The faces of Parkinson’s disease. Top: Jacqueline Vera Brown, Scott Klempan, Evelyn Simon, Bottom: David Eger, Alyssa Johnson, Scott Giffney. (Photo credits: Allison Smith, Alex di Suvero, Peter daSilva, Fred Conrad and Steven Kagan.) For many people, our only experience with Parkinson’s disease is that of watching actor Michael J. Fox struggle publicly with the illness as he has campaigned for more research and funding.
But as my colleague Karen Barrow notes in the latest “Patient Voices” feature, there are many less-famous faces of Parkinson’s.
Parkinson’s disease is a neurologic disorder that occurs as a result of the death of nerve cells in the brain that produce dopamine. The loss of dopamine production in the brain can lead to tremors, balance problems, stiff facial expressions and muffled speech, among other things.
In the United States, an estimated 1 million people have the disease, and another 60,000 are diagnosed each year. Although the condition usually develops after the age of 60, 15 percent of those diagnosed are under 50.
One of those is runner Alyssa Johnson, 43, who was training for the Boston Marathon in 2003 when she started dragging her leg and developed a shin cramp. After searching for answers, she was finally diagnosed with Parkinson’s.
“It’s not something you’d expect with someone my age,” she said. “I used to run with my husband all the time. We don’t run together anymore because it’s still too hard for me emotionally. He’s still competitive, and I’m still trying to get from point A to point B.”
But there are good moments, she notes. “Occasionally when I’m running I’ll come to a long downhill, and my legs work the way they used to work and my arm swings the way it used to. It’s like running before Parkinson’s, and that’s the best feeling.”
To hear all the stories of Parkinson’s click here. And to read more about the emotional toll of Parkinson’s read this Q&A with Dr. Irene Richard, a movement disorder neurologist and researcher at the University of Rochester and investigating senior medical adviser to The Michael J. Fox Foundation.
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From 1 to 25 of 45 Comments
Thank you for sharing my story so beautifully. I hope and pray each day for a cure. Raising awareness is a great first step. But to solve the mystery behind Parkinson’s disease more funding is needed for medical research. I believe in the Michael J. Fox Foundation when they say they will find a cure within this lifetime. I have to believe…
— alyssa johnsonMy mom has Parkinson’s and mirapex has really helped her over these last 8 years. Essentially, if she doesn’t tell people they wouldn’t know it. She still raves about the researchers who discovered it. They are up there with JFK.
— TomAfter being diagnosed with Young Onset Parkinson’s I thought to myself: WHY ME?? Being strong in my faith and optimism my answer now is to help people trying to cope with this illness. I am 45 years old and thankful every day to share my life with my beautiful wife of 22 years as well as my 3 great kids, (Ages 18,16, &12). My suggestion to all is we must stick together and truly try to push ourselves no matter how hard it sometimes might be. Be proud of who you are and not be ashamed of what you have. Things happen for reasons we will never know, but the out-come of how we deal with it will last a life-time. My “Blessings” to all.
— David G. Verespy-David G. Verespy
Alyssa,
— Denise TurekI too thought your story was beautiful. May you find yourself going down many long downhills.
I will continue to support and pray for a cure.
Denise Turek
Austin, Texas
I truly hope that every medical student (doctor wannabe) listens to these stories and pays VERY careful attention to how often these individuals were told “it’s in your head” and “it’s nothing to worry about.” Obviously there are some very poor diagnosticians out there in the medical field. People don’t “make up” these types of symptoms. It seems very common for people with both Parkinson’s and Multiple Sclerosis to be initially told it is in their head and then be sent off for psychological treatment. While that is ultimately true since both are neurological disorders, the intent of the so-called medical professional is to be patronizing and dismissive.
