Stories

Paola2

Making Dreams Into Reality

Diagnosed at 15

I understand my Parkinson's is considered Juvenile Parkinsonism* because I was diagnosed when I was a little girl, but now I am a young woman living with it, and I want people (especially women with PD) to know they don't have to be afraid if they want to have a family. In spite of the difficulties and hard moments during my pregnancy, I love being a mom because my son gives me the strength I need to keep fighting against PD.

I was only 12 years old when everything started. I didn't pay attention to those things until one afternoon I was doing my math homework and my hand started to shake. I couldn't write a single number in the paper. That was the first time I felt helpless.

I went to my grandfather's neurologist (he had Parkinson's too). After I had a lot of tests, MRI, brain scans, the doctor diagnosed me with PD. It was very difficult for my family and for me to believe it. We did a lot of research, and we weren't able to find another person of my age who had PD. I was only a little girl. I was really scared, especially when I thought about my grandfather. He spent most of the time in bed, unable to move, talk or eat by himself. I tried to live like a normal girl and do the same things as my friends with the only difference that I had to take pills three times a day. None of my friends knew about my PD because I could hide my symptoms very well.

Time passed and I with it my PD was getting worse . I needed more medication to keep myself "on" and active like the rest of girls of my age. Side effects of the medication suddenly appeared. I couldn't control my dyskinesias. People usually told me that I was hyper-active because I moved a lot. I didn't let PD stop me from making my dreams into a reality. I went to college, and I was one of the first of my class to get an Economist degree. I worked as an Economic Analyst for the Stock Exchange Magazine, and I was very proud of myself because I published more than 20 articles.

I meet the love of my life. I told him about my PD before we started our relationship. I believed I had the right to be happy, to get married, to have babies and have a family. He told me that everything was going to be fine and that he accepts me just the way I am and that he was going to be by my side and love me forever. We got married and we have a healthy son who just turned one year. They are my strength for my daily struggle against Parkinson's.

It is so frustrating when your brain sends the order to your body but it doesn't respond to those orders. At the moment I am taking pills every three hours, and I am "off" every 45 minutes of each dose, or even more. I wake even in the middle of the night to take pills, otherwise I won't be able to move or sleep. It is difficult for me to walk. I freeze, and I have to make a lot of effort to balance my body, otherwise I will fall.

It has been 16 years now, and everyday I wake up I wonder how my day is going to be, if I will have off episodes or maybe not. Today is what we have, and we have to make the most of it.

Learn from yesterday, live for today, hope for tomorrow.

Paola

* 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.

44 Comments

Amazing courage to have a family and having PD. Congrats! Paolo, you are an inspiration to us all.

ken Nguyen, Jan 25, 2011

reply

My son was diagnosed with PD at age 24 but his sysptoms started when he was 16 years old. We culdn't fid a DR that would take his symptoms seriously because there is nobody in his family tree that has PD.
Thank you for your story.
I am going to pass this website on to my son.

Deb King, Apr 4, 2011

reply

hi paola....iam 29 and i have Parkinson disease.....i was diagnosed 14 months prior but my symptoms started at 24..
i have two kids age 9 and 2 ..Iam a web designer by profession..and iam really proud of you

shaz, Apr 24, 2011

reply

Thanks for your comments !!
I am very optimistic and I believe that the medice has so many advances that the cure is going to be found!! Don't let the off periods stop your life , fight against them and proof them that you are strong!!! Just life the most of every day and smile!!!

Paola, May 1, 2011

reply

Hi,I am also diagnosed as PD at age of 28 now i am 29.I need suggestion from u how to conceive baby.Did u take medicine during your pregnancy period?.i eagerly wait for your reply

Nita khanaL, May 13, 2011

reply

Hi Nita give me your email and I could tell you how my pregnancy was with every detail

Paola, Jun 16, 2011

Hi Paola.

I'm just diagnosed with PD 4 days ago, aged 25. My mother had the disease for 10 years now, diagnosesd at the age of 50. When i startet having rigidity and tremor in my right hand a year ago, it didnt take me long to suspect PD. I'd seen how my mother got the same symptoms...

Went to se my personal doctor 5 months ago, who sent me straight to a neurologist. After 2 appointments with him he sent me to a SPECT/DAT brainscan, and on my 3rd appointment he diagnosed me with PD. I feel gratefull i was taken so seriously so fast, but also its a great shock off course!

I cry a lot these days and my biggest fears include: will i ever find a man who will love me despite of the PD, and have babies with me? (im single).. and will i ever get to use the university degree in Public Management, that i am about to complete within the next two years.

