Friends In Frederick 
Parkinson's Disease Support Group

January 19, 2021
Simple vision tests can predict which people with Parkinson’s disease will develop cognitive impairment and possible dementia 18 months later, according to a new study by University College London researchers.

The study, published in Movement Disorders, adds to evidence that vision changes precede the cognitive decline that occurs in many, but not all, people with Parkinson’s.

In another new study published today in Communications Biology, the same research team found that structural and functional connections of brain regions become decoupled throughout the entire brain in people with Parkinson’s disease, particularly among people with vision problems.

The two studies together show how losses and changes to the brain’s wiring underlie the cognitive impairment experienced by many people with Parkinson’s disease.

--READ MORE-- at Neuroscience News

December 10, 2020
Purdue University speech scientist Jessica Huber has watched people with Parkinson’s disease struggle to speak, which often led to social isolation and depression.

She spent time with these patients as she organized support groups and involved them in her research program. The experience inspired Huber to invent a simple wearable device to help improve the world of these individuals, and it led to the development of her own company, SpeechVive.

“Some of these patients lose themselves within the disease, and I like seeing them come back to themselves,” said Huber, a professor of speech, language and hearing sciences. “There is one guy who is really funny - just hysterical - but the disease affects the way he can express that humor vocally and facially because of the way the disease affects his muscles. But it comes back with the device. And I love seeing how other people see he is funny. It’s really rewarding to see that.”

--READ MORE-- at Purdue University News

November 26, 2020
For more than a decade, Mike Justak has been lighting up his Plymouth neighborhood with a synchronized light show set to holiday music. 
The annual light show, which features more than 60,000 lights synchronized to a variety of songs from Christmas and Hanukkah tunes to top hits, aims to raise awareness and funds for Parkinson’s disease. 

It’s a cause that's close to Justak’s heart. He was diagnosed with Parkinson's disease more than 15 years ago. The light show, called PD Shimmers, is named for the shimmer of a light bulb, which Justak says is the equivalent of a Parkinson’s tremor.

Justak, who spends all year programming the light show and months putting up all the lights, wasn't sure he'd do it this year. His Parkinson's is getting worse, so the show has a smaller footprint than years past (it's no less grand, though) and he questioned if people would even come to it because of the COVID-19 pandemic. 

But in a year when PD Shimmer's message is all the more poignant, Justak realized a drive-by light show is a holiday tradition that doesn't need to be canceled by COVID.

"This will give you something to do, and for a lot of people it's part of their ritual," Justak said. He's spoken to families who've come to his show every year since it began, which means a lot to him. "That's big for the light show guy."

--READ MORE (and see a preview of the light show)-- at  Bring Me The News

November 17, 2020
By LAUREN J. MAPP

North Park, California resident David Higgins didn’t know what was wrong when he started feeling increasingly tired and weak, almost a decade ago. His feet resisted the urge to move, and walking across the room felt like moving through mud.
Then his friends noticed his changing walk and movements.

After experiencing slow but increasing symptoms, and ruling out other health conditions, Higgins was diagnosed with Parkinson’s disease in December 2011. Soon after, he formed a monthly support group with six other people who were diagnosed around the same time.

When the informal support group needed someone to work out the logistics of finding a meeting space and filing paperwork as a nonprofit, Higgins stepped up as a volunteer coordinator.

Building a community of people living with Parkinson’s disease and their family caregiver or care partners can make the daunting task of learning about a new diagnosis far less intimidating.

--READ MORE-- at the San Diego Union Tribune

November 13, 2020
I began photographing Philadelphia’s public art, and the relationship people have with it, as a way to fight back against Parkinson’s disease. I was diagnosed in the fall of 2016 and retired from the Inquirer about a year later. By that time I had spent my whole career working in photography, and to this day, it continues to be my lifeline and escape mechanism. As the project progressed, I adopted a Muhammad Ali quote as my mantra: “Don’t count the days, make the days count.”

--READ MORE-- at the Philadelphia Inquirer

November 4, 2020
Michael J Fox is opening up about the “darkest moment" of his life that occurred two years ago.

