Stories

Morgan

Handling the Curve Balls

Diagnosed at 16

I was diagnosed with Juvenile Parkinsonism at 16 after two years of doctor visits, tests and scary misdiagnoses. I remember being perfectly healthy, never even having had the flu until June 2007. I was 13 at the time and was out to dinner with my family to celebrate after I had pitched a win against my schools rival (Still the only time we've won against them!). While in the middle of a conversation with my mom, I passed out. About 30 seconds later I popped my head back up and continued like nothing had happened, while everyone looked like I was crazy. I went to the doctors and they concluded I choked, despite not haven eaten anything. Nothing else happened for 6 months. Then I was sitting in my Sophomore English class when all the sudden my right hand started shaking and I couldn't stop it. My friend walked me down to the nurse but on the way I passed out falling down the stairs. Thankfully my mother was a teacher in the school and she was able to be with me as I was scarred out of my mind and confused. We decided it was time to see a neurologist.

In December of 2007 I was treated by a neurologist who was horrible. I was 14 at the time and scared to death as to why all the sudden I was shaking. He told me I had a brain tumor! Then weeks later said he had switched the scans and I didn’t have a brain tumor but that I had epilepsy. Frustrated, scared and confused my family decided to switch doctors. It was at that time that I was diagnosed.

I have always been an active athlete, so when my doctor told me he could put me on a medication that would help the tremors but I would probably not be able to play sports any more and would struggle in college, I decided not to go on any PD meds, but was still on xanax, metopral, and topamax from the neurologist. I finished high school having gone from a straight A, varsity lettered athlete in the who's who book of high school students; To a C/D average student who wasn't allowed to play for my school sports and was lucky to get into a community college. I was asked to be an RA my freshmen year, but was removed for medical conditions as the school felt I was a liability. I ended up leaving school for a semester and working. I got off my meds and went back to school feeling like my old self. I joined my schools softball team and made A's/B's in school going 20 credits. I felt like my old self I still had tremors on my right side but tried to ignore them. I recently transferred to massage school and have become a NYS LMT and in doing so have found some level of acceptance with my PD. I have decided that all that I have been through was a learning experience and I need to take what I can from it to help others. I am devoted to medical massage techniques and in helping others hope to help myself.

The past four years since my diagnoses I have been struggling because I don't know anyone my age dealing with this, which makes it so hard to believe. When the movie Love and Other Drugs came out, my best friend wanted to go see it - neither of us knowing what it was really about. As we watched it I saw my friend getting really uncomfortable and at the end he asked if that’s what it's really like. I actually started to cry laugh! I said yes and no, yes I related to Anne Hathaway in a lot of ways but its still a movie and exaggerates things. Honestly I'm glad I saw the movie and glad my friends did too. Since then it's less awkward around them. We actually joke about some stuff and it helps.

* Juvenile Parkinsonism (diagnosis under the age of 21) is viewed as a distinct disorder, one that is often genetically determined. Juvenile Parkinsonism usually has a different course than young onset Parkinson's disease or typical later-life Parkinson's disease.

9 Comments

Dear Morgan,
Recently I was diagnosed with Paroxysmal Exercised Induced Dystonia. I will be 19 in the fall. This is a rare form of dystonia which has been assigned as an early symptom of Parkinson's... Recently a twitching in my hand has become worse and my "episodes" of Dystonia have become stronger. I also cannot do the basic finger tapping test with my left hand, it is impossible to move my fingers in the correct pattern on that hand. I also notice balance problems and frequent and debilitating migraines which make it impossible to concentrate let alone function at all. I have read your story and many others on this sight and I am very frightened that I may be showing signs of early Parkinson's. I live in a very northern and remote part of British Columbia, Canada and do not have access to any other form of doctor but a General Practitioner. Your story has inspired me to take charge and call my old neurologist in Edmonton and demand testing so I know whether I need to prepare for the worst. You are a brave woman, keep fighting the good fight :)

Nicole, May 21, 2013

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Dear Nicole,
I hope you get some answers, I know how scary it can be. I'm glad that my story and others have inspired you to take action as the scariest part is the not knowing. Whatever the results are stay positive learn to laugh about it, it helps! Good Luck

Morgan, Jul 1, 2013

Dear Nicole,

My symptoms started at age 33. Now, I am 41 years old. I thought I had been diagnosed early. They don't seem to know as much about young onset PD. The more I read about PD, the more I learn about misdiagnosis. I was surprised when I read your story, how young you were. Stay positive and hopeful for a cure.

