The following infographic is courtesy of the Michael J Fox Foundation…
A couple weeks back, I was invited to consider becoming a ‘Clinical Trials Ambassador’ for a brand new entity known as…
CureClick is a community-powered platform that revolutionizes the way companies find volunteers for their clinical trials. CureClick leverages WEGO Health’s 100,000-member network of health influencers to disseminate trial information to thousands of health communities — effectively reaching millions of patients at lightning-speed through trusted channels.
Founded by Fabio Gratton (CureClick’s Chief Executive Officer), Cure Click’s mission is to assist in “accelerating the progress of medical advancements by increasing the speed with which clinical trials are completed.” Their mission also serves to “leverage the power of crowdsourcing, to share clinical trial information, and connect patients with relevant treatment options.”
Acccording to Brian Poeschl, CureClick’s Chief Operating Officer, there are almost 150,000 current ongoing studies in over 187 countries. Out of those studies, 66% fail to recruit people needed to make that study accurate or happen at all. Over two-thirds of research sites fail to meet their original enrollment for a given trial. This, he says, slows down medical progress.
When a clinical study is in progress, it is critial to focus on the patient’s finishing that trial because “the continued develpment of innovative treatments is totally dependent on the ability of research organizations to rigorously test and validate their work.”
So, why do some studies fail to recruit, not finish, get slowed down? There are two key reasons: awareness and fear.
Awareness is critical as it leads to recruitment. For example, 16% of cancer patients are aware that trials are available, while only 43% of those that know actually participate while the other 57% do not.
Fear is the other reason that makes recruitment difficult. Fear of the new treatment not being as good ranks highest but fear of side effects from the study also ranks high on the fear list when it comes to contemplating being a part of a clinical trial. Some fear they won’t meet the acceptance criteria, they have a fear of a potential placebo, fear as to whether their insurance company will cover expenses, and they worry about having to relocate away from their families.
Cure Click wants to eliminate that fear and raise awareness in order that participants in clinical trials can play a more active role in their own health care, gain access to new research treatments before they are widely available, and help others by contributing to medical research.
After reading their informational material and going through an educational program for training on how to get the word out, I decided I was on the same page as they were: having the desire to raise awareness for studies that are available and pertinent to the Parkinson’s community (in my case) and hopefully dispel any fear any of us face when it comes to considering participating in a clinical trial.
So, all to say – I will now and again, be posting news about available studies through my website and Facebook groups when the opportunity arises. I will not be strict with publishing information about Parkinson’s specifically, but will filter through what comes down the pipeline for other conditions that can often go hand in hand with PD as well (such as dystonia, restless leg syndrome, dementia, etc).
If you’d like more information as to why I have taken on this ‘role’, you can click here to read more: My Relationship to Cure Click.
If you have any questions, feel free to email me at firstname.lastname@example.org .
Journeying with you,
“I confess that doctors are not always the best patients.
While we self-diagnose and self-treat we still have the same fears as everyone else.
Being on this side of the patient fence is not a place we like to find ourselves but there I was.”
- Dr. Karen Jaffe, advocate for Parkinson’s disease
She sat in the doctor’s office on the unfamiliar side of the desk , feeling a bit of deja vu….a similar scene had played out not more than a year earlier. Once again, she was having to be the patient instead of playing the more comfortable role she had known for so long – the doctor.
Sitting in the room alone, she waited for the neurologist to enter. There would be nothing to fret over, which is why she didn’t bother having anyone go with her. She was looking forward to just getting this done and having dinner with her husband, who happened to be driving home that very day from a trip with their children.
She had confidence that this neurologist knew what he was doing, unlike the one she had gone to last year. After all, who ever heard of a 47 year-old woman having Parkinson’s disease just because she was having shoulder pain and a bit of a buzzing sensations in her left arm? She made no qualms about letting more than one person know how she felt about the incompetency of that first doctor. After all, she too was a doctor and although she didn’t know much about Parkinson’s disease, she was certain that if the MRI they took of her brain was normal – which it was – there’s no way she had PD. The MRI results only served to confirm to her that she was right and the first opinion she had gotten a year ago was incorrect.
