bensanders

Portland Or

32 posts in this topic

I have had only a short time to get things under control,while symptoms have been present for most of my life as best as I can understand, it has only been the last year that i have had a progression of disruptive sleepiness, and cataplexy. I need to talk to others, I have found a few people on Facebook, but I really would like to meet people (who understand) right here in oregon or washington. And better a group that meets regularly?

Anyone??

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My name is Ben, and I live in Hillsboro OR, my #is 503 572 9011, and email is [email protected]

Thanks

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My name is Ben, and I live in Hillsboro OR, my #is 503 572 9011, and email is [email protected]

Thanks

I am in the area and have exp. facilitating groups. I may be willing to facilitate a group however have yet to gather the people. Might take a bit of work... (Contacting sleep centers, posting on some other sites etc.) Do you have the ability to help with stuff that does not require driving? Email me [email protected]

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k got two i think, somebody, anybody else??

I'm in Beaverton, OR and have been considering trying to find a group, but my experience has been in the past woe is me attitudes so I'm not looking for that type of setting. But I would love to find others that are trying to cope and better their lives! :)

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hey, more of ya'll!!! answer the call, lets play ball, lets meet up down the hall, talk about the gall, and sometimes when we fall, so yeah, for what i got thats all.

wow lets see if cheese is good bait? narco/ cataplexy in portland or,.. say hi! I want to meet you

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I'm in Beaverton. cowgrl is in Vancouver. Hey we finally have a few people in the area! this is great. we should do lunch.

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Ok I count five plus any spouses, right? Who wants to put up a when and where? I will be flexible so its whatever works for the ones that have the hardest time schedulewise. Thanks so much

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Ok I count five plus any spouses, right? Who wants to put up a when and where? I will be flexible so its whatever works for the ones that have the hardest time schedulewise. Thanks so much

Maybe getting peoples schedules/free times might help the coordination effort? I have a M-F work schedule and could meet up in the evening as long as I could be home by 8 or 8:30. Weekends are hit and miss but could work too!

I was diagnosed in April this year, but the symptoms go back to when I was 6. My mom just thought I was being lazy and would tell me that. There is so much damage that is was done there. Now my family just thinks I'm trying to get attention or something when I try to talk to them about it or explain to them why I cannot do somethings, but they don't want to listen. Fortunately my husband is VERY supportive! He might be interested in coming too if we open the group up to that.

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Yeh pretty mmuch same boat evenings 5 to 11 for me. Some saturdays it could be anytime

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Mondays or Fridays from 6-8pm work good for me. Tuesdays definately not. I live east side PDX close to Gresham. Any ideas for a central meeting place? Taking in to consideration everyones location (We got Hillsboro, PDX, Vancouver, Beaverton?)... maybe somewhere in Portland close to the river on the East side? Easy access to fwys and max? (Downtown/Westside parking can be challenging) Are there any of you with driving/transportation issues? Sept-June I can most likely get authorization to use meeting rooms at East Hill Church in Gresham. Seems to far for Hillsboro/Beaverton. As far as regular meetings... I could do monthly (ie. 1st, 2nd, 3rd, last Monday or Friday of the month)

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I'm in Beaverton, OR and have been considering trying to find a group, but my experience has been in the past woe is me attitudes so I'm not looking for that type of setting. But I would love to find others that are trying to cope and better their lives! smile.gif

I agree finding a balance between sharing frustrations and/or processing grief while keeping a proactive focus will be important if it is to be a positive experience for everyone. Possibly we could spend some time online and during the first gathering discussing expectations/guidelines?

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This sucks I'm trying to write a reply on my phone and I keep doing some weird thing I think may bbe a part of all this it seems like I keep dropping my thumb twithout meaning to ahh. Anyway yeah monday or friday nights good I propose the park at the psu caampus or the all hours starbucks in beaverton I don't care at the momednt if its one of yall or 20 people k jest call if you want till we get this rolling 5035729011

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I was diagnosed in April this year, but the symptoms go back to when I was 6. My mom just thought I was being lazy and would tell me that. There is so much damage that is was done there. Now my family just thinks I'm trying to get attention or something when I try to talk to them about it or explain to them why I cannot do somethings, but they don't want to listen. Fortunately my husband is VERY supportive! He might be interested in coming too if we open the group up to that.

