Pages
▼
Saturday, April 25, 2015
May May's Poem
THE JOURNEY
By May May Ali
Over 30 years ago, my father's voice was a little
louder than a whisper, and we thought it resulted from boxing.
Unbeknownst to both of these men, their journeys
had already begun.
As years pasted, they were diagnosed with the
disease, Parkinson.
Like forks in the road their journeys were filled
with choices that must be taken.
And the roads that were traveled greatly impacted
the outcomes of their situations.
There's a path of inactivity, isolation,
submission, and defeat.
Another path is paved with proactivity, defiance,
and a refusal to be beat.
Like all of you right here and now about to walk
together in Unity.
Or like someone with PD exercising regularly and
engaging in their community.
Yes the journey is not easy, but your outlook
doesn't have to be doom and blue.
You can choose to manage your journey or allow it
to manage you.
Your life with PD is still special, so partake in
what grows your smile.
Meanwhile as we support a cure for PD, may your
journey be filled with determination, continued hope, and style.
|
- See more at:
http://www.unitywalk.org/news.php?ID=338#sthash.667N68Y5.dpuf
|
Thursday, April 23, 2015
Study probes link between loss of smell, diseases like Alzheimer's
ELIZABETH WHITTEN
Published April 21, 2015 - 10:03pm
Last Updated April 22, 2015 - 10:48am
Nova Scotia researchers are trying to develop an early warning system for diseases like Alzheimer’s and Parkinson’s using people’s sense of smell.
They’re looking for healthy volunteers aged 40 to 75 to take scratch-and-sniff tests to try to identify particular odours.
“It’s been known for quite some time that patients who are diagnosed with either Alzheimer’s disease or Parkinson’s disease, the neurodegenerative type of disorders, if you ask them or if you ask their spouses, they’ll tell you they haven’t been able to smell properly for three, five, sometimes even 10 years before their diagnosis,” said Kim Good, an associate professor in the psychiatry department at Dalhousie University in Halifax.
The sense of smell can deteriorate for a variety of reasons, such as exposure to chemicals.
“Just aging in general deteriorates your sense of smell,” Good said.
But for Alzheimer’s or Parkinson’s patients, the loss of the ability to differentiate smells is often worse than for others the same age.
“We’re trying to amass a very large sample (and then be) able to follow those people, particularly the people who do poorly on the olfactory test,” Good said.
“We think that’s kind of the first step — that’s the canary in the coal mine, if you will. Someone who has an olfactory deficit should be followed up and watched a little more closely.”
The test is simple. Volunteers are sent a scratch-and-sniff multiple choice test in the mail.
“You remember the little patches that kids used to scratch? It’s exactly that same technology,” Good said.
“It’s very simple if you have an intact sense of smell, very, very simple. If you have an impairment in your sense of smell, it’s quite frustrating.”
Good’s team is made up of a fluctuating number of people, mostly from Dalhousie, usually numbering around 12. They come from fields that include neuropsychology and psychiatry.
They are mainly interested in people who do well or poorly on the smell test. These are the subjects who then come into the clinic for cognitive testing, an MRI scan and a sleep study.
“We ask them to come in and we do a special type of brain scan,” Good said.
“So we look at not only how the brain is structurally, but we’re interested in the pathways, the connections between brain regions and a specific area that’s involved in the sense of smell.”
If successful, the work could lead to early intervention for those who might develop Parkinson’s or Alzheimer’s.
Good said disease-modifying drugs could help people who have been diagnosed long before symptoms appear.
“We might be able to intervene early and either stop the disorder or at least slow the progress. We don’t have any disease-modifying drugs at this point, mostly.”
The researchers have used Kijiji to recruit test subjects, but “they’re not coming in as quickly as we would like,” Good said.
Ideally, the group would have 1,200 participants, but at the moment the study involves fewer than 200 people. The plan is to continue the work until 2017, and then a followup study will be conducted if the researchers get more funding.
As the population gets older, more people are being diagnosed with diseases like Alzheimer’s, Good said.
“Because the baby boomers are starting to age into the age range that’s of the highest risk, we are going to be seeing more, absolutely.”
In 2011, there were 747,000 Canadians with Alzheimer’s and other forms of dementia, according to the Alzheimer Society of Canada. It estimates that, if nothing changes, by 2031 that number could grow to 1.4 million.
