September 30th, 2010
09:31 AM ET

Living with early onset Parkinson’s

Five to 10 percent of the estimated 50,000 Americans who get a new Parkinson’s diagnosis each year are under the age of 50. It’s called “early onset Parkinson’s."

Two people suffering from “early onset Parkinson’s" shared their stories with CNN Radio’s Jim Roope.

Mike Weinman's condition was diagnosed when he was 36 years old. He’s been living with this progressive disease for 10 years. “Do I think I got screwed? Yeah, bottom line,” said Weinman. “But you have to look at what you have instead of what you don’t.”

Jennifer Parkinson (her real name) learned she had the disease when she was 32 and has been living with it for six years. She said Parkinson’s not only prohibits her from her profession as a nurse, but it destroyed her marriage. “This disease is very, very tough on a marriage,” she said. “I believe my ex-husband never wanted to deal with the realities of it.”

soundoff (20 Responses)
  1. nessa weinman

    The article does not correctly address the true incidence of PD. The statistic most commonly used for the incidence of parkinson's disease in the U.S. is 1.5 million, while 50,000 new cases are diagnosed each year.

    September 30, 2010 at 14:01 | Report abuse | Reply
  2. Kelly Kubicek

    My name is Kelly Kubicek, my father is Alan. In 1962 Alan was diagnosed with PD, since then he has been living in Wisconsin with what is left of Dopamine after having a double paladotamy in Loma Linda, CA in the early 1990's under the direction of Dr Iacono. Six months after having the procedure, Dr. Iacono and his team dropped the research, calling it a failure...nice try. It was not a failure, but a savior to dads situation. Alan is the ever enduring picture of the old testimonial, "Never give up." Imagine at the age of 19 finding out you have PD and then 46 years later...still here going stronger than ever. He is a true testimonial to how to live our life with PD.
    Thank You,
    Kelly Kubicek

    September 30, 2010 at 21:13 | Report abuse | Reply
  3. Edward Vopat

    CNN did report the statistic correctly- approximately 50,000 new cases are diagnosed each year. As a 44yo who was finally diagnosed with PD after deciding (following a few years) "I really need to get these symptoms checked", I would strongly suggest anyone with a question in their mind seek the advice of a board-certified neurologist with experience in movement disorders. I am blessed with wonderful doctors, and while I must take a large amount of medication every day, knowing the source of the problem is itself a comfort.

    September 30, 2010 at 22:50 | Report abuse | Reply
  4. lee bender

    You may want to contact Rush University in Chicago, they are running a study with the nexNeuro smart mat, out of Schaumburg, IL, Providing “PASSIVE NEURO STIMULATION” by enhancing and delivering natural stimulants through a passive and non-evasive process of stimulation to the brain and nervous system, they are getting great results, I have been using one for close to 2 years now, and doing wonderfully, my story is at leebender.org, I was diagnosed about 10 years ago now actually at Rush University... You have to fight Parkinson's with all the strength you have, eat right and exercise daily, even a little if that is all you can do... I take wheat grass and alfalfa tablets from Pines International to help with the side effects of the Parkinson meds. Thank God for people like Michael Fox helping to bring more awareness and his work to raise money to help find a cure.

    September 30, 2010 at 23:47 | Report abuse | Reply
  5. lee bender

    Channel 7 news ran a story on the Rush study....I think you can find it here: abclocal.go.com/wls/story?section=news/health&id=7691254

    September 30, 2010 at 23:51 | Report abuse | Reply
  6. lee bender

    one more, hope it helps some of you... http://www.youtube.com/watch?v=vQaXXf6ln80

    September 30, 2010 at 23:51 | Report abuse | Reply
  7. Jean Cook

    I have been living with YOPD since I was 29. Now at 44, I've had 4 brain surgeries. Bilateral DBS has been a life changer for me. I highly recommend the Cleveland Clinic. They took me off all unnecessary drugs and performed corrective DBS surgery. Parkinson's is a constant battle but it can be controlled. I do almost everything I used to do, with a little more flair thanks to dyskinesa. Humor and exercise, and of course prayer, do wonders.

    October 1, 2010 at 07:05 | Report abuse | Reply
  8. Bernadette

    jennifer, parkinson's didn't destroy your marriage. your ex husband's inability to live up to his wedding vows did. i hope you find a man who is worthy of you.

