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Living with Polyneuropathy CIDP, GBS, & CMT

Welcome To Our New Discourse Site


#1

Were you a member of our old CIDP, GBS, or CMT sites? Simply LOG IN with your old user name and click on “Forgot password”. We will send you a link to claim your old profile.

First time visitor? Please go to our Main Page to learn about Living with Polyneuropathy CIDP, GBS, & CMT
We are part of the Ben’s Friends Network, whose mission is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. We’re glad you’re here


pinned globally #2

#3

I’m not very computer savy and felt I have neglected to be of help even though tried to be active but i really do not navigate on computer very well! Please forgive my absence but this new page is not so user friendly to my none computer brain.

I’ve also had lots going on in our family life! Have had a new great grand baby, and two new grand babies in the past year as well as three weddings and a death.

I still am willing but I truly am lost. Do not feel I can be active support at this point. Either someone needs to walk me through all this or I should step down.


#4

CM, thanks for checking in. Seenie here from Mod Support. I’m the “old girl” of the team. (Just to give you an idea, I learned to type on a manual typewriter. It was black. That is how old I am.) When I first saw the new set up, I felt very similar to the way you probably do now. I was lost as well. It does take a little getting used to, but I’m feeling much more comfortable now. A few hints from an old girl:

Lesson 1: Start at the page called “Latest”. That’s all the conversations that are going on, from most recent to ancient history. (The same “latest” list also appears on the page called “Categories”)

Lesson 2: Clicking on a user’s avatar gives you a brief profile. Clicking on the next avatar that appears will show you everything that they have posted.

The system also has some amazing features that are best left for you to discover. When you’ve got Lessons 1 and 2 onboard, just experiment with things and icons and you’ll be surprised how quickly you will catch on. (I was, and I thought I was a hopeless case.)

Hang in there! And don’t apologize for not helping: the migration was done by a small and skilled group of people. (I was no help either, LOL.)

Seenie


#5

Thank you so much Seenie!
I do learn by hands on but always feel intimidated when have not done something before! I love being a help and support in any possible way I can so I will keep moving at a pace and hopefully start being more comfortable.


#6

Thank you so much . Many were not aware of this horrible disease . There was much discrimination against me for not being well like others that took PegIntron . I was treated so badly . I will never forget the health care I received . Marita