I have read your story 3 times now, as it lifts me up a little, giving me hope that someday, some man will love me despite my PD.

Thanx!

Hannah, from Denmark

Hannah, Jul 15, 2011

reply

. Hannah , don't be afraid you are not alone . Of course you will find someone who loves you for what you are not for what you have. Always follow your dreams and don't let anything or anyone stop you.
You are perfect, and deserve the best !! Always keep that in your mind!!

Paola , Jul 5, 2012

i have seen my father going through all this n i really wish that asap doctors find a cure of this disease and i pray for all of u that u ll get that cure n live a healthy life ...

BILL, Jan 12, 2014

Hi Paola, I was diagnosed 3years ago now I'm 39 and have 3 children, I'm very proud of you !!! I only take amantadine & lexapro, but I have some days that my head and shoulders are so rigid....I'm afraid to start stronger medicine for the side effects...I don't know what to do?

Virna, Jul 15, 2011

reply

I was diagnosed a year ago on my birthday of all days, I am 28 now. It has been a difficult road with a wave of emotions but I have finally come to terms with it. Every day is a challenge and people don't always understand what it does to you. I commend you for your strength and thank you for sharing your story with us!

Will, Oct 2, 2011

reply

You are an amazing women and I hope I can be as strong as you. I am 24 with two kids ages 2 and 3 my symptoms started right before I got pregnet with my first born. I thought it was the pregnecy but almost four years later I still have the same symptoms and they have gotten a little worse. I recently went to my doctors and she said its Parkinsons disease but she need to do more test and reffer me to a specialist. Until then I am taking medication, The medication I am taking is making me sick, but if I dont take it I wont sleep. I will be lieing if I said I wasnt scared, my dream is to help people to be a nurse. I have been a CNA since I was 16 years old. I will do my best to think of you and be strong and live a normal life. Continue doing what your doing always remember I am praying for you and everyone else.

Milissa, Oct 13, 2011

reply

Hi Deb!
I am a 21 year old female who feels that she has most of the symptoms of PD.But I am in the same situation as your son.I have visited several doctors and will not take my symptoms seriously.Since I have no medical insurance and a consultation with a neurologist can be so expensive.. I have lost hope in finding a diagnosis for what I have.I am currently searching for a doctor that can actually help me out.

Steph, Dec 28, 2011

reply

Hi Steph, I am also 21 years old. I have had my symptoms since I was 15 years old. I just got my diagnosis in September of 2011 that I had Juvenile Parkinsonism like Paola. Don't give up hope! I had given up hope that I would never find any answers as to why I couldn't control my movements, then I saw my new doctor in my new city and she referred me to a neurologist who was able to diagnose me on my third visit with him after giving me Carb/Levo to try and see if that helped the symptoms. Which it did. Check with your local Health department or Social Services, they may be able to help you find some insurance or something to be able to help with the cost of the appointment. This was one of my biggest fears when having to see the doctor, but it's worth it, I promise you! Since starting my medication I have felt a million times better! I wish you the best of luck and remember, never give up hope! :)

Julianne Vela, Jan 10, 2012

reply

Thanks for your story. My grandfather also had Parkinson's; he passed away many years ago - I think maybe when I was in high school.
I just have one general question, and that is what is the rigidity like, and where do you experience it?

Congratulations on your perseverance!

Julia, Feb 17, 2012

reply

I know exactly what you are going through I was diagnosed a couple months ago at the age of 21. I started showing symptoms at age 17 but everyone thought it was a blood sugar issue. It took four years for me to be offically diagnosed. Like you I started having tremors doing math work. I also use to call my tremors episodes before I knew what it really was. Keep up the good work.

sam, Mar 5, 2012

reply

I was diagnosed with DOPA Responsive Dystonia (DRD) I was 27 years old. It mimics juvenile Parkinson's disease almost identically. Many neurologists are not familiar with DRD and so often times people with DRD often get misdiagnosed with having parkinson's disease. My doctor is a movement disorder MD specialist and Parkinson's expert. She diagnosed me with DRD. I take 3 half pills of sinemet each day. I got married when I was 33, and have 2 young boys now. DRD is very Similar to Parkinson's but has a different prognosis. Ask your doctor about DRD, and have them do thorough tests to rule it out. It's worth a shot! If you have questions about DRD, go check out our Facebook group called 'Dopa Responsive Dystonia'.

