Friday, December 30, 2011

Functionality of Another Kind

For the past several weeks, I have been battling major depression and post-traumatic stress disorder. As a result, as Al is working hard to regain motor function, I am losing day-to-day function due to my lack of ability to cope with the stress of my husband's limitations and excruciatingly slow recovery.

Since Thanksgiving break, I have been using one brain cell to process everything in my life. There is not a single spare brain cell available to multi-task. My poor brain cells are all lying down, panting and gasping as if they've just been through all of basic training in one day. I have been unable to drive without absolute silence in the car, and I've had several close calls on the road. I often sit at my desk with a blank stare and struggle to figure out what it is that I'm supposed to do next. At home, I'm a complete loss - as laundry, dishes, cooking, decorating and child-rearing all need to get done, none of them have gotten done well. Although, many people have commented, "You got your house decorated for Christmas," or "It looks so nice!" And I think, "Yeah, how did that happen?" I honestly can't remember doing all of it, but one explanation is that I chose to do what was enjoyable over the everyday grind. I have had many, many, many, many (Ok, too many to count), unpleasant moments with my children, either over-reacting at their backtalk, or screaming because they won't help me with chores. In any case, there's a 2-sided battle being waged - the young'uns' challenging behavior against the one brain cell I have left with which to process any kind of appropriate reaction.

Most days between Thanksgiving and Christmas break, I have driven to work, sobbing at the wheel. I feel as if I just. can't. do. it. any. more. I have been certain, each day, that this would be the day I would get fired because I would simply slip into a catatonic state and not respond to anyone or anything in the office ever again. I would crawl in from work, plop down on my favorite chair and hope that dinner magically appear, which it often did because my husband would order online the Papa John's pizza guy would show up 45 minutes later with dinner. I started to become very fond of the Papa John's pizza guy.

The only reason I can write this now is that I've had a little time off from work and "some" down time at home (as much down time as you can have with 4 kids on Christmas vacation!) Until now, I've been too far down into the dark to reach up and even touch the light. I can't write when I'm like that, because the tears get in my way. Don't get me wrong, I still have many moments like that, and I'm still not sure how I'm going to fare at work when my brain is still distressed. But right now I'm having a good moment, so I'm sharing before that moment goes away.

I often assess my life and wonder, "why is this so hard for me? It's just busy-ness." So what, I go to work full-time, take my kids to and from work/school with me, do all the grocery shopping, all the Christmas shopping, most of the bill-paying, most of the errands, and most of the housework; the housework that I do manage to get my children to participate in is met with much resistance, which further taxes my brain cell.

Still, it's just "busy-ness". What is it that makes it so hard for me to face life?

Well, I've had a lot of time to think in my downest, darkest, most introspective moments.

I feel alone.

I have a husband and children who love me, many Christian friends who take care of me in many practical ways, a great place to work, and our financial needs are continually, miraculously, met. But I feel alone in bearing the burden placed on our family. I feel as if my husband isn't able to bear most of it yet. He is still not back to work, and he still has a lot of therapy to do before getting to a place where his functioning is almost back to normal - his arm is still paralyzed! And I wonder about his mind - does he really have all the mental functioning he used to have? Is he just slower in responding because he's tired and it's still difficult to talk sometimes? Will he have the mental ability to return to work and provide for our family? He doesn't have any better idea about how to deal with pre-teen rebellion than I do. (By the way, I've discussed these things with Al, and we are both grasping at answers to these questions, so I don't want you to think I'm talking behind his back.)

I have many fears about what the future will look like. I've said this before, but grief is a moving target for us. It's not as if we suffered one blow and now we have to grieve that incident and move on. It's a kind of continual as we recognize, even a year after the stroke, that recovery will take a long time. And some things may never be recovered. How do you grieve something if you don't know whether you've lost it for good?

Consider this a "reality" post. It's kind of a downer, but this is what we're dealing with. I do have a lot of hope for the future, and I intend to write more about Al's bionic sleeve and his new and more promising therapy. As I process the difficulties, then I can hopefully move forward with taking care of my family and finding more courage for the days to come.

Thursday, December 8, 2011


This past few weeks have been a flurry of appointments, trying to restore some functionality to Al's left side. His parents were here in early November and got us started on the path to exploring Bioness. Bioness manufactures the Bioness L300 for foot drop and the Bioness H200 for hand paralysis.

Foot drop is the dropping of the forefoot due to weakness, damage to the peroneal nerve (not to be confused with the perineal nerve) or paralysis of the muscles in the anterior portion of the lower leg. It is usually a symptom of a greater problem, not a disease in itself. It is characterized by the inability or difficulty in moving the ankle and toes upward (dorsiflexion). Foot drop causes Al to not be able to take a step without his foot dragging on the ground. After several months of therapy, Al "walked" away with an AFO, an ankle-foot-orthosis, which is a rigid brace that keeps his foot from dropping. It's a nice short-term solution, but it doesn't offer much hope for regaining normal locomotion, since it simply holds his foot and ankle in place.

We are excited to have discovered the idea of something that can potentially rehabilitate his leg further than just sticking it in a brace for the rest of his life. And the H200 could be revolutionary for Al's arm. To be able to actually grasp an item with his left hand - which he hasn't been able to do for almost a year - will be a fantastic step forward!

However exciting these new possibilities are, there is also much decision-making to be done. One possibility leads to many more possibilities: Bioness is only ONE type of Functional Electrical Stimulation (FES). Al's parents have been doing non-stop research, and have also come across the WalkAide , which Al will also be trying.

And just recently, we discovered yet another company called AxioBionics, and the concept of "Wearable Therapy". It combines FES with something like a prosthetic that Al would wear on his leg to stimulate the right muscles in order to walk correctly. What is truly exciting about AxioBionics is that there are pieces of equipment for MANY parts of the body: torso, abdomen, shoulders, upper & lower arm, etc.

So, exciting advancements are on the horizon. Tomorrow night, we have an in-home evaluation for the AxioBionics Wearable Therapy. On Monday, we will commence Al's Bioness H200 fitting. The following week, we will get Al's new AFO and possibly try out the Walk Aide, if he's not already using the AxioBionics therapy.

All of these things will help to improve Al's everyday functioning. That will hopefully lead to the ability for him to return to work.