Botox

From Jenny Sue Got Married, originally posted on July 27, 2011.

Al continues to have increased tone and spasticity in his muscles, specifically in his left arm. The correct term would be "hypertonia": the increased stiffness of muscles, and the resulting inability to stretch. Spasticity is related to tone, and what it means is that trying to stretch muscles in a state of hypertonia often results in the muscles rebelling and contracting excessively. Sometimes, if a muscle is stretched too fast, it can lead to clonus, which is when the arm or leg shakes uncontrollably.

Here is the frustrating part: we usually loosen up stiff muscles by stretching them. For a stroke survivor, though, the stiffness is not only dependent on the muscle itself. It is actually compounded by the damage to the brain. So the brain is not communicating with the muscles so that they behave correctly. I can bend and flex Al's arm repeatedly, and instead of loosening up, it tightens more and more as I go on. It's very frustrating because I want his muscles to behave like muscles should.

Botox would be a remedy for the stiffness in his muscles, but it would also likely weaken his muscles. It seems that every medication available for stroke damage offers the same 2-edged sword - yes, it will help control the tone and spasticity, but it will most likely cause muscle weakness at the same time. SO frustrating, since we obviously want Al's strength to increase, without having to overcome the muscle stiffness.

We're not at the point that he will be taking botox injections, but herein lies the difficulty of stroke rehabilitation. Not only do we have to hope and pray that Al's brain can reconnect with the left side of his body, but he has to work extra hard against the rebellion of his muscles.

The Electro-Stim Sleeve

This electrostim sleeve was made by Phil Muccio at Axiobionics.  (Side note:  Phil created electrostim equipment for Christopher Reeve after his paralysis.)  At first, we were interested in the Bioness H200, but the Axiobionics sleeve is much more comprehensive, targeting several muscle groups in Al's arm.  We are still interested in the Bioness L300 for Al's leg, but that is fodder for another post.

So, Al has been wearing this sleeve since around Christmas time.  He built up from 1 hour a day to all day, so now he wears it most days.  It exercises his "affected" arm for him, stimulating different muscle groups to keep them from atrophying and to hopefully help the return of voluntary movement.

One of the problems that Al has with his left arm is not only that it is still mostly paralyzed, but that it gets extremely spastic, especially when trying to exercise it and loosen it up.  Unlike stretching your muscles under normal circumstances, where the muscle would warm up and become more supple, stretching a spastic muscle sometimes results in increased tightness.  So, the electrostim sleeve forces his muscles to bend and work, basically by firing them and overcoming the spasticity with force.  There are 3 sets of electrodes:  one that flexes his hand, one that straightens his arm, and one that stimulates his shoulder muscles to strengthen them and prevent subluxation, the partial dislocation of the shoulder joint.  Subluxation is very common after a stroke because the affected arm just "hangs" loose instead of moving like it is supposed to, and it can be pulled out of its location.

The problem with the electrostim sleeve alone is that it is merely forcing the muscles to fire and overcome the spasticity.  For Al, it is his flexor muscles that tend to be spastic (I don't know if this is true with all strokes), so his tendency is to curl his arm up and in.  The sleeve forces the extensor muscles to work, but it doesn't address the spasticity of the flexors.

The remedy for that is Botox, which Al's physiatrist has been harping on for a long time, and his physical therapist finally convinced him to do as well.  The doctor who performed the Botox injection was extremely optimistic about using these two therapies together and was certain that Al would feel a world of difference in 2-3 weeks.

The Botox injections were done on February 16.  The difference is not noticeable.  It's very disappointing.

One theory is that they didn't use enough of the Botox.  They typically start with very small amounts of Botox because they don't know how someone will respond.  And since Botox blocks the message for the muscle to tighten up, they don't want to use too much so that the muscle will be completely useless.

So, we wait.  Again.  They can't do another round of Botox injections for 3-6 months after the initial ones.

We are both incredibly grateful for technology and the opportunities to try new therapies for Al's recovery.  However, it is quite disheartening to find them not working as we had hoped.

I am hoping that, since I will be working part-time from now on (and I will have the summer off!), I will have more time to work with Al at home, more time to research what to do next without having to wait several weeks between appointments.  That seems to be the other part of therapy that goes so slowly - working with health professionals who seem to have too much on their plates to meet with us much more than once a month.  I want someone to connect with Al weekly, if not more, to suggest more and more therapy ideas.  I am not satisfied with "let's try this, and get back to me in 6 weeks."

That's where we are physically, with Al's rehab.  Slow but sure.  Maybe not even sure, but slow nonetheless.