Angela, Apr 10, 2012

reply

I was diagnosed with DOPA Responsive Dystonia (DRD) I was 27 years old. It mimics juvenile Parkinson's disease almost identically. Many neurologists are not familiar with DRD and so often times people with DRD often get misdiagnosed with having parkinson's disease. My doctor is a movement disorder MD specialist and Parkinson's expert. She diagnosed me with DRD. I take 3 half pills of sinemet each day. I got married when I was 33, and have 2 young boys now. DRD is very Similar to Parkinson's but has a different prognosis. Ask your doctor about DRD, and have them do thorough tests to rule it out. It's worth a shot! If you have questions about DRD, go check out our Facebook group called 'Dopa Responsive Dystonia'.

Angela, Apr 10, 2012

reply

I was diagnosed with DOPA Responsive Dystonia (DRD) at aged 27. It is VERY similar to parkinson's disease, almost identical, but DRD is not considered progressive. I was so fortunate to have found my doctor. She is a movement disorder specialist and Parkinson's expert. She diagnosed me with DRD, and she explained to me that DRD is often misdiagnosed as being Juvenile Parkinson's disease because many neurologists are unaware of DRD. Anyway, I share many of the same symptoms as you. I take 3 sinemet pills a day; which help with my balance and limping problems. I have DRD; DRD does not have me. Some days my balance is worse than other days (depends of my hormones, pms, level of sleep, stress, etc.) But for the most part, I don't let it stop me. I got married at 33 years old, and I have 2 young boys (aged 3 and 1). Many of my fellow DRD peers took their medication during their pregnancy with no problems. Since DRD looks so much like PD, it maybe worth talking to your doctor about. just ask them to test you for DRD to rule it out. It's worth a shot! If your neurologist has never heard of DRD, then find a movement disorder specialists who would know how to test for it. I don't visit your PD website frequently, so if you have more questions on DRD, you can find me on Facebook in the group called "Dopa Responsive Dystonia".

Angela, Apr 10, 2012

reply

Hi. I was diagnosed with DOPA Responsive Dystonia (DRD) at the age of 27. It mimics Parkinson's disease almost identically, except it is not considered progressive. I was so lucky to have found my neurologist doctor. She is a movement disorder specialist and Parkinson's expert. She told me that most neurologists are unaware of DRD and often times misdiagnose people with having young-onset PD. I have DRD, but DRD does not have me. I take 3 sinemet each day which helps with my balance problems, limping and tripping over imaginary rocks. I got married 4 years ago, and have to precious boys aged 1 and 3. It might be worth asking your doctor to see if they can test you for DRD to rule it out. It's worth a shot! Don't be surprised if your doctor is unfamiliar with DRD. If that's the case, find a movement disorder neurologist who has heard of DRD and knows what to look for. Also, there is a facebook group called 'Dopa Responsive Dystonia' if you have questions for other people with DRD. Whatever movement disorder you have (Either PD or DRD), keep on keepin' on! :) Hope this helps!

Angela Pogorzelski, Apr 10, 2012

reply

I was diagnosed with PD over a yr ago at 35. It started in my leg, it just felt heavy, and when my l arm started to posture i got nervous. I did PT as long as I could, afraid to take medicine, when i finally met a great neurologist! It makes a world of difference for me. I am a single mom of 2 ages 10 and 7. It is not easy but my children are awesome! I am taking it day by day and would be open to any conversation with another mom w/ PD. all of your stories are inspirational and I can only hope mine will be too.

Deb, May 9, 2012

reply

Hi im 39 with 4 young kids and was diagnosed yesterday with PD.Ive been getting symptoms for over 2 years and had MRIs and seen doctors with no joy.Until yesterday i went and saw a neuroligist and he diagnosed me straight away.Im now on medication and hopefully it will ease things a little.I thought only older people got PD but i see now from reading your stories that i was wrong.Good luck to you all.Its nice to read your stories and not feel alone.

Tania, Jun 15, 2012

reply

Poalo,

Please contact me via email as I would like to know more about your experience with pregnancy while having parkinson's.

