(s) can tailor your treatment plan specifically to you.

But it can be hard to remember how certain symptoms have or have not affected you since the last time you connected with your health care team. That’s why American Parkinson's Disease Association (APDA) developed a new mobile phone app that makes it really easy to keep track of your symptoms frequently and more accurately, and share that information with the people who are treating you.

The APDA Symptom Tracker app guides you through a simple set of questions that has you rate how certain motor symptoms (such as tremor, rigidity, balance) and non-motor symptoms (fatigue, anxiety, depression, and others) are affecting you. It then creates a simple graph to indicate which symptoms are most impacting your quality of life.

You can save this graph in the “My Library” section of the app, and also email to members of your health care team. Over time, you can compare your results to see if certain symptoms are getting worse, and determine which symptoms need to be addressed more urgently than others.

The APDA Symptom Tracker also has a special “Questions for the Doctor” feature that generates a list of suggested follow-up items for you to review with your doctor about symptoms you are currently experiencing, but also about preventative care. You can bring a printout of the questions with you to your appointment so you don’t forget to ask any that are important to you.

The app also features a useful list of resources that connects you directly to a wealth of quality, credible PD information.
The APDA Symptom Tracker can help you have more meaningful conversations with your healthcare team and better manage your disease. Download the free app from the Apple App Store or Google Play today!

June 13, 2019
Over the years, Maria De Leon noticed "as a physician and a patient that many of us don’t pay close attention to what our bodies are telling us until it is blaring WARNING, WARNING, WARNING! Unfortunately, by the time it is so blatantly obvious that something is wrong, we have typically veered off the path for so long that it may take weeks if not months to recover and regain control. I have never met a more stoic group of people than those with Parkinson’s disease; subsequently we as a group tend to push through physical pain, discomfort, malaise, and fatigue, not to mention the ever-present mental exhaustion."

--CLICK HERE-- to read more on Parkinsonsdisease.Net

April 13, 2019
Exercise was the theme of the Parkinson's Community Seminar held in Hagerstown Maryland on April 12, 2019. With expert speakers from Johns Hopkins, Comprehensive Neurology, and Ryan Physical Therapy; the need for Parkinson's Disease patients to exercise came up again and again. 

The 150 participants were provided information ranging from from an Introduction to Parkinson's Disease, to a Treatment Overview, to a discussion of the Non-Motor symptoms of Parkinson's Disease. Dr. Stephen Ryan used audience volunteers to demonstrate some of the physical therapy and exercises that can make a difference in the daily lives of Parkinson's patients.

Sponsored by the Four State Alliance for Parkinson's Support and the Otterbein United Methodist Church, the program brought Parkinson's Disease experts to Western Maryland to educate those with Parkinson's Disease, their families, caregivers and the public. 

Most importantly, the seminar was a chance for people with the same disease to get together and talk. They share information and learn from each other.

In addition to the program, there were vendors from community organizations, drug companies, and manufacturers who serve those with movement disorders.

Parkinson's Disease a a progressive neurological disorder that has no cure. People with Parkinson's Disease often experinece slow and smaller movements, resting tremor, rigidity, and balance problems. For many people, the first symptoms are loss of smell and sleep disturbances. Other common "non-motor" symptoms include soft speech, trouble swallowing, anxiety, and depression. Visit our About Parkinson's page.

The program included breakfast (Hadley Farms and Martins), lunch (Chick-fil-a), door prizes (Spichers, Martins, and Weis), and time for questions and answers. 

 --View local TV Coverage on WDVM--

--Frederick News-Post Story--

--Martinsburg Journal story--

March 20, 2019
Ancient physicians used scent as a diagnostic tool, and although olfactory tests are not common in modern medicine, diseases such as diabetes are often associated with a particular smell. However, there has been little evidence to tie scent to neurodegenerative disorders. Enter Joy Milne, a “Super Smeller” who can distinguish the unique odor of Parkinson’s, which she can detect in subjects’ sebum before clinical symptoms appear.

