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ProgressiveB

How many other YOPD people are out there?

80 posts in this topic

Hi. I'm 29, diagnosed at 28. I live in Australia and I'm feeling pretty disheartened at the moment by the lack of...focus? Awareness? Something for YOPDs. All of the support, exercise and recreational groups across my state meet in the middle of weekdays, and I still work full time. I managed to get to a one-off PD dance workshop on a Saturday morning, and the PD Australia rep assumed I worked there. Kept asking me where things were, even after I explained I was there for the workshop, then when she was handing out flyers and info sheets after the class she walked past me, saying surely I wouldn't be interested. That was my trial day to see how the organisation ran and I felt very, very overlooked. And I haven't reached out to them since. Feeling very alone.

 

Dear Panda,       I was diagnosed in 1987 at 34. I went to see a neurologist because I had a tremor in my left hand. He understood  right  away what the problem was, and did not dismiss the diagnosis of PD because of my young age, as I gather it happens so often for young onsets. There was no internet at the time  and I relied entirely on scientific literature for information. I can share your feelings of isolation and loneliness, it is hard to come to terms with such a diagnosis.  I for one avoided meetings of persons with Parkinson’s as I felt I did not have much to share yet and, as I used to say, I was not ready for a “travel into the future”. I preferred to enjoy the “honeymoon” period, where Sinemet covered my symptoms more or less entirely. To me Internet is an entirely different experience as you are able to choose if you want to get information on a specific subject and can decide to step out whenever you feel the information is too much.  Forums like those provided here are a blessing as you are able to share your concerns with “PD siblings” and tie sometimes privileged links with some.

I do not attend any local Parkinson’s meetings. I have my personal PD time on the Internet and otherwise I do not let Parkinson’s invade my social life.  I speak openly about my condition and was never in denial (now it would be difficult!) but I don’t want to be defined as a Parkinsonian but as an individual, with my own areas of interest, my culture, my strengths and weaknesses, who happens to have Parkinson’s.

Don’t miss Ak  the doctor forum.  Dr. Okun is an expert in Parkinson’s disease and is very dedicated to the Parkinsonian’s community and he is always available to answer questions we may have,  even on Christmas day!

Hang in there,

Mireille

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Drummer girl , how are your symptoms? 

 

My sx are leg tremors. Started unilateral, between 7-8 years after dx, went bi-lateral. 

Sx respond very well to levodopa. No tremor with meds.

 

Hope this helps...

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Hi from Argentina! First of all, I’m sorry for my bad English. I think there is no place like this forum in my country or in Spanish language. So, here I am.

 

I am 44 years old, divorced, living happily with my girlfriend right now. I have a beautiful daughter, Valentina, she is 14 years old, she loves horses, is a very good horse rider.

 

I was diagnosed PD in august 18, 2015, by a neurologist, after a traumatologist (bones doctor) send me to. I went to the traumatologist because I noticed some dificult to move my right hand fingers. Also I experienced micrography. The neurologist ask me to write with a pen in a piece of paper, watch me walk, test my movements, and finished with a magnetic resonance study (I don´t know in English; in Spanish is RMN)

 

Few days later, august 18, he said to me, “Martín es Parkinson” (Martin, it’s Parkinson’s disease). Immediately I started with the rasigilin.

 

A month later I went to Buenos Aires city (400 kilometers, about 250 miles from my city, Mar del Plata) to another appointment with another specialist in a high quality medical center. He confirmed the diagnostic and the treatment with rasigilin. He said I am in an early stage of the PD, and he said it’s hard but I must be optimistic because we are in XXI century and the science advances, and so on. And he also recomends me, in an emphatic way, to dance, tango lessons for example, because the coordination the dance demands.

 

So my girlfriend and I are taking tango lessons, and I am doing Pilates 2 o 3 times a week as well.

 

So, here I am. I hope my elementary English was fine ...

 

Nowadays I’m well in general, but so tired and with some apathy. And I don’t know why. The doctors said it can be because of PD, or because a side effect of the rasigilin, or because a temporary side effect of the antidepressive I take, or because a depression. And also I noticed some kind of slow thinking, some kind of mental fatigue, wich cause me some problems in my job. This symptoms are really hard to live with. I really really expect to be a temporary thing.

 

I expect you can understand me. I regret to was a poor English student at my high school classes.

 

Happy 2016 to all of you. God bless you all.

Edited by mfunesb

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Martin, You english is very good. I was able to understand your story. Very nice to meet you and welcome to the forum. 

 

You will find that apathy really never goes away. I found the rasagiline helped me a lot with this. Starting on Carbidopa/levodopa has also helped me gain more motivation. 

 

If you have any questions feel free to ask

 

Blessings

Adam

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I was Dx'd at 43, just before my 44th birthday last year in May (2015).  I must have had significant symptoms since 39.  Finally got diagnosed after being hospitalized because I pushed myself (to keep my job and support my family) until I couldn't walk.  Now, I am catching up on life and able to be more of a father to my children.  So, I feel like I have been given a second chance and a great blessing. 