Thanks
tydillon@fidmail.com

Alyce, Jul 24, 2012

reply

I am so proud of you. You inspired me in so many ways.
Thank you

Sedie, Aug 24, 2012

reply

My mother was finally diagnosed with PD at the age of 24. At that time (late 40s and early 50s) it was just not a consideration. Her family doc thought her tremors were due to her thyroid gland, so they removed it right after I was born.of course, it wasn't helpful. She went on to have brain surgery in the 60s at Vanderbilt which helped some and then in 1992, she had a palidotomy in NYC which helped her balance. Her sister, by the way, was diagnosed with PD at age 28. She is now 80 and still lives independently : ). My point is this: my mom birthed and raised 3 healthy children essentially as a single parent. She did have help with her household. My aunt birthed and raised 4 healthy children with domestic help. But most importantly, when my mom died in her 70s HER PASSPORT WAS STAMPED FROM COUNTRIES ALL OVER THE WORLD! : ) She also served as President of Tennessee Valley PD support group for several years. Have heart and remember Sarah Mitchell. She fell a million times, but got up a million and one times. I hope this helps calm a worried soul.

Jane, a firstborn, Nov 20, 2012

reply

My son is fifteen years old and was diagnosed with Parkinson's Disease last year. We have been feeling so alone because I have not been able to find others who are as young as him with the disease. Thank you so much for your article. I am going to share this with him. I wish I could find a support group of other young people who have this disease.

Shannon , Jan 25, 2013

reply

I am 16 and was diagnoised with parkingsons last year. It's really scary to have something like tht happen to u in ur life. Make sure ur son is okay. It's hard in school. Keep his head up and keep ur head up also. Stay strong and be safe. It's hard to stay strong about ur future when u wake up in the morning

Unknown, Jul 19, 2013

I honestly started experiencing symptoms of Parkinson's at age fourteen.

I remember it was sometime in late February or early March of 2004 when I was changing the channel with the remote and noticed my index finger being "pulled" in a shaking motion fom side to side as though someone else was controlling it. Within a few months my entire right hand was tremoring badly which I hid by wearing oversized "Marc Ecko" hoodies that had long sleaves so I could hide my hands. I told no one and didn't even go to the doctor in fear that they would notice my symptoms and give me a diagnosis of P.D (I kind of already knew I had the disorder).

As time went on the progression honestly stalled for a while... from 2005-2006 it was stagnated a bit though I still had the tremor, cramping and shaking in my feet it was nothing very "severe" (like I expected) and I could still hide it. It followed an unusual pattern, sort of a slower progression.

I didn't get an actual diagnosis till the summer of 2007 after finally seeing a neurologist. I think I feared the official "PD label" more than anything as I felt it would take over my entire sense of self and define me.

However things are okay now nine years later, having the disease doesn't bother me like it used to or make me want to crawl out of my skin. I've just gotten used to it and it's hadly a big deal (compared to how I originally perceived it). I just accepted things as they are and take everything as it comes and take the routine meds, eat healthy ect and don't worry to the degree like I used to about all of this.

Andrea, Feb 22, 2013

reply

I am 44yrs old and have had pd for 7yrs now I live on my own but have been told there is a young persons meetigs for new fiends I live in the derby area also not to far from chesterfield can any one help

sean, Feb 24, 2013

reply

Dear Paola,

Is there any possibility for me to contact you via email to ask a few questions about your experience with PD? I'm a neuroscience student at University and am doing a literature search for alternative treatments for PD and would love to get your insight.

Please feel free to contact me at fkirdar08@gmail.com if you are willing to answer a couple questions.

Thanks!

Best,
Faisal

Faisal, Apr 2, 2013

reply

Thank you Paola for your story I was diagnosed at 16 and felt the same way that no one else my age has this. You are an inspiration!

Morgan Campbell, Apr 10, 2013

reply

Please contact me if you all have any experience with DRD.
Alyce
tydillon@fimail.com

DRD, Apr 19, 2013

reply

Please join us´╗┐ at Facebook - Juvenile Parkinson Group

Claudia Streva, May 5, 2013

reply

My friend has had Juvenile Parkinson's since she was 8 years old. She's now 41. It's 3:41am as I type this and I've just come back from helping her as she's started a new medicine called Apomorphine. Today is her second day on it and she's been over tired due to being in hospital sorting out training etc, injecting and drawing up the meds.

I've seen her struggles and really feel for anyone facing this illness. We've been friends since we were 10 years old. Sometimes I feel that I know more about her illness than the neurosurgeon does. It's frustrating that they really don't know much about it as it is so rare. Especially in our country - New Zealand.

Keep fighting it, enjoy your child and all the new wonder that they bring. All the best.

Kaz, May 21, 2013

reply

Your story is really inspiring! I'm a 15 year old girl. I think I have PD, but I don't want to go to the doctor if its nothing. My hands are constantly shaking, some days are worse than others. It'll get so bad that my friends will come up to me and ask me if I'm okay. My grandfather had PD too. Do you think I should go get it checked out?

