helplinedonate
  • Announcements

    • ForumAdmin

      Frequently Asked Questions - Step by step guides

      Do you need assistance registering, logging in, posting, etc? Please visit the all new Frequently Asked Question Forum for step-by-step guides. Click the link below to access these helpful guides. Frequently Asked Questions
    • ForumAdmin

      Recursos Nuevos en Español

      http://www.parkinson.org/ayuda   http://www.parkinson.org/espanol    
    • ForumAdmin

      Línea de Ayuda 1-800-473-4636

      Línea de Ayuda 1-800-473-4636   ¿Qué es la línea de ayuda 1-800-4PD-INFO (473-4636) de la Fundación Nacional de Parkinson? Es un número de teléfono gratuito que ayuda a las personas con la enfermedad de Parkinson, sus familiares, amigos y profesionales de salud, a solucionar diferentes inquietudes.   La línea de ayuda ofrece: Información actualizada Apoyo emocional Referidos a profesionales de salud Recursos comunitarios Amplia variedad de publicaciones gratis    
Jason

Mini-introduction...

22 posts in this topic

Popping in to introduce myself... Dx'ed November 2010. You may find this pathetic and/or unbelievable, but just today, for the first time the words 'I have Parkinson's' passed my lips.

 

I always used to say 'whatever it is that I have', 'whatever is wrong with me', or 'people like me'... But never 'I have Parkinson's'...

 

I have not told anyone, bar my saint of a wife, and I've no plans to do.

 

I would say that I've finally hit the 'Acceptance' stage... No more denying it... No more bargaining with some nebulous, all powerful being... Little fits of feeling down, or self-pity, but I quickly get myself sorted... Chin up, chest out and get on with what needs getting on...

 

However, I am still angry... So much so that if I hear a Michael J Fox joke I am ready to literally curb stomp that person. Not that I even like MJF, I really, really do not, but that is a different post entirely.

 

But accepting it, verbalizing it... I've made it that far... And it took me almost 3 years.

 

I take 2 x 25/100 Sinemet every 4 hours, 1mg Azilect in the morning, and 1.5mg MirapexER a bit before bed to see me through the night... and about 50mg of Valium through the course of the day to hide my shaking limbs, hands, etc...

 

I didn't mean for this to become a whinge-fest... I am hoping to meet some decent friendly people who can understand, or at the very least empathize.

 

I hope I am not making the impression that I am a miserable bastard who just whinges about this and that... Just bear with me... I'll get there, eventually. While I've been on this 'journey' for a few years I feel like I've taken more backwards than forwards steps and have been relegated to the sidelines.

 

Which I truly have been in a most literal sense. I am unable to play cricket or football anymore... I no longer have the speed, mobility, agility or stamina... but in my head I still do. :-)

 

I suppose I'll end on that note...

 

Cheers for reading...

Jason

1 person likes this

Share this post


Link to post
Share on other sites

Hello back at ya! I really didn't mean to come off as a miserable... I'm really not! :wink: Just having a hard time with this and thought it might be a good idea to hear how other people approach dealing... and pick up some tips and/or tricks.

Share this post


Link to post
Share on other sites

Cheers, Donald! Humour, eh? When it comes to PD that is certainly something on which I need a bit of work. :-D I am left with precious little alternative anyway, right?

Share this post


Link to post
Share on other sites

welcome Jason, it's rough at times, but you made a big step. being here on the forum has helped me be able to ask questions, with real ppl who are dealing with the same issue as I am, and practical ways to deal with this wonderful blessing we all have. (yes pd) wish you the best of luck, and hope to talk to you again on here.

Share this post


Link to post
Share on other sites

Thanks, SarahJo... As daft as it may sound, I feel like I have taken a forward step after 3 years. Maybe I'll be able to help someone knocking around the forum one day. :-)

Share this post


Link to post
Share on other sites

Aloha Jason and Welcome!

 

My pd didn't show up until I was 58 so I didn't experience many of the frustrations that young onset folks do. I do however empathize and can relate to most of the issues common to all pwp. I'm currently on a business trip with 5 colleagues and realized how hard it is for me to be the person in the group who has "special needs" or just being different from them. For example, I'm one of those pwp that wakes up every night between 2 and 3 a.m. (and cannot go back to sleep) regardless of what time I go to bed. So to take care of myself I really should go to bed around 7 p.m. so if I get to sleep by 8 I can get at least 6 hours in. I have shared my the fact that I have pd with my colleagues and they are understanding and supportive. They are more than willing to get me back to the hotel by 7. I find I go through layers and levels of acceptance of the disease and try to remind myself that what ever level I'm at is ok. I think the issue of being different is that I feel like "damaged goods" or "defective" As I said, I experience this even with very supportive people around so it's clear to me that it is my issue.

 

Anyway, feel free to vent here. We're all in this together.

