Topic: Need ideas for info for upcoming support meeting
merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
Hi!
I was wondering if any of you had any good ideas for info I could provide at my next support meeting? ANything that I could talk about and handout on paper.
Something that you would like to know more about or that you would or do find helpful.
What do wish someone told you in the beginning?
My brain is not working!
Thanks in advance
Melissa
Posts: 3905 | From USA | Registered: May 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
What makes a spiro run for cover? The behavior of a spiro under various conditions? Goldings' article from ILADS would be good. -
Discussion about excitatory and inhibitory neurotransmitters (i.e. NMDA; GABA) and the relationship of each to our brain awake state, over-excited or too calm. Just why the over-excited state is so hard to settle down and what to do about that (toxicity reduction; calming agents that don't clobber as well as way to clear the fog).
It would be great to have a guest speaker who could speak to that from the perspective of this population and in light of what a toxic illness does to the NMDA's to overstimulate.
There may be some videos from ILADS that would be good but you probably have done that already.
- Literature review of current books? Amazon is popping up with a new one everyday, it seems. Some budgets hardly allow for one and if it's a dud, what a waste. And, on that theme, perhaps discussion of how to gather a lending library?
What about having a Tai Chi or Qi Gong instructor come for a little talk and demonstration?
- A massage therapist could come and teach people how to massage each other's hands, feet, neck. Members of the group could bring a family member with them for training.
- Sleep hygiene? Light therapy; Light in the eyes: good in the a.m.; not in the p.m., etc.
- Could you all go to a warm therapy pool (if a chlorine-free one existed) and have a party ? Better yet, bring the massage therapist to the pool.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Good for you Merry...
I think one way to get the word out past your group there would be to relate some common misdiagnoses to Lyme.
Like set out a stack of copies of a short, easy to read, scientific abstract about Altzheimers and Lyme. And also....
One about TMJ and Lyme.
One about eyes and Lyme.
One about MS, fibromyalgia, Lou Gehrigs, Parkinsons's and Lyme.
There are plenty out there.. and many in the group you have at your meeting may not know many people with Lyme.. but I'll bet they've heard of friends/relatives with some of these other problems.
Be sure to tell folks during the meeting there are abstacts there that make the link between MS and Lyme.. and tell them all the ones you have so it will sink in and they can pick them up after the meeting.
I think folks would most likely share that info readily with others to help them too. Be sure to chose an easy to read abstract... as some are too deep for even the most experienced.
They have always gone over well when I've used them.
I also LOVE... dearly adore.. the Basic's Book (by Doug Fearn) that lists coinfections and all about Lyme.. the symptoms list, support groups, websites, etc... all in one 15 page booklet.
It is set up in easy to read sections and is great for both beginning patients and medical doctors.
They can be purchased by the case full for the price of printing them.. or ordered in 100's or such. I never have enough. They go like hot cakes.
I heard they just did the 5th update and they are in from the printers. You can also download the book from the website.. but the book is SO nice and neat to have.
posted
...have you ever printed out my LDA BROCHURE where i combined 2 of theirs together since 1 was completely illegible in timesnewroman print, and then added much more to it?
Betty G's LYME/TICK BROCHURE
with 2 LDA brochures combined together plus other stuff from Betty including:
lyme books, support groups, lyme/co-infection illnesses, symptoms, diagnosis, treatments, hunting/gardening ... how to dress; how to remove ticks, etc.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[bonk]](graemlins/bonk.gif)
![[Big Grin]](biggrin.gif)
Printer-friendly view of this topic