Speaking with PEOPLE for this week's cover story, the Family Ties actor, who went public with his Parkinson’s diagnosis in 1998, discusses the unrelated health setback that led him to question his signature optimism — and how he gained it back.

In 2018, a noncancerous tumor on Fox’s spine was growing rapidly and causing horrible pain throughout his body. “I was heading for paralysis if I didn’t get it operated on,” Fox, 59, tells PEOPLE.

The operation was successful and Fox began a four-month process in which he had to learn to walk again. Thinking the worst was behind him, he vacationed with his family on Martha’s Vineyard and returned to their New York City apartment alone so he could film a cameo in a Spike Lee movie the next day.

But on the morning of the shoot, Fox fell in the kitchen and badly broke his arm. “That was definitely my darkest moment,” says Fox, who details the story in his upcoming fourth memoir, No Time Like the Future.

“I just snapped. I was leaning against the wall in my kitchen, waiting for the ambulance to come, and I felt like, ‘This is as low as it gets for me.’ It was when I questioned everything. Like, 'I can't put a shiny face on this. There's no bright side to this, no upside. This is just all regret and pain.' "

--READ MORE-- at People Magazine

September 16, 2020
During a pandemic, you may be taking extra precautions to keep you and your family safe and prepared, including making sure you have everything you need at home. This guide contains information on food planning, including what to buy, how much to buy, and preparation tips.

--READ MORE-- of the USDA guide at Today's Caregiver

August 31, 2020
A potential Parkinson’s treatment called cerebral dopamine neurotrophic factor (CDNF) continues to be safe and well tolerated by patients with moderate disease using it for up to one year in a Phase 1/2 trial, and shows a promising potential to ease motor symptoms and slow disease progression, Herantis Pharma, its developer, reported.

CDNF is an investigational therapy based on a protein naturally found in the blood and cerebrospinal fluid (CSF), the liquid surrounding the brain and spinal cord.

The medication is reported to have a multi-modal mechanism of action, allowing it to tackle several mechanisms involved in Parkinson’s at once. These are thought to include lowering brain inflammation, preventing the loss of neurons, improving the workings of damaged neurons, and blocking the formation of toxic alpha-synuclein aggregates.

--READ MORE-- at Parkinson's News Today

August 28, 2020
Reminding others that “masks save lives” isn’t just sound advice. It’s a scientific fact that wearing one in public can help to slow the spread of SARS-CoV-2, the virus responsible for the coronavirus disease 2019 (COVID-19) pandemic.

I’m very careful to wear a mask outside my home whenever I’m out and about. I do it not necessarily to protect myself, but to protect others. If by chance I’ve been exposed to the virus and am currently incubating it, I wouldn’t want to spread it to other people. And any of us could be an unknowing superspreader. We owe it to everyone we encounter, especially those who are more vulnerable, to protect them. As my NIH colleague Tony Fauci recently demonstrated , it’s possible to wear your mask even while you’re outside exercising.

--READ MORE-- of this story by the director of the National Institute of Health on Caregiver.com

August 14, 2020
Last month, The Michael J. Fox Foundation reported that more than 7,200 people responded to a survey on COVID-19 through our online clinical study, Fox Insight.

Results showed that people with Parkinson’s who did and did not have COVID-19 were impacted by the pandemic in numerous ways. Both groups experienced new or worsening motor and non-motor symptoms, with significant changes related to tremor, sleep and anxiety. And 62 percent of respondents with Parkinson’s reported an issue accessing health care.

These findings will help us advocate for improved access to care on behalf of the Parkinson’s community. And they could help clinicians understand more about patient needs during the pandemic and provide better care.

--READ MORE-- or explore the study at MichaeljFox.org

August 10, 2020
After proving safe and tolerable in control volunteers, a therapy against a leading Parkinson’s drug target will continue testing with a sizable grant from The Michael J. Fox Foundation (MJFF). Last week German biotechnology company MODAG announced positive safety results from its first trial of drug anle138b against the protein alpha-synuclein. The Fox Foundation has awarded MODAG $1.4 million for the next trial hoping to replicate these findings in people with Parkinson’s disease.
“The hallmark of Parkinson’s is clumps of the protein alpha-synuclein, which we believe are toxic and harm cells,” said Jamie Eberling, PhD, MJFF Vice President of Research Programs. “Preventing that alpha-synuclein aggregation — as MODAG’s drug has shown in laboratory studies also funded by MJFF — could slow, stop or even prevent Parkinson’s. This is patients’ most urgent need, and we are proud to support this testing in pursuit of a cure.”

