As for the results -- everyone in TMA is going to see these results. How and
when is uncertain. It is going to take me some considerable time to get all
of this information coded and entered, and the analysis is going to take some
time, as well. There are a number of possibilities. One is to provide some
results, as they are identified, in the newsletter (which I am going to try
to get out twice a year -- the next in July); another possibility is to get
a report completed that presents the entire piece of research. And another
possibility is to do both. I will keep you posted on what I'm doing with
this research -- but be assured, you will see all of it.
As for the insurance questions; I read the first posting about the Workers
Comp claim last weekend and did not respond to it. I wanted to think about
it for a while. I read all of the responses that were posted in the last
week. I have been reading the posting on tmic since August and I have been
looking at the surveys as they come in. I have also been listening to
Pauline's doctors for the past two and a half years discuss her case and
answer our questions. My only conclusion is that there are lots and lots of
questions and no definitive answers. I do not believe that there is anyone
who is presently going to make the insurance issue a black and white issue --
it looks all very grey to me (and that is me, Sandy, the human being -- not
me, Sandy, an officer of the Transverse Myelitis Association). So, to make a
long story longer -- I would be very hesitant to offer information or an
opinion -- in the context of that information or opinion in some way being
interpreted as coming from the TMA. (Ok, I think that was wishy-washy
enough). I also want to thank everyone who engaged in the discussion about
this issue over the past week. All of us are acutely aware of how important
the insurance issues are -- there were many times when I had to become the
gladiator to handle Pauline's issues.
A final note -- I wanted to publicly thank Jim for putting together the
Transverse Myelitis Association homepage. This is another great opportunity
for us to do some outreach so that we can help others know that they are not
alone out there. And this reminds me of another final note -- I have been
reading postings from people who are communicating on behalf of friends and
family without Internet access. A suggestion -- I would encourage you to
help them to a public library. Call first to confirm that they have the
internet access and it would be great to try to make an appointment or
reserve the time on the computer before you get there -- particularly if your
friend or family member is having mobility issues to deal with. Then use the
archives address that Jim has created to get them into all of the postings.
These can be read by subject. They can also get into Jim's disAbility page
and look at some of the resources he has put together. I don't know what
policies libraries have these days on the internet, but your friends and
family members might be able to establish accounts and send and receive
e-mail through the library. This is all worth a try, and besides all of the
information they are going to find out -- making these contacts for
themselves is going to be good for their minds -- and bodies.
Hope everyone is doing well. Hang in there.
sandy