From Jenny Sue Got Married, originally posted on October 5, 2011.
Before Al was released from inpatient therapy, I asked his physical
therapist to cover a very important practical matter: how would I help
Al get up if he fell down? So we practiced the scenario a few times,
until we were comfortable with the process. The PT also made sure to
teach me how to assess whether anything was broken or dislocated, other
than the obvious bone poking through the skin. I felt confident that I
was ready for the potential situation.
Strangely
enough, Al has not had any major falls. He has stumbled and lost his
balance a number of times. Early on, he rolled over in bed and fell
halfway out. But he has never fallen. Until today.
Evan
was having a technology crisis in the basement that only his father
could solve. I've learned to do a lot of things since Al's stroke, and
I've taken over a lot of his former responsibilities. But when it comes
to computer networking, I'm still pretty much an ignoramus. So, I'm
very blessed that Al still has his computer networking abilities.
Al
was summoned to the basement by our son, who was having trouble getting
his computer page to load. Al made his way down the stairs, an
exercise for which he no longer needs help. He made it to the bottom of
the stairs, only to get his cane caught up in the ladder that was lying
by the basement wall. I heard a *clang* and then shouts from the kids,
"Daddy, are you OK???"
I went down to find Al lying, face-down, on the basement floor.
The
kids were more alarmed than I was. I just had to figure out how to
help him get up. After maneuvering him into a sitting position, he was
able to get up by himself with little effort. I didn't think about it
until after he was standing, but I finally asked, "Does anything hurt?"
He said nothing hurt except that he hit the floor with the left side of
his face. I guess it's somewhat of a blessing that the left side of
his face is still numb.
Al has been getting more
adventurous since his brace was minimized. He has been doing stairs
more confidently and more regularly. He has been driving (shhh, don't
tell the Secretary of State). I'm glad to see him becoming more mobile,
but I was also reminded today that he still needs to be cautious and
careful. Most movement still isn't as easy for him as it is for you and
I. It's not second nature yet.
Sometimes my heart cries out to God for Al, as the psalmists did:
1 How long, LORD? Will you forget me forever?
How long will you hide your face from me?
2 How long must I wrestle with my thoughts
and day after day have sorrow in my heart?
How long will my enemy triumph over me?
3 Look on me and answer, LORD my God.
Give light to my eyes, or I will sleep in death,
4 and my enemy will say, “I have overcome him,”
and my foes will rejoice when I fall.
5 But I trust in your unfailing love;
my heart rejoices in your salvation.
6 I will sing the LORD’s praise,
for he has been good to me. (Psalm 13)
Showing posts with label Stroke Rehab. Show all posts
Showing posts with label Stroke Rehab. Show all posts
Tuesday, October 16, 2012
The Best Medicine
From Jenny Sue Got Married, originally posted on August 10, 2011.
The Bible and Reader's Digest agree: Laughter is the best medicine.
Blue Cross Blue Shield? Not so much.
My husband was on the phone with our insurance company, trying to figure out what has been paid to the hospital, what was covered, if our deductible has been met, etc. In the course of the conversation, it came to his attention that "recreation therapy" is not one of the services they cover.
Al had been in the hospital 13 days. He had been moved from the main hospital to the outpatient rehabilitation wing. When I had moved him in there, I had a sick, sad feeling because my husband had to share a ward with 3 other men, separated only by a curtain for privacy. It reminded me of a prison cell more than a hospital room. He had a tiny little closet that was about a foot wide, and a TV that was mounted on a swinging arm so he could pull it right over his bed. And he got full cable - the only perk to being in that otherwise god-forsaken place.
So when I went to visit Al on January 18, I went into his room. He was not there. Very strange, since he didn't have the capability to go anywhere on his own yet. His therapy sessions were over for the day, and I saw that he had eaten dinner, but his tray had not yet been removed. I grew a little anxious: "Had something happened and they had to rush him back in for another CT scan?" I walked around the unit until I came to the "day room" - a nice, large room with a gigantic conference table, sofas, TV, kitchenette, a piano, and a computer. Basically, it was a rec room. That's where I found my husband doing what he was supposed to be doing in a rec room - recreating. He was playing euchre with 3 otherinmates
patients, assisted by a "recreational therapist." It was the first
glimpse in almost 2 weeks that I had of my "normal" husband. He's
pretty good at cards, and he really enjoys playing. So, he was sitting
there joking around, engaging in table talk, as if he were at a buddy's
house instead of in a cold, sanitized hospital.