For more information, contact predictparkinsonsstudy@gmail.com.
http://thechronicleherald.ca/novascotia/1281944-study-probes-link-between-loss-of-smell-diseases-like-alzheimers
Breathless: How blood-oxygen levels regulate air intake
April 23,2015
Researchers have unraveled the elusive process by which small, highly vascular clusters of sensory cells in the carotid arteries "taste the blood," as a 1926 essay put it--the initial step in regulating blood-oxygen levels.
In the journal Science Signaling, a University of Chicago-based research team describes the precise mechanism that cells in the carotid bodies use to detect oxygen levels in the blood as it flows toward the brain. The cells translate that taste test into signals, sent through the carotid sinus nerve, a branch of the glossopharyngeal nerve, to stimulate or relax breathing rates.
"After a lengthy search, one that began almost 90 years ago, we were able to identify the long-sought oxygen sensor," said study senior author Nanduri Prabhakar, PhD, director of the Center for Systems Biology of Oxygen Sensing at the Institute of Integrative Physiology of the University of Chicago. "In the process, we also discovered that it has a back-up system."
The primary blood-oxygen sensor is the enzyme heme oxygenase-2. "This is the critical molecule," Prabhakar said. "It is a crucial component of this process."
When blood is adequately oxygenated, heme oxygenase-2 induces synthesis of the gaseous messenger carbon monoxide. This carbon monoxide initiates a chain of events. It stimulates production of cyclic guanosine monophosphate, activating protein kinase G. Protein kinase G then adds a phosphate group to the enzyme, cystathionine-&Upsih;-lyase (CSE), blocking the generation of hydrogen sulfide, another gas messenger. Inactivating CSE prevents the carotid body from sending out a nerve signal to increase air intake.
"When oxygen levels fall, there is no heme oxygenase-2 activity, and no production of carbon monoxide," Prabhakar said. The carotid bodies instead produce abundant hydrogen sulfide by cystathionine-&Upsih;-lyase, which activates nerve signals. This increases breathing, heart rate and blood pressure. "Hydrogen sulfide goes up," he said, "as oxygen level goes down."
The researchers, seeking to confirm their initial finding, next examined mice that lacked the gene for heme oxygenase-2. This led them to a parallel inhibitory system. Mice that lacked heme oxygenase-2 did not produce carbon monoxide, but showed an "unanticipated compensatory increase" of a different oxygen-sensitive enzyme. This one--neuronal nitric oxide synthase--increased production of nitric oxide. The nitric oxide acts like carbon monoxide through protein kinase G to attach a phosphate group to a particular site of CSE, which silenced neural output.
The presence of two closely related mechanisms with a single purpose emphasizes the importance of carotid body oxygen sensing. This alternative system of oxygen sensing provides "an important fail-safe redundancy for a vital homeostatic process," the authors wrote.
While adequate oxygen in the blood inhibits nerve signals, an oxygen shortage--caused by stresses such as exercise, lung disease, sleep apnea or thin air at high altitudes--sets off an alarm, promptly sending the signal to breathe to the central nervous system.
Understanding the detection and signaling mechanisms used by the carotid bodies "is of fundamental significance," said Prabhakar. An inadequate response to hypoxia can lead to serious consequences, such as hypertension and pulmonary edema at high altitude.
There is also a growing sense that a malfunction of gaseous messenger interactions could lead to other disorders.
"It is becoming increasingly recognized that abnormal gaseous signaling contributes to diverse diseases, including Parkinson's disease," Prabhakar said. "Heme oxygenase-2, neuronal nitric oxide synthase, and cystathionine-&Upsih;-lyase are all expressed in neurons as well as in the vasculature. Irregular crosstalk between these messengers may contribute to the pathophysiology of other disorders. A significant excess or deficiency of this system may result in the death of cells, tissue or the entire organism."
http://www.medicalnewstoday.com/releases/292796.php?tw
Indian scientists develop new drug for Parkinson's
Lucknow: Indian researchers have developed a new therapy that has been found to reverse Parkinson's-like symptoms in rats and the researchers believe that the findings could one day lead to a new therapy for human patients.The researchers found that infusing the chemical dopamine into the brain can relieve symptoms in animal models of the disease.
“We designed neurotransmitter dopamine-loaded PLGA nanoparticles (DA NPs) to deliver dopamine to the brain,” said Rajnish Kumar Chaturvedi and his colleagues from CSIR-Indian Institute of Toxicology Research in Lucknow, Uttar Pradesh.
Patients who develop this disease usually start experiencing symptoms around age 60 or older. The researchers noted that among other issues, people with Parkinson's lack dopamine in the brain.
