Sunday, June 28, 2009

Update/ Moving to South Carolina...

Hello everyone... or ANYONE who still checks this blog :)

This post, as with most since my return from Chicago, is long overdue. I apologize for that. So here is an update:

At the end of March, I had the ITB pump implanted in my abdomen. This is an electronic device connected to a catheter in my spinal column that releases a steady flow of Baclofen (my skeletal muscle relaxant of choice) into the spinal fluid. I have been on oral Baclofen for years, but oral Baclofen enters the blood stream and has side effects like drowsiness when taken at high doses. The process of implanting the pump was brutal. It requires 2 surgeries and I was bedridden for a week with the worst spinal headache I have ever experienced (I have had 2 lumbar punctures and both were accompanied by this dreaded side effect, so I consider myself a pro in this field.) Needless to say, once the headache/vomiting/ pain subsided, I had experienced an increase in muscle atrophy. This, in conjunction with my inactivity during my bout with shingles, had left my leg strength all but depleted.

That being said, I returned to physical therapy to regain strength in my legs. The pump was certainly doing it's job in reducing the spasticity, and my concern became getting too "jelly legged". So we began working on a slew of exercises to increase strength in my legs and core. This proved to be mildly beneficial for the month or so I was going. I had to stop because my Mom, Dad, Evan, and I are in the process of moving to South Carolina. In about 36 hours we will be on our way with our caravan of moving trucks!

Although I can only speculate, I think this move will prove extremely beneficial for Evan and I. I will be leaving the cold, spasticity increased, winters behind, for a climate of warm, relaxing weather. The heat can also have adverse effects on MS- causing symptoms to be heightened, and then returning to normal once the body has a chance to cool- but I am confident I will know how to handle this and also use it to my advantage. I will also have free reign of a 1 level ranch, with independent access to the outdoors. This is a huge advantage for both Evan and I and the part I am most excited about! Also, being able to utilize an in ground pool for more months out of the year is also extremely therapeutic and an exciting bonus!

Before I get carried away- I did return to Chicago to meet with Dr. B. on June 10th for my 6th month follow-up. He stated he "thought I was going to be his crown jewel of the study"- and has not lost hope. He t0ld me patients undergoing HiCy see maximum effects 2 years after the treatment is over- and pushed me not to give up and to keep exercising. I also started on a new and exciting drug. It is a compounded drug (not yet available by prescription at a regular pharmacy) and it is called Fampridine-SR. It's purpose is to "increase walking speed in people with MS". How does it work you ask? MS damages the nerves that send signals to the muscles, in my case, my legs. The drug is a potassium channel blocker that helps those nerves conduct more efficiently- in essence bypassing the damage, and sending the signal anyway. I am holding out a lot of hope for this drug (as with all new things) and already feel like I have more movement in my toes. The dosage will be increased over time and I will certainly be updating with any promising results.

That's all folks! I will be updating pictures soon to show you all my hair! Being bald was so effortless- but I do love my new do!

I hope everyone enjoys their summer- Take care!


  1. Tracy!! How great to get an update! I think you'll have excellent results with the Fampridine. I've been taking it for a couple of years and I have such good results that I call them "my walking pills." Good luck in SC.


  2. Thank you, Jane! Are you going for HiCy soon? If so, goodluck! Let me know how it goes :)

  3. Hi Tracy,

    Good luck with your relocation, and keep up the great work! I'll be looking for more updates here!

    Dr. John

  4. I hope you are still doing good.