Trials and Expectations

On Monday July 11th 2016, I will be checking in at Kaiser Redwood City for 5 days.  This time, I am going in on own volition.  I was reading up on post stroke treatments and there are many out there. Many of these options were not brought up by my doctors.  In my research,  I learned about the Intrathecal Baclofen Pump or ITB pump. Baclofen is a medication that I take that helps relieve the spasticity and tone that was the result of the stroke. In simple terms, spasticity is why my hands stay clenched or why my knee does not bend when I walk. I’ll get into detail about tone and spasticity on another post.

I have worked hard at getting to walk again, I can even try do a quick jog. But when I do, my left leg feels like it is wrapped in a cement block. By getting the pump, I hope that the tone on my leg would ease up enough so I could run again.  I won’t be in constant fear of falling on my face again,   and I wont be causing damage to my other joints.

This 5 day stay will be to determine if the pump is suitable for me.  The trial period involves the insertion of a catheter through my spine where the medicine will be delivered. During the hospital stay, they will determine if the medication is a good fit for me.  They will also determine the right amount of medicine that I will need. I am to get physical therapy twice a day to get an objective view of my progress or lack of. After the trial, if the medication is effective, I can decide if I will go ahead with the implant surgery.

I maybe putting too much hope into this trial. I am expecting that this trial will show that I will be able to run again. That my leg will function as it should again. That it will stop the painful spasms that wake me up in the middle of the night as if someone is tightening a vice grip on my thighs. I have very high hopes. After the trial period, I will have a few months to decide if I would want the surgically implanted in my abdomen with a thin catheter attached to my spine delivering medication.

The doctor has informed me that this method had worked very well for people with such high spasticity that they are not able to get up from their wheelchairs. In my mind, this sounded like this “if it helps people who cannot walk get up and walk again, then imagine what it can do for me!”. The doctor quickly burst that bubble by saying “you might not notice much difference in you” BUZZKILL!!!!

I am scared, I have high expectations, I am hopeful. If there is a chance that this will work, this trial is where I get to find out.

Please send out some positive vibes for me! Stay tuned!

 

Runner, Runner

Misunderstandings are the heart of many sitcoms. Anyone remember Three’s Company? Yeah it’s funny until it happens to you. Then you just have to laugh about it.  The first  night  in rehab, I had to use the bathroom and a  nurse came in to help me. As she helped me get out of bed, an alarm went off. Two nurses rushed in the room and asked if everything was alright. My thinking was still really fuzzy then so all the hassle just went over my head. The next day, as I was wheeled into the physical therapy room, one of the therapists was unbuckling me from the wheelchair. He made a comment on how I was double belted.

“what did you do?” he asked. I did not know what he was talking about. That evening,  I asked the doctor why my bed was alarmed. It had gone off a couple of times during the day.  I was curious. She told me that I have to stop trying to get up and get off the bed on my own. She threatened to place a safety enclosure over my bed to keep me in.  At this time, I still could not move the left side of my body.

This was the 'cage ' that was going to be placed over my bed if I tried to run away.
This was the ‘cage ‘ that was going to be placed over my bed if I tried to run away.

I could hardly feel my leg where did she think I was going to go? The next day, the pt once again said something while buckling me to the wheelchair. He also said that there is an alarm on my wheelchair. I wanted an answer. I needed to know the reason behind the tight security?

The answer made me laugh and to be honest a little proud of myself.  Someone the hospital had made a note on my chart that I  was a “runner“. The staff at rehab took that to mean that I have been trying to escape! I was flattered that someone would think I am capable of running away! I was also confused, where did they think I was going to go?

It took a couple of days before the staff lifted my security order. They had to wait for a team meeting, the doctors and therapists had to make a decision to ease my restrictions. It took two more days before I was given my “freedom”.