 

The great thing is that there are so many options to help and make things "better". I also like getting involved in research when I can, to help improve things for everyone else also.  It is like having a  useful weapon in the fight.

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Thank you Adam, Michael. Tell about my English to my ex English teacher, Ms. Laura  :-P

 

By the moment the apathy and a little tremor in my right side is the only thing that disturbs me. And sometimes I ask myself about the years to come, but I anwser to myself that God only knows about that, so I must try to be positive and a good father and a good man, don't you agree?

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Welcome, Panda! Perhaps you should reach out to the PD Australia group; maybe you could be instrumental in forming a YOPD group. There must be others not too far from you that feel the same as you. Give it a shot & see what happens. 

 

Welcome, Martin! I don't care what your English teacher would say, your English is better than my Spanish will ever be. 

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Welcome, Panda! Perhaps you should reach out to the PD Australia group; maybe you could be instrumental in forming a YOPD group. There must be others not too far from you that feel the same as you. Give it a shot & see what happens. 

 

Welcome, Martin! I don't care what your English teacher would say, your English is better than my Spanish will ever be. 

I do keep toying with the idea Secret Squirrel, who knows...

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Diagnosed last September at 53 but probably had it last 10 plus. So is there a not young but not old PD club??

Edited by djack1012

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It's great to see all of these "young whipper snappers" lol. Kind of feels that way sometimes. At 39 it's hard to relate to the older people. Yeah we all deal with this fun thing but at different points in the life cycle. Like several of you I tried to go to a local soppurt group. No offense to anyone but I felt like I was visiting my grandparents. Can't seem to find any young groups so here I am. I'll continue my search for a physical group (I think meeting with people is really healthy for the soul ) until I find one I'm really enjoying everyone here.

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I'm another Martin** ...also 44 now and, funny enough, dx last Aug 2015 with PD at 43. Been lurking on this forum for months, figured it's about time to post and join in the fun. Symptoms are mild for now. Biggest challenge are the moments of doubt and dread about the future but attitude is everything. Trying to stay positive. eat healthy, exercise, and keeping an open mind. Conventional medicine has a long way to go and doesn't know everything. We can learn a lot from each other!

 

 

 

** see mfunesb earlier post :wink:

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I meet many elderly people with PD but never any with YOPD. I am 45 years old. I was diagnosed in Jan 2007. I feel as though I am "the last of the Mohicans". Anyone else out there with YOPD? Hello?

Hi,

 

I was diagnosed in 2005, I was 44 working in The Middle East. In 2006 I returned to England to see a Neurology Professor, he could not confirm Parkinson's from his examination and so, he arranged a Dat Scan which confirmed that I do have Parkinson's. However, in 2013 I met with another Neurology Professor in Singapore, he rejected the Dat Scan findings and said that I did not have the disease but, he didn't say what I had. Again I returned to England and the Neurologist told me that I have YOPD!

 

I have only met 3-4 other Parkinson's victims, all were older than myself. Now it seems that I am experiencing "on - off" symptoms and do not know what to do about it. I am living in Indonesia where there are no support groups.

 

cookies

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Hey young gals and guys !

 

There are quite a number of older PWP here who once were young PWP with whom you can share your concerns - as a matter of fact we remain young onset for the rest of our lives.  The question is not a matter of age but of understanding the problems facing an age group.  And those of us who traveled the same road at the same age you are doing now do understand what you are going through.  For instance, I was diagnosed at 34, I am now 63, but I can share the feelings of a younger PWP who is considering having a baby, as I was in the same situation almost 30 years ago.  At the time, there was no internet and I personally stayed away from Parkinson’s meetings as I was not ready for a “travel into the future” as I used to say. But you have here the best place to voice any concerns you may have about life with PD, be it on the work place, in your private life or as regards your treatment.  A live meeting of PWP would not make it easier to say what you have to say and would not necessarily more fruitful.  Stay positive, just think about what you can gain here in terms of knowledge and human experience (good or bad!) and rest assured that being around older parkies will not have any direct impact on your disease progression (LOL). Stay with us, we all enjoy your company.

 

mireille

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Yea, I was diagnosed at 29, I'm 34 now, its tough finding other people my age with PD, my doctor even asked me to speak at a seminar, but I had to work

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I am 44.  I haven't met a "young" one yet that is not in the mid 50s.  Working with a family and trying to get real  involved with PD groups or trials is tough.

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Here's one! I am 45. I have shown signs of low dopamine all my life though we never knew back then that was the cause of the slowness, depression, times I couldn't smile, going psychizophrenic some times etc.

 

In early stages, even now, doctors have a hard time diagnosing. Psychiatrists and neurologists would make me insane (literally) on meds. I would lose everything each time it got so bad I episodes. Parks really affects my mind as much as, or more, than my body.

 

It hurts waking up in one mindset of beliefs and abilities, then suddenly you wonder why you ever felt that way and feel like a different person, hurting emotionally those you love.

