
Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.

deleted_user
But i need your advice...
It's going to be at a lovely cafe which the owner agreed to and even said i could use their stage and microphone...
BUT
i was wondering
Should it be an MS support group
or a neurological disorder support group?
This is how the neurological disorder support group ad would read:
are you or anyone you know affected by a chronic neurological disorder? For years neurological disorders such as cerebral palsy, Multiple Sclerosis, Parkinson's Disease, stroke, Traumatic Brain Injury, Brain/CNS tumors, Epilepsy and many other conditions have been troubling normal people like you and me for years. Come to _________ @______ on ________. We will be holding a support group for people with or family and friends of people with a neurological disorder. Friendly atmosphere, everyone is invited.
It's going to be at a lovely cafe which the owner agreed to and even said i could use their stage and microphone...
BUT
i was wondering
Should it be an MS support group
or a neurological disorder support group?
This is how the neurological disorder support group ad would read:
are you or anyone you know affected by a chronic neurological disorder? For years neurological disorders such as cerebral palsy, Multiple Sclerosis, Parkinson's Disease, stroke, Traumatic Brain Injury, Brain/CNS tumors, Epilepsy and many other conditions have been troubling normal people like you and me for years. Come to _________ @______ on ________. We will be holding a support group for people with or family and friends of people with a neurological disorder. Friendly atmosphere, everyone is invited.
Posts You May Be Interested In
-
I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
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 :-)
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)
so would be very interested in your progress on this..
hugs
heather
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.
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 ( ;
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
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