As for depression and neurological disorders, I believe that certainly the disorder may affect neuronal signalling prior to other initial disease symptoms. However, to find out you have a disease that really will only get worse doesn’t generally leave one with a lot of hope. So, it is no surprise people are depressed. While we all have our cross to bear, who really wants to live with a disease that you know will only leave you more disabled. The issue is if the disability will have an onset that is fast or slow. Psychologically, this is an enormous burden to bear.
— Annelisi’d love to!
nice to share our feeling together!
you’ve made me moved to tear!
i’d like to thank much the peaceful world which have helped the poor or the disable overcome their sorrow!
thank much!
— minaI was diagnosed about five years ago (at age 61) and wasn’t that upset because I am otherwise healthy and knew something was amiss. As time has gone on I realize that my progression is quite slow. I appreciate listening to the comments this diverse group of fellow patients.
— SaraWhen I told a very close friend about my diagnosis and said I didn’t know how much longer I’d be mountain hiking, she, a very positive thinker, said immediately: “Well, then we’ll do something else”. I try to keep that in mind as I travel along this strange road.
I really appreciate the sharing of stories from the folks dealing with the disease. I am ready to turn 50 and was diagnosed about 4 years ago and had symptoms for a few years before that but due to having Rh Athritus my doctor didn’t think it was Parkinsons at first until I insisted. Still working due to help from Miraplex and Azilec but increase in limp and tremor becoming more noticeable. I was a competitive long distance runner in high school and college so having trouble walking is really a challenge but I can run okay within limits of age, weight and arthritus. Trying to learn to play guitar before disease and arthritus makes it too difficult and view disease as just another challenge after arthritus and years of crohns disease. Appreciate feedback from others on when to decide to advance beyond Miraplex, it makes me sleepy and isn’t as effective as it used to be. I am very open about my disease at work as others do notice and I would rather discuss in the open than keep secrets. If you have stories to share please email me at address above. By the way, I have been a fan of Michael Fox for years and am especially challenged and empowered by his leadership and courage facing this disease and helping to progress towards the tour.
— Charles SPainhourThank you for this. My husband was diagnosed with Parkinson’s 8 years ago and is now in the middle stages. Despite it being such an individual illness, he could identify with many of these people.
— MoneeshaA couple of years ago his Syndopa was supplemented with pramipexole, but he began to have devastating psychotic symptoms and had to be taken off it. Consequently he now has a lot of mobility problems. We too have noticed that when he is mentally engaged with something or enjoying something, his ‘on’ periods are longer. A positive frame of mind helps too.
It is an illness that robs you of so much. One of the most difficult for him, a person who loves to sing, has been the inability to play his guitar any more.
Let’s add a huzzah (and a helping hand) for caretakers of Parkinson’s patients, on whom much of brunt of the illness falls. It’s a cruel, creeping sentence, marked by physically-caused depression (connected to the growing loss of dopamine). Do not expect advanced Parkinsons patients to write in write to this forum. Most lack the fine-motor computer skills needed. Parkinsons is an exquitely slow-motion, psychologically devestating diminuendo. God grant us strength, one and all.
— ShiraI hadn’t planned to tell anyone at work that I have PD. But then two colleagues joked that I was “sloshed” at work after seeing me weaving and bumping into walls less than 6 months after I was diagnosed. So I have told my boss and my coworkers. Lucky for me, all have been supportive and understanding. It gives me comfort when my symptoms get me down. Thank you for this audio article. You have given others who may not know someone with PD a window into what we must cope with.
— Beltway BanditSeven years ago at the age of 42, I was diagnosed with young onset of Parkinson’s Disease. During an regularly scheduled appointment with my family physician, I casually mentioned having noticed a slight tremor in my left hand when I raise a glass. He referred me to a neurologist. I was stunned by the way the neurologist came to the conclusion I had PD…by that I mean, no conclusive and objective tests…the doctor evaluates movement from observations during a few simple routines he had me perforrm. The neurologist said with certainty after all of 10 minutes of observations that I had young onset of PD.