Little did we know that he would be charged for his recreational time. Because the insurance company apparently thinks that the only services that are worthwhile are those which cause pain, discomfort, or embarrassment, which is what Al endured all day, every day for 5 weeks with physical, occupational and speech therapy, daily needle pokes in his abdomen to prevent blood clotting, and having someone assist him in the most basic needs, such as getting dressed and going to the bathroom.
Also, the therapy scheduling people must have assumed that my husband, 13 days post-stroke, would know the infinite details of his inpatient rehabilitation coverage, and would definitely know whether or not recreational therapy would be covered, and would have the presence of mind to tell the rec. therapist that her services weren't covered, and therefore he couldn't participate. I guess I can't argue with that - we are all supposed to know what's covered and what's not, so it's our fault for not perusing the inpatient rehab service coverage before Al had his stroke.
How foolish of us.
The Bible and Reader's Digest agree: Laughter is the best medicine.
Blue Cross Blue Shield? Not so much.
My husband was on the phone with our insurance company, trying to figure out what has been paid to the hospital, what was covered, if our deductible has been met, etc. In the course of the conversation, it came to his attention that "recreation therapy" is not one of the services they cover.
Al had been in the hospital 13 days. He had been moved from the main hospital to the outpatient rehabilitation wing. When I had moved him in there, I had a sick, sad feeling because my husband had to share a ward with 3 other men, separated only by a curtain for privacy. It reminded me of a prison cell more than a hospital room. He had a tiny little closet that was about a foot wide, and a TV that was mounted on a swinging arm so he could pull it right over his bed. And he got full cable - the only perk to being in that otherwise god-forsaken place.
So when I went to visit Al on January 18, I went into his room. He was not there. Very strange, since he didn't have the capability to go anywhere on his own yet. His therapy sessions were over for the day, and I saw that he had eaten dinner, but his tray had not yet been removed. I grew a little anxious: "Had something happened and they had to rush him back in for another CT scan?" I walked around the unit until I came to the "day room" - a nice, large room with a gigantic conference table, sofas, TV, kitchenette, a piano, and a computer. Basically, it was a rec room. That's where I found my husband doing what he was supposed to be doing in a rec room - recreating. He was playing euchre with 3 other
Little did we know that he would be charged for his recreational time. Because the insurance company apparently thinks that the only services that are worthwhile are those which cause pain, discomfort, or embarrassment, which is what Al endured all day, every day for 5 weeks with physical, occupational and speech therapy, daily needle pokes in his abdomen to prevent blood clotting, and having someone assist him in the most basic needs, such as getting dressed and going to the bathroom.
Also, the therapy scheduling people must have assumed that my husband, 13 days post-stroke, would know the infinite details of his inpatient rehabilitation coverage, and would definitely know whether or not recreational therapy would be covered, and would have the presence of mind to tell the rec. therapist that her services weren't covered, and therefore he couldn't participate. I guess I can't argue with that - we are all supposed to know what's covered and what's not, so it's our fault for not perusing the inpatient rehab service coverage before Al had his stroke.
How foolish of us.
Wednesday, August 29, 2012
Blank Slate
It's been 19 months, 3 weeks and 3 days since my husband
had a stroke.
You would think that we would have some things figured
out, like maybe he would be returning to work. Or that I would be
handling things better. Or that life would be returning to “normal”,
or at the very least we would be creating a new normal.
Instead, what is facing us is pretty
much a blank slate. At this point our future seems the most
undefined it's ever been. Last year at this time, I was working
full-time. Al was still going to therapy. He was getting the help
he needed and I was making the money, doing the chores, paying the bills, getting the kids to and from
school, ordering pizza for dinner so often that the pizza place just
answered by saying, “the usual?” At least I felt like we were
making progress. I assumed things would be “better” in a year.
One year later. It feels like nothing
has changed. But it certainly has. I am only working part-time now,
which is a great help to my sanity. I honestly don't know how other
moms work 40 hours a week manage to survive. I was a wreck after one year of it. Of
course, I did have the added fact that my husband was rendered
disabled by a stupid CVA. I guess that might have added some stress.