Over the year since that first doctor had given her a misdiagnosis , her shoulder pain hadn’t subsided . On her own she had done some research and self-diagnosed her problem as having nerve damage from a steroid injection she had gotten to alleviate the pain in her shoulder. She just wanted to know what could be done to take care of this continual, annoying buzzing. Sort of a second opinion, but this time, hopefully an accurate one.
She looked down at her watch, sighed, and waited some more. Then the doctor opened the door. Finally. She was ready to wrap this up and go home, eager to see her family.
It was the usual formal doctor to patient greetings and then down to business. It didn’t take long.
“Dr. Jaffe,” the neurologist began. “I believe that you have Parkinson’s disease.”
Karen Jaffe, a mid-50’s retired, OB/GYN doctor , was diagnosed at the age of 47 with Parkinson’s disease. That day, just seven years ago, changed the course of Dr. Jaffe’s life. But, she will be the first to admit that the changes have been good. Perhaps, like most other patients with PD, not changes that she would necessarily have chosen for herself, but ones that have helped her to grow and do things she never imagined she would do.
As a young woman in her last year of college, Karen decided (with some wise counsel given by a friend), to change her career path from that of a ‘chemist’ to becoming a physician. “I was drawn to Ob/Gyn as a great combo of primary care and surgery and that gave me everything that I enjoyed doing,” she says.
Her career had given her many, many years of getting her patients through the good and the bad of what life puts on our plates, but now, she was the one who felt confused and stopped “hearing” the words directed at her. As she sat in the doctor’s office all those years ago, she cried. She really hadn’t expected this neurologist to concur with the first she had seen. But there was no denying it now and she had to face it: she had Parkinson’s disease. As the doctor watched her take in the news, he “did a very gutsy thing and asked if he could say a prayer for me,” Karen said. She accepted, “figuring that it couldn’t hurt and one never knows how people just might have some higher connection!”
Later that day, she met her husband for dinner. After telling him of her diagnosis, they agreed together, to keep it a secret. It would be almost a year before they disclosed the news to their family and “three hard years” before telling anyone else, except for two friends who lived out of town. Karen says, in retrospect, that she would not – if she had the opportunity of a do-over – try keeping her diagnosis a secret. “It was hard on all of us,” she says, “especially my three daughters.”
While always having a strong voice, advocating for her own patients, the stigma of this disease kept her silent. Frustration followed. Not only wanting to raise funds for Parkinson’s research, which was impossible to do without a voice, she needed more than anything to free her children from the burden of keeping it secret. “So I then did the bravest thing I have ever done and that was to tell my colleagues, patients and my community that I was a physician with Parkinson’s disease and would continue to work full time. Fortunately, I met another young-onset patient/physician, Dr. Sonia Mathur, who knew the difficulties and gave me some very sound advice along the way.”
Now Dr. Jaffe does the same for others who find themselves in the same place she was at not so long ago – being a support and giving encouragement and wise counsel to those feeling alone with the secret of having PD and not sure, because of the stigma, who they should tell it to. It was this stigma associated with PD that Karen says kept her quiet for so long. She worried that as a surgeon “…I would be judged not by my surgical skills and expertise but by the label of being a Parkinson’s patient.” As it turns out her worry was unfounded. The support from her colleagues was surpassed only by the trust and loyalty of her patients.
Since ‘going public’ she has slowly but surely regained her voice by becoming involved in advocacy for Parkinson’s disease in many ways. Awards stemming from her work include the Irene Zehman Volunteer Award for her fundraising and advocacy for PD research and the Red Cross Heroes Award. She is now a member of The Patient Advisory Council for The Michael J Fox Foundation for Parkinson’s Research.