It’s been said that PD affects each person uniquely. Don’t forget that tremors and movement are not the only indicators of PD. Some of my early and continued struggles centered on a much more narrow and restricted mental capacity to do my day to day job. Parkinson’s affected my “executive functioning” for multi tasking, decison making and my overall neurological capacity. I found myself “freezing” with an inability to respond in critical job situations. While the impact on mental capacity may be difficult to quantify and is often overlooked, the PD community should continue to make people aware of this symptom.
I’ve learned that any type of stress in any situation increases my involuntary movements.
Most importantly, I recognize that every day is a gift from God. I like to focus on the following partial list of positives.
1)Outstanding care and support from my beautiful wife of 26 years, and our two sons.
2)Excellent care provided by Dr. Fredy Revilla of the University of Cincinnati/Aring Neurology Group
3)The disease has progressed slowly and is still predominately on my left side
4)The hope I have in research to find a cure
Thanks again for the format and quality of your content.
— Bob DavisGreat work!
http://lizsouthwoodpoetry.blogspot.com/2007/12/looking-up.html
My mom had Parkinson’s Disease from 1991 to 2006.
I took care of her and my dad with Prostate Cancer for the last 10 years of their life. I’m starting a company to compete with eBay and 10% of all profits will go to the Michael J Fox organization to find a cure. My mom had a food tube and a trachiostomy for her last four years and could never eat or drink again and she had a walker. She broke both hips from falls and both arms and fell on her face many times.
Blake Southwood
— Blake SouthwoodAs an attending physician, whenever encountering a patient with Parkinson’s disease I urge those in training to read this poem by Galway Kinnell. To read it slowly.
An incredible clinical and emotional depiction
Parkinson’s Disease
While spoon-feeding him with one hand
she holds his hand with her other hand,
or rather lets it rest on top of his,
which is permanently clenched shut.
When he turns his head away, she reaches
around and puts in a spoonful blind.
He will not accept the next morsel
until he has completely chewed this one.
His bright squint tells her he finds
the shrimp she has just put in delicious.
She strokes his head very slowly, as if
to cheer up each hair sticking up
from its root in his stricken brain.
Standing behind him, she presses
her cheek to his, kisses his jowl,
and his eyes seem to stop seeing
and do nothing but emit light.
Could heaven be a time, after we are dead,
of remembering the knowledge
flesh had from flesh? The flesh
of his face is hard, perhaps
from years spent facing down others
until they fell back, and harder
from years of being himself faced down
and falling back, and harder still
from all the while frowning
and beaming and worrying and shouting
and probably letting go in rages.
His face softens into a kind
of quizzical wince, as if one
of the other animals were working at
getting the knack of the human smile.
When picking up a cookie he uses
both thumbtips to grip it
and push it against an index finger
to secure it so that he can lift it.
She takes him to the bathroom,
and when they came out, she is facing him,
walking backwards in front of him
holding his hands, pulling him
when he stops, reminding him to step
when he forgets and starts to pitch forward.
She is leading her old father into the future
as far as they can go, and she is walking
him back into her childhood, where she stood
in bare feet on the toes of his shoes
and they foxtrotted on this same rug.
I watch them closely: she could be teaching him
the last steps that one day she may teach me.
At this moment, he glints and shines,
as if it will be only a small dislocation
for him to pass from this paradise into the next.
~ Galway Kinnell ~
— Stephen GoldfingerThank you, Stephen, for this beautiful poem. What many patients of Parkinson’s and caregivers of Parkinson’s experience is that there are so many doctors who are not too willing to listen to us - for whatever reason. It is heartening, therefore, to read your blog and to find that you are doing your bit towards sensitizing people about the devastation that this illness causes.
— MoneeshaHoping that any Foundation will find a cure is futile. It does not benefit the medical industry to find a cure for anything.
After decades and $$Billions, Where are the cures for cancer, heart disease, hypertension, diabetes etc etc ? Nowhere, not even close.