(ya think???) But I've never been very good at handling a lot at
one time. I feel as if my brain came with limited juggling ability
from the get-go. Maybe it's because I have serious ADD
(self-diagnosed, but I KNOW I have it) and refuse to be medicated for
it because I'm already a walking drug factory. The pharmacy people
know me by name, too.
I can't complain too much, though: we
had a great summer. It just went too fast. We had a 2-week vacation
to Mackinaw City and Mackinac Island, and the Upper Peninsula of
Michigan where my parents live. As soon as we returned, my in-laws
flew my husband to their home in Venice, Florida. It was a nice
break for my husband to get out of his dull routine, and a nice break
for us (shhh, don't tell him I said that.) The purpose for his visit
was that his parents had contacted a variety of people to give a
“second opinion” of sorts on his progress. They had Al visit
with a physical therapist, an orthotist from Hanger, a podiatrist (to
help him with some recurring foot issues that have resulted from his
AFO), and even an acupuncturist to try to re-awaken his face. In addition to seeking outside
input, they also did some intensive home therapy with him on a daily
basis, helping him into their pool and making him ride a stationary
bike.
During that time, his therapy group
met, via phone call, with his company to determine whether he would
be truly able to return to his previous position as IT Administrator at Lear. They emailed him
in Florida stating that their final recommendation would be that he
not return to his position at Lear, since Lear cannot accommodate him
on a part-time schedule, and since his position required a lot of
physical activity: going up and down several steps, several
times aday, walking over moving lines, carrying computer equipment,
working in a fast paced environment rushing to the floor when
emergencies are at stake.
OK. Fine. I completely understand,
and I know there are agencies out there that can help a disabled man
find a decent job, since he still has quite a sharp mind, and he has
a lot of experience, both in networking, as well as with his MSW.
What I don't understand is the snail's pace at which all people
involved seemed to move. We had met with his PM&R doctor several
times in early spring and made it abundantly clear that our goal was
to get him back to work, even though her very first words to him were
“Well, you don't have to go back to work.” What a
very bizarre thing for a doctor to say to a man in his 30's with a
family to provide for. She might just as well have said, “Just
accept your fate, stay at home and collect disability.” The last
time we met with her, which was in May, she agreed to contact our
therapy group to get the ball rolling on Al's return to work. She
said, “Maybe you can go back as soon as next week.” In
retrospect, this convinces me that she has no clue what it takes to
get a disabled person back into his job. A few weeks later, we met
with Al's OT, who said she would hand our case over to yet another OT
who specialized in back-to-work transitions. Granted, we had a
2-week vacation in there, and then my husband left for Florida for 6
weeks. Not much time for them to meet with him, but then to have an
email finally saying it's a no-go seemed just a little too curt for
my tastes. I guess I just wonder why no one came to this conclusion
months ago, since we had actually had meetings with HR at Al's
company and made it clear to them that he wouldn't be able to return
full-time, at least not for the first several months. It seems they
could have simply closed the door then.
All of this to say, here we are,
staring at sort of a blank slate. It's clear that Al should continue
some sort of therapy, as he has not had any voluntary movement return
to his lower left arm, but he is able to move some muscles in his
upper arm. With the electro-stim sleeve and continued therapy, we
are still holding out for the best possible scenario, which is for
him to completely regain the use of his hand. As for his leg, the PT in Florida, as
well as the PT's here, have agreed that all of the
muscles in his left leg actually work; it's just a matter of training
them and strengthening them in the right way. This is obviously very
encouraging, but therapy is very helpful for him to learn exercises
that will continue to target the muscles that need training.
But we have already been through 2
therapy groups and 2 physiatrist / PM&R docs, and we are ready to
move on to #3 in both. Before I go on further, is it just me, or
should a physiatrist be active in helping to orchestrate therapy,
treatment, and even back-to-work goals? Because my experience so far
is that we've met with the docs we've had, maybe once every month to
six weeks, and they haven't necessarily helped us draft a plan,
something we can see and actively follow. I wonder if I'm just living in a fantasy world. Please share your thoughts / experiences if you have any with PM&R docs.
So, we feel like we're starting from
scratch, although my dear hubby is definitely further along than he
was a year ago – more movement, better balance, more independence,
etc. But it's a tough spot for a young father of 4 to be in –
wondering if, when, and how he will return to work. And a mother of
4, and caregiver to her dear hubby, not able to work full-time, given
my other responsibilities. And I hardly feel like I can come to grips with what all of this means for our family, even though I've 19 months to digest it all.