This waxy, lipid-based biofluid moisturizes and protects the skin, particularly on the forehead and upper back. Excessive production of the substance is a known symptom of Parkinson’s disease.

So, Perdita Barran and colleagues wanted to determine what chemicals make up the scent in sebum that Milne is picking up on in Parkinson’s patients so that they can eventually develop a diagnostic test for the disease.

--READ MORE-- at the American Chemical Society

--Watch Video Story-- at CBS News

--READ MORE-- (a slightly different take) at Pharma Intelligence

March 12, 2019
Larry Zarzecki traces his decision to fight for lower prescription drug prices to the time he was in line at the pharmacy a few years ago just before Christmas. The retired Maryland law enforcement officer watched as an elderly woman realized she didn’t have enough money to pay for the prescriptions her doctor had ordered.

“The lady reminded me of my grandmother,” says Larry, 57, who was forced to retire from law enforcement 10 years ago when tremors in his right hand led to a diagnosis of Parkinson’s. The woman, Larry says, “put her cat food up on the counter, some trail mix and Cheez-It crackers.” When she unpinned her small change purse from inside her blouse and took out her money, she realized she didn’t have nearly enough money to pay the $485 prescription drug bill.”

Stop Rx Greed Cut Drug Prices NowAs the woman was trying to decide which medication she could do without — after putting back everything else except her cat’s food — Larry reached over and gave the pharmacist his credit card to pay for the medicine. Pretty soon others in line chipped in for her other groceries and gave her some spending money.

“Everybody in line was balling like babies,” Larry recalls. 

--READ MORE-- at AARP

--READ MORE-- about the Maryland prescription drug affordability campaign at WFMD

February 27, 2019
So, I had an appointment with the dermatologist.After a thorough body check and five biopsies, I was free to leave. The nurse stayed back with me after the doctor left because I struggled to move. She asked when I was diagnosed with Parkinson’s. After I answered “2004,” she replied, “Isn’t that young for Parkinson’s?” Not as young as when the symptoms began 10 years before that, I wanted to answer. 
She followed that question with another: “Did it run in my family?”
No.
“Not even one relative?”
No.
“Are you sure?”
Yes.
While I dressed and walked out to where my husband waited in the car, I shook terribly. That’s something I hadn’t done in quite a while. I was sure it was the combination of numbing five different areas with an intrusive needle and the anxious feeling that came over me with the news that spots could be cancerous. However, what caught me almost more off guard was the nurse’s questioning. 
I guess what surprised me is how uninformed so many still are.

--READ MORE-- at ParkinsonsNewsToday.com

--Visit our Recent Speakers page to learn how to get a FREE Aware In Care Kit-- to help you educate the educated.

February 21, 2019
Powerful Tools for Caregivers- PTC is a six week program for caregivers that focuses on the caregiver and providing problem solving strategies and tools to help empower caregivers to manage stress and problem solve more confidently and competently. Our next session will begin March 20 and run for six consecutive Wednesdays- 1 p.m. until 3 p.m.  Call Mary Collins, Caregiver Program Coordinator at (301) 600-6001 to register or for more information.  Class is limited to 12 participants and attendance for the entire six weeks is required. Only a few seats left!

January 18, 2019

 PFNCA is proud to announce an PFNCA Exercise for Parkinson's program in Frederick, Maryland.  This new program is made possible with generous support from Onelife Fitness.   

UPDATE: Beginning Monday June 3, 2019; this class will be held on MONDAYs at 1:00 PM.    

The class is held weekly on Thursdays at this location from 12:00 p.m. to 1:00 p.m. There is no cost to attend this class but annual registration for PFNCA Wellness Programs is required.  There is a $30 annual administrative fee, which allows participants to attend any of the nearly 250 wellness programs that PFNCA provides each month.  This fee can be waived for financial hardship.   
  
OneLife Fitness membership is not required to participate.  There is handicap parking in the lot behind the building. To register, please click here or call (301) 844-6510.

