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Young Onset Support Group


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#1 Brad24

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Posted 21 November 2012 - 07:45 AM

I am from Central PA and was diagnosed in February of 2012. I have been looking for a Young Onset Support Group close to State College, PA. I can only find ones near Pittsburgh or Philadelphia. Does anyone know of any support groups closer to the center of the state? I do not mind driving an hour or so.

Thanks for any help!
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#2 Jenette

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Posted 21 November 2012 - 11:47 AM

Brad - I am from Reading PA and also have been looking for a YOPD support group. There is a PD support group here that meets once a month but I only went twice. It was clearly geared toward thie older folks.

Perhaps we could work together and start one? If you're interested, email me. 2xmail@comcast.net

Be sure to put YOPD in the subject because I delet items that I don't recognize


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#3 Brad24

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Posted 22 November 2012 - 12:46 AM

Jenette, thanks for responding. I know of another woman in Lewisburg, PA who is in our boat. How far are you willing to drive? I have four children, two of which are under 2 years old, so I am pretty limited to an hour drive one way.

Please let me know maybe we can get something started.

DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#4 Elizabeth K.

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Posted 22 November 2012 - 08:03 PM

Start a group! When my husband was diagnosed at age 41 two years ago there was not a support group for young people in Dallas. Now there is! ;)

#5 Brad24

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Posted 22 November 2012 - 09:50 PM

Elizabeth, can you give any advise on how to start the group? Your husband was so young at DX. May I ask his occupation? If you don't want to tell I understand.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#6 Elizabeth K.

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Posted 27 November 2012 - 02:20 PM

I don't mind at all! My husband is a registered nurse. Parkinson's fatigue got him out of patient care so he currently works as a nurse for an insurance company. He moved into upper management and really likes it.

As for starting the group, we started a facebook page and a website (through godaddy.com) you can see it here www. Dallasyopd.org
Then I attended a bunch of support group meetings for various illnesses to figure out what I liked and what I didn't and how I wanted mine to go. One of the people that ran a group for PSP helped me rent a conference room in a local hospital and we started meeting once a month. There were about four months of meetings that were just the original 3 couples, but slowly people started coming. Now we have over 15 couples and I've hosted some big events. We switched to meeting every other month. It's very rewarding and barely any commitment.


#7 mphsmark

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Posted 28 November 2012 - 04:08 PM

Would love to find a group in Memphis ,tn. I was diagnosed last year at the age of 46 and really have no support except what I find to read,with no insurance it's been hard but need to get out and find out how to slow down some of the effects


#8 Brad24

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Posted 04 December 2012 - 08:45 PM

Elizabeth my wife is an RN and I know how hard they work. He must have a good work ethic & support from you to continue working as an RN. I am a police officer and i know without my wife's support it would be hard. She really helps me with what to do for all the cramping and pains I get. The only reason I asked is I am looking for other police officers with PD to see how their departments reacted to the DX and how they handled it.

DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#9 Jenette

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Posted 05 December 2012 - 07:20 AM

Brad - I don't mind the travel. Depending on meeting times, I'd bring my husband and the motorhome.

#10 Brad24

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Posted 05 December 2012 - 09:36 PM

Jenette, ok I going to speak with my MDS next week will let you know if I come up with anything.

Thanks,

DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#11 Kristakj78

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Posted 06 December 2012 - 12:44 AM

I am from the Allentown/Lehigh Valley area, and would love to find a support group. It is soooooooo hard to find young onset support groups. Feel free to email me as well at kjoralemon@yahoo.com with any info! I would def show up!

#12 Brad24

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Posted 06 December 2012 - 01:21 AM

Okay, that's three of us! I will talk to my MDS next week and see if I can get more. I know of another woman I met at the young
onset Conference in cincinnati in November. Hopefully we can get something startedl! thanks for responding you guys. I am not sure what all we have to do but I believe there is literature available and I will request it if we can get enough people together.

Thanks again,
Brad
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."

#13 TrudiN

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Posted 08 December 2012 - 08:02 AM

I'm a newly diagnosed YOPD living in Lebanon, PA. I would be very interested in joining up with Brad, Jenette, and whoever else is interested somewhere in central PA. With you guys living in Reading and Tyrone and me in Lebanon and someone else in Lewisburg, we could perhaps meet somewhere in the Harrisburg area or maybe even Lewisburg (I went to Bucknell so I am very familiar with Lewisburg!). You can contact me at nopps1@comcast.net.

#14 Brad24

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Posted 08 December 2012 - 09:05 PM

Ok, I am going to see my MDS this week. She is in the Harrisburg area. I will try to get some more info on what we need to do. I believe there are packets available for starting a group also. I am saving everyone's info. Lets keep in touch.
DETERMINATION "In the heart of the strong shines a relentless ray of resolve...It cannot be stopped, it cannot be controlled, and it will not fail."




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