Pain/wheelchairs/publicity/new forum look/is it just me?

[Guest guest]

Hi all- thanks for being here. I'm going to respond to several posts

in this one, because it seems easier and I can keep better track of

things that way. I also have a question for the group and a message

for Gretchen.

I have occassional pain that is overwhelming for short periods,

especially in my hips and the bottoms of my feet. I typically can get

relief from on OTC pain med. However, my wife has intercostal

neuralgia. She has tried just about everything, including Neurontin. A

very good medicine for many people, together with the other meds. she

was on at the time, she was essentially absent for around a year. I

watched her pull our van in to on-coming traffic, because she was so

out of it. Now, her pain is controlled the best it has ever been by a

combination of Celebrex and Cymbalta. She tried to get off the

Celebrex, due to the dangers, but has chosen to re-start it, because

of what it does, in combination with the Cymbalta, for her pain.

I am in the early stages of looking at scooters. I test drove two on

Friday. What a relief! I was moving confidently and not being afraid

of falling and not being fatigued by the mere act of walking!I have

used a cane for about one year. I still fall and I am always tired

when I am on my feet a lot.

Go ! The more the news gets out there the better. You have the

skills to really help us.

I attended an MDA adult support group meeting last night. One of the

problems I have had with MDA and the telethon has been what I perceive

to be an attitude toward those with the disease as our being " special "

and " heroes " in a demeaning way. Last night, a person from their

fund-raising department attended the meeting. She thanked us for

letting her attend the meeting. She went on to say she was inspired by

our stories and that she sees us as very special for persevering in

dealing with our diseases. I had that same feeling as I often get at

MDA events, that I am somehow less than, because of my disorder. I

certainly do appreciate the work MDA and others do to promote research

and good medical care.

My question has to do with my perceptions of this. Am I being too

sensitive? Should I just say thanks and move on? Do others feel

demeaned by well-meaning people? Thanks for your feedback.

Jim

Gretchen- my email is chronically down, so I am going to reply about

the new forum look here. I am still having trouble getting to

messages. Sometimes I get them simply by clicking directly on them.

Sometimes I click on them, get a blank message screen, click on the

Messages again, then hit backspace and get the message. Kind of a

pain. If you want to edit the note to you out, before posting it, go

ahead. Thanks.