Monday, April 30, 2012

Crossroads

I think we've reached a crossroads in Al's recovery.  This has been on my mind for several weeks now, and I have shared the concept with him.  It seems we've spent so much time focusing primarily on rehab that we've put our life on hold.  And Al seems to be waiting until he is fully recovered before he moves on with his life.

But according to every doctor we know, there probably is not going to be a full recovery.  He will regain much of his former ability, but probably not all.  It is a discouraging fact to grasp.

It's been 16 months since his stroke.  He has made a lot of progress.  But the progress comes very slowly.  The downside to all the physical progress is what I perceive to be some mental loss.  I don't think it's permanent, but Al has been home alone for a long time, without much to stimulate him.  I began to worry when he would forget very simple things and he couldn't recall the substance of a conversation with a doctor or therapist.  I wondered if his brain was somehow suffering further damage.  But I have come to the conclusion that it's most likely a lack of use.  There's only so much Al can do to stimulate his brain at home.

I started to realize that we need to shift our focus away from full-time rehabilitation to having Al re-enter his life, while still working recovery.

I think it's time for him to go back to work.

Al is a Network Administrator for Lear Corporation in Mason.  Lear is a worldwide company, and the Mason plant supplies one of the General Motors plants here in Lansing with seats for their Cadillacs.  Even a few days after his stroke, he was talking shop with his boss, who was impressed with Al's sharp recollection of everything that had to be done in his absence.  Now, a year and a half later, I think his brain has "atrophied" in a sense, and it will be very good for him to put it to use again.

There is the natural apprehension about stepping back into his career.  Thank God for his company, who still has him on their employee roster.  Their long-term disability package is great.  But he will definitely need some physical accommodations since he still has no use of his left arm.  It is a sprawling plant, so he will probably need some mobility assistance as well.  And of course, he won't jump right back into a 45-hour work week.  He simply won't be able to handle that sharp of a transition yet.

But the wheels are in motion.  His doctor is in contact with his company so that she can formulate a plan for him to return to work.  We will meet with her on Friday.

Stroke rehab is ridiculously complicated.  There is no real point at which the doctors can say, "You're recovered."  From what I understand, the process can take years, or even the rest of his life.  And even then, some abilities may be never return.  It makes the concept of "moving on with your life" so much more ambiguous.

But I think it's time.

Friday, April 13, 2012

Bioness L300

This video was taken at physical therapy back in December 2011.  It shows Al walking with his AFO and his cane.  Al still uses an AFO to walk because his foot continues to drop, and his ankle rolls severely.




This video was taken on the same day as my husband was practicing walking with the Bioness L300.



The Bioness L300 theoretically corrects his need for the AFO.  However, if you watch all 2 minutes of the Bioness trial, you will see that his foot starts rolling on its own because his muscles get so fatigued within that small amount of time.

Al already has an Axiobionics arm sleeve, as well as a leg sleeve (also from Axiobionics) that does essentially the same thing as the Bioness L300.  What I can't understand is that the Axiobionics sleeve isn't quite as powerful, for some reason, as the Bioness L300.  And it is a bit more cumbersome since the Axio sleeve is connected to the control unit (which Al wears on a belt around his waist) by cords, whereas the Bioness is wireless.

Not sure what's going to happen next - will we keep trying to strengthen Al's leg with the Axiobionics sleeve, or will we pursue the Bioness?  As you can imagine, electrostim equipment is not cheap, and it isn't covered by our insurance.  Al's parents have been generous in covering all of his electrostim, but we don't want them to spend more than necessary. 

Now that I have moved to a part-time position at school, I have more time to investigate these questions and to help come up with an answer to how we want therapy to continue.

Saturday, April 7, 2012

Ephesians 3:14-21

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be the glory in the church and in Christ Jesus throughout all generations for ever and ever.  Amen."  (Ephesians 3:20-21)

I went to a women's conference in the Fall of 2010 and was very moved by this passage.  I had the sense that God was about to show me how much more He could do than I could possibly ask or imagine.

In January of 2011, my husband suffered a stroke.  I lost all of my bearings.  I knew - at times I even had the tangible sensation - that God was carrying me, sustaining me, even giving me joy in the midst of watching my husband be rendered disabled.  Within a matter of hours, he became like a palsied little child right in front of my eyes.  And somehow, I had this inexplicable joy.  And so did Al.  He really didn't fear what was happening to him.

That is what happens when you are faced with a life-threatening or life-altering situation.  We all wonder how we could make it through when faced with death or serious illness.  You don't prepare for it:  God meets you with incredible grace in the moment that you need it.

However, somehow my faith slowly eroded.  I would have moments of absolute faith and courage, but then they would slip away and leave a sickening fear.  I watched Al improve greatly during the first weeks of inpatient therapy.  This was encouraging.  But his progress slowed as he moved home and had only 2-3 sessions of therapy per week, and otherwise he was left home alone all day, every day while I resumed my full-time job.

As his recovery slowed, so did my faith.  I let fear take over.  Like Peter who was called to walk to Jesus on the water, he started out with enough faith to do the impossible.  But when he looked at the wind and the waves around him, he started to sink.  When I looked around and saw that Al's recovery had essentially stopped and we had no idea what our future was going to look like, I started to sink, too.  I sank lower than I had ever before, culminating in my infamous  nervous breakdown.  Instead of keeping my eyes fixed on Jesus, I let myself be drowned in the waves of anxiety and fear.