In 2011 she and her husband Marc created a nonprofit foundation – Shaking with Laughter – that brings awareness to and raises money for PD research. Karen says of the charity, “Since my husbands career involved being a stand-up comedian and a comedy writer (for the Jerry Seinfeld sitcom, Seinfeld), being able to appreciate the funny side of life has always defined both of us. So we made it a priority in life and in advocacy that we would not let this diagnosis change [our] very fundamental way of life. Our events always involve some form of comedy and I will tell you that when people leave at the end of the night, they always say not only how much fun they had but that it was the best fundraiser they have ever been to. Now that is the best.” The entertainers who have donated their time and talent for the events and are “blown away” by the support that Karen and her husband receive. The hard work in bringing the events together is reflected in the respect that is given to the Jaffe’s and the end result? A fun evening “that embraces a message of hope.”Together, through their charity’s fundraising events, they have raised over $460,000 for the Michael J. Fox Research Foundation.
Eventually finding that she was having to take more medication “just to be able to work,” , she knew it was time to step back from the career she dearly loved. “Telling myself many years ago that if I was increasing my meds just to get me through the stress of my job, that I would stop – which is where I was this past year . It is what I needed to do and I feel lucky that I was able to make that decision for myself on my own timeline. All of my patients and colleagues supported my decision to do so although they were quite sad to have it be so.” “While the stigma keeps many pwp in the closet, for me living and working with PD was a powerful message. This diagnosis should not imply that you are unable or incapable. If you are able to do your job, as I think the overwhelming majority can, then hold your head high and do your job. You will be the first to know when it is time to hang up your stethoscope, put down the pen, hand over the kitchen tools or whatever it is that requires skill. This disease may be annoying but it does not have to rob you of everything that you love to do.”
Upon hanging up her stethoscope she did not look back, allowing her the time and opportunity to increase her advocacy for PD. With retirement under her belt, Shaking with Laughter has been able to go beyond their highly successful yearly comedy/music gala to also serve as the fiscal agent to InMotion, the first of it’s kind Parkinson’s wellness center for which Karen is one of four founding members. (For more information about the work she is doing: Shaking with Laughter and In Motion)
While hoping that the work she and her husband are doing will bring her and so many others closer to a cure, Karen encourages others on this PD journey to think about their own ways to get involved. “It might be as an advocate, [being involved in] a fundraiser, a participant in a clinical trial or as a motivational speaker. Progress is dependent on us – the folks with PD – to make the biggest differences . Stepping into the PD arena will afford you with the best feeling – knowing that you helped to make a difference.”
While it is hard to imagine that there are blessings that come from having a chronic illness, such as Parkinson’s disease, Karen would share this one as one of her greatest and that is “…how my children came to find some peace and strength after not only having to privately wrestle with the pain of having me being diagnosed but also with having to keep it secret.”
When she retired, she received a letter from her college-aged, middle daughter (now studying premed/neurology), “…although truthfully,” she says, “it could have been written by any one of them.”
After admitting to the difficulties this disease brought to all of the Jaffe household over the seven years, Dr. Jaffe’s daughter gave her mother, Karen, the following, well-deserved tribute:
“….I want you to know how insanely proud I am of you and how you have taken on this challenge. If anyone could take this disease gracefully, courageously, and positively, it is you. The differences that you are creating are tremendous and distinguished, the support you offer is sought after and noble and the impact you are making is incredible.
This thank you does not even begin to do justice to how much I want to thank you but here is my attempt. In some backwards way, this disease has been a blessing in disguise. It has helped me discover myself, who I am and what I want to do with the rest of my life. So I can’t thank you enough mom for suffering through the tremors, the shuffling feet, the sleepless nights, early retirement, illegible handwriting, doctors appointments, medicines, anticipation of worsening symptoms (you know the rest of the list) so that I could find my purpose and place in life. I can’t believe the time has come!
I love you so much…”
Karen shares the following excerpt from her reply that she sent back to her daughter:
So thank you for every word so thoughtfully written on those 2 1/2 pieces of paper. I love you dearly and I heard every word you wrote. I am proud to be your mother. I am proud…and grateful that you have taken something that has been hard for all of us and with it found your way. I know that your compassion and kindness will serve you well. You will be a physician who is loved by her patients…and I, for one, cannot wait to see it be so.