--Chad

Chad, Sep 12, 2013

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Does anyone who is diagnosed with Parkinson's live in or close to Salt Lake City, Utah? My son who just turned 19 has severe hand trembling and we believe he has Parkinsons. He is a artificial insemination child. The donor is from the University of Utah andrology lab #091. He has a family member who had Parkinson's. The lab told me he had many successful children born to him, thus I wonder if any of them are in our situation. I am terrified as he is my only child that I had at 40 and all we have is each other. Help!!!!

Leslie Ann, Nov 2, 2013

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I just wanted to write in and tell you that your story really meant a lot to me. To know that it's not only me going through this. I mean, obviously I know I'm not the only person on the entire planet to be diagnosed with Juvenile Parkinsonism, but it's very lonely when you don't know anyone or even heard of anyone having the disease. I was diagnosed in 2011 after dealing with it and many unkind doctors for the previous 5 years. It's been a hard struggle and still is but I'm getting by with the help of a positive attitude and a loving family. Recently I started reaching out to others who are living with PD and I have found it to be helpful. That's actually what brought me to this site and what led me to your profile. I was amazed, thankful and yet sad at the same time, when I saw that you had the same diagnosis as I do.

Anyway, I just wanted to let you know that it helped me reading your story and knowing that I'm not alone. So, thank you for that. I hope you never let your light go dim and you always live your life to the fullest. :) Take care!

Julianne Vela, Nov 19, 2013

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To make a very long story short...My 14 year old daughter was diagnosed this past summer with Juvenile Parkinson's. It took the Doctors over two years and several false diagnosis and finally UCSF figured it out with a DaTscan. We are currently going through the testing process to see if she qualifies for DBS to help with the typical Parkinson's symptoms.

Does anyone know of a website or a group that younger people and their families go to for support? It would help Jamie's spirits if we could fine someone her age that she can at least be a pen pal with. We were told that only a handful of kids under the age of 16 have been diagnosed...

Dan Block, Mar 3, 2014

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Hi
I was wondering if it is possible for symptoms to go away and return(get worst) after two or three months. Over the summer I had problems walking and a constant tingling in my legs particularly my left leg. Then I began to develop tremors while reading or just sitting down. After an intense period they stopped. Now three months later my legs feel stuck to the floor. I now kinda walk like an older individual. I am often dizzy(passed out a couple of times), my vision is blurry, my migraines are off the charts and my neck is stiff a lot. I have an expressionless stare that scares the crap out of my classmates. Also I noticed my throat feels like its getting smaller and smaller.I have to chew a good 10 times more just to have anything to eat. I have a hard time functioning at school (high school - just turned 18) so much so that I am often absent. I was a straight A student with little effort and now I have a hard time recalling material so my grades are sliding.
Any explanations would be appreciated. My doctors are horrid and I don't have health insurance to afford competent ones. I have done an MRI and basic lab test which all appear 'fine'or so they say. I don't know of any of my family members having Parkinson's, my grandmother had Alzheimer's I think but that's it.

Lola, Mar 17, 2014

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I know of 3 people who had Juvenile Pakinsonism diagnosed at 16 or below. My son was diagnosed at age 9(now 12), his birth Mom at age 16, and his grandmother at age 16 also. So believe me you are not alone! There is much hope for better "functional cures" nowadays compared to even just 10 years ago. So hang in there!

Anon, May 16, 2014

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Hi Morgan,

I am 48 and was diagnosed with Parkinson's Disease about four years. At the time, I was scared, confused, but most of all angry. This was supposed to be an old persons disease! Oh sure, Michael J Fox had it, but that was different.

I've been wrestling this beast since before it had a name to call it as I was misdiagnosed as having Depression in my early 30s. I just went through the first DBS surgery and go back in next week to attach the battery. I did this so that I can watch my 15 year old daughter, Julia, and my 11 year old son Nate grow up.

Morgan, be on top of todays technology because when you figure out for sure what you need to feel better, you'll find it. For me it DBS. For you it may be something even better,

Art, Jul 22, 2014

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