I like this, Laura. For one thing, quite a bit of it could be used in our next meeting announcement. I am thinking that I will do it next time. It's definately my turn.
I'm glad you're going to try getting the pwns together more frequently. It seems like there's real potential right now and that group web site sounds like a good opportunity.
You probably got a copy of the e-mail that I sent to Laura Fox, forwarding this message. Laura's the woman I mentioned to you who was just passing through Columbus when we had our October meeting. I told you that she came from Cleveland, but that wasn't correct. She is from Sandusky. She' quite young and had just been diagnosed with both narcolepsy and apnea.
Do you have the e-mail addresses of Kelly, Kirsten, and Gena and/or do you know if they are signed up on our yahoo group site? All I have is a new e-mail address for Kirsten. She signed the clip board at the meeting last Sunday.
I'm thinking of writing Kathy and asking her to try to get a speaker for our next meeting unless you have an idea of another topic for us to address. I was thinking I could mention our old faithful speakers but also mention the doctors who now work for Ohio Health that have never spoken at our meetings. I figure it would be good to give her plenty of lead time since she's new at the game.
You seem pretty busy, but if the winter weather gets to you and you want to go out for supper give me a call and we'll go to Northstar.
--- On Fri, 1/22/10, lje <dreamiestgirlever@...> wrote:
From: lje <dreamiestgirlever@...>
Subject: [central ohio sleep disorders] med information + monthly ohio narcolepsy meetings
Cc: "marilyn hallowell" <marilynliz@...>
Date: Friday, January 22, 2010, 1:47 PM
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP
meeting dates for the year 2010 (the third sunday of each quarter):
April 18, July 18, August 15 (picnic), October 17
@ elizabeth blackwell center, 2-4pm - except the picnic which is usually held from 4-7pm. mark your calendars now so you don't miss us!
JANUARY 17 MEETING
we had 10 participants at our sunday meeting + kathy, ohiohealth social worker. i think everyone there had a narcolepsy diagnosis but some had sleep apnea also. we talked alot about nutrition + natural alternatives to medication. many expressed their ongoing struggle to make it day-to-day financially + emotionally.
on the topic of nutrition + natural alternatives, i would recommend this book: Prescription for Nutritional Healing (Prescription for Nutritional Healing, 3rd ed) (Paperback) http://www.amazon. com/Prescription -Nutritional- Healing-3rd/ dp/1583330771/ ref=dp_ob_ title_bk. beyond the recommendations for different conditions/illnesse s, it has a great overview of the current thoughts on healthy, natural eating + nutrition. this is the book often on hand in the supplement/herbal section at stores like wild oats + whole foods to guide customers in their choices.
on the topic of struggling/coping, i would like to recommend the work of rubin naiman who has been a speaker at the NN conferences over the past few years. he always impresses me with his views about sleep + dreams + consciousness. http://www.drnaiman .com/articles/ another-view- of-narcolepsy. an audio CD of his presentations should be available for purchase soon from NN. i would highly recommend it!
(please add to this if you were at the meeting + have something to share)
for those with questions about medications re: narcolepsy, there is a place on narcolepsynetwork. org in the online forums that addresses each one individually. i think you will find it helpful to read other's experiences + you could even ask questions directly to an individual who has commented on a specific medication. a great resource!
ONLINE NARCOLEPSY SUPPORT + OHIO NARCOLPESY GROUP
i discovered a new online narcolepsy support group with 798 members. http://www.dailystr ength.org/ c/Narcolepsy/ support-group
some of us with narcolepsy are wanting to meet monthly. we've tried this before + failed so... we know we have to make it fun + engaging. we will try a potluck soon in an interesting, less formal meeting space. if interested, join here - OHIO NARCOLEPSY GROUP: http://www.dailystr ength.org/ groups/ohio- narcolepsy- group.
this would be a spin-off of our regular group with most communications through the above listed link. it was started by marilyn who was not aware of our group. i was able to meet her at the NN conference this past october. she owns a consignment + we might just end up meeting there. what do you think? i hope to go meet with her soon to plan the first get-together + will report back.
10/2010 NN CONFERENCE in WASHINGTON DC
i've been asked to be on the planning committee so as info comes my way, i will ask for your opinions + help. many NN ohio members are hoping to bring the conference to columbus in 2011 so i am happy to learn all i can + get you involved as much as you would like to be.
laura j evert
olde north neighborhood of columbus, ohio usa
tel: 614.784.8823 (leave message) /cell: 330.285.5656 (no voice mail)
buy handmade! dreamiestgirlever. etsy.com
N[ART] narcolepsyart: groups.yahoo. com/group/ narcolepsyart
CENTRAL OHIO SLEEP DISORDERS SUPPORT GROUP: groups.yahoo. com/group/ centralohiosleep disorders
OHIO NARCOLEPSY GROUP: http://www.dailystr ength.org/ groups/ohio- narcolepsy- group
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