Hi All:

What an interesting evening. I had hoped some of you would show up so you could taste my muffins. YEAH, I BROUGHT MY MUFFINS, AND THEY WENT IN FIVE MINUTES!!!! lol

Every one was very nice. We were around 16 people. Picture a very large conference room with a gigantic table, and big comfortable chairs. This was on the 33rd floor of the beautiful CBS Studios in NYC. The view of Manhattan was breathtaking. On the right of the room, there were carafes of fresh steaming coffee, Water to make tea, Bottles of spring water, platters of fresh fruit, and plates of fresh cookies. I never thought it would be like this. Every other support group I have been to (of course for other reasons), well, there would be an urn of coffee and some pretzels. And people had to bring their own baked goods. I have never seen a room where all this was left for us and then the cleaning girl came and cleaned up after we left. The whole floor belonged to a law firm and the lawyers graciously allowed us to have the meeting there.

How nice of them. And they provided all the coffee, etc. Now how nice is that???

Everyone there of course, had neuropathy. Many had CIDP and some were diabetic, like me, and the rest were Idiopathic. You should have seen me walk around the table with my little bottle of methylcobalimin. I mean, everybody was writing down Jarrow, Methyl B-12 and iherb.com.

NONE OF THEM HAD HEARD ABOUT METHYL B-12. Most of these people are on IVIG. One had done the plasmapheresis and it almost killed her. They had to stop 40 minutes into the infusion. She is now on IVIG and doing okay.

We separated in 3 different groups, there was a group with pain, a group who had no pain, and a group with balance problems. I was in the group with no pain because since I've been on the B-12, I'm much much better. I do have burning once in a while BUT NOTHING LIKE WHEN I STARTED TO HAVE NEUROPATHY SYMTOMS.!!! They were very interested in the B-12 information.

I also learned about Anadyne Therapy (spelling??). I am not familiar with this but one person swore by it. She's a diabetic.

There was a guy who was going to South Carolina in June to be DETOXED AND CLEANSED at a resort kind of place that specializes in getting rid of illnesses in the body. They detoxify you. I told the guy "get ready for a colonic". He laughed and said: "well, they didn't really tell me what I would be in for". I said "honey, anyplace that tells you they are going to detoxify your body, well believe me, they are going to make you sweat the toxins out of you and they'll clean out your gut. Everybody laughed. I encouraged him and said "let us know what happens". See I know, we all have to try what we have to try. Others pooh poohed the detoxifying and cleansing thing saying "what does that have to do with nerve damage??" I just said "he's going to do what he has to do".

One girl made an announcement, "you cannot regenerate nerves, no one has ever done that and it can't be done, we have to learn to live with what we have". I didn't open up my mouth. But everybody else was eager for new information ON ANYTHING!!! and many of them were writing it down about the B-12. I, of course told them, that it might work for me, but there's no guarantee it works for everybody. But we try, right???

They showed a clip of Angela Lansbury giving a promo about her late husband and how he had Peripheral Neuropathy. They are deciding whether or not to write a letter to Oprah's show (on official Neuropathy Association letterhead). I told them to contact the Ellen DeGeneris show too!!!

They want to bring the nation more awareness of Peripheral Neuropathy. They also want to see Stem Cell therapy allowed.

Some of them had the Sural Nerve biopsy. For one person, it was no problem, for another, well, it's been a year after she had it done and she still can't touch that part of her ankle. Gave me the heebee jeebies talking about it. But Alan said he would go for it if he had to. (By the way, he has his next IVIG on Monday and Tuesday).

They talked about Dropped Foot and special shoes and whether insurance covers these things. They especially talked about how you learn to balance yourself when you get up from the toilet. Many people, let's say they are crossing the street, and their shoes hit the pavement at a wrong angle, well, they can't get their balance back. And they don't know why!!!

They also talked a great deal about the importance of exercise when you have neuropathy. One guy told another guy, "you must go to a gym", you must move your legs". It's amazing how these people go about their lives, (one guy had the fentanyl patch), and still have time to laugh. And laugh we did.

Let me tell you, I learned a lot of stuff.

AND THEY GAVE OUT SOCKS. These are called FOOTHUGGERS COMFORT SOCKS. The package says "wicks moisture away, adds comfort and warmth".