It will be up to us, the disease sufferers and caregivers, to hunt the globe for treatments and cures.
In the meantime, be careful and wary of whatever any medical practitioner tells you. He/she is only guessing and reciting what someone else said. That someone else had something selling.
— George BurnsI want to thank Karen Barrow and Steven Kagen for the great job they did in helping me tell my story. I know there are millions out there with similiar stories and we are all in this fight togehter.
I am honored to personally know Alyssa and Scott from TEAM FOX and what the story does not tell is the great work they are doing for Parkisnon’s with their TEAM FOX activities and I applaud their efforts and am proud to be associated with them and TEAM FOX.
Please take a moment to stop by our web site at http://www.focusonacure.com and leave a note, we are open 24/7/365 and always willing to help you navigate this life we have been given with Parkinson’s.
“Facing the unknown and overcoming the impossible”
KPG 2008
Stay Focused,
— Ken GlowienkeKen
Thank you to the interviewees and those commenting. My mother died in 2001, having lived with Parkinson’s for I forget how many years. Earlier on, she fell down on her head countless times. In later years, she kept forgetting (or, rather, her body kept forgetting) she was unable to walk, and she would lurch from her wheelchair to the floor and be found long after.
She never had a tremor. While tremor is common, and a common marker for Parkinson’s, it is not a given.
It may be that treatment has improved since she was declining. There came, finally, to be nothing more that could be done to help her. She was hallucinating — whether from the Parkinson’s, her medications or Bonet’s Syndrome (the brain’s way of making pictures for itself when the eyes are no longer sending their pictures to the brain [she had macular degeneration as well]) — and sometimes delusional. She fell asleep in her wheelchair all the time.
Her doctor asked me what I thought about that, as it worried her and she wondered if she had narcolepsy. I said I thought falling asleep was her brain’s way of protecting her from hours and hours of profound frustration at being unable to do ANY thing. He concurred. And then, I was moved to tears as he leaned forward, looked her straight in her rheumy eyes, and kindly and firmly told her there really wasn’t anything he was able to do to help her feel and do better.
I had never before seen a doctor who could be simultaneously caring and honest with bad news. He wrote to ME after she died (our notes passed in the mail, as I thanked him), thanking me for having been a comfort to her and for indirectly making it so much easier for him to both help her when he could, and tell her the truth when he couldn’t.
— betsy davenport, phdPost from George Burns:
After decades and $$Billions, Where are the cures for cancer, heart disease, hypertension, diabetes etc etc ? Nowhere, not even close.
It will be up to us, the disease sufferers and caregivers, to hunt the globe for treatments and cures.
Sadly, we must face this truth George Burns speaks. Read The China Study, for instance. And answer: Is your doctor advising a plant-based diet for your blood pressure or cholesterol or to prevent colon cancer, heart disease or osteoporosis? No, of course not, because your doctor only gets to keep his pockets bulging with money if he advises medication and procedures, like coronary bypass, etc.–none of which does anything at all to change the causes of the disease. A change of diet from animal-based to plant-based is not that hard if you just “do it”. A whole new world opens to you–a world of more compassion and hope and far less possibility for disease and new tastes you were unaware of. Take charge of your health, people! Let the meat and dairy industries find new jobs as they are making billions off your ill health.
— Kathleen in NYSI also was diagnosed with Parkinson’s disease 4 years ago at the age of 40. I would like to address a couple of aspects of this disease.
— Kim McChesneyCaregivers - People often ask me what my fears are concerning this disease and I constantly reply that my only fear/concern is for my wonderful husband ,because i belive that being a caregiver is much more difficult than being the person who is ill. I have been a caregiver for a Parkinson patient, my mom who was diagnosed at the age of 44 and died at the age of 55. I took care of her for 16 months after my dad died suddenly at the age of 54of a fatal heart attack. Watching someone you love suffer so much and not having the ability to do anything about it is one of the most painful places you will ever be. I am so at peace with my illness and where it is taking me, but I know my husband struggles with what is happening to me everyday. I work very hard at trying to make sure he has a support system. Please all of you who are reading this and know a caregiver, please make a point of offering them some time off or some company or anything to help make their life a little easier.