Dopamine is a chemical messenger that helps nerve cells communicate with each other and is involved in normal body movements. Reduced levels cause the shaking and mobility problems associated with Parkinson's.
Symptoms can be relieved in animal models of the disease by infusing the compound into their brains.
But researchers have not yet figured out how to safely deliver dopamine directly to the human brain, which is protected by something called the blood-brain barrier that keeps out pathogens, as well as many medicines.
The researchers wanted to find a way to overcome this challenge.
They packaged dopamine in biodegradable nanoparticles that have been used to deliver other therapeutic drugs to the brain.
The resulting nanoparticles successfully crossed the blood-brain barrier in rats, released its dopamine payload over several days and reversed the rodents' movement problems without causing side effects.
The study was published in the journal ACS Nano.
http://health.einnews.com/article/261581959/WedBmCsdYQfPZJKFFirst Published: Thursday, April 23, 2015 - 11:54
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
The blood-brain barrier protects the brain from pathogens and toxic agents in the bloodstream.
Now, a team has devised a way to use nanoparticles to ferry dopamine across the blood-brain barrier and shown it reverses Parkinson's-like symptoms in rats.
The researchers - from the CSIR-Indian Institute of Toxicology Research in Lucknow - describe their work in the journal ACS Nano.
The number of people with Parkinson's disease - which mostly strikes after middle age - is rising faster than ever as our population ages. The progressive disease, which gradually erodes quality of life as symptoms worsen, is thought to affect around 1 in 500 people.
The new and growing field of nanotechnology is finding many applications in medicine. One reason for this is that it offers the opportunity to make tiny tools that interact with cells in useful ways.
Dopamine is a brain chemical that nerve cells involved in movement use to send signals to each other.
If levels of dopamine drop, the nerve cells cannot communicate effectively, leading to the shaking and movement problems associated with Parkinson's.
The blood-brain barrier is a dynamic interface made of highly specialized cells that line nearly all the blood vessels in the brain. It protects the brain and central nervous system from pathogens and toxic agents that might be circulating in the bloodstream. It also stops many drugs - including dopamine - from passing into the brain.
Dopamine-loaded biodegradable nanoparticles crossed the blood-brain barrier
For their study, the team packaged dopamine inside biodegradable nanoparticles that had already been developed for delivering other drugs to the brain.
The nanoparticles successfully traversed the blood-brain barrier in rats with Parkinson's-like symptoms, released their dopamine cargo over several days, and reversed the movement problems in the animals.
The authors note the treatment also reversed brain chemical deficits associated with Parkinson's and there were no side effects.
The Indian Department of Science and Technology and the Council of Scientific and Industrial Research (India) helped fund the study.
Earlier this year, Medical News Today learned how researchers have developed a peptide that may slow Parkinson's disease. The man-made peptide stops the formation of faulty protein fibrils that kill the brain cells that produce dopamine.
Written by Catharine Paddock PhD
http://www.medicalnewstoday.com/articles/292848.php?tw
Wednesday, April 22, 2015
Nanoparticle drug reverses Parkinson's-like symptoms in rats
AMERICAN CHEMICAL SOCIETY
PUBLIC RELEASE:
As baby boomers age, the number of people diagnosed with Parkinson's disease is expected to increase. Patients who develop this disease usually start experiencing symptoms around age 60 or older. Currently, there's no cure, but scientists are reporting a novel approach that reversed Parkinson's-like symptoms in rats. Their results, published in the journal ACS Nano, could one day lead to a new therapy for human patients.
Rajnish Kumar Chaturvedi, Kavita Seth, Kailash Chand Gupta and colleagues from the CSIR-Indian Institute of Toxicology Research note that among other issues, people with Parkinson's lack dopamine in the brain. Dopamine is a chemical messenger that helps nerve cells communicate with each other and is involved in normal body movements. Reduced levels cause the shaking and mobility problems associated with Parkinson's. Symptoms can be relieved in animal models of the disease by infusing the compound into their brains. But researchers haven't yet figured out how to safely deliver dopamine directly to the human brain, which is protected by something called the blood-brain barrier that keeps out pathogens, as well as many medicines. Chaturvedi and Gupta's team wanted to find a way to overcome this challenge.
The researchers packaged dopamine in biodegradable nanoparticles that have been used to deliver other therapeutic drugs to the brain. The resulting nanoparticles successfully crossed the blood-brain barrier in rats, released its dopamine payload over several days and reversed the rodents' movement problems without causing side effects.
