We went to the PN Support Group last Thursday
 

Hi, just wanted to update you on what we talked about at the meeting.

By the way, it's held on the 3rd Thursday in NYC at the CBS Building. Either on the 33rd or 34th floor. You have to check with the man at the front desk.

So if any of you live near NYC pop in (the next one is April 15th) from 6 to 8 but we usually get there at 5:30 p.m.

It's a nice group of folds (we had about 20 at the last meeting and that's a good number for us to have).

We all went around the table and introduced ourselves (because new members come all the time). And we all share our experiences with neuropathy, and with foot appliances and what meds some of us take, and Methyl B-12.

They were all writing down the info on Methyl B-12. I always give Mrs. D credit for that one. Some people have computers and some don't and many are over 70 so they are not going to be going on message boards but some actually do. Some are in their late 80's and they really have been through it all.

These people have neuropathy for many reasons. Some have underlying auto-immune, Some have had radiation and got neuropathy from the radiation. Some have had chemotherapy and got neuropathy from that. Some have been drinkers, some are diabetic.

There was a guy there who had this underlying auto-immune connective tissue disorder and he also had neuropathy. They did not know why he had neuropathy.

I asked him. How long do you have neuropathy? and he said "oh a few years now", I then said:"Were you at the site on 9/11?" and he said "oh, wow, sure, I was one of the first responders".

I then said "Quite some time ago, my husband had gone to a physiatrist, and the first question she asked Alan was "Were you at the World Trade Center on 9/11?" and we said "no why?" and she said:

"You have no idea how many people who responded, are now coming down with Neuropathy"

So it gave this guy something to look into.

It's a very diverse group. And we learn new stuff every month. And one person's experience with Lyrica and Neurontin is completely different than another person's experience. Some take opiates. Some take NOTHING. Some of them are on IVIG.

And at next month's meeting a representative from an IVIG company is going to speak. And in the following months we are going to have two doctors come and speak.

So all in all, it's a great support group and we have various people come and make presentations.

Of course we all want to find a cure for neuropathy, but until that day arrives, people are trying to learn to cope with the pain and numbness from their own form of neuropathy.

Some are cranky, some are in pain, some are numb. All have their stories.

Some people use walkers, some use canes, but most just walk in on their own.

And next month I will be bringing my balance/wobble board and giving a demonstration on improving one's balance.

Now that shall be a hoot.

So, if any of you can come, do try and make it. You'll see me and Alan and you 'll taste my muffins.

And one guy even brought a cake that he made. The law firm that gives us the big meeting room always supplies coffee, tea, fixings, etc. and cookies.

It's a very nice law firm that donates this room once a month to our group.

Take care,

Melody

save me a muffin!
 

Mel,
Hope to make the one in April. The wrist is healed at last!
Thanx for the heads up.

Ever try....
 

balance discs?
http://www.nefitco.com/balancedisc2pack.html These can give you a good and safe workout providing you have something to hold on to at first. And they move ALL muscle groups. Just learn to use them safely.
Here is the whole 'menu' of 'boards' and such this place has. It's pretty cheap and fair w/shipping etc.
http://www.nefitco.com/balanceboard.html
Thing is...don't do this without professional instruction.... safety if foremost in the use of these things, especially if YOU are wobbly! It becomes more important then! - j

this is the one that I have.
click on this, you'll see the guy demonstrating it.
That's how I learned what to do on mine.

http://www.youtube.com/watch?v=BPMEj-jeH9w

I can turn around, and balance on one foot. I brought it over to my friend's last night and we all got hysterical. Some of them got on it, some wouldn't go near it.

For balancing, this is the one of the best things I could have ever done. I have no problems whatsoever with balance. I don't have to hold on to anything.

Once I get really good at this, I want to get the newer ones, where it's like a skateboard with this rolling thing underneath and you go from side to side.

That one is VERY different from a wobble board but it's a great exercise.

But little steps one at a time.

Now if Alan would only try this, (while holding on).

We'll all probably have a great laugh at the next PN support group meeting.

I'll try and take pictures.

Melody

I have those balance disks....I have the multi-colored stepping stone like ones. I also have little color coordinated frogs to pick up...lol. I am easily entertained. Yellow stone, yellow frog....blue stone, blue frog....:o

I want to enter some Balance board olympics. I've never won a medal.