I feel a bit sheepish to add this as an
afterthought, but I am full of faith. I DO believe that God
has a plan for us, and that He will be faithful to lay it out before
us, and continue to provide for us as He has done for the 15 years of
our marriage, and throughout this whole stroke ordeal, and for all of
our lives. It's just that I'm kind of a perfectionistic
control-freak, and I don't like not knowing what's going on. My
husband on the other hand, is a bit more challenged, I think, to
believe that any good will come of all this. It's hard for him to
see how he will ever provide for his family again, and it's hard for
me to convince him that “In all things God works for the good of
those who love him, who have been called according to his purpose.”
(Rom. 8:28)
However, our kids are sweet and loving,
and they pray over Daddy faithfully, and they love his kooky sense of
humor. He already has a lot going for him – a good relationship
with his kids, great Christian friends who help in every way they
can, a fabulously capable wife (ha ha, that's a bit of a joke, since
some days I can barely remember who I am and what I'm doing), and
above all a God who has never abandoned nor forsaken him.
In writing this, I am renewed in my
belief in that last statement – that God will never forsake us.
“For your sake we face death all day long;
we are considered as sheep to be slaughtered.”
we are considered as sheep to be slaughtered.”
No, in all these things we are more than conquerors through him who
loved us. For I am convinced that neither death nor life, neither
angels nor demons, neither the present nor the future, nor any
powers, neither height nor depth, nor anything else in all creation,
will be able to separate us from the love of God that is in Christ
Jesus our Lord.”
Sorry it's been a long post, but I'm trying to catch up on all that I've missed writing about!
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.
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.
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.
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.
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.
Tuesday, January 24, 2012
Whirlwind Update
I have been exceedingly busy, and so have not had much time to blog. I will flesh out these updates when I have time, but for now, suffice it to say, I've been busy (did I mention that???)
Last night, Al and I went to our family therapist to talk about "starting" family therapy. She has already met and evaluated each of our kids, and last night was the first night we came away with a concrete plan. We have truly awesome kids, but our home is unpeaceful. I know that a large part of that is my fault because I am so often unpeaceful. But we decided, together, to work on our relationships with our children. How? Turn off the TV and tune in to our kids! Sounds so easy, but so challenging when I am so exhausted after work and on the weekends that all I want to do is veg out in my favorite chair with the remote in hand or computer in my lap. But our kids need us, and we need them, so I am trusting that sacrificing some of "my" time will be met with God's grace, as sacrifices always are.
Another quick update: we met with a new physiatrist today (physical medicine and rehabilitation doctor, i.e. physical therapy specialist) who is going to give Al Botox injections in his arm and leg to reduce muscle tone and spasticity and hopefully give him more "bang for his buck" in terms of therapy. Al does not like this idea at all since it involves needles and poison, but it is a promising therapy, as many people have had great results with it.
Final update for now: I joined Weight Watchers online. With everything I have to do, I added keeping track of food and "points" (which I absolutely hate doing), but I was given a wake-up call at a doctor's appointment the other day when I weighed in at 190 - holy crap! Time to do something drastic! You can read a little more about it in my other blog: Jenny Sue Got Married.
I truly hope to give more thorough updates in the coming days - I haven't even taken pictures of Al's cool electrostim equipment yet, so that is coming too.
Thanks for staying with me!
Last night, Al and I went to our family therapist to talk about "starting" family therapy. She has already met and evaluated each of our kids, and last night was the first night we came away with a concrete plan. We have truly awesome kids, but our home is unpeaceful. I know that a large part of that is my fault because I am so often unpeaceful. But we decided, together, to work on our relationships with our children. How? Turn off the TV and tune in to our kids! Sounds so easy, but so challenging when I am so exhausted after work and on the weekends that all I want to do is veg out in my favorite chair with the remote in hand or computer in my lap. But our kids need us, and we need them, so I am trusting that sacrificing some of "my" time will be met with God's grace, as sacrifices always are.