Share this post


Link to post
Share on other sites

Welcome Jason. I was just DX'd in April and I'm feeling much of the same things you mentioned. I have only told a few close friends and family members. Several people have asked me over time why I was shaking and I would joke and say something silly like because you're scary to avoid discussing it. You should feel very lucky you have a good wife to support you through the rough times. I am basically alone with nobody in my corner and I'm struggling to find the determination and strength right now. I still do most of what i've always done, it just takes me longer. I still work full time and lead a somewhat normal life to those on the outside looking in. My father had PD for about 15 years before he died and I know first hand how this disease can affect people and that scares me. I told my brother the other day - some people have cancer, some diabetes, heart disease, etc....this is "my thing" and I will deal with it, I'm just not happy about it. Anyway, welcome to the forum and rest assured, your thoughts and feelings are normal and I'll help you beat up the fools making fun of MJF. LOL

Share this post


Link to post
Share on other sites

Welcome, Jason. Congratulations on coming to grips and getting real about it! For me, acceptance means no more resistance against the obvious. Resistance=energy depletion=more symptoms. When my dystonia is particularly bad, I listen to a podcast called Beyond Pain. It reminds me not to fight or resist the pain, and somehow I am able to relax it away.

 

So glad you shared with us. Keep coming back!

Share this post


Link to post
Share on other sites

An extremely large thank you to everyone... I'm over the moon that I found this little forum. You guys've all been brilliant.

Share this post


Link to post
Share on other sites

Welcome, Jason, sorry to see you hear but awfully glad you've chosen to join the group. Reality is a bitch, right? But, in my experience, it's been easier to move along in life once I "came clean" with those most important to me and my life regarding my new "companion", PD.

This is a great place to be to share, carp, joke, or just read along and jump in where/when you can. Hope I can be of help to you somewhere along the way and I hope you won't mind doing the same.

 

Take care,

Sean

Share this post


Link to post
Share on other sites

JUST WANTED TO SHOUT A HUGE THANK YOU TO YOU ALL ON HERE, was having a pitty party a bit ago, and signed on and to see all the support to our newbie, (Jason) made me feel amazing, thanks guys and gals, Jason, you are in the right place, and yes you will help ppl on here, I forget the number of ppl being dx everyday. IT SUCKS, but like dgray001 said, we all have something, we just get blessed with PD!!!! off to church all have a great night,

Share this post


Link to post
Share on other sites

Thanks again to everyone... I rather wish I had actively sought this forum out 3 years ago when I did get my 'official' Dx... just these past couple days by exchanging messages with people and reading other posts it's done wonders for me. So, honestly, thank you all. If anyone lives in the D.C./Baltimore area send me a message... I'd enjoy meeting you.. I don't know anyone else with PD.

Share this post


Link to post
Share on other sites

Jason,

 

Welcome, I'm sure you'll get a lot from this forum. I'm newly diagnosed, last month, so I understand the concept of denial. My visual/physical symptoms are pretty minor in comparison to everyone else on here, at least that's my impression from reading everyone's posts.

 

Dave

Share this post


Link to post
Share on other sites

Hi Jason. I was diagnosed in 2006. I still think it must be something else. But it seems if you have symptoms that resemble PD then they call it a Parkinsonism. There is another name too but I forget what they called it.

 

Welcome to the forum .

 

M

Edited by MarciaJ

Share this post


Link to post
Share on other sites

Jason, I was diagnosed last July and only my husband knows. I have not told siblings, children, Mom or co-workers. I am just not ready to be looked at thru that filter. I know the day is coming - I'll deal with it when I have to. I have not quite reached that acceptance phase as you have. I keep praying there is a mistake somewhere. I read an article by MJF and he said everyone has their own bag of hammers. I guess we have been given ours.

 

You have come to the right place for support, answers, and humor. Thank God for the humor. It keeps me going and gives me hope that you can have a life.

Edited by she-ra

Share this post


Link to post
Share on other sites

Welcome, Jason!

 

Everyone comes to terms with this diagnosis in their own way and their own time. We're all in this together! I hope you find as much camaraderie here as I have!

Share this post


Link to post
Share on other sites

Hi Jason! My partner's the one with PD. He was diagnosed 1.5+ yrs ago at the age of 30. It's a lot to come to terms with...and as soon as you do, it all changes. :P

 

Glad you're here!

Share this post


Link to post
Share on other sites

Jason welcome...We all undestand you perfectly. I was diagnosed 2 years ago. There are times i think i will never surrender my own denial too. Everytime i hear my neurologist say the word "Parkinson's" i feel this irrational anger and want to shout at him "what nonsense are you talking about. Me, Parkinson's? I'm 37 years old for crying out loud." The only thing changing with time in this imagined conversation is my age....I guess i will probably surrender my denial in 30-40 years from now. can you imagine? "What nonsense are you talking about. Me, Parkinson's? I'm 77 years old for crying out loud "...no, it doesn't sound right...hahaha...

1 person likes this

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!


Register a new account

Sign in

Already have an account? Sign in here.


Sign In Now