Hi,
The only advice I would give is there are so many neurological disorders, it might become too much for everyone. MS has so many different issues to deal and talk about that it might be good to stay with one topic. Otherwise you may get a lot of different people coming wanting answers, or perhaps some will feel too shy to discuss things like ED or bladder issues etc. Also, if it is an intimate group in your home and just to talk and support is one thing, but to have a forum with a stage and microphone may also give the impression that you are having a professional group. Does that make sense. Also, if you do start this, I would talk to other people who have led support groups I have at least one link to see how involved it can get. You will also want to have maybe the MS Society back you or a professional who can give factual advice and information. The last thing you want is to give or have false information passed around. Most groups have speakers from time to time from reputabal places speaking on the disease, or various parts of the effects it has on us. Everyone has different things even with the same issue. Just be careful that you have a game plan set up, be at least 2 weeks a head of the meeting with what the topic will be and back it with a place that you can go to for information, flyers etc. Like I went to one that had a flyer that read "But you look so good" and it talked about silent illness and MS and that those are the worst things you can say to an MS person because no one has any idea what that person may be feeling at that time. That flyer was put out by the MS Society by the way. The MS Society in your area is a great source of information. Just some suggestions, I've thought about doing the same thing, but it is a lot more work than you think. Just my opinions and playing the devils advocate. I support your enthusiasm and i hope you get it up and running and it is a wonderful success for you and all who benefit from it. Good luck to you and everything. I was once told also by a doctor (who are all just human too) that the NIH website is the only real one people should be looking at. Remember there is a lot of stuff on the internet that is made up etc. Good luck and I hope it all works for you. If I was in your area, I'd come your positive attitude is wonderful.
Dragonfly :-)

Morning JoeyRose,

I agree with Dragonfly. I am the co-leader for our Support Group. There are many phone calls and emails to focus on.
The NMSS has a training program for leaders of a group. (Usually set up on phone interview)
Also contact MSAA and MS Foundation. You may be able to get a small check like $25.00 from MSAA to help w/snacks for Meeting.
Since you are well versed in our disease I would focus on that. People have many questions and come for reassurance. Our group ranges from 15-20. We will cancel for summer months cause it is to hard for people to travel in heat.
The stage may be too much I know that my friends at meeting like to hear speakers and focus on smaller groups of conversation. For some it is the only time they get out as it is so hard to get ready for any event.
One day I was on the phone for 9 hours and only spoke to 4 people.
You have a big heart and this would be so wonderful for those in your Community. See if you can get someone to Co lead it will be too much for one person.
Good Luck you will do great!!
Thanks for making a difference.
(hugs Mary)

I lead an MS Support group in the State of Oregon. It is the MSF that might give you 25.00 per month to defray some fo the costs, not the MSAA. But, you should affiliate with the NMSS, the MSF, and the MSAA. I do agree with the other comments that 'neurological disorders' is too broad. Each group is competitive for financing, research, and so much more. Different meds are used for each group, and it would be too confusing for members to listen to experiences of something they could not relate to.

I think this is great,,,please let me know how it goes hon?? i am moving to a much smaller area...and dont know if there is going to be anything up there in that aspect...there are quite a few where i am now...but am going into unknown territory now..grin..

so would be very interested in your progress on this..

hugs
heather

Joeyrose, I think it also depends the number of people who show up. If there are only two people there, then you might want to broaden your base.
When you call a meeting, you never how many will show up. Woody Allen said 80 percent of life is just showing up.
If the first cattle call draws in too many people, you can always split the baby at that point (I love talking in metaphors).
You should never count your chickens before they hatch (ask CJ about that one). I hope you have a wonderful turn-out and wish you the best of luck. God bless and peace always.

I agree with #5. If you need to broaden you could go with AUTO immune diseases ie MS, LUPUS, ALS, RArthritis.
Might be less people and narrower focus with only four major groups all which have immune systems wrongfully attacking their bodies.

GOOD LUCK and thank you for putting back into the world. Your a good person ( ;

I don't know if you'll want to use this info or not but I'll send it. If you don't like it toss it.

When neurologist Dx w/ MS said there was no connection to relapsing MS with foods, vitamins or allergies. He just said to take Rebif. After 9 months and 3 relapses things were not good. I changed diet to take out glueten from our family's diet, took multivitamin, 800 IU Vit D, Fish oil (+protects CNS)and ALA both to reduce inflammation. w/in 45 days there was a change. Lost 15 lbs, went 1 mph faster for a mile longer (could only do 1/4 mile 6 months prior) all withOUT foot drop. It has now been 2 1/2 years since last relapse!! Note never went off rebif.

So this would be my suggestion to someone who has been diagnosed with MS:

1. If you have been diagnosed with MS see an allergist to make sure your immune system is not on the offense against your body even when you are not ill.

2. Increase your FIBER to combat future constipation & eat extra PROTEIN to combat fatigue.

3. Consult a nutritionist to find out if FISH OIL, AlphaLipotic Acid(ALA), nuts & B complex vitamins can help protect your CNS and or reduce inflammation.

4. B12 taken as an injection or sprayed under tongue can reduce nerve pain. Enzymes make it useless to take it orally.

5. Vitamins you should be taking while on steroids to counteract what they leach from your body. IE Potassium, etc

6. Look into a product like 1/4 scoop (daily)GNC: Digestive Health Powder(AWESOME PRODUCT). It contains prebiotics, PRObiotics and digestive enzymes that help breakdown and absorb the nutrients from your food better. All your organs improve especially the largest one that takes more vitamins. PLUS it has fiber which is good for keeping your intestinal nerves strong enough to pass fecal matter even as some nerves are being damaged.
FYI
http://www.eczemamembers.com/clubportal/...
Bacteria and Eczema: Eczema is an Immune System Disorder (atopy), and 75% of your Immune System is found in your Gastrointestinal Tract where 3 to 4 pounds of bacteria reside.
You may NOT have eczema but 75% of your immune system in your gut does effect you

7. Read the European MS website to view their recommended best diet-see below.


http://www.msrc.co.uk/index.cfm?fuseaction=

show&pageid=39

8. Decrease the stress in your life and exercise.

9. Do NOT feel helpless there are things like the above that might help you. Knowledge is EMPOWERING so research the disease and countermeasures for yourself.
-Good Luck

Eczemaparent, I think the advice you offer is valid and given the nature of MS, it would behoove anyone to adopt a healthy diet.
Still, based on the nature of this disease, with its up and down cycles, I don't think a healthy diet only will cure anybody.
The fact that you continued your Rebif treatment is testament that you believe this as well.
In my case, it's just as important to avoid stress as it is to eat nutriously.
I also appreciate your advice on ezcema. As I said before, my eczema runs in my family, passed down from my father.
I had it since I was 7, finally clearing up when I became an adult. It was relatively mild and appeared on two spots on my legs.
Because I follow a holistic approach to my MS, I think I've been managing adequately.
Because I've had it all my life, I think I could have been in a wheelchair by now had I not taken better care of myself.
A full attack didn't occur until I was 47, so I had many productive years.
So my fellow MSers, don't dispair. A cure is on the way! LOL