So far the most challenging thing about my (Young Onset) Parkinson's is finding people my age who are going through similar (beginning) issues. With every support group, conference, or event I go to, I am the only young (under 70) person there 😕 and there are so many differences. Including the meds I'm on. I have so many questions...
Young Onset Parkinson's : So far the most... - Cure Parkinson's
Young Onset Parkinson's
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beccabennett
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I read your bio. Attributing tremors to stress is commonplace – I did that. An MRI will not detect Parkinson's. It is a pity how little many general practitioners seem to know about Parkinson's.
I do not agree with prescribing a dopamine agonist (Pramipexole) as initial treatment due to adverse effects such as impulse control disorder, which can manifest at any time. The idea that levodopa usage can accelerate the arrival of dyskinesias has been shown to be a misconception.
You should ask your questions. There are many people here with YOPD and others with PD who can answer them.
Im 48 yo.... Not that young , but enough to bestemmiare as we say in italian. Do not try to translate It. Don t be scared. There Is Hope and no One route Is like an other. Excercise Is your Number 1 ally. Sorry for my english im using a mobile ..... And im italian....if in not wrong you have Just been diagnosed . For me the First 4 months period has been the worst . So i really understand you . You Will eventually overcome It and feel Better .
You're younger than me 😊 I'm 50.
I go to the gym 5x a week and hike on the weekends. I'm eating MUCH healthier now. I've lost 22 pounds since my diagnosis. (No more fast food!). I want to start B1 and L thiemene cause I've heard it really helps. I already take a daily vitamin.
I totally get what you’re saying. I’m still looking for my twin out there or a good bunch of pen pals to Connect with.
I’m older than you (mid 50s) but find myself a real minority. In my support group there are about 25 people - only two are women,and I am the youngest of the group. Most are 70ish. All lovely people, but we are in different places in our lives. I find it easier to compare notes with people that were diagnosed around the same time as me and also are close to the age to me and if possible, the same sex. Also, if anyone is reading this and fits this description so far, if you are PIGD subtype that’s even more of a connection for me!
I totally get that! I just want someone under 70, that I have (PD) things in common with to talk about.
Where do you live ?? In my country there are some YOPD-groups.......
As said before :
exercise (mobility and strength),
food (difficult, so much opinions : but one general rule : try to avoid as much as possible cow milk (yes, some older (80+) people willl say that they used to drink a lot of milk before : but the milk 60, 70 years ago wasn't the same as the milk today !!!!!)), and
try mucuna.
get rid of all your amalgam dental fillings (but you have to find a experienced dentist).
(I know 3 really good ones, but in Germany.....)
and time management (I struggle with that) : always try to plan the double of time for things : when something unexpected, you don't get (so much) stretched ,......and when nothing unexpected you can do some breathing exercises, or check your posts at HU, or look at the nice girls (or boys) 
(I don't know your gender)
And read HU !!! That most of the time my morning routine.........
Thank you! I'm in Phoenix Arizona USA 😊
Hi I am Charles I am 57 and have had pd for about 10 years
i cant believe you are wanting some one under 70 years to talk to, a lot of us here might have had pd for 20 years or more .we are all in the same boat its sink or swim most of us are here to help other people we dont care about age im sure you read every thing thats on healthunlocked age means nothing when your sick.regards john
It's really hard to discuss medication (that was prescribed to me because of my "early-onset" age) when I'm not on the same medication as those older with PD. And from all that I've read early onset PD can have a totally different outcome and quality of life being that it started soon. Everything about my experience is different because it's starting at a much earlier age. Including what I can and can't do now. The older PD group that I talk with is affected by other issues going on at their older age (most non PD related). Nothing I can relate to. To understand what to prepare for, it only makes sense to talk to someone my age who's going through the same things I'm going through.
Thank you for your comment though.
Hi there, I’m getting close to 56 and was diagnosed at 49. I work full time and I am an ultra runner. I am on cd/ld , Azilect and Comtan . Botox shots on my left foot and leg for dystonia . I frequent a Young Onset support group with men and women , some younger and some my age and a couple that are older. The high dose B1 has been amazing for people and worth trying . Sadly it didn’t work for me . I’m near Sacramento CA . Karen
See my reply to beccabennett
Do you live in US
Yes, Phoenix Arizona
Wowwww!!! All my family lives down there, I am flying solo here 🙁 (Chicago) but my life revolves around my three kids, and my four grandkids. I was there last July, my mom passed away 😢😢 they all want me to move down there, but It’s hard leaving my kiddos 👶 here.
