Stories

Stephanie Head Shot   Revised

It's Okay to be Different

Diagnosed at 21

When I was diagnosed with young onset Parkinson’s at the age of 21, I didn’t know what to think. When I thought about Parkinson’s, I thought of a person my grandparents’ age not a senior in college. I was even more surprised because no one in my family had ever had Parkinson’s, so for me to get it so young was unbelievable. It all started one day when I was a senior in high school, sitting in my advanced algebra class, and I started having tremors and feeling like I was going to pass out. I was so scared. I had no idea what was going on. My doctor figured it was low blood sugar and told me to eat more often and the tremors should eventually go away. Four years went by and I was still having the tremors but no one really knew why.

Then on Christmas day 2010 I started getting horrible headaches that would last for five days straight that no medication would get rid of. In July 2011, I was still having the tremors and the killer headaches. I went in for my annual physical and my doctor recommended that I see a neurologist to determine if something was wrong neurologically. By this point my parents were getting quite concerned about me and the symptoms were starting to become more noticeable. I was starting to stutter when I would try talking. I knew what I wanted to say, I just couldn’t get it out. I would also have a vacant look on my face at times. When I would walk I wouldn’t swing my arms or have them at my sides like most people do but rather held them in front of my thighs. A couple weeks later I saw a neurologist in my hometown. He was unable to determine what was causing these symptoms but recommended I get some blood work and a CAT scan done and recommended I see a movement disorders specialist in the same clinic. The test results came back normal. The next week I saw the specialist who had me do some cognitive tests as well as tests that looked at my physical movement. At the end of the appointment he told my dad and me that he was in the process of moving to Philadelphia and that I would need to see another neurologist. He recommended I see a doctor based out of Chicago, which is about two hours from my house. In the meantime he had me have more blood work done as well as an MRI and a EEG.

All of this happened at that same time I was getting ready to start my senior year of college. I was scared to know how my condition would affect my school work and the way my peers viewed me as my symptoms had rapidly progressed over the summer. By this time writing was painful and my stuttering had grown more pronounced. I am lucky that the school I attend was willing to work with me. I was able to have more time to take tests, was able to tape record most of my lectures, and many of my professors allowed me to have extensions on projects. That was the roughest semester I had ever had. I was so tired by the end of the day and missed a lot of school due to doctors appointments, but I finished the semester with a 3.21 GPA. I was diagnosed with young onset Parkinson’s the day before Thanksgiving of 2011.

I am so lucky to have the support system that I have. My family and friends have been absolutely amazing throughout the whole process. They are by my side on the good days and cheering me up on the bad ones. Without them I don’t think I would have handled this situation as positively and as strongly as I have. I recently revealed to my classmates my condition and brought many of them to tears. Many of them have been in classes with me for years and had no idea what was going on. I am glad I did it and would encourage others to do the same. Now that people know, I feel like I can be myself and not feel like I am hiding something any more. I will be graduating college this coming December with a degree in Elementary Education as well as Exceptional Education. I plan on sharing my story with my students to teach them that it’s okay to be different and to embrace it because that’s what makes you unique.

I truly believe that knowledge is power and the more people know about Parkinson’s the more those of us living every day with it will be accepted and seen as normal people who just move a little slower. My message for whoever reads this is to not take anything for granted because your life might change in a split second. I know mine did, but I’m a better person for it.

24 Comments

Samantha - first I want to say how sorry i am that u were dx at such a young age. I had just turned 33 when I was dx but to be 21...You really seem to be pretty level headed and very strong...all traits we need to get up every day.
Secondly I want to tell you that I have had 2 pregnancies after dx. I don't know if that is a worry of yours or not, but if you have any concerns, I would love to help in any way I can. I always tell people PD is definitely life changing, but never let it be life ending. My story is on here too if you'd like to read, and if I can be of any help feel free to look me up on FB. I found your story inspiring. U will be just fine!

Angela Badaracco, Apr 23, 2012

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Angela, thank you for your support. I will definetely contact you if I have any questions since I don't know anyone else who was diagnosed young. It's been a hard battle but I have amazing friends, family, and boyfriend by my side and like you I have God. I read your story and your story inspired me as well. Your story showed me to never give up on the things you love just because you have PD I hope you keep running and I will not give up the things that I love either.

Samantha, Apr 24, 2012

Samantha, I know you don't know me but I am a co-worker of your mom's. She is amazing and I can't tell you enough of the love and fight in her heart to see you through this. I truly believe that it takes a very special person to handle something as challenging as your diagnosis. I knew you were special but after reading your story, you are a true gift. Please take good care sweetheart!