Another quick update: we met with a new physiatrist today (physical medicine and rehabilitation doctor, i.e. physical therapy specialist) who is going to give Al Botox injections in his arm and leg to reduce muscle tone and spasticity and hopefully give him more "bang for his buck" in terms of therapy. Al does not like this idea at all since it involves needles and poison, but it is a promising therapy, as many people have had great results with it.
Final update for now: I joined Weight Watchers online. With everything I have to do, I added keeping track of food and "points" (which I absolutely hate doing), but I was given a wake-up call at a doctor's appointment the other day when I weighed in at 190 - holy crap! Time to do something drastic! You can read a little more about it in my other blog: Jenny Sue Got Married.
I truly hope to give more thorough updates in the coming days - I haven't even taken pictures of Al's cool electrostim equipment yet, so that is coming too.
Thanks for staying with me!
Sunday, January 8, 2012
Bearing the Burden
So, as I've been limping along through depression and confusion, I've often been unaware of the prayer support of many, many people. But once in a while, someone says, "I'm still praying for you and your family", and it actually surprises me a little.
"Me? You're praying for me? You still remember us? Wow!"
I've been so blessed by people who are so persistent and persevering in prayer for Al's complete healing and for our family's well-being.
Recently, some friends of ours offered to come over and pray with us. We belong to a great Christian prayer community, and we often pray bold prayers of faith, with and for each other, while laying hands on one another. So, when these friends offered to come over and pray, I shouldn't have been surprised, but I was. I was also very grateful. They came and talked with us, encouraged us, and prayed with us. And when they prayed, I felt a very tangible lifting of the burden I'd been carrying. I just realized that these friends were not just stopping by to do their good deed for the day and then move on; they were there to carry the burden with us.
God lightened my eyes to 2 things through this experience. One was that which I just described. I hadn't been letting others help me carry my burden. I had been trying to carry it all myself and I was being crushed under the weight of it.
The other thing God reminded me of was Matthew 11:28-30: "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” I was completely forgetting to let God help me carry my burden; even more to let Him carry it for me.
Now that I've had some time to recuperate and get my mind back a little bit, I realize how much, once again, how much I really need the Lord, and how much I need my brothers and sisters in Christ.
"Me? You're praying for me? You still remember us? Wow!"
I've been so blessed by people who are so persistent and persevering in prayer for Al's complete healing and for our family's well-being.
Recently, some friends of ours offered to come over and pray with us. We belong to a great Christian prayer community, and we often pray bold prayers of faith, with and for each other, while laying hands on one another. So, when these friends offered to come over and pray, I shouldn't have been surprised, but I was. I was also very grateful. They came and talked with us, encouraged us, and prayed with us. And when they prayed, I felt a very tangible lifting of the burden I'd been carrying. I just realized that these friends were not just stopping by to do their good deed for the day and then move on; they were there to carry the burden with us.
God lightened my eyes to 2 things through this experience. One was that which I just described. I hadn't been letting others help me carry my burden. I had been trying to carry it all myself and I was being crushed under the weight of it.
The other thing God reminded me of was Matthew 11:28-30: "Come to me, all you who are weary and burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.” I was completely forgetting to let God help me carry my burden; even more to let Him carry it for me.
Now that I've had some time to recuperate and get my mind back a little bit, I realize how much, once again, how much I really need the Lord, and how much I need my brothers and sisters in Christ.
Thursday, January 5, 2012
Survival Day
January 5, 2011
No, I didn't get the year wrong. January 5, 2011, one year ago today, was the day Al had a stroke. I cannot believe it has been a year already. Probably because I've been either in a fog, or carried by the grace of God, or both for the past 365 days. Either way, the one-year mark is unbelievable.
As we approached this date in 2012, I feared it. I've had PTSD symptoms such as "recurrent re-experiencing of the trauma - for example, troublesome memories or flashbacks that are usually caused by reminders of the traumatic events." I thought the day would be a dark, grim reminder of everything the stroke took away.
However, I woke up this morning inexplicably peaceful and almost. . . .happy. A thought popped into my head, and I rolled over to Al and said, "Happy Survival Day." I have no doubt that little thought was the Lord's message to me - Don't look at today as a cruel memento, but as a landmark of Al's surviving! The Lord allowed me to see a new picture - a year of survival, a year of victory, a year of enduring adversity.
Romans 8:28 assures us: And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Only the Lord can take such a harrowing experience, break through it, and turn it into something good.
Thank You, Lord, and Happy Survival Day to my dear hubby!