I also have started my own company and 10% of the profits will go to the Michael J. Fox foundation, so if you would like to donate in some way that will also benefit you, go to the website http://www.photo-productions.com. I take pictures and turn them into DVD slideshows put to music. I also can convert VHS, VHS-C. 8 mm, mini DV, etc to DVD. If you have any of this media and it is getting close to 15 years old yuo should have them converted because they will begin to degrade and you do not want to lose your precious memories.
Finally, I too also try to concentrate on the positive. I do have an awesome huusband of 19 years and 4 beautiful children ages 17, 15, 14, and 11. I have been blessed beyond belief with many friends and I have a God who walks this walk with me every day.
thank you for letting me comment.
Sincerely, Kim
There has been so much written about celebrities with Parkinson’s Disease (PD). I appreciate you publishing stories about every-day folks and how they manage their lives with Parkinson’s Disease(PD). My story is similar, e.g., diagnosed 12 years ago at the age of 46, first symptoms were tremor, no swing in left arm when walking and hoarse, low volume voice. I was blessed to be able to work for 10 years after my diagnosis, but forced to retire because of PD. Having a very strong work ethic, this has been my most difficult loss.
My life has improved immensely through Deep Brain Stimulation (DBS) with proper programming. I’m on a mission to spread awareness about PD and DBS through the creation of my blog, Shake, Rattle and Roll and through volunteering at a hospital with PD and DBS patients and their families. It’s my small way of making a contribution.
Kate Kelsall
— Kate KelsallBlog: Shake, Rattle and Roll
http://katekelsall.typepad.com/my_weblog/
My father for the past fifteen years has been suffering with PD. May I also mention that he has Retinitis Pigmentosa, since the age of 14 months.
— Maria SnowI’m a sophomore in college now and after all of years of watching him develope with PD I still tend break down. I know this reaction is inevitable, but I still find it hard to swallow reality. It’s wonderful to find all these stories of other individuals going through what my father is. At 72 years of age, I don’t really know if the procedure Deep Brain Stimulation is an option at this point. My parents and I continue to stay optimistic and hopeful. I wish for everyone going through this battle to keep the faith and just like my father stay strong!
It’s great to actually hear ordinary people speaking of their experiences with Parkinson’s and to know that there are people out there who can speak for all of us who live with this challenge.
For anyone looking for an internet support group, http://www.patientslikeme.com has a very active group. There are researchers involved in this group, too, so it serves an even larger purpose than the support we give to each other.
Thank you to the NY Times for including this here.
Terri Reinhart
http://studiofoxhoven.squarespace.com
— Terri ReinhartThe medications cause hallucinations and sideeffects that can be worse than the disease. I found this out with my Mom, who was confused and not functioning well, and it was the medication. Since she feels she must do what the doctor says, and the doctors don’t know how bad she was reacting, it was a difficult problem to solve. Try, with consultation with the treating physician, cutting back or eliminating certain medications, and you might see wonderful and dramatic improvement. I felt like I got my Mom back! Problem is, as an adult, she doesn’t want other interfering in her treatment, yet she doesn’t communicate the difficulties she is having, so she needs us involved. No easy answers.
— Teresa McManusI’ve lived with PD for 13 years, and credit the focused exercise program created by my caring and charismatic person trainer with giving me the physical and emotional strength to face each day “positively”. My theme song? Accentuate the positive, of course! And to share my success to other PDers, I wrote a book, and am working on a follow-up. NYT, keep up your interactive “patient voices” for PD … it’s inspiring! Thank you!
— David Anderson