Posted by admin | June 15, 2012
“I have a hope that this foundation has a short life. We exist to help fund and find a cure. To do that we need to generate and raise awareness of Parkinson’s disease and its impact to the public. Awareness in turn will aid in generation of funding. Funding for a cure and funding for the personal side of the disease. Programs to get people moving, walking, riding, dancing, and exercising.”
– Mike Justak, Founder of Mike Justak Foundation for Parkinson’s Disease
When PatientsLikeMe member Mike Justak (MJUSAK) realized that Parkinson’s disease (PD) funding was lagging, he decided to take action. His goal: to “put a face to Parkinson’s” and highlight the fact that it occurs in patients under the age of 50 as well as older patients.
Mike founded the Mike Justak Foundation for Parkinson’s Disease, and this year he began working on a “Faces of Parkinson’s Video Wall.” It’s a pastiche of videos submitted by PD patients around the country that he plans to submit to the Parkinson’s Action Network, state governors and US senators. To add your “face” to the project, all you have to do is submit a short, close-up video stating who you are, where you’re from and what you do. See Mike’s sample video submission below.
Having being diagnosed with PD in his mid-forties, Mike has also focused on raising awareness of young onset Parkinson’s disease (YOPD). Check out the growing number of profiles of young onset Parkinson’s patients – from a musician to a teacher to an NBA player – on his foundation’s Younger Faces page.
As Men’s Health Week concludes, we’d like to honor Mike for his efforts as well as thank PatientsLikeMe members tiredoftired and Rick N for sharing their essays about depression and multiple sclerosis (MS) earlier this week. We salute all of our male members for making their voices heard!
Posted by Paul Wicks | August 20, 2008
Most people think of Parkinson’s disease (PD) as a condition of aging, and most of the time they’re right. Looking at the population as a whole, about 1-2% of people over the age of 65 have PD, and it’s usually a condition that is most severe in patients in their 70′s and 80′s. However, about 10% of patients buck this trend and experience their first symptoms before the age of 40; these patients are known as Young-Onset PD or YOPD for short. The R&D team here at PatientsLikeMe recently carried out a research study examining an aspect of PD that has only recently gained much attention, “non-motor symptoms.” When a clinician diagnoses PD, they are usually looking for a triad of cardinal features, specifically tremor, slowness, and stiffness. However, in the past 5-10 years it has been increasingly clear that patients with PD also experience a number of non-motor symptoms, ranging from dizziness to constipation, from a loss of sense of smell to hallucinations, and from apathy to urinary problems.
Several of our members had mentioned in forum postings that they were finding non-motor symptoms, such as cognitive confusion and fatigue, to be a particular burden, so we decided to carry out a research study using the well-validated Non-Motor Symptoms Questionnaire (NMS-Quest) developed by Professor Ray Chaudhuri and colleagues. We sent the survey out to all of our PD patients earlier this year. In total, we got responses from 307 patients, including 260 “classic” PD patients and 46 with YOPD. The results show a higher number of non motor symptoms among YOPD patients (14/30) than PD patients (11/30). That’s an average of three more non-motor symptoms for YOPD patients than their older counterparts. More specifically, YOPD patients (at the individual level) report apathy, concentration problems, falls, pains, and sadness more often than older onset PD patients.
You can listen to a short presentation, or read our full report for a more detailed analysis of our methodology and findings, but there were several points I found particularly interesting.
- It’s unusual enough to have YOPD, which can be an isolating and confusing experience. For YOPD patients to experience even more non-motor symptoms than patients with more typical PD seems alarming, and requires urgent attention from clinicians, researchers, and patient advocacy groups to ensure their needs are being met.
- This sentiment is echoed in some of the patient interviews we conducted with members earlier this year. Click here to view the first in a series of interviews to be posted on our YouTube page, and hear for yourself what YOPD patients had to say when we asked what people should know about PD. (More videos to come on our YouTube and Facebook pages, so stay tuned!)
- YOPD patients are more likely to still be working, to be supporting families, and to be looking after young children or parents. Therefore, even minor changes in cognitive function or mood could have a substantial impact on their ability to function.
- Because YOPD patients are relatively rare and spread out, researchers aren’t often able to gather sufficiently large samples to study them in detail. A research platform like PatientsLikeMe provides an ideal opportunity to collect high quality data in an efficient way.
Posted by Lori Piscatelli Scanlon | August 12, 2008
PatientsLikeMe was a proud sponsor of the National Parkinson’s Foundation Young-Onset Parkinson’s Network (YOPN) Conference in Atlanta, GA last week.
The event, coordinated by and for people living with Young-Onset Parkinson Disease (YOPD), was a huge success. Paul Wicks and I (Maureen Oakes) enjoyed working at the booth, meeting many of our current members and spotting PatientsLikeMe t-shirts in the crowd. Paul was a presenter at the conference, and his session “Taking Control of Your Parkinson’s by Sharing Online” was well attended and received by current and future PatientsLikeMe members. One of the themes that came up repeatedly at the conference is that living with YOPD, like any other life-changing illness, can be a very isolating experience. The YOPN Conference presented its attendees the opportunity to spend the weekend learning more about their condition, expanding their knowledge about the latest treatments and choices, and most importantly, meeting other patients like them.
As a community manager at PatientsLikeMe, much of my job is watching. I read the forum to observe what people are discussing, I look for questions and ideas on how we can improve different areas of the site, and watch as members learn and relationships grow. But, one of my favorite things to watch is when our members meet each other in real life. As they did at the Unity Walk, many PatientsLikeMe Parkinson’s members wore “badges” with their usernames and pictures to help identify each other as they met their online friends face-to-face for the first time. These relationships blossom very quickly because they are rooted by their shared experiences, and that is a wonderful thing to watch.