No, I didn't get the year wrong. January 5, 2011, one year ago today, was the day Al had a stroke. I cannot believe it has been a year already. Probably because I've been either in a fog, or carried by the grace of God, or both for the past 365 days. Either way, the one-year mark is unbelievable.
As we approached this date in 2012, I feared it. I've had PTSD symptoms such as "recurrent re-experiencing of the trauma - for example, troublesome memories or flashbacks that are usually caused by reminders of the traumatic events." I thought the day would be a dark, grim reminder of everything the stroke took away.
However, I woke up this morning inexplicably peaceful and almost. . . .happy. A thought popped into my head, and I rolled over to Al and said, "Happy Survival Day." I have no doubt that little thought was the Lord's message to me - Don't look at today as a cruel memento, but as a landmark of Al's surviving! The Lord allowed me to see a new picture - a year of survival, a year of victory, a year of enduring adversity.
Romans 8:28 assures us: And we know that in all things God works for the good of those who love him, who have been called according to his purpose. Only the Lord can take such a harrowing experience, break through it, and turn it into something good.
Thank You, Lord, and Happy Survival Day to my dear hubby!
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.
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
Functionality
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
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.
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.
Sunday, November 20, 2011
Glimpses of "Normalcy"
Al has been inspired on several occasions to hobble outside and grill some type of animal carcass. In mid-September, it was hamburgers on the occasion of Faith's birthday. She had made out a menu for every meal on her birthday, down to the beverage. Breakfast: crepes with syrup and powdered sugar, orange juice and sausage. Lunch: extra cheesy macaroni and cheese with chocolate milk. Dinner: hamburgers (on the grill, NOT fried or broiled), ketchup & pickles, chips and root beer. And dessert, of course: Vanilla cake with chocolate frosting, and dirt pudding with gummy worms instead of ice cream. She's a little particular, can you tell?
So, Al was happy to oblige by grilling the burgers. It's something he enjoyed before the stroke, and now he can enjoy it again, and was able to all summer. I remember one particular night in February, as Hope and I visited Al in the hospital, we had gone down to the cafeteria to get dinner. We walked by a display of burgers, and they smelled so rich and smokey, as if they had just come off a charcoal grill on a hot July evening. I turned to Hope and said, "I can't wait until Dad can grill in the back yard again." She agreed and we both stood there and enjoyed the smell for a few more minutes.
That night, as Al was grilling the burgers, Faith wandered outside to keep Daddy company. It was one of those late summer evenings when the house was stuffy from the heat of the day, but the evening was refreshingly cool and breezy, so we opened up all the windows to let in a new supply of air. As I worked in the kitchen to get some food ready, I could hear Faith happily chatting with Daddy outside. It struck me that Al's responses to her were so fluid. His voice sounded normal for the first time since the stroke.
Once in a while, I'm happy to glimpse the "old" normal. However, I am sure that a new normal will move in at some point, as I'm finally beginning to accept the fact that much of the old normal may be gone for good.
Bring it on.
So, Al was happy to oblige by grilling the burgers. It's something he enjoyed before the stroke, and now he can enjoy it again, and was able to all summer. I remember one particular night in February, as Hope and I visited Al in the hospital, we had gone down to the cafeteria to get dinner. We walked by a display of burgers, and they smelled so rich and smokey, as if they had just come off a charcoal grill on a hot July evening. I turned to Hope and said, "I can't wait until Dad can grill in the back yard again." She agreed and we both stood there and enjoyed the smell for a few more minutes.
That night, as Al was grilling the burgers, Faith wandered outside to keep Daddy company. It was one of those late summer evenings when the house was stuffy from the heat of the day, but the evening was refreshingly cool and breezy, so we opened up all the windows to let in a new supply of air. As I worked in the kitchen to get some food ready, I could hear Faith happily chatting with Daddy outside. It struck me that Al's responses to her were so fluid. His voice sounded normal for the first time since the stroke.
Once in a while, I'm happy to glimpse the "old" normal. However, I am sure that a new normal will move in at some point, as I'm finally beginning to accept the fact that much of the old normal may be gone for good.
Bring it on.
Sunday, November 13, 2011
Sometimes It All Piles Up!
