Disclosure

[bretparker]

I was diagnosed 5 years ago at age 38, but disclosed my condition to friends and (most family) only last month on the Forbes web site (you can find by searching "Parkinson's"). Take a look and let me know what you think.

Bret

http://www.forbes.com/sites/randalll...kplace-secret/

[Chemar]

Hi Bret

I have added the link to the article for you.
Our forum has defaults to block website redirects for new members, so preventing spam...but as this is something very different, I have made an exception

all the best to you

[Conductor71]

Originally Posted by Chemar

Hi Bret

I have added the link to the article for you.
Our forum has defaults to block website redirects for new members, so preventing spam...but as this is something very different, I have made an exception

all the best to you

Thank you, Chemar!

Bret,

It is with irony we have to welcome new members, but as you'll learn this disease is full of irony and paradox. I really enjoyed your essay. I too have YO, I was on the watch list for 5 years as I looked more Essential Tremor until I turned 41, learned I had PD, then discovered I was pregnant. Talk about ironies- how could I have an "old person's disease and be pregnant?"

You have come to the right place for advocacy and alternative treatment information. We are not exactly known for dispensing the warm fuzzies but dive into the archives and you'll soon probably know more than your neurologist does. That is both good and bad.

In deciding to disclose, yes, there comes a time when hiding it becomes so stressful that you have to tell others. It is rather a relief but people will not always show compassion. You are spot on with your observation as well. I guess because PD is so rare in younger people, it is understood and encountered far less than Cancer, and others want to disassociate from it- they don't want to think it can happen to them, so they treat us differently. Once you disclose, you learn that true friendship is rare. Why is it we have a sense of shame? Like we chose this disease? Many of us were heathy, ate organic foods, etc. Just as Cancer is indiscriminate, so is Parkinson's. By stepping up you have helped all of us lighten the the (unacknowledged) psychosocial load of living with PD. Hope you decide to continue posting here.

Do you mind if I share your Forbes piece? I am a member of a FB group of professional women with YO PD. We have noted the shame factor, and I think they will relate to your story.

Laura

[jeanb]

Bret,

Thank you for sharing your story (and thanks to Chemar for the link).

I think that you will find you are not alone in this journey. And while I am sorry to see you (or anyone else ) take this journey, I have no doubt that yours will be a strong voice for Parkinson's awareness.

Good luck to you, and keep on running!

Jean
www.pdplan4life.com

[indigogo]

Bret - What a great story - and so entirely relatable to many (most) of us! You must feel a tremendous sense of relief. Working so hard to disguise it would have been exhausting. Sounds like you have a supportive environment of family, friends and co-workers - I hope you can keep working for a long time.

Thank you for coming out so publicly and sharing the link here. Your article will surely raise PD awareness in a very positive way - we will all benefit.

Welcome to the tribe!

[bretparker]

Thanks and yes feel free to share the essay -- the more people who read and share the better! I want people to think about their "secrets" and consider opening up. And if anyone wants to donate to the run, it's on the Miami Marlins web site.

Originally Posted by Conductor71

Thank you, Chemar!

Bret,

It is with irony we have to welcome new members, but as you'll learn this disease is full of irony and paradox. I really enjoyed your essay. I too have YO, I was on the watch list for 5 years as I looked more Essential Tremor until I turned 41, learned I had PD, then discovered I was pregnant. Talk about ironies- how could I have an "old person's disease and be pregnant?"

You have come to the right place for advocacy and alternative treatment information. We are not exactly known for dispensing the warm fuzzies but dive into the archives and you'll soon probably know more than your neurologist does. That is both good and bad.

In deciding to disclose, yes, there comes a time when hiding it becomes so stressful that you have to tell others. It is rather a relief but people will not always show compassion. You are spot on with your observation as well. I guess because PD is so rare in younger people, it is understood and encountered far less than Cancer, and others want to disassociate from it- they don't want to think it can happen to them, so they treat us differently. Once you disclose, you learn that true friendship is rare. Why is it we have a sense of shame? Like we chose this disease? Many of us were heathy, ate organic foods, etc. Just as Cancer is indiscriminate, so is Parkinson's. By stepping up you have helped all of us lighten the the (unacknowledged) psychosocial load of living with PD. Hope you decide to continue posting here.

Do you mind if I share your Forbes piece? I am a member of a FB group of professional women with YO PD. We have noted the shame factor, and I think they will relate to your story.

Laura

[paula_w]

for many years. Only 42 when dx., I didn't want to be the sick one. I led a double life and had to lie. I called in sick to go to the walk in NYC.
How does one welcome you? I hope you see the benefits of knowing others with pd and get used to bad typing!

[reverett123]

Bret-
Glad to have you aboard. This is the closest thing to a patient governed think tank on the Web and there is a good deal of info buried in the archives. But any communication is one-way, although Debi Brooks is a good laison.

I am a 59 yo with first symptoms in 1992 and dx in 2000. I was vocal about the dx but as a self-employeed developer I could be.

Figure on doing your best work early on because one of our problems is that PD robs us of energy and we realize it too late. But watch the stress. It accelerates everything.
-Rick