Dawn McPeak, Apr 24, 2012

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Samantha, Sorry you have to go through this at such a young age and I know it has been a tough road for you and your family. I did talk to you mom right after you were diagnosed and what a shock it was. But you have a strong loving family and they will help you along the way ( I can't imagine what your parents are feeling knowing they can't just fix it for you). I am proud of you for fighting and working so hard in school and graduating. Remember God has the ultimate plan for each of us and he will use this to bless you in some way.(I know that is hard to see right now). I am praying for you sweetie.
Nanette

Nanette, Apr 24, 2012

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Thanks Nanette. That means alot to me. I have the best family they are my rock. I'm so thankful that I have the family I do I wouldn't be able to get through this without them.

Samantha, Apr 26, 2012

Samantha,
I admire the grace and good nature'd spirit you carry as you face the hand you were dealt. I know how difficult it is being diagnosed so young. I'm 27 and was diagnosed a year and a half ago. One of the hardest symptoms I battled was the stuttering, or Word Plucking as I say...it's there but you just cant get it out. I felt like a blubbering idiot, well often times still do! It is quite the humbling disease I must say, all the simple day to day things I took for granted will never be the same, as I'm sure you must also understand. You go girl,and know there are other's out there who also possess this unique understanding and appreciation for the path so many of us will follow. If you ever need to talk, I have always have an available ear!
Leah

Leah, Jul 20, 2012

Samantha,
Honey, I am sure that I speak for many in the PD community when I say that you are an amazing young woman! To have this diagnosis at 21, and to soldier on with your schooling while having the symptoms and worries you were experiencing is nothing short of remarkable. I often say that "for such a time as this" we are thrown into the storm, and I have NO doubt that you will go on to lead a blessed, full life and that you will make your mark in this world. If I can ever help with your journey, I hope you will reach out. God bless!

Susan, May 4, 2012

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SamSam, you are awe inspiring. I hang my head in shame for believing that I was the `Youngest Parky Ever in The History of the World` when dxd at age 49. Your upbeat attitude and sense of direction will replace thousands of prescribed pills. Stay Strong SamSam, I think the Parky Community will be looking to you for confidence. jb

jb, Jun 12, 2012

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Thanks jb that means alot. I try my hardest to stay positive otherwise this disease will take over. I have an amazing support system that treats me as if I didn't have PD and helps me when I need it which helps.

Sam, Jun 12, 2012

This a very well written and thought out story. Your attitude is great, and the perspective you've gained is inspiring. Thank you so much for sharing .

Dave, Jul 17, 2012

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Samantha,
It is great to hear how gracefully you have taken all this on. I am nearly 28 and was diagnosed at 26 so I also understand the frustrations of this disease. The stuttering was difficult to adjust to. I call it plucking for words, cause like you said, it was there, but it just wouldn't come out. I felt like such a bumbleing idiot, well still do at times but we make it work ;) If you'd ever like to talk i would love that!
Leah

Leah, Jul 20, 2012

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Leah,

I am glad I'm not the only one out there with the stuttering problem. I have started speech therapy a couple weeks ago and I've already seen some improvement. I am always looking for people to talk to that are around my same age and going through the same things I am, especially since most people get diagonsed around 60 and above making it harder to find people who aren't 40 years older than me.

Sam, Jul 25, 2012

My partner was diagnosed the same week as you were at the age of 30. (His story is on here, too--his name's Gary.) Looking back, we think he had mild symptoms through much of his 20s. I wish you lots of luck and I'm glad you have the support of friends and family.

Sarah, Jul 30, 2012

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Samantha

Hugggssss and lotsa best wishes to you....Here I was cribbing being diagnosed at 36...with two young kids.... I used to feel lost, till I found blogging and video blogging....My story is up here too...But I just wanted to let you know that you are an amazing woman:)))

Sutapa, Oct 4, 2012

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Dear Samantha
reading your story made me feel ashamed of my self. Here at 42 yrs. old still on denial, depressed and with no direction to take. Reading your story made me to stop mopping and take action. I guess it hasn't helped that I haven't found the right Dr. I was wondering if you could help me, you mentioned that you live near chicago and saw a dr here, I am from chicago, did that dr. worked for you? would you recommend it? I would appreciate from the bottom of my heart. Hope to hear from you!!!

Enriqueta Soria, Oct 10, 2012

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Enriqueta,

We can help refer you to a Movement Disorder Specialist in your area. You can call us at 877-223-3801 and we would be happy to help!

APDA , Oct 10, 2012

Hi Samantha,
I noticed in one of your comments you mention your boyfriend. I'm also dating a woman with YOPD and find it has it's challenges. She is 31 and was diagnosed 3 years ago. We have only been dating about 4 months. She is a wonderful woman and many days PD doesn't even enter into the equation. Other days, it's front and center. I was really, really emotional the first time I really saw some of her aphasia and dystonia. Do you have any advice on how to handle a new relationship with someone with PD? I try to focus on every day life when the PD symptoms are mild and on bad days I am more of a caretaker. I want to do the right things but sometimes I'm not sure what I'm doing.

p.s. Do you know of any regional support groups for friends and family, or any groups on FaceBook perhaps?

