Hello (Young Onset PD)


#1
Hello there. My name is Alex. I am 33 years old and I was recetly diagnosed with young onset PD. I am not from UK but from Switzerland, still after browsing the web I find this forum to be the best. And I really need any kind of advice or simply some support right now. I guess I am trying to figure this out somehow. Being diagnosed with PD at 33 is not something anyone is expecting in life, right? Right now I am on Sinemet 25/100 three times a day and Pramipexole 0.25 mg also three times a day. Basically I don't experience any of symptoms while on these drugs. But before that I had tremors, rigidity, slowness, balance problems and pain. It slowly evaluated in about two years. Can anyone share their experience? What should I expect? Maybe you could share some thoughts on how you are dealing with PD? The worst part right now is that despite being a positove person I still find it hard to accept the idea of having PD. Some days are good, but other days are hard. Especially because of my close ones. The deal is that I am lucky to have great friends and family who support me 100% but... They all want me to be super cool and positive and full of energy and hopes all the time, so I feel like I have to be smiling and happy around them. Yet, this is only on the outside, while on the inside I am breaking down. Sometimes I simply need them to say nothing and just be there and let me cry for a while. I just can not play this "I am a fighter" role 24/7 anymore. But I don't know how to tell my close ones that I need to be unhappy around them sometimes. At least while I am still accepting the idea of having PD. Any similar experience anyone? Or maybe some advice? Thank you all so much in advance

#2

I am not young, Alex, but I do know the fear facing you.

My husband was diagnosed 16 years ago....but he is active, plays bowl and snooker, is out at his  ukelele club at the moment.

Yes, life has changed, holidays are different...no hiring a car and whizzing round America, Greece etc.

Diet is a pain...keeping protein away from meds, taking pills every 2 hours..having spells of depression and exhaustion.

BUT, loving , happy times with family, meals out with friends, trips to the theatre and the cinema...are all part of his life.

Life changes slowly, you will adapt as and when you need to, you can cry when you want to....loss is always hard to adjust to.

New drugs and treatments are in the pipeline...my guess is that within 10 years this disease will be able to be stopped in its tracks and reversed.

I hope young PWP will post and reassure you.

Chin up!

You will cope with this and have a good life to be lived.

Love

GG

 


#3

The last post was added 4 times even though all 4 posts are exactly the same !!!!mr green


#4

The prevalence of Parkinson's Disease increases with age. However, contrary to what is commonly assumed, Parkinson's Disease can occur at any age. There are even reports of children having Parkinson's Disease.

However, when people have Parkinson's Disease at an earlier age there is usually, but not always, an uncommon cause. These causes are : toxic causes (of which there are more than 20), genetic causes (of which there are 35), and pharmacological causes (drugs taken for other purposes that can cause Parkinson's Disease symptoms as a side effect).


#5

Sorry, Alex!

The post wouldn't post and the page kept disappearing and a notice saying"we are making some changes to the site" kept coming up...so I kept pressing post again!

Please can the forum IT person delete the excess! I can't work out how to...

Thanks.

Love

GG


#6

Hi LexieGen

I was diagnosed at 44 i am now nearly 49.  Acceptance is the hardest thing, i find it best to tell your friends and family how you actually feel.  Its an added burden you putting on a brave face I'm sure yours friends and family wouldn't want you to do that.  Feeling low is also a symptom of PD so don't be adverse at having a low mood treated as part of your PD treatment.  Thinks will get better.

Richard

 

 


#7

Hi Goldengirl,


I have unpublished the duplicate posts :)


Best Wishes,


Min


Moderation Team.



#8

Hi LexieGen


I feel for you i really do, the age of 33 is very young in my eyes. I was diagnosed at the age of 46 and i considered that to be quite young.

Your close family and friends will i am sure understand that you can't hold onto your sad feelings all the time, you have to let them go now and then.