Maybe we should invent some balance board contests and people would then start balancing.

My brother in law said it best. He told me years ago "Melody, people practice walking, running, sit ups, pushups, etc, BUT NO ONE PRACTICES BALANCING.

I never took him seriously. I do now.

Melody

Thank you so much Melody for sharing the meeting you have there.
i wish i could attend them, specially to have a chance to taste your muffins :)
what a great iniciative have these meetings! its empowerful for everybody. England needs urgently to promote awareness about Neuropathy and provide support for PNers patients.
:grouphug: a hug for all of you
lots of love
Carla

Well HELLO ENGLAND!!! Tally-HO

I always wanted to say that to someone from the United Kingdom.
I have a funny story to tell you. Many many years ago, I worked in a company with people from England and from Scotland.

My friend Mary came in one morning and told us the funniest story.

She was in a hotel and she asked the front desk to "knock her up" every morning. We all burst out laughing. When the guy at the front desk laughed too, he explained what "knock me up" meant. I gather in England it means "give me a wake up call". It doesn't mean the same in this country. lol

Then I remember being in the elevator with her and asking her "What's it like to have a Queen?," and she said "And we have a Queen Mum"

I was fascinated by all her stories.

So glad I make you smile.

You take care and feel good.

I tried to PM you to explain further but you're a visitor. I guess I can't PM visitors. Hope you join Neurotalks.

Melody

hello America!!! i love that too, good morning America!!! what a powerful name and country.

i had a good laugh with the stories. but i have to tell you, im not english, im a brazilian living in England. and i have loads of funny stories like that. well learn a new language after certain age is not that simple, and over Brasil we mainly learn american english at school. imagine the confusion plus my acent hahaha
a real Queen, its fascinating really, in Brazil we just have carnival queens once a year and plenty of drag queens :eek:hahaha.

thank you once again Melody, i didnt know that my status was visitor and that i have to join. its the first forum im participating, i need to learn and not to be shy. shy to write, ask and share, and also i need not to worry to make mistakes on writing. i will join for sure! i just sent a message to Forum adm to help me.

well i feel really happy to be on Neurotalk and be able to exchange messages with you. not feel alone in the cold and lonely England. Hope in the future here we can have meetings too, i live on the middle of England, i just need to make some changes in my life and find the right partners to organize this.

have a good night:hug:
besitos
your brazitish friend Carla

Well instead of Tally-HO I shall say

OLA!!!

I speak a bit of spanish. Around here, you HAVE to speak languages other than english if you want to order breakfast (which I do in Arabic), shop in the chinese store (which I have learned a few words, like Thank You,, etc.). I have to learn cantonese. I can do this, I have an EAR for languages.

And the best was when I take the Access-a-ride anywhere. In America, in whichever state you live in, if a person is disabled, they can travel by special buses, which pick you up at your door and deposit you at your destination. Here in NY it is called Access-a-ride. This is all going to change soon because they are stopping the door to door thing.

But every time a driver comes to my house to pick him up, and I sit on the bus and then they are talking to their dispatcher and I can hear their accent, I start speaking to them in French.

WELL!!!! You should have seen their faces. I laughed so hard. One guy thought I was born in France. Now I can speak french but no one would mistake me for a french person. But I laughed.

And every single day I learn a new phrase in Arabic. Yesterday I was out with my husband and we met up with a friend who is from French Morocco. My husband had never met her and I was going "Je voudrais presenter mon mari", which translates to "I'd like to introduce my husband", and I'm speaking French and my husband says to me "what am I supposed to say to her". and I said "say it like this: ' ON SHON TAY" and he says it and we all burst out laughing and I said

"She speaks perfect english by the way". We laughed ourselves silly. I try to make Alan laugh every day because neuropathy can wear you down.

So we try to find something funny to laugh about.

Life gives you lemons so you make lemonade.

So hope you join soon and start posting. We are very friendly here and we like to help each other.

Take care,
melody

psst....they speak Portuguese in Brazil not Spanish.

Yeah, I know lol
But she ended the paragraph saying "Besitos" and that means Kisses, right? in Spanish? right?

or did I get this wrong??


lol lol lol

Bom dia Mel, good morning!!!