So we all got socks and we are to report back on how they make us feel, when we attend the next meeting in June.

And they want more muffins!!!!!!!

We are VERY GLAD WE WENT!!!!! I do certainly hope some of you can come and meet up with us at the next meeting. It would be so nice.

Melody

I'm so glad you both got to go. I'm going to think about that view
tonight..Also glad you pushed the B12,we all need to do that. Sue

Glad you had a nice time Melody, and i am sure you will be welcomed with opened arms if you take your magic muffins in there every time , that poor girl is misinformed, nerves can & do regenerate, if they are in the right environment.
getting them in the right environment is the problem though, if diagnosed with idiopathic PN, but even a healthy diet, exercise and the right supplements has shown to help.
Brian

Hi. I'm glad it went well. I have been in many support groups for eating disorder/depression recovery. Group support is huge when your inpatient. I want to join when able to get out of bed more a pain group. I wonder did they talk about coping machansims? See in my treament in the other recovery which is so different I know but we work a lot on mental coping and how to get through the times like many here feel when you feel you can't go on. So I was wondering if they worked on that? A few things I find helpful right now is like journaling both mental aspects and physical so I can see a pattern,reaching out more in real time,doing small things for myself.It may sound stupid but I'm trying to keep a positive mental outlook though so so hard because I feel it can only help with the physical. As for the exercise I'm so far from that but I switched neuro cause mine was not good though highly recomended she said for me to to schedule times out of bed that I need to move more to heal just so painful. Yeah for muffins. I love muffins I wish I could come.

Since Alan was in the Pain Group that sat in another corner (about 7 of them), I just asked Alan "what did your pain group talk about?" and he just said 'oh we talked about the various pain killers that most of us have been given, like neurontin, elavil, lyrica, vicodin" Then he said "oh, and this is interesting. I learned that you can have a virus and then come down with neuropathy". (And this just might apply to Alan because many years ago, he was hit with something really hard, had to be hosplitalized with fever of unknown origin, they gave him every test in the book, they put him in isolation, but in 2 weeks, they discharged him and he came home very weak but able to be home. He stayed home and recuperated for 2 months. Frank was a little baby then. I rememember this because Alan got hooked on General Hospital and Luke and Laura.

We never got a name for that virus but Alan thinks it was either MONO or the Epstein Barr Virus.

Now about coping strategies for pain, Yeah, I forgot to mention that also. I forgot a lot of stuff hah??? lol. But I'm remembering it this morning.

I was sitting with the no-pain group and these people do not sleep at night. The majority of this no-pain group had balance problems but occasionally, when they went to bed, they would just lie there and stare at the four walls.
No one said they took any sleep meds. I admitted I take an alprazolam and then I sleep. I said 'you have to sleep"

This is what one of the recommended. Put the radio on or the tv when you go to bed. You then won't concentrate on your feet. She said "when you have nothing going on the room, all you will do is think about your feet, your numbness, etc. If there is something else going on in the room, then you'll be distracted. It's all about distraction.

Another man said to buy a White Noise Machine. My contributios was one of those machines that reproduce water falls, nature chirping. etc.
Then asked me "instead of taking a pill, couldn't you fall asleep to the sounds of a babbling brook"? I answered "if I heard a babbling brook in my bedroom, I'd be up all night". We all laughed.

Lots of good info last night.

Melody

I couldn't make it--had to tutor a nervous student.

I'm glad you were able to spread a little cheer, a little knowledge, adn a lot of muffins. I always wonder about the cookies at these meetings, though--one of my lines at the Cornell Weill Center is "with all the people coming through these offices with diabetic neuropathy, how come there are always so many cookies and so much candy sitting around?"

Part of the reason you are so invaluable at such meetings (beyond muffins) is that you have a great knack for telling a story--AND you can turn people on to websites such as this one. It's been my impression that many of the people who come to these meetings are not aware of the explosion of information to be had on sites like this (at least at first). I'm willing to bet a good number of the people in the room had not heard of Braintalk or Neurotalk or Rose or Cara or Mrs. D or David or Bob or Liza Jane or many of the other people who have set up websites or boards or become experts in so many areas. If they do know, or now know thanks to you, they will have greatly multiplied their support networks and become much more knowledgable about causes, treatments, supplements . . .