Would you be the kind of person at this moment in time who would be able to handle someone telling you what might or might not be instore for you with Parkinsons? Information can be a good thing if you are able to interpret and digest it and manage to cope with it. I make no secret on here that i ignore a great deal of knowledge about my condition, i only react to the symptoms when and if they change. I think my PD is slower than a lot because i can do so much still, the day when i can't then i shall deal with it when i get to it. For me the knowledge that one persons Parkinsons journey has been a traumatic one or that another has been able to manage it quite well wouldn't affect me and my journey. We are all very different ' it doesnt have to be the same for you as for the next 33yr old. Cope with this in your own way, talk to your family, you're not going to break you just need to let it go a little. Fear of the future is in us all  but there is a lot of help out there and you're not alone. Live your life and do what you enjoy, i do and i amaze myself because having PD is not the end of living by any means.


I hope you find your way of coping and accepting .


Take care

Barnowl1


#9
I wanted to thank you all guys for your messages. Especially Barnowl1. I totally agree with you. I was watching few videos on youtube and that was not a good idea. I think dealing with the desease day by day and step by step is the best thing I can do. To goldengirl and Dexon: Thank you so much. I do appreciate you sharing a bit of your experience with me. Somehow it helps. I guess coping is a long process. And I will share my feelings with people around me. I simply need time to be positive again. To Robert Johnson 2000: Thank you for this information. My doctors think that my PD is due to some genetic mutation. Because my DatScan is posiitive and I react really well to l-dopa.

#10
Oh, another question to everyone. What do you take for nausea? I am on Domperidone but it only helps partially. I do also take homeopathy meds : Nux Vomica but it's still not great.

#11

Hi Alex,

As someone diagnosed at 41 (2 yrs ago) I would highly recommend you make contact with the young parkinsons network which I found soon after being diagnosed.  You will be able to connect with  over 100 young people in similar situations to yourself and you will find they will be more than happy to provide support and advice,

The web address is https://youngparkinsonsnetwork.com/, but members have an active presence on Twitter/facebook (links from the website) and we've held regular video google hangouts as a way of virtually meeting up with each other.

Let me know if you need any more information.

Nick


#12

Thank you, Min!

All or nothing isn't it?

Type for ages and it vanishes or appears 4 times!

x


#13

I use ginger for any type ofnausea, but check with yur pd nurse o call helpline in case you need your meds adjustrd

Take care

Porthos


#14

Hello Alex,

We have a young PD onset group at the New York City hospital which takes care of my wife 's Parkinson's treatment.

Actually had a patient attend  that group who was 12 years old at Dx and found our PD support at age of 22 years.

My wife as diagnosed at age 54 in the year 2000 ,which back then was still considered young.

I have thought always as a care-partner who has attended Parkinson's specific  care-giving  classes at hospital for about 14 years ,that the younger one is at PD  Dx the better will be their quality of life and of course young as you are there will be a better chance of your having a cure as treatments become available time future we can only hope for now to cure this disease.

Do not despair and just be yourself .

Good luck , Mike

 


#15

Hi Alex,

My OH was diagnosed at 41 but was showing symptoms at the age of 35 and it is hard I think when you are diagnosed at such a young age, but please dont shut out your family. PD in a way is a grieving process and you need time to come to terms with it first and your loved ones need to understand that you need that time Be honest with your close ones you need their support and I know from being my OH's fiancee and carer its difficult on both sides.

The best advice I can give you is keep your GP, Neuro close and if you feel you want to talk then maybe a PD nurse is a great go between while your between appointments, they will be able to help you with any questions you may have and make sure you ask as many as you want to.  Also this forum is the best you are right, the people on here are like family because we get it, we understand.

You really need to explain to your family how you are feeling, they love you so they will understand.... you cant be up all the time it will drain you and you need to let them in so they can help.

Alex PD is not a death sentence, it doesn't change who you are deep down, you are still you don't ever forget that okay x

Life is like a book and PD is not the final chapter in that book its just a new one, you may have to re-write some of it but its still your book and its up to you how you write it xx

If you ever want to chat, offload or ask anything at all, ever please don't feel your on your own, Private message me and I'll be there. Sending you a big hug, wink

Beth xx