Now, I know that losing faith isn't all my fault.  Giving in to depression isn't all my fault.  Getting Post-Traumatic Stress Disorder wasn't my fault.  Having to work a full-time job that was mentally and emotionally draining wasn't my fault.  (I do assume some fault because I know I'm imperfect and that life doesn't just happen to me.  That is definitely another whole topic in and of itself.)

But it's still hard not to blame myself for falling apart.

Happily however, God always has enough grace to take me back.  Although this particular kind of sin isn't my issue at this point, I was touched by this video - that Jesus wants me, even though I'm beaten, run down and have let my faith falter. 

Matt Chandler: "Jesus Wants the Rose"



Now we're on the precipice of Easter.  When Jesus shows His absolute love for us.  And we remember the power of God that is present in our everyday life, not just on Easter.  Power to resurrect, power to give us victory amidst what seems like everyday tragedy.  Power to bring good out of something bad.  Power to do immeasurably more than all we ask or imagine.

14 For this reason I kneel before the Father, 15 from whom every family in heaven and on earth derives its name. 16 I pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, 17 so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, 18 may have power, together with all the Lord’s holy people, to grasp how wide and long and high and deep is the love of Christ, 19 and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God.
 20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

Friday, April 6, 2012

Good Friday Therapy

I have a hard time making Lent "worthwhile", in general, because I feel like I'm always dealing with major issues in my life anyway.  This year, in particular, if you've been reading my blog, you know I've been barely surviving, emotionally, mentally and physically.  Dealing with the aftermath of my husband's stroke has worn on me in such a way that I have felt like I was barely alive.  I had difficulty making the simple drive to work.  I would have to remind myself every moment where I was going and why I was going there.  And I would often cry my eyes out during the drive, feeling like I couldn't handle another day.  And I would forget what I was doing, midstream, in the middle of my work day.  I would get home and have absolutely no ambition to get dinner on or do housework, and I couldn't even face what needed to be done.  I can easily say that the last 6 months has been the worst 6 months of my life.

Now, there is finally some light and some hope in terms of the load I'm carrying, specifically due to my schedule.  And it's spring, which makes everything in my mental health and outlook improve due to the sunshine!!!

It's Good Friday.  In my Church Tradition, we observe "Lent" for 40 days, a time of fasting, prayer, and repentance.  It's not a time meant for self-deprecation.  It's a time for us to remember what Jesus did for us, and to remember how much more we need of His help and grace.  Today is the day we observe Jesus' death on the Cross. 

It's not too late to make something of my Lent.  To prepare myself for the celebration of Easter.  To ask God for renewed grace and help to carry my burden with new strength.

Thursday, April 5, 2012

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.

Tuesday, April 3, 2012

Fighting with Anger

I haven't written in a long time because I've been tired.

Exhausted.

I was angry for a long time.  I was angry that I was carrying all the weight in my family.  I was angry at God for not giving me the grace to keep doing it (or that I was just too stupid to find His grace.)  I was angry that I was so tired and that I had to keep running all the time, from one appointment to another, to work and then back, etc.

I went to see my therapist at the beginning of February.  I went a few times and then stopped because I just didn't have the time or energy to keep going.  I had just started back to therapy after taking over a year off due to caring for Al after his stroke.  I told my therapist about being exhausted and angry.  I just wanted her to say, "OK, you can't handle it.  I'll write you a prescription that says you can take the rest of your life off of work and any other annoying responsibilities."  But she didn't.  She's not an MD, and she knew that I had to figure out to handle it all, or most of it anyway.  I couldn't just abandon my family, as much as I wished I could hire a mom to do all the dirty work of parenting and I could just enjoy my children.

 First of all, she asked me why I was so angry.  I was angry because I felt like my husband had more ability to help me than he would actually offer  (which was probably not a realistic assumption, but it was still a strong "feeling").  So, she suggested that I accept the fact that I was a single parent, temporarily.  I'm not "really" a single parent, but I had been doing all of the things that a single parent would do.  So, what if I just had the expectation that I would have to act like a single parent for a while?  I would be free from the anger of expecting that my husband could do everything he once did.

She also said that I need to lower my expectations - or at least tailor them to what's realistic for my life.  Maybe we didn't have dinner together at the table every night, and maybe I didn't "cook" every night.  The truth is that's what happened most nights anyway - we ended up eating something very simple, and we hardly sat together at the table.  But if my expectation wast that it wasn't going to happen, then I wouldn't be disappointed about it.

It's hard to wrap my mind around lowering my expectations.  I'm a perfectionist - high expectations is what I do!!! I guess that giving myself some slack for family meals is OK, but it's actually much harder to let go of my expectations for house cleanliness.  I really don't want to live in a pig-sty, but I do most of the time, so it would be helpful if I expected the house to be less clean.  Maybe I should re-phrase that:  I have to let myself be OK with a mess in the house. . . .most of the time. . .

The good news is this:  after spring break (this week), I will be moving to a part-time job at my school.  After asking my boss at the beginning of February if my job could become a job-share situation (to which he said no), he offered me the opportunity of becoming the part-time librarian at the school.  We haven't had a librarian since the school opened in 2009, and the teacher who was running the library simply couldn't do it, having to teach classes all day and all.

I will work 18-20 hours in a quiet (hopefully) environment and still have the opportunity to pick up hours by subbing in the front office if need be.  I've never been so thankful for the prospect of earning less money.

Now that I'm relaxing in the Great White North of Michigan (although thankfully it's not really white), I can take some time to catch up on all our therapy - my husband's excruciatingly slow stroke recovery and then some.