Recently diagnosed with early onset


#1

Hi,

I have recently been diagnosed with early onset Parkinson's. Looking to connect with others. Feel pretty isolated at the moment.

 

 


#2

Welcome! We are all here (those who have found their way back to the new forum, at least), so feel free to ask any questions that you have.

I go to a YOPD group, but in truth I am 56, dx Dec last year. There are quite a few "real" YOPD people on here though.

 


#3

Hi Sheryll,

I am happy to connect with anyone not just those with early onset.

Thanks for your message. I guess I feel pretty low at the moment so I don't know where to start....how long was it before you started to come to terms with your diagnosis, or are you still coming to terms with it?

 


#4

Hi nostromo,

Thanks for your quick reply. In hindsight, I felt that I came to terms with my diagnosis in less than 6 months, but it did not seem to shatter me as it has others that I know.

For the first few months I mourned the lack of longevity (having parents who lived past 90). I also tended to mourn things I thought I couldn’t do any more, such as fine motor work on my stamp exhibit. Lately it was the loss of my karaoke voice. But I seem to have been able to move on from each of these losses and find ways to do them anyway.

I have written about my diagnosis and some thoughts in hindsight on the PD pages on my website.  See

http://www.sheryll.net/Degen/Degen_2012_12_medical.htm

- first finding out I had it and medical follow-up

http://www.sheryll.net/Degen/Degen_2013_01_diag.htm

- visit to neurologist and formal diagnosis

http://www.sheryll.net/Degen/Degen_2013_06_diag.htm

- possible turning point in dealing with it

http://www.sheryll.net/Degen/Degen_2013_09_diag.htm

- other thoughts about coping with my diagnosis

Everyone here will have a different story to tell about their diagnosis. One lady in our support group has had PD since 1984 and she is still angry about it! She said what helped her the most after diagnosis was her husband (now passed away 15 years ago).


#5

Hi there, I too have been dx with early onset at the age of 36. I'm new to the forum but have found the website very informative and helpful. I try hard to stay positive as much as I can, but would be lying if I said I didnt have days where I just want to scream & cry. One thing I notice though is that the days that I am struggling to hold it together are the days that I find my symptoms are worse and that my medication is not helping enough.

 


#6

Hi

I was Dx at 52, 2 1/2 years ago and to be honest, not much has changed. bit stiffer. bit achy in the mornings (could just me my age!)

Welcome to the club. I think I accepted this disease fairly quickly. I was brought up to be fairly pragmatic and tend to just 'get on with it'.

I do think about how I might be in a year / 5 / 10 years etc but there is no point worrying about it, it won't change anything. I try to focus on what I can do NOW. 

Caroline x


#7

Hi nostromo

Everyone reacts differently, that's for sure. I was initially like caroline and thought "oh well". But a year after dx there are times when I'm terrified, (many) times when like Sheryll I mourn the loss of what i can't do. And some times, like you, when I want to scream and shout. But mostly, I get on and work (well, you have to don't you?)

And there are plenty here who swear by a positive attitude (endorphins or something, probably). And exercise. And - especially, I think - the ability on this forum to connect with others.

Hope this helps

Semele


#8

I think that we will all find we will all deal with this in a different way and we are plunging into the unknown. I always remain as positive as possible over everything ... Unfortunately when you are holding the wall to get down the stairs it's damn hard. However, I have always taken the philosophy of don't stress about things you can't do anything about. I personally can't do anything about my depleting dopomine levels bar stay up beat and  be strong. Hang in there and keep smiling. Its difficult and  I admit  i always have pd words floating around in my mind but I choose to just investigate the future research and how we can be helped in the future. I really hope you can find a little solace in the site and the forum ... And me if you want to  chat about anything 


#9

Hi nostromo

I was diagnosed in August this year at 47  and my mother was diagnosed in September at the age of 76 ,the first few weeks were very difficult and i would burst into tears at any time it took me about 4 weeks to come to terms with the dx although i  will probably never fully accept it part of me will always resent what parkinsons takes away from me  and  sometimes now i still feel like i could sit and cry but i tell myself that i can not change anything  so i intend to  get on with my life the best i can and not let Parkinsons  rule my life  

A positive attitude  helps and there is  plenty of support available on this forum , i personally ordered  a range of leaflets from Parkinsons UK  which were really informative and really helped me to put things into perspective

 


#10

 

Hi nostromo
 
I was diagnosed last year age 33. I'm writing a blog about my Parkinson's: http://dialoguewithdisability.blogspot.co.uk/ It may help you
 
dr jonny

#11

Hi and welcome,

Like yourself I was diagnosed with early onset pd last year .To be honest I kind of expected it after suffering with symptoms for about two years.The way I deal with it is to joke about it .i have good days and days and loads of nights with no sleep (good job they invented xbox).