For information contact:

Banu Luu
Program Manager
Parkinson Foundation of the National Capital Area
8830 Cameron St. #201
Silver Spring, MD  20910
www.parkinsonfoundation.org
(301) 844-6510 x2

December 21, 2018
On Friday, December 21, 2018, the U.S. Food and Drug Administration approved Inbrija, an inhaled levodopa powder, for the treatment of "off" episodes when Parkinson's symptoms are not well controlled with oral medication.

--READ MORE-- on the Michael J Fox Foundation website

December 19, 2018
Rock Steady Boxing is coming to the downtown Frederick YMCA. The program is listed in the Winter 2019 Program Guide. Rock Steady Boxing is a noncontact enriched fitness program for people with Parkinson's Disease. In Rock Steady Boxing, the opponent is Parkinson's Disease.

For more information on this BRAND NEW (to Frederick) program, contact Jaime Fisher at jfisher@frederickymca.org 

Update 1/16/2019: The equipment has arrived. We are told you should be contacted soon if you have already emailed Jaime Fisher

Update 1/21/2019: Look for a launch in March 2019

Rock Steady Boxing joins the popular Pedaling For Parkinson's classes at the downtown YMCA. You can contact Jaime Fisher for information and registration for Pedaling For Parkinson's also.

November 5, 2018
A pair of local Parkinson's Disease Support groups have begun a series of original podcasts on their website. These sister organizations from Harrisburg and the Mechanicsburg area of Pennsylvania have a website called HelpWithParkinsons.com. That's not too unusual. However, their series of original podcasts about Parkinson's Disease is unique. Most local support groups don't have the resources to put together original content about the disease.

The podcasts cover a range of PD topics and use local experts. The series is hosted by Warren Butvinik, a retired pharmacist who was diagnosed with PD in 2009.

To listen to recent Podcasts --CLICK HERE--

UPDATE (November 14, 2018): The latest podcast Appendix, Stem Cell & Ultrasound 3 New Studies --CLICK HERE--

UPDATE (December 13, 2018): There are now 23 podcasts in the series.

The Central Pennsylvania PD Support Group - Mechanicsburg (West Shore) is a member of the Four State Alliance For Parkinson's Support.

November 2, 2018
In experiments performed in mice, Johns Hopkins researchers report they have identified the cascade of cell death events leading to the physical and intellectual degeneration associated with Parkinson’s disease.

“Nailing down how cells die in this disease increases our hope that someday we will be able to treat and possibly cure Parkinson’s disease,” says Ted Dawson, M.D., Ph.D., director of the Institute for Cell Engineering and professor of neurology at the Johns Hopkins University School of Medicine.

To find out more about which “road” to cell death Parkinson’s cells travel, the research team treated lab-grown mouse brain cells with preformed clumps of alpha synuclein and observed their response over the course of 14 days. As the brain cells began to die off, the researchers observed that they had “turned on” a protein called PARP1, a gateway to cell death via Parthanatos.

They then tested whether blocking PARP1 could rescue the cells from certain death. In an additional experiment, the researchers again added alpha synuclein clumps to healthy mouse brain cells and then treated the cells with one of three drugs that block PARP1’s function: veliparib (ABT-888), rucaparib (AG-014699) or talazoparib (BMN 673), all currently used by oncologists to treat breast and ovarian cancers. The researchers found that the cells treated with these drugs were protected from death at 14 days.

To test this principle in living mammals, the research team injected alpha synuclein clumps into the brains of normal mice and mice genetically engineered to lack the PARP gene. The researchers found that the normal mice began to show muscle weakness, loss of coordination and decreased movement, as seen in tests of the mice’s grip strength and the ability to climb down a vertical pole, three months after treatment. However, both the mice lacking PARP and normal mice treated with PARP blockers showed no decline.

--READ MORE-- at the Johns Hopkins website

September 28, 2018
 The president signed a bill that increases federal research funding and takes important steps to better support our nation's care partners. Through its tireless advocacy work, the Parkinson's community played a role in the passage of this important law. 