Yes I think that is a very good idea, your experience seems very much like mine, I look forward to meeting you guys!

ben

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Looks like we may be able to meet here in portland monthly, would love to find a couple more people, so if anybody new in the portland area reads this, go ahead and let us know/ we are focusing on serious symptom level people/ trying to keep it upbeat/ and I believe trying to include spouses, as this can in ways be just as diff,

We are going to need to choose a place, the park at psu may be central, lisa had a couple of opts on her post, or at the moment while we are small any area coffe shop with a cushy chair or two is good with me- I understand if any want to stick to a private setting but we may need to pony up some more opts, I think lisa's gresham fac is the only one on the board.

Time should be anywhere from 6-8 mon, fri, or sat. I'll be avail for either, If anyone from westside wants a friend,(security) to ride the max or bus with let me know, I'll probably drive otherwise,

1st monday of the month/ 3rd friday, whatever at least monthly is what I am shooting for, and the chance to meet you. lets get something going though, i don't care to circle the airport unnecessarily eh?

Ben

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Hi Group, sorry to but in... I am the support group committee chair for the narcolepsy network and I think that it is awesome that you found each other. I am part of a support group in Chicago that meets once a month, sometimes we have over fifteen people sometimes we have four or five, the point is to never be discouraged and keep up with your assigned meeting time. We also try to have topics for meetings so we can make sure that we talk about things that interest everyone and we are not sitting around talking about the same thing over and over, but we also have some meetings were it is open topic and if you have a question about your medicine, or doctors, or whatever you can bring it up to the group. I am here for anything that you need, please feel free to contact me at any time. Lastly if you can also ask your doctors to come to a meeting once in a while (not the same meeting;)) sometimes it is nice to be able to ask doctors questions that you may not think of while you are sitting in their office.

My contact info is...

Sarah DiDavide

312-498-2381

[email protected]

[email protected]

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Very Appreciated.

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hey ,, I'm updating so new people might stumble on it easier Ben

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PPWN (portland people with narcolepsy)

hey I am looking to meet-up 6:00 monday the 30th of Aug. Please provide any input time loc, and even day as you require... Hope to see a few of you there?

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Should be able to make it. Where ever is good. I am looking into seeing if we can get a monthly meeting place at Legacy Emmanuel or Sameritan. Might take some time tho.

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Should be able to make it. Where ever is good. I am looking into seeing if we can get a monthly meeting place at Legacy Emmanuel or Sameritan. Might take some time tho.

happy to hear it, thanks soooo much! Ben

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Hey, Any of you guys looking to meet up again? PM is okay but daytime during the week is better for me.

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I totally want to- how bout we set one for two weeks from now- monday afternoon- thats monday the 10th? anytime 3-7?? but 6 would be best for me

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I could probably do 6 pm MOnday Oct 10th. I'll check the calendar. I would not be able to get out to Hillsboro/Beaverton area that time/day. Something closer to the Willamette Okay?

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If you would like to join us for an informal meeting we will be at...

Old Wive's Tale

Sun, Dec. 12

from 2-4

Contact Ben or Lisa for information

Ben (AKA Cancofeeman)

503 572 9011

[email protected]

or

Lisa (AKA LisaKato)

503 515 9154

[email protected]

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I'll be there. Thank you for the update Lisa and Ben.

Here's a google map -

http://maps.google.c...&hnear=Portland,+OR&cid=0,0,17567150301548425838&ei=ifbxTPDpIoK6sAP8gpjkCw&sa=X&oi=local_result&ct=image&resnum=2&ved=0CCQQnwIwAQ

If you would like to join us for an informal meeting we will be at...

Old Wive's Tale

Sun, Dec. 12

from 2-4

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