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#1 cancoffeeman

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Posted 06 August 2010 - 10:16 AM

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??

#2 cancoffeeman

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Posted 06 August 2010 - 10:30 AM

My name is Ben, and I live in Hillsboro OR, my #is 503 572 9011, and email is drawpsr@live.com

Thanks

#3 Lisa Kato

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Posted 06 August 2010 - 12:43 PM

My name is Ben, and I live in Hillsboro OR, my #is 503 572 9011, and email is drawpsr@live.com

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 lisakato@excite.com

#4 sleepyinpdx

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Posted 06 August 2010 - 05:07 PM

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! :)

#5 cancoffeeman

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Posted 06 August 2010 - 07:47 PM

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

#6 dogdreams

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Posted 07 August 2010 - 02:54 AM

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.

#7 cancoffeeman

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Posted 07 August 2010 - 03:35 AM

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

#8 sleepyinpdx

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Posted 07 August 2010 - 12:07 PM

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.

#9 cancoffeeman

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Posted 08 August 2010 - 05:01 PM

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

#10 Lisa Kato

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Posted 08 August 2010 - 09:19 PM

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)

#11 Lisa Kato

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Posted 08 August 2010 - 09:28 PM

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! Posted Image



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?

#12 cancoffeeman

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Posted 08 August 2010 - 10:57 PM

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

#13 cancoffeeman

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Posted 09 August 2010 - 04:05 PM

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.
[/quote]

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

ben

#14 cancoffeeman

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Posted 11 August 2010 - 11:10 AM

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

#15 sdidavide

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Posted 12 August 2010 - 09:04 AM

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
sdidavide@narcolepsynetwork.org
NNsupportgroup@gmail.com

#16 cancoffeeman

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Posted 12 August 2010 - 11:09 AM

Very Appreciated.

#17 cancoffeeman

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Posted 20 August 2010 - 12:32 PM

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

#18 cancoffeeman

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Posted 24 August 2010 - 02:56 PM

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?

#19 Lisa Kato

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Posted 24 August 2010 - 06:50 PM

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.

#20 cancoffeeman

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Posted 24 August 2010 - 06:54 PM

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