--READ MORE-- on the Michael J. Fox Foundation Website

July 6, 2020
Michael Kruger, Maryland Association for Parkinson's Supoort board member and PD warrior, was interviewed on the radio yesterday and for those of you who might have missed “MAX and STEVEN’s” radio show on WCBM, 680 AM at 2….

here’s the link: https://maxandstevens.com/podcast/cbd-helped-me-with-my-parkinsons-what-max-steven-say-is-in-the-bottleis-in-the-bottle-finding-a-good-corned-beef-sandwich-in-baltimore-episode-19/

June 24, 2020
In findings that could pave the way to a new treatment for Parkinson's disease, scientists have figured out how to spur the production of new brain cells in mice.

The advance centers on a protein found in various cells in mice and humans. Researchers found that blocking it in the mouse brain caused certain "support cells" there to transform into specialized neurons that produce the chemical dopamine. In Parkinson's disease, dopamine-producing brain cells gradually die off, leading to movement symptoms like tremors, stiff limbs and coordination problems.

In the new study, lab mice that grew new neurons also showed improvements in Parkinson-like movement problems.

Experts stressed that mice, of course, are not humans. And much more research is needed to see whether the approach could be safe and effective for people with Parkinson's, or other degenerative brain diseases such as Alzheimer's.

--READ MORE-- at US News and World Report

May 20, 2020
A new UCLA study in zebrafish has identified the process by which air pollution can damage brain cells, potentially contributing to Parkinson’s disease.

Published in the peer-reviewed journal Toxicological Sciences, the findings show that chemicals in diesel exhaust can trigger the toxic buildup of a protein in the brain called alpha-synuclein, which is commonly seen in people with the disease.

Previous studies have revealed that people living in areas with heightened levels of traffic-related air pollution tend to have higher rates of Parkinson’s. To understand what the pollutants do to the brain, Dr. Jeff Bronstein, a professor of neurology and director of the UCLA Movement Disorders Program, tested the effect of diesel exhaust on zebrafish in the lab.

“It’s really important to be able to demonstrate whether air pollution is actually the thing that’s causing the effect or whether it’s something else in urban environments,” Bronstein said.

--READ MORE-- at Neuroscience News.Com

May 11, 2020
Each person’s Parkinson's Disease symptoms are different, and even your own symptoms can change over time. It can be hard to remember how you felt last week or last month when your doctor asks, but the more you and your care team know, the more personalized your care can be. APDA’s free Symptom Tracker app helps you:

• Keep track of your symptoms – including tremors, rigidity, balance and more
• Create a personalized report to share with your care team, or save to your library
• Consult with your doctor for more personalized resources and support

January 19, 2020
When Ashley King, an instructor at Fred Astaire in Frederick, took an adult neurology class in graduate school, she learned about the benefits that dance can have on people with Parkinson’s disease.

“I was like, ‘Hey I can do that, so why not share and hopefully help a bunch of people in the process?’” King said.

She held the dance studio’s first dance class for people with Parkinson’s and their caretakers Saturday, Jan. 18. The class was free to attend, and didn’t require any prior dance experience.

Read the entire story at the Frederick News-Post

October 11, 2019
The moment we first receive a new diagnosis, everything looks different. For many, there is a huge gap between first learning about a Parkinson’s diagnosis and learning how to live your best life with the disease.

We want to shorten that learning curve. To that end, we reached out on the ParkinsonsDisease.net Facebook group and asked: “What advice would you give to someone newly diagnosed with Parkinson’s?”

Nearly 60 of you replied, sharing tips about physical and emotional wellbeing. Here’s what you had to say.

• Start Exercising Now
• Pay Attention to your gait and balance
• Try to stay calm because it will take time to accept this disease
• Educate Yourself
• Laugh a lot
• Be patient with yourself
• Enjoy those things that give you pleasure
• Remember your life is not over.

Read the entire story 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--

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.