So sorry for your loss. It would be very hard to leave the kids. I can imagine.
I visited Chicago, a few years back, and had a AMAZING time. SUCH a cool city!
What is PIGD subtype?
Yes, I wouldn't mind some additional communication. I also attend a monthly support group but most are 70+ I left the meeting early on Saturday because it jut got too darn depressing. Mostly now I've been trying different drug/supplement combinations and have finally hit upon one that suits me, at least for the time being, and takes away almost all symptoms...
I hope that you find some great advice here and support as well . You can learn more than your doctors know on this site !!
I hear ya on that! 😉
I was dx at 35 I am 48 now, I totally know how you feel, I was in the same situation I wanted to find young people to chat with, exchange ideas, i went to a support group, but the youngest was 76 nothing wrong with that, but it seemed like they didn’t wanted to started friendship. I felt very lonely 😔 so you are not alone,
Welcome 🙏🏽
Thank you!!!
Well, I look forward to sharing our experiences anytime!
beccabennett, if you're open to it , I also wouldn't mind some additional communication.
Mostly now I've been trying different drug/supplement combinations and have finally hit upon one that suits me, at least for the time being, and takes away almost all symptoms. I'm constantly searching and looking for new avenues for postponement or cure for PD. Thank you.
YOPD as well. Two teens, working parent. Dx at 45 two years ago. I never went to a support group because I felt the same way as you. Stayed with my family and friends and I went to a therapy. Also built up my support group at work. All of the above worked for me well. Word of caution about Mirapex. It didn’t functionally help me, but had negative side effects that were unexpected for me and the family.
There’s quite a bit of us in this forum. Hang in there.
I will! Glad I found this group.
hi, i know the feeling diagnosed at 34 im now 37 currently on stalevo, pramipex and rasagaline when i remember to take the last two. still working as a full time joiner, taking it 1 day at a time. also on the thiamine which i found very effective.
How much of the thiamine do you take? And do you gradually increase it overtime? Can it be bought where I buy my regular supplements? Sorry, so new to all this!
Hi, I’m 44 , mother of three , and diagnosed with juvenile Parkinson disease ten years ago. I’m on sinemet 25/100 mg.,Amantadine 100 mg, and Mirapex 3 mg.
You’re not alone, you can email me if you have questions,
Thank you so much! I'm so glad I found this group that I can relate to.
Hi llonagarsa, it looks like we’re on the same meds, I am on C/L (sinemet) 1 3x day mirapex 0.25 1 3x day, yesterday my neurologist added amantadine 100 1 3x day, due to dyskinesia, can i ask how’s amantadine working out for you? since i’ve heard too many negatives about it, I know we’re all different and some meds works well in others, I’m afraid to add another medication to my list. Thanks
Hi, nice to hear from you, I’m on Amantadine since I was diagnose, and it has helped me with dyskinesia , specially after the second dose of the day, so I have relax afternoons, I can draw, which in the mornings is really hard, cause Amantadine haven’t reach it’s peak, its working for me.
Hope it helps
Thank you !!!
48 at time of diagnosis,, thats 3.5 yrs ago, tremor dom., female. 2 kids in college. Happy to give u any info u need.
Wow! There are a lot of us after all. I'm 47, married, have 2 teenage daughters, diagnosed at 43. I'm taking 1 c/l a day, 1/2 tsp of mucuna pruriens 3-4 x a day, and 1 amantadine 2 x a day. I've never been to a PD support group because aren't people my age. I have some acquaintances who go to a "Chronic Illness" support group, but I don't want to be in a "sick girls' club.'
The two things that have helped me the most are diet (the more veggies, the better, no dairy, very limited sugar), and exercise (which makes me feel so much better).
As soon as I was diagnosed, I joined a gym, and changed my diet drastically. I go to the gym now at least five times a week and hike on the weekends. I cut fast food out completely, and now eat lots of veggies and loaded salads. I add protein like chicken and fish and really watch my sugar which was never really a problem before. Working out really helps me. Right now more mentally than physically I think. I also bought a bike and ride as often as I can.
Did your doctor tell you to take your meds an hour before eating any protein, because the protein won't allow your meds to fully get where it needs to go to relieve your symptoms.
Also if you miss taking your meds at a certain time & you eat protein you have to wait about 2 hours before taking your meds again.