Thanks,
Tyler
Toledo, OH

Tyler, Nov 12, 2012

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I know it is not easy being in a relationship with someone with YOPD and it takes alot of work becuase each day is different. Do not worry always having to know what to do it takes time to get use to the signals that people wiht YOPD usually come up with to let you know they need help I know that I like to try and be as independent as possible. One of these signals tha tme and my boyfriend came up with is I put one finger up when I want to say something but can't get my words out this helps when we are in a group of people and he sees that signal he knows he can jump into the conversation to help me get my words out.

I am not sure of any regional support groups. If you go onto the National Parkinson's Disease websit and click forums at the top of the page you can find all differnet forums for you and your girlfriend to talk to . I hope this helps

Samantha, Nov 15, 2012

Im only 17 and im having horribble tremors ive noticed maby just a couple weeks ago, and also i cannot come close to walking in a straight line nor write on. I also have tmj infact my jaw is nearly closed shut from being so bad. Ive asohad hard times swallowing sometimes i go to sleep and cant even feel my body. I know your not a doctor but im really scared this could be whats wrong. Ive got bad inziety and i fit most of the symptoms. I dont know what to do im just really scared.

stephanie, Dec 16, 2012

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Hi Stephanie,

It may be helpful for you to see a Movement Disorder Specialist, which is a neurologist who specializes in Parkinson's disease. Please feel free to e-mail us at apda@youngparkinsons.org and we would be happy to assist you in getting connected with a doctor and answer any questions you may have.

Warm Regards,
APDA Young Onset Center

APDA National Young Onset Center , Dec 17, 2012

Hi Stephanie. Iwould also suggest that you go see a Movement Disorder Specialist. Don't get discouraged if you don't get answers right away. It has taken my doctors 4 years since my symptoms started and they still aren't positive about whats going on. I know what your going through I was your age when I started noticing symptoms. My biggest piece of advice whether its Parkinson's or not keep your head up and don't let the disease take over your life. If someone tells you that you can't do something don't listen. I graduated from college last weekend after fighting to stay in school. Good luck with everything.

Samantha, Dec 22, 2012

Dear Samantha,
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 :)

Nikki, May 21, 2013

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Samantha,

Your story is very inspirational and gives me great hope. I am 28 and was recently diagnosed. I too have a slight stutter but only sometimes. I am hoping that part of it will not progress quickly. Hugs to you... what an inspiration.

Renee, Jul 23, 2013

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There are alot of resources I never see posted that might make you think positive about this.

My father is completely free of the drugs. Has had very good response to super foods like Kapikacchu in a powder form 1/4 a teaspoon.( better known as Mucuna Pruriens ) Organic Traditions
Gokshura in a powder form 1/4 a teaspoon. Organic Traditions Thats what we use and seems to help quite a bit.

They may not help you but my father swears by them.

eat very low sugar very low dairy/Animal protein in general. Not eliminating Animal protein but concentrating on fruits and veggies and all the plant proteins that he likes.

google for studies on Mucuna Pruriens compared its results to standard Levodopa treatment.

Websites of interest
The websites over the years found to be helpful.

www.drpaneri.com Dr. Paneri.
I love how he puts it...
"It appears that the side effects of Levodopa bear an uncomfortable resemblance to the symptoms of Parkinson's disease that it is intended to treat, which raises the question – if Levodopa is missing from the system, why does it exacerbate the Parkinson condition itself?"
he is big on not eat ..any arsenic or lead.
egg plant , potato , green peas, no pickles

www.pdrecovery.org
"By the year 2002, we had realized that no person who was currently using dopamine-enhancing antiparkinson’s medications should enter into a recovery program. Beginning in 2002, we no longer accepted medicated patients into our program. To explain our position, many case studies were included in a book, Medications of Parkinson’s, or Once Upon A Pill: Patient experiences with dopamine enhancing drugs and supplements. This book, released in late 2003, is available for free at our website. The case studies in this book detail the disastrous results that occurred when medicated patients began to recover."
http://pdrecovery.org/medicated-patients-read-this/

www.blogtalkradio.com/parkinsons-recovery
Weekly radio show (very good interesting lotsa interviews with fully recovered folks not the best audio)
Information, resources and support for persons with the symptoms of Parkinson's disease who are looking for natural and safe ways to find relief

http://www.parkinsonsdisease.me/ Robert Rodgers, Ph.D (sort of a blog for the recovery show)

http://health.groups.yahoo.com/group/PDrecoverers/

http://www.raysahelian.com/
Ray Sahelian, M.D

http://www.naturalnews.com/Parkinsons.html
(one of the best new type websites for all sorts of interesting stuff in my opinion)

http://www.mucunapruriens.net/ (They sell product but list studies)

http://www.fightingparkinsonsdrugfree.com/

http://www.health-science-spirit.com/parkinsons.html

Mike, Aug 24, 2013

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