###
The authors acknowledge funding from the Indian Department of Science and Technology as Woman Scientist and Ramanna Fellow Grant, and the Council of Scientific and Industrial Research (India).
The American Chemical Society is a nonprofit organization chartered by the U.S. Congress. With more than 158,000 members, ACS is the world's largest scientific society and a global leader in providing access to chemistry-related research through its multiple databases, peer-reviewed journals and scientific conferences. Its main offices are in Washington, D.C., and Columbus, Ohio.
To automatically receive news releases from the American Chemical Society, contact newsroom@acs.org.
http://health.einnews.com/article/261433607/hw1UZW7PfpHAv-Xw
Georgetown Farmer One Of First To Get New Parkinson's Treatment
Georgetown Farmer One Of First To Get New Parkinson's Treatment - LEX18.com | Continuous News and StormTracker Weather
To watch the Video
Please click on:
http://www.lex18.com/clip/11415153/georgetown-farmer-one-of-first-to-get-new-parkinsons-treatment
http://health.einnews.com/article/261428889/ba6E-tRcv1FDl9iR
To watch the Video
Please click on:
http://www.lex18.com/clip/11415153/georgetown-farmer-one-of-first-to-get-new-parkinsons-treatment
http://health.einnews.com/article/261428889/ba6E-tRcv1FDl9iR
Tuesday, April 21, 2015
INTERNATIONAL STEM CELL CORPORATION PUBLISHES RESULTS DEMONSTRATING TREATMENT OF PARKINSON'S DISEASE IN CELL TRANSPLANTATION
/EINPresswire.com/ -- CARLSBAD, CA--(Marketwired - April 21, 2015) - International Stem Cell Corporation (OTCQB: ISCO), a California-based biotechnology company developing novel stem cell based therapies and biomedical products, announced today that the company has published the results of two proof of concept studies that demonstrate the safety and efficacy of the company's readily expandable stem cell derived treatment of Parkinson's disease in both non-human primate and rodent animal models.
"The publication of these data in the peer-reviewed and highly-respected journal, Cell Transplantation, brings to a conclusion the preclinical stage of our Parkinson's disease program. The data clearly support the premise that parthenogenetic neural stem cells can be effective in treating the symptoms of Parkinson's disease and, along with the previously reported safety data, forms the basis of our decision to move into the clinic," said Ruslan Semechkin, Ph.D., the Company's Chief Scientific Officer. "We look forward to providing an update on the status of our regulatory submission to the Australian government in the near future."
The two studies demonstrated the safety and efficacy of transplanting human parthenogenetic neural stem cells (hpNSC) into animals with induced Parkinson's disease symptoms. No deformations, tumors or involuntary muscle movements (dyskinesia) developed. The studies further show that transplants of human parthenogenetic neural stem cells led to improvement of dopamine levels and increased cytokine levels.
The article and abstract can be found at: http://www.ingentaconnect.com/content/cog/ct/2015/00000024/00000004/art00010
ISCO has built a comprehensive preclinical safety dataset from a series of GLP and non-GLP studies on hpNSC. The Company has submitted a Clinical Trial Exemption (CTX) application to the Australian regulatory authorities and plans to begin the phase 1/2a clinical study within the next few months.
About human parthenogenetic neural stem cell (hpNSC)
hpNSCs are a novel therapeutic cellular product derived from the Company's proprietary human pluripotent stem cells. Neural stem cells work to repair the brain in several ways. The cells are attracted to the site of injury and in response to signals released by the damaged tissue release a range of molecules that reduce inflammation and trigger the recovery process. Neural stem cells also have the ability to generate new cells to replace those that are either dead or dying enabling the formation of new tissue. In this way the hpNSCs act as coordinators of all the various activities necessary to recover brain function.
About Parkinson's disease
According to the Parkinson's Disease Foundation, an estimated seven to 10 million people worldwide live with Parkinson's disease, with as many as one million of those in the United States alone, more than the combined total of people diagnosed with multiple sclerosis, muscular dystrophy, and Lou Gehrig's disease. Parkinson's disease is a progressive neurodegenerative disorder resulting from the gradual loss of certain neurons responsible for producing dopamine, and is characterized by symptoms including tremors at rest, rigidity and impaired movement.
The standard of care for the treatment of PD symptoms is oral levodopa (L-dopa). Oral dosing of L-dopa is associated with wide variability in the timing and amount of L-dopa absorption into the bloodstream, leading to the unreliable control of symptoms resulting in the emergence of off episodes, periods of time during which Parkinson's disease symptoms reemerge despite L-dopa treatment. These off episodes, which increase in frequency and severity during the course of the disease, are experienced by a majority of PD patients and are considered one of the greatest unmet medical needs facing PD patients.