Brooke, Jun 20, 2013

reply

My nephew has been diagnosed with parkinson and he is aged 19. We already have parkinson patient at home, my father who is now 83 and suffering for the last six years. I was wondering how this is going to affect a young college going boy, when I happened to go through your story, and it has definitely lifted my spirits to look forward to speaking to, and guiding the boy with lot more confidence than i did have before.
good luck and regards

ramesh

K s Ramesh , Jul 12, 2013

reply

I Paola, I chose your story for the name, and it's incredible we have so many things in common,not only the name.
I would like to know how are you now, I have a baby to,he's 2, I would like to have a second, but honestly I'm afraid...
I'm 35 and I have Parkinson's disease from 19, I'm Italian, but I live in Brasil, are three years that I don't use any therapy,before and after pregnancy,and I don't see many differences, but I often tired, and I walk very bad....
I wish all the best!
Buona fortuna
Paola

Paola, Aug 26, 2013

reply

Hi Paola
Sorry for the late reply . Actually I had been very busy . I had my second baby last February . My older son is 3 now !! I am s fulk time wife, mom and I love my life !! My 3 boys are the reasons that keep me strong . I will like to share with you my experience during my second pregnancy .
Pl lease feel free to write email me paoceli@hotmail.com

Dont be afraid it is difficult but not impossible

Paola, Sep 23, 2013

Hi, Im 24 & have been suffering from a lot of PD symptoms. I have been feeling so alone & scared but after reading this I have hope & do not feel alone. Thank you so much, this has really helped me. x

Amanda , Sep 3, 2013

reply

hey there Paola
I am an 20 year old Indian male
my grandpa hand PD and he passed away this new year
i was diagnosed with JPD 8 months back
your story is giving me courage when i read it
I'm sure i will survive just like you :)

Aravind, Feb 1, 2014

reply

Hi everyone, sorry I haven't replied your messages. I am so happy to know that my story was an inspiration to everyone liked me. I don't know you but I live everyday the same battle you are Living. I just want to say that everything is possible if we keep fighting. I am a mother of two beautiful boys. My younger son just turned one year old on February. MY Parkinson has evolved significantly after my last c sectioN. I am very controlled with medications, I have to say I have more good days than bad ones.

Keep fighting .. and never stop believing that soon the cure or at least more effective treatments will help us to live the quality of life we all deserve

PLEASE feel free to contact me at paoceli@hotmail.com

paola, Mar 30, 2014

reply

Paola, I've been so terrified that I will not be able to have children, and reading this just calmed me down so much. Thank you for sharing your story. I imagine that any pregnancy I'm lucky enough to have and certainly raising a child will be difficult, but I also know it will be worth it. Thank you for giving me hope.

Ashley, Apr 3, 2014

reply

Our grandson also started with parkinson's at age 12 then two years of seeing different doctors his parents learned it was Parkinson's. Chris is now 27 living at home and finally got disability last year. He has gone through a lots as he has also Wry's neck problems also due to Parkinson's. His grandfather also developed it about the same time Chris did and is no longer alive. For the younger ones I pray every night that you stay strong form support group. Personally we live in a retired community so I see many people with it. I tell our Chris who lives in Michigan, to keep a good attitude, pray and help others who many also have problems but of a different nature. In our community we do have a research center working on things for Parkinson's and dementia and it makes me very good to donate money to them knowing better drugs and treatment will be given to all of you soon.

Diana, May 19, 2014

reply

I'm 12 years old and have been having a lot of trembling in my hands i cant sleep at night. It started when i had an argument with my mom i got really mad and my hands started trembling .at night that day i used my phone all day and woke up at like 3 in the after noon and my hands were really bothering me so i ignored it .a few day later it still was happening so i told my grandma and she told my mom and my mom said it was stress because i have bipolar and adhd and cuz of all the fight we had and so we let it there i told her that i haven't drank water in like a week so i just went with that . Today i went with my aunts house and i told her and she told me to research it so i did and i found this article and when i read it i started crying and started Shannon my hands alot and minutes before i want so she told me I've always been like that when i see something i think i have our like a weak mind and i remember a about 2 weeks ago i saw a movie called love and other drugs and Googled it and saw the symptoms and the next day we had a fight i dont know if its just in my mind or is pd but please im to young to have pd .....help me
"

valerie, Jun 12, 2014

reply

Participate in the discussion and share your insights

In reply to:

cancel