I do suspect that many of them are aware of the Neuropathy Association, which sponsors many of these groups, but while the NA website has a good explanation of types of neuropathy, their board and site is more difficult to navigate than many. And it is not the last word on neuroapthy knowledge.

An example of the need for "broadeneing" is the person who told you that nerves cannot regenerate; had I been there, I would have shown her the results of my successive skin biopsies.

I hope to make it to one of those meetings, and emphasize just how much info there is for the learning, and just how many people there are who have this problem and who are willing to engage. How many of them can boast they've learned about Australian Rules Football--and the medical system down under--by interacting with fellow sufferers?

WEll, you shoulda said you were bringing the muffins...haah....post when the next one is, ill try to make it. Manhattan is a hike for me, and it seems that every thing i belong to meets on thursdays. I had another meeting last night. I do like to get that concrete under my feet from time to time, and believe it or not i actually breath better in the city....too many trees out here, they are killing me. I wouldnt know which group to break into though, i belong in a few of them....thanks for the info.

I have had a home unit since January 2006. I used it every day for the first 3 months and then 3-4 times a week thereafter for about 6 months. I am pre-diabetic and I also swear by it. It is not cheap to buy, but my insurance company picked up two-thirds. When I am on my feet alot, the bottoms hurt. At night, I will then use the unit. It helps blood flow better. Here is a link where you can read more about Anodyne Therapy:

http://www.anodynetherapy.com/Products.htm

Diana:

Thanks for the link. I will certainly look into it. As of this morning, THANK GOD, my neuropathy is still not symptomatic AND I DO BELIEVE IT'S BECAUSE I TAKE 5000 mcgs OF METHYL B-12.

Glenn: You are so right: You said: "I'm willing to bet a good number of the people in the room had not heard of Braintalk or Neurotalk or Rose or Cara or Mrs. D or David or Bob or Liza Jane or many of the other people who have set up websites or boards or become experts in so many areas. If they do know, or now know thanks to you, they will have greatly multiplied their support networks and become much more knowledgable about causes, treatments, supplements . . ."

Do you know how many people wrote down the website url to Neurotalk. I made sure I let them know about resources on the internet.
But..... many of thse people were over the age of 70. One or two had computers in their homes but never went on the internet.

There was a dear older lady (she kept saying, "no one is letting me finish a conversation"." Because everybody had such information to share, we were all so excited, everybody was jumping in.

I told her. "if you have a computer at home, there is no reason why you can't go on the internet." She said 'but I'm old". I said 'so am I, I'm almost 60, and I don't plan on changing anything even when I'm 100". One guy burst out laughing. I told her "there is so much information on the internet and you won't find a better group of people than the people I met on the neuropathy message boards, they know the LATEST information". (Glenn, we need you at the next meeting, and I'll post when it is).

I told them, "I found Dr. Theirl on the message boards, I never even heard of a chiropractor/neurologist until I went on the boards". You should have seen everybody writing down Dr. Scott Theirl at Functional Restoration. Alan gave out Dr. Theirl's card and they were all writing it down.

Everybody there brought note paper and pencils. There were people approaching 80 and they refuse to use a "scooter" or a "hover round". They want to walk. The important thing is to walk heel first and then toe".

As a matter of fact, Alan and I just spent an hour over coffee in Dunkin Donuts (we have our own little place on the upper level) and I was showing Alan what the guy showed us about how to walk in the street when you have a balance problems. Most of the people there with CIDP have balance problems and they need shoes with BIG TOE GAPS. I didn't know what a BIG TOE GAP was until I went to this meeting. Most of the guys wore size 13 5E. It's amazing the similarities in people.

The diabetics there all had to lose weight. They were also in programs like the one I am in at Cornell.

I must say, I am definitely looking forward to the next one.

AND SO ARE THEY, THEY LIKED MY BLUEBERRY, MAPLE FLAVORED MUFFINS.
One guy said "no more muffins???" I laughed my head off.

I mean, how can there be so much pain, and yet we had room to laugh.

I think we all helped each other.

IF I remember anything else that happened at the meeting, I'll put it here.

Melody

For the past 2 months, I have been walking at least a mile almost daily. Sometimes at first, my feet could be hurting pretty bad, but then the farther I go it seems the endorphins kick in and I feel hardly NO PAIN at all for the rest of the day. Melody, have you experienced this at all with your walking?