    October 1, 2010 at 16:08 | Report abuse | Reply
  9. Deon le Roux - South Africa

    I was diagnosed at age 34 in August 1983 What a journey !!!!!!!!!!!!
    After 4 years I had a Pallidotomy on left side , this helped for about 8 years but in the meantime my left side also started
    But with the grace of GOD I am still here and not doing to bad if compared to other sufferers

    October 1, 2010 at 21:20 | Report abuse | Reply
  10. Larry

    I was diagnosed about 4 years ago, not by my docs originally, but by my wife. I started having a lot of symptoms and we set down one night and she went threw her list. Almost everyone of the things she observed was happening to me. She withheld her assumptions until we went to the Mayo Clinic in Jacksonville for the 2nd time. After a thourogh work-up the nuerologist there said,and I am using a direct quote here, "If he has Parkinson's it's only a nickels worth". Huh? What the heck does that mean? "Well you might be pregnant, but is only a nickels worth, don't worry about it."
    The other nuerologist back at Michigan State University, living near there at the time, after performing some tests told me, and again using a direct quote, "Here take this pill 2 or 3 times a day and if it helps your symptoms it's Parkinson's" HUh, what? Well the drug turns out to be Sinemet, and here I was now stuck at the top end of the drug chain, and I didn't even know it yet.
    In the mean time I retire from teaching after 33 years, I had planned to teach 2 more years and my wife and I would retire together and move to The Villages, Florida. I went early, luckily, and stayed active. I met a marvolous lady , who had had Parkinson's for 8-10 years, and her husband one evening, at one of the country clubs here. She hooked me up with the Doc's at Shands on the University of Florida campus, in the Movement Disorder Clinic. These Doc's have 2 years plus beyond at a regular nuerologist and deal with all kinds of movement disorders. Thank goodness I met her because the did diagnosis me with Parkinson's and put me on a regular schedule of meds and continued monitoring me on a regular basis tweeking them as we went. They have several Clinical Trials you can engage in, and if you are in these studies your visits are free, and sometimes so are your meds.
    I amcurrently involved in a clinical trial that involves the delivery system of your meds, Sinemet through a pump system, where the med is in a gel pack and it is pumped through a tube into your small intestine (jejunum) where absorbtion takes place. This hopefully will allow you to get the majority of you med without interference and stop or contain the roller coaster that some us are on. The "offs" and "ons" take a toll after while. It is a double blind study and they are still looking for volunteers, not just in Florida, but at different places around the country. I have 2 weeks to go before I find out or in better terms, know I am getting the real stuff in my pump not a placebo.. If interested I am sure if you contact the Movement Disorder Clinic, at Shands, University of Florida, they can provide you with more information. Dr. Rodriquez is in charge of the clinic.

    October 4, 2010 at 17:32 | Report abuse | Reply
  11. Ward

    I was recently diagnosed with Parkinsonism.
    A word with many avenues, but all are + or -.
    The carbidopa/levadopa I was perscribed was working very well at first, but as the dose was increased to 225mg/Levadopa.
    My "OFF" times scared the hell out of me.
    So I weaned myself off only to find they were there again w/o a bitch to behold I wass.
    Now Im back starting over on the same meds, but slower and lower.
    If there is a cure to this for future patients I hope Stem Cell Tech, or something else can save them from this lable or what the lable maybe masking.
    I was in piece work not all at once defined with the traits of EPD, in and around 35.
    These symptoms for me and those close to me are not new, now Im 49, the Parkinsonism Diagnosis (though suspected years ago) is.
    Im now on a mission to find if not my own cure maybe the set up for someone elses, If a clinical trial will accept me, yet some are so picky then pick me.

    October 12, 2010 at 16:42 | Report abuse | Reply
    • Winsome Hill

      My mom has PD and she has been on carbidopa now for several years taken 25mg for four times a day. She has been on this medication at this strength for so long that she now feels that it is absoutely not doing her any good.
      In reading your report I decided to contact you in an effort to see if you could give me a bit more of your history in regards to your experience on taking this medication.
      Thanks for your reply in advance.

      November 28, 2010 at 08:10 | Report abuse |
  12. WillowDancer

    I have recently been re-diagnosed with PD. 10 years ago, a rheumatologist told me he believed my issues and symptoms were PD. 15 years ago I saw a neurologist who didn't tell me much of anything. Last week I went to a doctor after my husband prodded me enough to do so since I have had increasing trouble with PD symptoms over the past year, esp over the past 6 months. I now walk with a cane due to balance issues and am going to see another neuologist just after Christmas. I think my husband is still in somewhat of a denial, but my doctor put me on corbidopa/levadopa. My symptops are classic but not severe, come and go but mostly stay with me. It's scary, but knowing I am not alone, and seeing what Michael J Fox has done / is doing for this "challenge", is heartening. I am doing things when I can, because I can, and not sinking into dispair as my personality seems to want to do.

    December 20, 2010 at 19:31 | Report abuse | Reply
    • WillowDancer

      Forgot to add – I am almost 47 years old (I do that alot)

      December 20, 2010 at 19:32 | Report abuse |
  13. Thomas Murray

    I found out I had Stage 1 Parkinson's about 8 months ago. I'm over 60. Nam Vets that have been diagnosed with Agent Orange poisoning, this ailment is now a presumptive ailment. Contact your local VA.

    January 6, 2011 at 12:32 | Report abuse | Reply
  14. Thomas Murray

    I' sorry that my comment is short and choppy, my Parkinson's is degenerating my body very rapidly.

    January 6, 2011 at 12:35 | Report abuse | Reply
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    June 22, 2014 at 00:04 | Report abuse | Reply
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