About International Stem Cell Corporation
International Stem Cell Corporation is focused on the therapeutic applications of human parthenogenetic stem cells (hpSCs) and the development and commercialization of cell-based research and cosmetic products. ISCO's core technology, parthenogenesis, results in the creation of pluripotent human stem cells from unfertilized oocytes (eggs). hpSCs avoid ethical issues associated with the use or destruction of viable human embryos. ISCO scientists have created the first parthenogenetic homozygous stem cell line that can be a source of therapeutic cells for hundreds of millions of individuals of differing genders, ages and racial background with minimal immune rejection after transplantation. hpSCs offer the potential to create the first true stem cell bank, UniStemCell™. ISCO also produces and markets specialized cells and growth media for therapeutic research worldwide through its subsidiary Lifeline Cell Technology (www.lifelinecelltech.com), and stem cell-based skin care products through its subsidiary Lifeline Skin Care (www.lifelineskincare.com). More information is available at www.internationalstemcell.com and companyblog.intlstemcell.com.
To receive ongoing corporate communications, please click on the following link: http://www.b2i.us/irpass.asp?BzID=1468&to=ea&s=0
Safe harbor statement
Statements pertaining to anticipated developments, expected clinical studies (including timing and potential results), and other opportunities for the company and its subsidiaries, along with other statements about the future expectations, beliefs, goals, plans, or prospects expressed by management constitute forward-looking statements. Any statements that are not historical fact (including, but not limited to statements that contain words such as "will," "believes," "plans," "anticipates," "expects," "estimates,") should also be considered to be forward-looking statements. Forward-looking statements involve risks and uncertainties, including, without limitation, risks inherent in the development and/or commercialization of potential products, regulatory approvals, need and ability to obtain future capital, application of capital resources among competing uses, and maintenance of intellectual property rights. Actual results may differ materially from the results anticipated in these forward-looking statements and as such should be evaluated together with the many uncertainties that affect the company's business, particularly those mentioned in the cautionary statements found in the company's Securities and Exchange Commission filings. The company disclaims any intent or obligation to update forward-looking statements.
Image Available: http://www.marketwire.com/library/MwGo/2015/4/20/11G038996/Images/NSCs_differentiating_into_Neurons-1237073610217.jpg
Contacts:
International Stem Cell Corporation
Simon Craw, Ph.D.
Executive Vice President
Phone: 760-940-6383
Email: ir@intlstemcell.com
Ruslan Semechkin, Ph.D.
Chief Scientific Officer
Phone: 760-940-6383
Email: ras@intlstemcell.com
Media
Tony Russo, Ph.D.
Phone: 212-845-4251
Email: tony.russo@russopartnersllc.com
Christopher Hippolyte
Phone: (646)942-5634
Email: chris.hippolyte@russopartnersllc.com
International Stem Cell Corporation
Simon Craw, Ph.D.
Executive Vice President
Phone: 760-940-6383
Email: ir@intlstemcell.com
Ruslan Semechkin, Ph.D.
Chief Scientific Officer
Phone: 760-940-6383
Email: ras@intlstemcell.com
Media
Tony Russo, Ph.D.
Phone: 212-845-4251
Email: tony.russo@russopartnersllc.com
Christopher Hippolyte
Phone: (646)942-5634
Email: chris.hippolyte@russopartnersllc.com
http://health.einnews.com/pr_news/261207208/international-stem-cell-corporation-publishes-results-demonstrating-treatment-of-parkinson-s-disease-in-cell-transplantation?n=2&code=ga_qGBxHZ2aVYO4P
Telefonica helps develop device for Parkinson's patients
Telefonica I+D, the research and development arm of the Telefonica Group, has joined forces with the Universitat Politecnica de Catalunya (UPC) and the Quiron Teknon hospital to develop what the creators describe as a “revolutionary” device in the diagnosis, treatment and management of Parkinson's disease. The EUR 5 million telemedicine project has created a holter monitor, dubbed REMPARK, which aims to accurately determine and quantify the disease’s symptoms. The system is made up of a device the size of a mobile phone which is worn around the patient’s waist, attached to a bio-compatible waist-band. The device contains a series of sensors, a microprocessor and a Bluetooth interface which allows it to communicate with a smartphone, with an effectiveness rate of 87 percent in identifying the presence of motor skills and 100 percent in identifying the lack thereof.