I love you,
So I would argue that the choice is ours alone….while living each day with Parkinson’s disease brings challenges that are not always easy, seeing the glass as half full instead of half empty opens the door to the possibility of laughter & grace along with the desire to make a difference. Just ask the doctor. She knows first hand.
Today. The first day in the month of May. Did anyone see what happened to April? It seems as if it went as fast as it came. April is gone. We can’t ever get it back. Any opportunities that April afforded are most likely past.
But it doesn’t have to be that way. We don’t have to stop bringing awareness to Parkinson’s disease just because we’ve turned the page on our calendar.
I’m interested in hearing what you do, or would like to do, to bring awareness to Parkinson’s disease. Do you fundraise? If so, what was your most successful fundraiser? Do you have a funny coat that people wear and then snap their picture? Why? Do you sponsor walk-a-thons? Are they beneficial and accomplish your goals?
Do you have a goal in this life as you journey with Parkinson’s disease? A goal that brings awareness to this disease? A goal that leads researchers closer to a cure (like a fundraiser)? Do you have a goal of bringing knowledge of this disease by educating those who don’t understand it?
I would like to encourage you to come up with a goal this month of something you could do to bring more awareness to Parkinson’s disease. The official “Parkinson’s Disease Awareness Month” has now ended. But, until there is a cure, it ain’t over ’til it’s over.
Even though Parkinson’s Disease Awareness Month will be coming to a close as of today’s end, we can still continue to spread the word. To celebrate the last 30 days of an attempt to educate, inspire, and bring awareness to this little monster and its ability to change the course of one’s life, here are my top 3 favorite awareness items from the month by three different sources: Sheryle Klingelhofer, Beth Bjerke, and PJ’s most popular “Top Ten”.
This one’s from Sheryl Klingelhofer, Facebook page “A Life with Parkinson’s”:
OK, MOST folks talk about the support they get from friends and family with their Parkinson’s and dystonia difficulties…however I hear of some who say that after their diagnosis, they are often rather abandoned or even get griped at over the disorder. And while we HOPE that insight and education through gentle sharing would work, well, it often doesn’t.
It may be from a movie, but if you get bugged by insecure or unfeeling individuals, try this little quote…it sums it up for them nicely!
Next, we have the popular
1. To feel good.
2. To smell (what’s baking in the oven).
3. To have people believe that the person with PD isn’t pretending to have a chronic disease. Really. We have better things to do.
4. For others to understand that although they can’t see all of the effects, the disease is real.
5. More dopamine. We gotta have more cow bell dopamine.
6. To not shake all the time. It would be so nice to stir our coffee because we want to.
7. For others to be aware of the struggles and invisible symptoms people with Parkinson’s face so that they are better able to understand the fervency and urgency of a cure.
8. To find a drug that doesn’t knock you out for half the day, but instead, knocks out PD.
9. A plastic bat to hit others over the head when they make thoughtless comments.
10. A cure
and then last, but not at all least, a plea from Beth Bjerke:
“Last week I changed my profile picture [on Facebook] from what was a symbol of Parkinson’s Awareness Month, to a picture of myself. As nice as the comments were, I was taken by surprise by how many took the time to say something nice. Yyet on the other hand, I’ve posted something about Parkinson’s [most everday this month] and it [seems] to go unnoticed. I, like so many others, am fighting a progressive disease that has no cure.
There are many three- or four-little-words sentences we all like hearing: “You look nice…” or “I love you…” or “Have a nice day…”
However, there is also another four-word sentence I so hope to hear, not only for myself but for those inflicted with the disease and those yet to come.
Four simple, yet complicated words…
“THERE IS A CURE.”
I do believe that one day Parkinson’s disease will only be a memory. That is called having hope. Without that hope, what do any of us really have?
April is Parkinson’s Awareness Month. We are at the end an I am reaching out to all – take a moment and help bring awareness to Parkinson’s disease. Please let me know you’re behind me, that you truly care, and that I’m not just another face.
How about you? Is there something YOU can do?
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