My DX was at 26. Now at 28. I know the feeling. It gets easier with time to accept the fact your young and have PD. Good luck and reach out the the community with questions. I've never met anyone in my area that is even close to my age but the support groups help. Exercise, exercise, exercise... That helps too.
I’m turning 48 soon, diagnosed at 45. Hard to believe it’s already been three years! Definitely I feel different day to day. I guess all any of us can do is the best we can do at any given moment, keep faith that it’s OK even if it’s difficult, support and love the people around us the best we can. Best wishes! Julie
53 yr old mom symptoms began at 46 diagnosed a few years later. Great site, supportive, lots of info!
I guess my biggest question, being so recently diagnosed (2 mo) is, the progression. I think that's what I'm most concerned about. I know everyone is different, I hear that all the time, but, I feel I'm doing okay. As long as I don't progress drastically I think I can handle this. But I also don't want to be naive about the whole situation either. My tremors started about two and a half years ago. They've moved from my right leg to my right arm, (complete right side now) but I don't think they have gotten "worse" tremor wise. I'm trying to be hopeful but I'm not oblivious. I don't seem to notice the meds I'm on helping at all. But, for some reason I'm not relying on them. I'm relying on myself to do whatever I can do to fight this. I get my strength in myself.
The feeling of acceptance will come and go too. There are times when things are going ok and I feel like "I've got this" and other times where things are overwhelming. Just know there are a lot of options out there to help. I recently just had DBS done and was shocked at the difference it made for me. Like you already know everyone is different but between meds, lifestyle changes, herbal supplements and surgery there are plenty of things to try. The main things for me have been find a good doctor, communicate well with them (when things and good or bad), try to find a routine that works well for you and stick with it, communicate with family and close friends, and don't be frustrated when they don't understand. It took my family a long time to grasp what the full effects of PD were on me. As far as progression personally this was difficult for me as well. But as I learned more I understood it really doesn't matter just enjoy the moments you have now and don't worry too much about what's outside your control.
My pd presented the same way and progressed the same way; started in the right foot/leg then went to my hand and right arm. I am 53. I think about what the future holds. I still work & wanted to work into I could retire, which would have been at age 60. Now I’m not sure of anything. I too have changed my diet to Keto, excercise & have lost 37 pounds. My symptoms are pretty mild but people do notice. I’m getting over worrying about that. My biggest worry is the future & and the burden that I may put on my husband. He is very supportive and I feel it’s unfair to him too but then I think We are all in a battle and we have to fight to keep ourselves as healthy & mobile as we can. Maybe a cure will be in our future or at least something to stop this disease from progressing. I wish you well. I love this forum; you’ve come to the right place!
I was diagnosed at 49, I'm 51 now but I totally get what you're saying. People say I look like I'm in my 30's and I want to act that young, but my body tells me otherwise. My symptoms aren't so prominent that people can see them, eventhough I feel them constantly (leg & feet tremors, all over body pain, body movements, slight hand tremors), I just want to scream out what's going on with me. Anyways we're all here for each other, doing this crazy disease together.
Yeah, I have times where the anxiety controls my tremors. It can be overwhelming when trying to deal with everyday life. Something as simple as waiting in line to purchase an item... I find my tremors get worse because I get anxious (about nothing). I worry too much about what others are thinking. Mainly, whether I'm nervous for the wrong reasons. I don't want people to think I'm nervous because I'm doing something wrong 
My husband really gets on me about this. He says "Who cares what others are thinking! Screw them!!" "You be You!"
I too do the same thing . I have anxiety about controlling my tremors and other symptoms that it makes them worse. My husband tells me the same thing, “screw everyone else “ , you be you ! And I try . I’m always here to share as well. Karen
Hi Beccabennett
I have reduced my symptoms to almost 0 with some modifications in my lifestyle. Feel free to ask any questions you may have.I am 50 y/o.
Kia
Hi Kia
Id be very interested if you don't mind sharing. I'm 62 in Longmont, CO and was diagnosed just before Thanksgiving (lovely) of 2018. I'm currently on Requip .5mg 3x a day with mild left hand/foot tremors. Mainly at night and when stressed. I take so many supplements, I think ill sound like a castanet if I walk too fast! 
Becca, I hear ya on all counts! This is a good site and we're all here for each other! paul
Hi Blazing
I am sharing my personal experience in keeping the PD at bay as below.
