6 week update

I hope everyone enjoyed learning about Georgetown's Liberation study (it's official, with IRB approval and everything!) on the channel 9 news piece the other day.  I know that I learned a lot about his plans for me from watching the unedited footage of Dr. T!  Not the best way to get info from your doc, but this thing really began coming together after my procedure.

And how cute are my girls??  They were so excited to be on TV.

Anyway, it has been just over 6 weeks since Liberation.  What's happening?

All of the good stuff is still here:  warm fingers and toes, no choking, sharp mind (and wit!), much less cognitive fatigue.  My better balance has made a reappearance, I am happy to report!  Unfortunately, my legs are so weak that improving balance can only do so much on noodle legs.

I'm working on them, though!  I am getting on my stationery bike, and doing my exercises to strengthen my core and hip adductors (I think that's what you call the muscles on the outside of the hip).  I'm a speech path, not a PT, so that is not my area of expertise.

I learned from my PT that my muscles will only get as strong as my nerves will allow.  Frustrating concept.  But if I do everything I can do for the muscles, hopefully my body will begin healing the nerves, and meet me somewhere in the middle.  I am totally making this all up, but it keeps me going!

I am not speaking without some precedent.  I was on Tysabri, an MS drug that worked wonders for me until it stopped after 2.5 years:0(   I regained soooooo much strength and stamina in my legs that I was able to give up my cane and scooter and walk around my whole block!

Dr. T. believes that if I did it once, hopefully my body can do it again.  I have nothing to lose by believing, so I believe!

BTW:  I have had the pleasure to "meet" two more people who are scheduled for Liberation at Georgetown this month. One is a woman, R., who found me as a result of the AP article, and a weird coincidence of knowing one of my daughter's friends. The other is the mother of a 21 year old man who was diagnosed last year.  Same age that I was at diagnosis.  I hooked up with her online.  I can't imagine having the chance to nip this thing in the bud at his age!  I am so excited for him, and what this may mean for his future.

Dr. T. told R. that they are going to treat a total of 20 patients in this initial study.  He will follow us for two years.  I now know four of us who have gotten "golden tickets".  If you listen closely to Dr. T's unedited interveiw, as I have done many times, he leaves the door open to treating more patients before the end of two years if our results are impressive early on.  I'm working on it, I promise!

I may be reading into it, but check it out yourself and see if you hear it like I did.  I just want as many people to have the opportunity to try this as possible.  It is such a simple, low risk procedure. 

I appreciate the need to do it within controlled trials.  But that is easy for me to say after the fact.  If I was still on the other side, you can bet I would still be spending every waking hour hunting down doctors who are willing to treat this!

There was a fascinating meeting yesterday at the American Academy of Neurology.  It was broadcast on the web by the National MS Society.  You can see it here.  One of the most important things to come out of it was a plea from Drs. Zamboni and Zivadinov.  They both advocated that, for people who have run out of drug options,  Liberation should be allowed, even outside of a trial.  They stressed that it should still be done in cooperation with the person's neurologist, and a qualified IR or vascular surgeon.  These people should NOT have to wait.  Bravo!