 

I gave up on doctors. As it progressed to stage 2, I began to see the symptoms. I again sought helo, and, again, they made me bat-sh-crazy. I gave up on doctors again, got off all the wrong meds, did the research myself (I am Ph.D. scientist) and easily determined the right dosage of Parlodel and Buproprion to live a reasonably healthy life.

 

But, to get stable, was the inevitable unstable times. I lost, again, everything in life, including the most cherished woman I have ever known because, stupid me, trusted another doctor who refused to treat me unless I quit meds cold turkey (pschizophrenia inducing 101).

 

I am stable again. No problem. But, I am tired of losing everything in my life. I am tired of the world turning their back on me believing I ENJOY acting depressed, angry, paranoid, etc. and that is who I am, not something that happens to me when I don't have the right meds.

 

Life goes on though =) People who know me, see that I am a hugely positive person and are trying to help me mend fences. But, at the end of the day, no one can relate to what it is like to suddenly freeze and there you are fully cognizant in the middle of the street as a statue. No one can understand the screaming pain in my feet if dopamine is too low and serotonin too high. No one wants to hear about how today I am dealing with some new feeling I can't describe. Loved ones watch me in moments of absolute suffering and panic, but there is nothing they can do. A week of no sleep, having to cancel plans because sick that day, people just give up. And so forth...

 

So, here I am, reaching out to others who have this disease. Maybe I can be a ray of hope and survival or a friend when someone is in need. Maybe I will have times I need to just share my feelings with someone who gets it.

 

Thank you for having this forum... it really is wonderful to finally not be alone.

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Well, there certainly aren't very many of us, no matter where we go.  I did the math.  50,000 to 60,000 PD cases annually in the US of which 2-4% are YOPD.  (YOPD is evenly split along gender lines, unlike older onset.)  So, the YOPD Class of 2016 will be 1,800 to 2,400 people in the United States.  If you're curious, assuming a population of 300 million, that's only .000004 of a percent.  It took me about a week to figure out how to say that, it's "four one hundred thousandth of a percent.  So, my fellow lovelies, you are truly the rarest of the rarest of the rare.

 

I had occasional severe leg twitches at late 37/early 38.  Didn't progress to mild tremors of my left arm and leg until I was barely 39.  Wasn't diagnosed until two months ago, when I was just 41.  I have some orthopedic shoulder and hip issues which were masking what was also going on. 

 

So, I inadvertently avoided meds until I couldn't stand it any more.  Still trying to work out a sinemet dose that gets me through the day.  I know my dose is purely my dose, but 2 25/100 sinemet 4x daily seems like a lot.  And, I'd like to avoid Dyskinesia for as long as possible.

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I am 45. Diagnosed at 44 on 4/22/2015. Coming up on one year. I have had to "process" this for while. Now at the point where I want to get more actively involved in my local support group etc. Also, looking at exercise programs and so on to get moving and keep this shitty thing at bay for as long as possible. I am currently on the generic form of Stalevo (sp?) which is Carbidoba/Levadopa/Entac - 50-200-200. For the most part it is working great for me. I have, on average, one day a week that the meds don't seem to fully kick in but it just means my right hand and leg have tremors. To this point my most severe symptoms are tremors on my right side (leg and arm/hand) and I have difficulty talking, stuttering and getting stuck on words and so on. 

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Hi all,

 

I am a new bee, 45 y-o female, working mom of two wonderful kids. I have to hold my tears in front of my kids since last Tues.

I am super mom, very active.

Now I am  feeling so  lost and so scared.

Recently informed by my neuro  that I have showed signs of early stage od PD. I will see him again in 2 months after MRI.

I have slight on/off tremor , stiffness on left hand, painful fingers. I feel internal tremor in my  left legs. I don't know what to do now? Please give me any recommendations for me to do to delay the progress.  PinkDaisy

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Hi PinkDaisy-Glad you found us.  First thing to do is BREATH.  I'm familiar with the internal tremors but have not experienced them lately.  One thing about PD is that everyday can be different so do not get upset if a symptom shows up one day because chances are you may not have it the next day.  PD is a slow progression.   Exercise has been shown to help a lot in lessening some of the symptoms.  Start doing some form of exercise as often as possible.  Anything from walking, tai chi, dance, aerobic and core exercises all have their benefits.  Please let us know how we can help and ask any questions you have.  There is a large group of people on here ready to answer your questions and support you.

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Hi Peace

 

Thank you so much Peace for your quick response. Tears are just coming from my eyes while reading your response. Just feeling so scared what symptom would show up next. I have started running on threadmill  daily and working on strengthen exer. on my left arm. I pray ++++ PD is a slow progression. I have two kids, husband and a full time job.  Once again, thank you.

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Hey ck2770.

 

I am 47 and have had YOPD for 15 years.  I am in Grafton, Ohio...I see you are in Lorain...that is the same county...only about a 20 minute drive.  Surprised to see someone here so close to me!

 

Mihai (Michael)

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