Writing about the TSC experience

June 13, 2005

----- Original Message ----- >> Our proposal was accepted and we will be

presenting two sessions at the

>> conference. My parts will be on aging with SB, tethered cord, and

>> depresson.

>>

>> But the exciting part is that 's doctor's at Mayo Clinic are

>> intersted in seeing me, and I have an appointment with her PM & R doctor

>> next Tuesday! I now have the freedom to do this, as I'm now on Medicare

Hi

Glad to hear that you'll be seeing a new specialist with " new " eyes.

Hopefully he'll be able to give you some insight into what is going on and

causing the most problems for you.

I haven't been able to keep up with the list at all and this is the first

I've heard of your writing about your experiences and presenting them at a

conference. This is absolutely wonderful news. I hope it works out that

something will come of it. Which brings me to my question: What is the

purpose of your lecture and who will you be presenting to? What are the

goals and objectives? Who is your target audience? Will you be using your

experience alone or in conjunction with others that have helped you with the

book you spoke about?

I think it's so terrific that not only will you be talking about SB, but

also tethered cord, which IMHO is somewhat not in the SB organizations

priority list (again, IMHO.) I know when I used to contact them about

Lipomeningocele I was blown off and basically told that that was a side

effect of SB and something that was not what they concentrated on. I tried

explaining that although tethered cord can be the result of SB, that there

are other neural tube defects out here that are not the result of SB

diagnosis and surgery at birth or shortly thereafter, but instead a

condition in of itself. I truly hope you're able to get that point across

if not about LMC, at least about all the other conditions that are not SB.

Hope all goes well and you hear some positive news about yourself and able

to maybe get some help.

Kathy

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