Many
of us who find solace within this site have been on the other side of a
diagnosis for a long, long time now. Others are still in their rookie
year. We’ve gathered a pretty broad spectrum over the past six months.
Multiple Sclerosis.
Yep, we just celebrated our 6-month anniversary here at the Life with
MS blog. I’d like to pick your collective brain for ideas to help the
next wave of MS newbies.
I make no secret about my connection to my local chapter of the
National MS Society(NMSS). It is an organization from which I have
taken so much, therefore, I do what I can to balance that account. We
are designing a new program, coupling with locally affiliated MS
clinics, to offer their new patients answers to the most important
questions after they hear, “You have multiple sclerosis.”
The plan (at least at this point) is to have monthly programs at each
of the six affiliated MS Clinics in the area. The docs and nurses at
said clinics are falling over themselves for this program. Our goal is
to make sure the patients get what they need. Here’s where I am
enlisting your help. Here’s where I need you to, ‘Think baaaaaaack’.
In those first couple of weeks and months, when you were still
spinning, still reeling, still wondering if your doctor really said
those words; what do you wish you had heard (other than, “…but it’s not
that big of a deal, MS is curable”)?
The way we have written the program thus far includes a clinical
overview by one of the clinic’s neurologists, medical information,
FAQ’s (including drug options and Complimentary and Alternative (CAM)
therapies) given by the nurse and then a presentation of client
programs and services offered by the chapter from a NMSS Ambassador.
That would all be followed by Q&A.
Imagine that you were to have been among the group of the wide-eyed to
take part in such a program, what would you have needed/wanted? If you
could impart some of your gained knowledge, what would you be sure to
pass along? If you’ve ever thought to yourself, “If only I’d known
that!” What was ‘that”?
Indirectly, by commenting here, you’ll be helping scores (yes, that
many around these parts) of people new to the idea of living with MS as
well as their families. Directly, you’ll be offering your experiences
to the hundreds who seek new information from each of us, here at this
site. Here is your chance to give back to your community. Don’t we all
look for that in life?
On behalf of those who will be served by your input, thank you!
Wishing you and your family the best of health.