Since Al's stroke just over 10 months ago, I've experienced a tremendous amount of grace to deal with it. You know how people say, "I don't know if I could handle that", when they hear about a death in someone's family, or someone's child facing a life-threatening illness. I used to say that, and hope that I would never have to face such a challenge. And others would reassure me that I would have the grace in the moment to go through such a thing.
Well, that is exactly what I'm talking about. If someone had told me ahead of time that my husband would have a stroke at age 37, I would have freaked out and tried to figure out any possible way that I could prevent it from happening. I would have spent lots of energy worrying about when, how, and why it would happen. Instead, it came very unexpectedly, and God's grace met me at that very first moment when Al called me to tell me that his boss was calling 911. God's grace surrounded me and sustained me for many months afterwards as I was a single mom, and I took over every single detail of our household, including car maintenance and paying bills, which up until then, were solely Al's jobs. His grace was enough for me, so that I actually walked around with a smile on my face, and I floated a bit above the ground as he carried me through some really challenging times. I was able to tell people that God is good and that I fully trusted in Him.
Ten months later, I have no doubt that God's grace is still enough for me; He is still sufficient for me in my weakness. But some days, like today (the past few days, actually), it all catches up to me and overwhelms me. I succumb to everything that makes me feel sad and helpless about the situation.
I miss my husband's old walk. It sounds weird, but he had a distinct gait, with a funny little spring in his step that he doesn't have now that he has to lumber around with a half-obedient leg and a cane. And I doubt he will ever have that same walk again.
I miss my husband's smile. Half of his face is still numb, so he has to really force it for the left side of his mouth to smile, and when he makes that much of an effort, he looks like a goofy kindergartener saying "cheese" for the photographer instead of the man I married.
I miss my husband's laugh. He used to have a guffaw that I can't really describe, but it would come out when he thought something was especially funny. Now, as he so affectionately describes it, "I sound like a dumb-ass." He still knows HOW to laugh and has a great sense of humor, but the old laugh is gone. I hope and pray that it's not gone for good.
I miss having my husband wrap both arms around me. Only one is functional at this point. His one-armed hugs are still pretty strong, but there is something so secure about being enveloped in both of his arms.
I miss having my husband take care of me: little things like driving when we go somewhere together, or running to the bank to get money, or getting pizza on Friday nights, or picking up a few things at the grocery store when I didn't have time. Now I do all of those things.
I miss our sex life. Yeah, we're all adults here (I hope). I miss the closeness we used to share when his body was capable of doing what he wanted it to, and when he still had some libido. But that is on hiatus for a while, and I don't like it! We have other ways to express our affection and to be intimate, but there is nothing quite like the real thing.
There you have it. A few of the many challenges we face. I am always trying to give thanks for what I do have: my husband's life(!), my children, a job, provision for all of our needs. I am trying not to fall into a habit of feeling sorry for myself. But some days, it overwhelms me.
Well, that is exactly what I'm talking about. If someone had told me ahead of time that my husband would have a stroke at age 37, I would have freaked out and tried to figure out any possible way that I could prevent it from happening. I would have spent lots of energy worrying about when, how, and why it would happen. Instead, it came very unexpectedly, and God's grace met me at that very first moment when Al called me to tell me that his boss was calling 911. God's grace surrounded me and sustained me for many months afterwards as I was a single mom, and I took over every single detail of our household, including car maintenance and paying bills, which up until then, were solely Al's jobs. His grace was enough for me, so that I actually walked around with a smile on my face, and I floated a bit above the ground as he carried me through some really challenging times. I was able to tell people that God is good and that I fully trusted in Him.
Ten months later, I have no doubt that God's grace is still enough for me; He is still sufficient for me in my weakness. But some days, like today (the past few days, actually), it all catches up to me and overwhelms me. I succumb to everything that makes me feel sad and helpless about the situation.
I miss my husband's old walk. It sounds weird, but he had a distinct gait, with a funny little spring in his step that he doesn't have now that he has to lumber around with a half-obedient leg and a cane. And I doubt he will ever have that same walk again.
I miss my husband's smile. Half of his face is still numb, so he has to really force it for the left side of his mouth to smile, and when he makes that much of an effort, he looks like a goofy kindergartener saying "cheese" for the photographer instead of the man I married.
