2 months after second procedure and still improving!
Posted: Fri Oct 01, 2010 6:25 pm
Hi all,
I still pinch myself everyday that I feel so well. May I share my latest accomplishments with you? From my most recent blog post:
Yesterday was yet another wonderfully productive day in what seems to now be my new "normal" life. I woke at the ungodly hour of 6:30am to get the kids off to school. I had breakfast, showered*(see note below), then met my mom at the mall to help her shop for a robe. When the first department store did not have what we were looking for, we decided to try another. I can walk with confidence (still carrying the cane for safety) within a giant department store these days, but schlepping from one end of the mall to the other is still not a good use of my energy. We drove to the other store.
Once inside we ran into my aunt. She was there to meet three of my cousins for lunch. We joined them for a lovely impromptu family eat and gab fest!
After we ate my mom went home. I decided to stay to do some shopping for me. To put things in perspective, I could not even walk from the closest handicapped space in the parking lot to the front door of this store pre-Liberation. Now here I was going from one store to another, shopping, dining, then doing more shopping! I tried on many pairs of pants and stood for the seamstress while she pinned them to be hemmed. Did I mention that I showered in the morning, too?!?
I have very rarely shopped in an actual store for myself in the past couple of years. If I couldn't find something online with free delivery and a liberal return policy, I didn't buy it. Sound familiar?
When I was done I was tired, but my legs weren't burning or aching. I was not beside myself with cognitive fatigue either. It was just plain "I've had a long day" kind of tired. I carried my purchases to the car, climbed in, and sat there for a minute with a huge stupid grin on my face. I still can't believe that I can do so many things that I once thought I would never do (without a mobility device and a buddy) again.
I have also had a dramatic improvement in my spasticity over the past two months. Before my second procedure I was taking 20mg of Baclofen three times a day. I would need to stretch every time I stood up, and my first few steps were always jerky. Even with that much Baclofen, my legs ached constantly, and I spent many evenings with my left hamstring resting on a heating pad.
Now I am down to 20mg in the morning, and 10mg at bedtime. I am getting ready to cut the morning dose to 10mg and see how that goes. My legs still get tight during the day, especially if I have been sitting too long. But instead of needing a pill, I walk around a little bit and my muscles loosen up all by themselves. I have been dealing with spasticity for at least 13 years. I never thought my nerves would be able to heal enough to see this kind of improvement! I assume that healing is happening. I don't know how else to explain this amazing improvement. I may never know what mechanism is at work to make these changes possible. I am just committed to appreciating and documenting them for you, Drs. Haskal and Tornatore, and myself. One day someone smarter than I am will be able to tell me why this is happening. For now I'm just enjoying it all.
Happy Autumn everyone!
* Showering has long been an evening activity for me. The heat of the water, standing for 10 minutes straight, and using a hot blow dryer used to act as a knock out punch. Night, night, Nicole. Now I can shower in the morning and still have strength and stamina to do other things, too! Incredible!
I still pinch myself everyday that I feel so well. May I share my latest accomplishments with you? From my most recent blog post:
Yesterday was yet another wonderfully productive day in what seems to now be my new "normal" life. I woke at the ungodly hour of 6:30am to get the kids off to school. I had breakfast, showered*(see note below), then met my mom at the mall to help her shop for a robe. When the first department store did not have what we were looking for, we decided to try another. I can walk with confidence (still carrying the cane for safety) within a giant department store these days, but schlepping from one end of the mall to the other is still not a good use of my energy. We drove to the other store.
Once inside we ran into my aunt. She was there to meet three of my cousins for lunch. We joined them for a lovely impromptu family eat and gab fest!
After we ate my mom went home. I decided to stay to do some shopping for me. To put things in perspective, I could not even walk from the closest handicapped space in the parking lot to the front door of this store pre-Liberation. Now here I was going from one store to another, shopping, dining, then doing more shopping! I tried on many pairs of pants and stood for the seamstress while she pinned them to be hemmed. Did I mention that I showered in the morning, too?!?
I have very rarely shopped in an actual store for myself in the past couple of years. If I couldn't find something online with free delivery and a liberal return policy, I didn't buy it. Sound familiar?
When I was done I was tired, but my legs weren't burning or aching. I was not beside myself with cognitive fatigue either. It was just plain "I've had a long day" kind of tired. I carried my purchases to the car, climbed in, and sat there for a minute with a huge stupid grin on my face. I still can't believe that I can do so many things that I once thought I would never do (without a mobility device and a buddy) again.
I have also had a dramatic improvement in my spasticity over the past two months. Before my second procedure I was taking 20mg of Baclofen three times a day. I would need to stretch every time I stood up, and my first few steps were always jerky. Even with that much Baclofen, my legs ached constantly, and I spent many evenings with my left hamstring resting on a heating pad.
Now I am down to 20mg in the morning, and 10mg at bedtime. I am getting ready to cut the morning dose to 10mg and see how that goes. My legs still get tight during the day, especially if I have been sitting too long. But instead of needing a pill, I walk around a little bit and my muscles loosen up all by themselves. I have been dealing with spasticity for at least 13 years. I never thought my nerves would be able to heal enough to see this kind of improvement! I assume that healing is happening. I don't know how else to explain this amazing improvement. I may never know what mechanism is at work to make these changes possible. I am just committed to appreciating and documenting them for you, Drs. Haskal and Tornatore, and myself. One day someone smarter than I am will be able to tell me why this is happening. For now I'm just enjoying it all.
Happy Autumn everyone!
* Showering has long been an evening activity for me. The heat of the water, standing for 10 minutes straight, and using a hot blow dryer used to act as a knock out punch. Night, night, Nicole. Now I can shower in the morning and still have strength and stamina to do other things, too! Incredible!