Im calling you Mel which means "honey" in portuguese, sweet like you.
So Mel, you are right "besitos" means kisses in spanish, i wrote because i knew you would understand. big spanish speakers community over there!
Cantonese, arabic wow!!! Congratulations! its really good for our brains and exciting learn a new language. and its so beautiful when we find out similarities between languages, telling us that we are one, in the end of day we all came from same roots...:grouphug: Im trying to learn greek :confused: and every lesson is a laugh.
Laughing its such a good medicine! we should do it more, like when we all used to do as a baby, spontenously healthy laughing, free of stress :D
I would love to share an article of Jess Weiner "What makes you beautiful?" laughing is on the list!!! Such a simple recipe: case of giggles + honesty and snuggles. You can find the fully article on her website.

Mel your daily "silly" laughing with Allan make you a beautiful couple! and its so nice to read your posts and see the support you provide to him. Caring for our loved ones is a task that is priceless. My partner is kidney transplanted, and we are caring each other for almost 3 years now. Even having different health issues and different symptoms theres a point where we find common symptoms ... like the feeling down you mention. so at times like these we laugh silly! and we become healthier, happier and according to Jess: beautiful, i trully agree with her. a daily spa for the heart, soul and body.


Im writing a topic later, im putting the idea together to be clear and get the group to participate too. I joined Neurotalk already, but in order to change the visitor status i have to post more. here i am:D

Lemonade its perfect when we are thirsty. Im drinking "spring" at moment, feeling much better. The winter makes my neuropathy so bad. the grey sky so depressing. When the weather its cold my leg feels like a stone. thanks God that life is cyclical, and we can notice differences outside there and spring are here to make us colourful and happier inside.

have a wonderful day Mel and everyone who is reading this post
beijos, besitos, bisous, filakia :hug:
Carla

Well--
 

--Spanish and Portuguese are the two most closely-related Romance languages; I think we can excuse her.

Now if she starts speaking Roumanian . . .:)

Hello Glen,
hope you are well
no Romanian isnt on my list yet hahaha. i was told that when we speak a second language its easier to learn a third. well i dont think is that easier after 30's and with all the neuropatic pain and symptoms but im insisting!
yeah portuguese is close to spanish, but i would not manage to live in Spain, i feel completely lost listen to them, the spanish from Cuba and some of south american countries is closer to brazilian portuguese. Spanish is beautiful and sounds so passionate.
ah! and also i need real concentration to understand portuguese from Portugal.
thank you for this conversation Glen and Mel, its not specificly about PN but you make me feel really comfortable here. thank you so much
take care
besitos

Someone might want to move this to social chat or something because I don't want to get in trouble talking off topic.

This is my final post off topic.

You mentioned GREEK (well, somebody mentioned GREEK!!)

The other restaurant I go to in the a.m. is a Greek restaurant. So if I go to Dunkin Donuts, I walk in saying "Salaam Aleeekum (pardon spelling, I'm just doing it phonetically here) (I think it means Peace be upon you), then I say "Yom Gamil (It's a nice day), then I say MedFudLuck, (which means Please), then I point to the veggie white thing, and I say "Shokran, and MaSalema, which is Bye, and everybody laughs and I have just ordered my breakfast in Arabic. If some of them speak french, then we all speak french.

But, when I go instead 7 blocks away to the Greek Restaurant, then I walk in shouting 'YASOOO", which means a hearty HELLOOOOO in Greek. And when I finish paying for the meal, I say "Ef Hatistoo (Thank you), and Dimitrius says "parakaloh", which I gather means You are Welcome.

I can navigate in a few languages. I did have a Romanian Boss once. He was gorgeous. Couldn't learn his language. Too busy looking at his face.

I mean, give me a break, I was 24 years old.

lol lol lol

No more silly off topic talk, I promise.

Melody

HI Melody!
 

HI MELODY!!! Remember we met on Access a ride a few years ago. I live on the UES> I am back on the board now... How ya doing and Alan? I am so sorry that I missed the meeting this week. I will definitely be going on April 15th. I have been so ill with this drek. I am off now to Dr. Jonathan Charney who is great... I am surprised I never saw you at Whole Foods. Always there. Drop a note. Best, Robin

Hi. Yeah, I remember you. Glad you'll be coming to the meeting on April 15th. The reason you won't see me at Whole Food is because I don't live near there. I happened to be there because Alan had a doctor appointment. I wish there was a Whole Food near me, but I grow my own stuff, so I'm good.

Anyway, good to hear from you. See you in April

melody