I'm determined not to let it beat me !

I've not attended any groups although I probably should,if I need to rant and rave or just generally whinge ive found this forum the place to come.

Hope you come to terms with your diagnosis soon

 


#12

Another welcome to you, nostromo!

Trying not to repeat what others have said about exercise, positive attitude, etc., I'll just add that many cases of PD move extremely slowly.  You may be one of the lucky ones.  I have had it at least 16 years, and my symptoms are still very subtle.  PD has not changed my daily activities much at all -- except for the number of pills I swallow!  But if you find the right dosages of the right meds, you will probably be more at ease with PD soon.

Best of luck!


#13

I agree humour is the best way to deal with it , a few days ago i was trying to find my way to my local support group so i decided to  to use sat nav on my phone, my tremors were really bad  that day then all of a sudden a box came up on my phone saying i had activated the shake function did i want to use the shake feature to send feedback  ...err no just find my way to the support group  .  i saw the funny side  but i have now disabled the shake function on my phone red face


#14

Earlier this year I had to deal with a problem with coughing up blood clots...nothing to do with PD but the advice given by my GP was sound...Hope for the best but prepare for the worst. As it turns out he was more concerned than I ...I had already thought the probable cause was a heavy bought of coughing had ruptured some of the tiny blood vessels in the lungs. After  an xray, ct scan and examination by an ENT consultant it was concluded that I was most probably right and all is well.

I am still waiting to get a diagnosis...so I am preparing for the worst....regardless of the outcome which if you'll pardon the light heartedness...is  a bit like making a pot of jam...and waiting for the label to be printed...all the ingredients are there...it has been cooked....now you are just trying to decide what to write on the label.

If I do happen to have PD....then it makes me all the more determined to make the most of what faculties I have for as long as I have them. I have always looked Philosophically at life with the view nobody is guaranteed tomorrow....and so far I have been lucky enough to have lived a wonderful life...I have angina and asthma which in theory and practise might kill me long before PD gets to the stage where it might become life threatening.

I'm sure it must be harder on those who suffer PD at an early time in their lives all we can do is offer our help and support to them and their loved ones.

Already after just an hour as a newcomer I feel less alone. A problem shared is a problem halved.

 

Bless you all


#15

Welcome, lighthousepoet!

I think you're already on the right track, a track some pwp take much longer to discover: lightheartedness.  You never need to ask us to pardon it.  Most of us on the forum embrace it and are grateful for it; it helps us fight back.  But I wish you the good luck of a diagnosis of nothing at all threatening. 

Best wishes!


#16

Thankyou to you all for your comments.


#17

Hi guys firstly may I welcome the new folk here and say a real heartfelt sorry that you guys have 'joined our club' I was diagnosed at age 50-  6 yrs ago life has been a roller coaster since then, and I would be lying if I said it had all been plain sailing ! But I am still here and family and friends remain with me! So welcome and good luck feel free to contact me if you feel I can help. 

 

 


#18

Thank you for the welcome BJS,


#19

I was diagnosed ten years ago when I was 42.  Progress was initially slow, but seems to be speeding up.  I have very few outward signs - no tremor, so not many people know that I have PD.  I work full time but find it exhausting due to constantly interrupted sleep (muscle stiffness, aches and cramping).

On the positive side, it could be a lot worse.  I am taking a lot of medication and have been offered Deep Brain Stimulation which scares the life out of me.  A possibility for a few years time I think.

Anyway, a positive attitude is definitely the best advice to give.  Dont give in, keep smiling and cope with each day as it comes.  Some are easier than others, but each one is different.


#20

Thanks to everyone for your supportive messages. The last month has been a bit of a blur with not much support, but I appreciate the messages.