A critical provision provides funding for the National Neurological Conditions Surveillance System. This database will capture demographic information on people living with neurological diseases, which is key to helping researchers target their work and increase understanding of these conditions. While it was signed into law in late 2016, the database was never funded or implemented. But with the passage of this bill, it now can become a reality. (As the law does not specify which diseases the National Neurological Conditions Surveillance System will track, the Foundation is working with the Centers for Disease Control and Prevention, which will house the database, to push for the inclusion of Parkinson's.)

Another significant provision in the law provides $300,000 to fund activities outlined in the RAISE Family Caregivers Act. This act was signed into law in January 2018, thanks in part to the advocacy efforts of the Parkinson's community, and directs the government to create a national strategy to better support the estimated 40 million care partners across the country. The $300,000 will be used to create a Family Caregiving Advisory Council, which will identify actions that communities, providers, policymakers and others can take to better assist care partners.

--CLICK HERE-- to read more at the Michael J Fox Foundation

August 11, 2018
You don't think Parkinson's Disease is funny? Then you've missed Yuma Bev the Parkinson's Humor lady. Diagnosed at age 47 (that's early onset), Beverly Ribaudo just can't help but seeing funny stuff in the disease. "Humor comes naturally to me and a little disease like Parkinson's can't take it away".

--CLICK HERE-- for a sample of her sense of fun.  

If you can't get enough of YumaBev, she has written a book.  --CLICK HERE-- to buy her book (which is also available on smile.amazon.com and for Kindle).

There are more links to YumaBev on our Resources and Links page

UPDATE: We've added a copy of the book to our library.

November 15, 2017
Comprehensive Neurology - 196 Thomas Johnson Drive, Frederick, MD - has added a Movement Disorder Specialist to their staff. Laura Alissa Brosbe, D.O. completed her residency in Neurology and fellowship training in Movement Disorders at the University of Maryland Medical Center. She attended undergraduate school at Boston University and medical school at Nova Southeastern University in Florida.

Comprehensive Neurology appointment number: (240) 566-3130

 The Parkinson's community welcomes Dr. Brosbe to Western Maryland.

UPDATE: Dr. Brosbe was the guest speaker at Hagerstown Support group meeting in August 2018

March 27, 2017
Larry Zarzecki, a former Maryland State trooper, paced the room at Carroll Hospital, speaking loudly, almost barking, at the dozen or so Parkinson's patients who had gathered for a unique demonstration.

"How many don't think they can box? You don't think you can box?" Zarzecki asked during the Thursday demonstration.
Just one hand went up, that of a man sitting quietly in his wheelchair. Zarzecki didn't hesitate.
"I need a pair of gloves."

Zarzecki is a member of Rock Steady Baltimore, a Timonium nonprofit that utilizes noncontact boxing exercises in an effort to reduce the symptoms of Parkinson's, such as tremor, and improve balance and other functions. "I can attest to this being true because I have Parkinson's myself," Zarzecki said.

--CLICK HERE-- to contact Larry

--READ MORE-- at the Carroll County Times

For more information on Rock Steady Boxing, visit their WEB SITE http://baltimore.rsbaffiliate.com/

UPDATE: New website --CLICK HERE--

Also, Read about Bonnie's Rock Steady Boxing experience in our March 2017 Newsletter.

If you don't receive our newsletter and would like to, visit our Contact US page.

Updated April 20, 2016
Watch the WRC - NBC4 story about Frederick County resident Kimberly Spletter and Focused UltraSound for Parkinson's Disease.

--CLICK HERE-- to watch the video

--CLICK HERE-- for a story from Channel 19 in Charlottesville, VA

--CLICK HERE--for the Baltimore Sun story

--CLICK HERE--for the Frederick News-Post story

--CLICK HERE--for the WHAG - Your 4 State story

--CLICK HERE--to see John Grisham story on CBS about Focused Ultrasound

March 20, 2016
Check out the story on the front page of the March 20, 2016 Frederick News-Post. --CLICK HERE-- to read the story on the News-Post web site.