Over the past three years the project has been studying the evolution of 40 Parkinson's patients in Spain, Italy, Ireland and Israel using a remote control and tele-monitoring system running on Telefonica's remote management platform. People suffering from Parkinson's disease will soon be able to purchase a device of this type to self-manage their disease, particularly during its first stages, said Telefonica during REMPARK's final project workshop held at the company's flagship store in Madrid.
http://health.einnews.com/article/261216514/kFOsqNVFW2W0Fgus
2015 Parkinson's Unity Walk
Muhammad-&-Maryum-Ali (Photo by Maryum “May May” Ali) |
Unity Walk takes place on Saturday, April 25th in Central Park. Registration booths open at 8:30 a.m. and this gentle 1.4 mile walk will begin at 9:45 a.m. at the 72nd Street bandshell.
In addition to raising awareness and funds for research, it also a day of community and education. You can visit informational booths which will include healthcare experts and meet with representatives from sponsors and foundations sharing information and resources with members of the Parkinson’s community. Walkers need to register but if you just want to attend and get free information and advice from doctors, there’s no need to register.
In an interview with 1010 WINS Radio, Maryum “May May” Ali, the daughter of legendary boxer Muhammad Ali, tells 1010 WINS’ Sharon Barnes-Waters that her father was in his late 30s when they began to notice some symptoms of Parkinson’s disease. Doctorsthought it was just the normal “punch drunkenness” that a lot of boxers get. As a result, her father was misdiagnosed for almost 10 years.
As an advocate for more research for Parkinson’s, Ali is telling this very personal story about the journey her father and her family has been on for the last 30 years, beginning with his symptoms in the early days to his eventual diagnosis to his life today.
For more information on this Saturday’s unity walk call 866-789-9255 or visit their website .
Muhammad Ali Parkinson’s Progression Described By Daughter Maryum Ali « CBS New York
http://newyork.cbslocal.com/2015/04/21/boxer-muhammad-ali-parkinsons/#.VTaUcHxU2b4.blogger
Monday, April 20, 2015
Parkinson’s patients connect through Movers & Shakers group
Posted: Monday, April 20, 2015 12:40 am
Michael Church started to notice a slight tremor in his left pinky in times of high stress when he reached his 30s.
The Naples resident was diagnosed with young-onset Parkinson’s disease on his 32nd birthday almost 20 years ago.
But the diagnosis led him to meet his wife and fellow Parkinson’s patient, Gretchen Church, and create an outlet to help those suffering from the disease called Movers & Shakers, a national nonprofit organization that supports people with Parkinson’s disease.
Now the couple receives treatment from Dr. Michael Okun at the UF Health Center for Movement Disorders and Neurorestoration.
Gretchen Church, also of Naples, said she felt like a walking Jell-O mold 17 years ago when she had trouble keeping up with her active daughter. After visiting a neurosurgeon, she was also diagnosed with young-onset Parkinson’s disease at 32.
Before they met, the Churches struggled to find information about their disease or support from others who had it.
The Churches connected in the early 2000s over an AOL message board for people who had young-onset Parkinson’s. Michael Church sent Gretchen an email asking for her help starting an online support group for people with the disease.
Gretchen Church said she initially didn’t want to respond to the email. She didn’t want to think about having Parkinson’s disease, let alone help start a support group for it.
But she eventually responded, and when asked to tell his story, Michael Church sent her the Naples Daily News article that featured his life as a single dad with Parkinson’s raising four children. She agreed.
Within three months of setting up the group, there were more than 350 members.
“I know there are people alive today because of that chat room,” Gretchen said.
They planned a young-onset Parkinson’s conference in Atlanta so those in the group could meet, and about 100 attended.
The Churches met in person for the first time during the planning process.
“That was the first time I had ever met anybody or seen anybody else with young-onset Parkinson’s, and little did I know it would be my future husband,” Gretchen Church said.
The online support group eventually grew into what is now Movers & Shakers.
“We wanted to get into people’s lives,” Gretchen Church said. “We wanted to be able to sit on their couch and hug them and talk to them and get out from behind the monitor.”
Their organization is now geared toward all people with Parkinson’s, but it still maintains the original goal of connecting people to the resources and support they need.
“There are a million and one reasons to get out of the bed in the morning and do something,” Michael Church said, “but only one reason to stay in bed — to feel sorry for yourself.”
http://www.alligator.org/news/local/article_286d87b6-e718-11e4-b64b-6f2d2fb12bf8.html#.VTVL0FZKx2Q.facebook