- reduced refined sugar and gluten to Zero - Intermittent Fasting - Taking HDT - Taking a good amount of GOOD Magnesium - Vitamin D3/K2 - Mannitol powder - Cycling - Fast walk - Yoga - Meditation - bulletproof coffee - Ghee- Nuts - Leafy green vegetables - Apple cider vinegar
Hope these help.
Kia
Thank you, Kia! Continued success to you!!
Hi Kia
what do you consider good magnesium? I keep getting the wrong kind. I’ve got magnesium Glycinate which someone recommended and then I was advised to buy magnesium sulfate. Is that the right one?
I also take magnesium citrate cause I’m constipated all the time!😕
Hi Oceanflow
In my experience a well absorbed magnesium and those cross the BBB are the good ones. Are you taking B1 vitamin?
Hi Kia! Yes - I’m trying 150 mg Solgars B1 per day. Do you have any recommendation on the type/brand of magnesium?
I have been taking , MagTech from Natural Stacks ( a serving before bedtime). Aximagnesio 150mg ( mixture of different magnesium manufacturing in Italy) with 140mg of Magnesium Biglycinate with my morning B1 intake.I give MagTech 10 out of 10 for better cognition and its relaxation effects.
I feel your pain I’m 53 and was dx a year ago in April..
I'm 50, noticed symptoms of tremor in 2014. I'm keeping most symptoms at bay with Mucuna pruriens, 4 grams of B1 and magnesium, similar to Kia I have almost cut out all sugar and eat mostly vegetarian.
I've pretty much cut out 100% of sugar. I just need to get on some good supplements in addition to my normal one. I try to eat as much vegetarian items as possible. Mostly loaded up salads. But I love fish and chicken too.
I exercise more now than I ever have. At least five times a week. And my husband and I hike on the weekends. I also bought a bike which I'm excited about!
Welcome, feel free to ask, glad to be of help.
I was diagnosed with early onset Parkinson's around 64. Extremely mild, thank heavens. Yes, exercise is very important. Try getting involved in ROCK STEADY BOXING. It is a program just for Parkinson patients. I have been going for 4 months and can't believe how my strength, mobility, and balance has improved. Look it up and find a gym by you that offers it.. it includes warm up, boxing and stretching. It's awesome. Best exercise class i have ever taken
Good luck.
Sounds fun! There is a boxing class at the neurological hospital I go to. I'm going to sign up as soon as I get a spare moment!
Thanks Emily...I found a location nearby but am hesitant to go for fear of 'bringing me down' further emotionally. But the brandykinesia on my left arm is so frustrating!!!!
I’m 44. I was diagnosed last year. I have rigidity and slowness in my right side. Without meds, it prevents me from using my right hand to write, type, and cook.
I have an 8-year old daughter, who has always had an unnatural fear of me dying. 🤨 Other than that, she’s a very happy girl, really. But still, I had so much shock, depression, fear when I was first diagnosed. And sad for my loved ones, including my parents— who will take care of them? It took me about 6 months to feel more normal. My husband has been great.
Like you, I am most concerned about the progression. But who can know? I am a scientist and have significant job responsibilities. I figure that I have at least 5 more great career years but maybe 10 or more. I was recently promoted. That’s given me something else to focus on, other than myself, which has been good.
I just started on ropinirole — I had been using C/L, which was effective. However, I do not agree that the research is clear that C/L does not cause dyskinesia in patients who start before 50. There are quite a few unknowns, unfortunately, and very few studies examine patients for >20 years.
Trying ropinirole is a risk I am taking. It does have potentially significant side effects (which may effect up to 20%), which we are monitoring. It’s not very effective so far. I’m on 3 mg per day. I was really 50/50 on switching from C/L to ropinirole. I’m not sure if I am willing to increase my ropinirole dose much higher. There have been some people on this forum who experienced the devastating side effects.
I’m interested in high dose thiamine but I’m waiting for a few more years research results from this community.
Anyway, looks like you found a bunch of us who are young-ish
Thank you for your info! Very helpful 😊
Hi beccabebnett. I was officially diagnosed last year at 38 but was displaying symptoms for many years before that. I have two young kids, a wife, and a career. For many years I struggled as my performance in literally everything deteriorated. I was very confused, depressed, and in denial. Now that I know what is going on I've learned how to better manage the disease. Having what are supposed to be the prime years of your life essentially stolen still stings, though. I may understand your struggle pretty well I'd you want to talk about it.
pdvision2020.com YOPD Conference Leicester April 2020
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