What Michael J Fox Has In Common with Casey Neistat

img_0001What do Casey Niestat and Michael J. Fox have in common? They have both worn the made-famous-in-Back-to-the-Future-2’s “Nike Mag” Auto Lace Hi-Tops. Granted, Fox wore them longer, but Casey has tried them on and liked them.

When Niestat, who is becoming a name brand in and of himself, returned home the other day from grabbing a Juice Press drink, compliments of a happy follower from his YouTube channel, he was welcomed at his doorstep by a man by the name of “Thomas” who was holding two black bags. Thomas was a big man, sent to make sure the items in those two bags were hand delivered safely into Niestat’s hands.

What was in the packages were the innovative, automatic lace up shoes made by Nike, a replica of those worn by Fox in Back to the Future 2, which was released in November of 1989.

Because Niestat has so many followers on YouTube (coming up on nearly five million), with followers of every age and nationality, every shape and size, Nike most likely thought he would be a good target for reaching a whole lot of people for their campaign, which is a raffle to give away several pairs of these shoes in order to raise money for the Michael J. Fox Foundation.

So Thomas handed over the merchandise and Casey tried on the shoes…

-Gray Hi-tops
-Three little lights/buttons – red, green, and yellow.
-Lace engine fitted into the bottom of the shoe
-Sensor which determines how much the shoe should be tightened with the foot inserted.

Pretty nifty. Casey was impressed.

He didn’t get to keep the shoes but he thoroughly enjoyed the opportunity to try them on for Nike and promote the raffle in order to raise money for the Fox Foundation.

The MJFF is selling raffle tickets on their site for a giveaway for several of these shoes. All money is donated to the MJFF, which benefits Parkinson’s disease research.

The Fox Foundation site probably just boosted their site views just by having Niestat slip his foot into a tennis shoe. Well done, Casey, and – THANK YOU!

When the Doctor Becomes the Patient

“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


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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.

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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!

“Happy retirement.
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,
Mom”

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.

Nicotine Patches to Stop… Parkinson’s Disease? by MJF Foundation, FoxFeed Blog

Posted by Nate Herpich, January 18, 2013

Nicotine Patches to Stop… Parkinson’s Disease?

Across the board, physicians agree: There’s no doubt that smoking is bad for you. But is it possible that there’s just something about a cigarette habit that might lower a person’s risk of developing Parkinson’s disease (PD)? Epidemiological data (in which patterns in comparative populations are analyzed) has long supported the ideathat those who have spent years as smokers don’t get PD as often as non-smokers.

Of course, smoking a pack a day to maybe prevent the onset of PD hardly makes sense — the adverse effects of puffing on nicotine cigarettes certainly outweigh any potential benefits. Still, the data on smoking and PD is too intriguing to ignore: looking collectively across many studies, it’s estimated that current smokers are 60 percent less likely to get PD than those who have never smoked. Which begs the question: Could there be a drug for PD hidden somewhere within the rolling papers? Researchers believe that maybe there is, and the potential therapeutic agent that they’re intrigued by is nicotine.

This month, an exciting development toward learning more about nicotine and PD: A clinical trial sponsored by The Michael J. Fox Foundation (MJFF) is launching in the United States to explore the potential therapeutic benefits of those very same nicotine patches that people take to try and quit smoking.

NIC-PD will enroll 160 PD patients in Germany and the U.S., providing some volunteers with nicotine patches and others with placebo patches, in order to determine if the real ones might have the potential to slow the progression of PD. Eighty of these patients will be enrolled at 11 centers in the United States, saysCornelia Kamp, the project manager of the American arm of the study.

“The drug used in the trial is the same exact drug from Novartis that people have used to quit smoking for many years,” explains Kamp, which is good news in terms of clearing hurdles associated with the therapy’s safety. She is hopeful that her team could have high level results from NIC-PD by spring of 2015. A best case scenario: The results both show that disease progression is slowed, and are convincing enough to encourage a larger follow-up study which could prove to be more definitive.

Of course, there are hurdles. Most imminently, explains the U.S. study Principal Investigator James Boyd, MD, of the University of Vermont, nicotine gets a bad rap with the public because of its relationship with tobacco and addiction. In smoking, it’s the bevy of chemicals in a cigarette and the process of smoking that can cause cancers, not the nicotine itself. Still, helping prospective trial participants, and PD drug developers alike, to understand its benefits could prove to be a challenge, due to nicotine’s reputation.

The good news for people with Parkinson’s, says Boyd, is that pre-clinical studies have shown that nicotine could protect dopamine-producing neurons in the brain from dying. But we’ve yet to see this effect in people. NIC-PD will be the first clinical study to begin to get to the bottom of this disease-modifying potential.

And there’s still much to learn about possible biological connections between nicotine and PD. To date, most human-based data around nicotine and Parkinson’s has been purely epidemiological, says Maurizio Facheris, MD, MSc. This means that there might be other ways to describe the relationship between nicotine and PD that aren’t “brain chemically-based.”

Here’s one such example of how epidemiological data can return scientific twists and turns: A past studyfrom Matthew Menza, MD, found that people with PD tend to be less likely on the whole to be “novelty-seekers,” possibly because they have less dopamine in the brain (dopamine might inspire people to be more likely to seek out emotional stimuli). These individuals were also more likely to see smoking as a bad idea. On the other hand, the study found, “novelty-seekers” were more likely to take risks such as smoking, and they were also less likely to develop Parkinson’s. In short: Maybe those who are in the early stages of PD are just less likely to smoke because of how their brains are wired.

The good news is, NIC-PD is designed to begin to clear up some of these questions, and determine if it’s the addition of nicotine in the body that could really be making the difference. In addition, MJFF is funding additional pre-clinical work to learn more about the biological potential of nicotine in the brain.

And there was more intriguing news from last January, when research published in Neurology, the medical journal of the American Academy of Neurology, found that a nicotine patch may improve the memory loss common in mild cognitive impairment (MCI), a condition that is often a precursor to Alzheimer's disease.

The next few years could be telling as to whether nicotine might help to slow or prevent PD. Stay tuned for updates.

And, please, in the meantime, says Facheris, remember, it’s never a good idea to light up if you can help it. The potential good in nicotine is always outweighed by the toxins that enter into the body when smoking a cigarette. That’s the stuff that could produce cancers.

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