I miss my husband's laugh. He used to have a guffaw that I can't really describe, but it would come out when he thought something was especially funny. Now, as he so affectionately describes it, "I sound like a dumb-ass." He still knows HOW to laugh and has a great sense of humor, but the old laugh is gone. I hope and pray that it's not gone for good.
I miss having my husband wrap both arms around me. Only one is functional at this point. His one-armed hugs are still pretty strong, but there is something so secure about being enveloped in both of his arms.
I miss having my husband take care of me: little things like driving when we go somewhere together, or running to the bank to get money, or getting pizza on Friday nights, or picking up a few things at the grocery store when I didn't have time. Now I do all of those things.
I miss our sex life. Yeah, we're all adults here (I hope). I miss the closeness we used to share when his body was capable of doing what he wanted it to, and when he still had some libido. But that is on hiatus for a while, and I don't like it! We have other ways to express our affection and to be intimate, but there is nothing quite like the real thing.
There you have it. A few of the many challenges we face. I am always trying to give thanks for what I do have: my husband's life(!), my children, a job, provision for all of our needs. I am trying not to fall into a habit of feeling sorry for myself. But some days, it overwhelms me.
Monday, November 7, 2011
This Will Take How Long???
As I mentioned in my "timeline" post, I was unaware at first about how long stroke recovery can actually take. When Al was finally diagnosed as having a stroke, 3 CT scans and an MRI later, I thought, "Well, good now we can start working on fixing this." My sad impression was that Al's left side had simply fallen asleep (although I knew that it much more complex than that), and that it would take some jiggling and massaging and a little PT here and there to wake his left side up. I mean, after all, he wasn't paralyzed in the way that I always thought of paralysis, which was complete lack of feeling or movement. By the time the stroke was complete, Al could still feel and move most of his left side to some extent, so I assumed it was just a matter of exercising those parts back into full functioning. I seriously thought it would take 2-3 months. Period.
Ignorance is bliss, but I was slowly immersed in reality as Al endured 6 weeks of inpatient therapy just to be stable enough to walk to the car, get into the car, and climb the 5 front steps of our house. He still relied heavily on my assistance to walk around the house, go to the bathroom, get a shower, and get his food.
OK, so he wasn't back to normal after 6 weeks. I figured a few more months of outpatient therapy, combined with his immersion back into his *real* life would be all it took to get him back to *normal*.
He definitely made more improvements with outpatient therapy. He became more stable so that I didn't have to help him walk everywhere in the house. In fact, we ditched the gait belt pretty shortly after we came home - we used it for maybe a month, tops. It just seemed to say "old man", which was a statement that neither of us wanted to shout from the rooftops, since he is only 38, and I, 41. We felt we were prematurely becoming "old" with this whole ordeal anyway, so to get rid of one of the symbols of dependence was helpful. Besides, I enjoyed having to grab the waistband of his pants once in a while to steady him - it gave me another chance to pinch his tush.
By the time he was discharged from therapy for the first time, it was summer. June 1 was my first goal for Al to be able to go back to work. That was clearly not going to happen, so I thought maybe he would resume work in the fall.
However, he received no therapy during that time, since his physiatrist was working on reducing his spasticity in order to maximize his future therapy. June, July and August passed with no therapy and not much improvement.
Finally, in September, he was re-admitted to outpatient therapy. I thought, "This is it! This is the final push he will need to get back to his normal life!" After about 6 weeks of tweaking his gait and pushing him to use his still non-functioning arm, he was discharged again. They sent him home with exercises to do and told him that just coming to therapy wouldn't help him improve - doing the exercises daily at home would. So he was left to pursue the rest of his recovery on his own.
We have new potential for help with his recovery, though, since his parents have done some research and found a Bioness representative nearby. They took him to a consultation last week, and the equipment looks very promising. The Bioness "foot drop system" uses sophisticated technology to his foot when to lift and flex during the process of walking. The "hand rehabilitation system" uses the same technology to activate the muscles of his arm and hand so that he can grasp objects and use his hand in a more normal way.
I am excited about this, yet also a little concerned that a) our insurance may not cover it, since it is a fairly new technology, and b) the testimonials given were all by people who were still using the equipment, but so far, I haven't seen proof that it can lead to long-term independence without the equipment; i.e. is he going to have to use it for the rest of his life??? That part was unclear, although the theory seems to be that the repeated activation of the affected parts will eventually create new pathways from the brain to those parts, in sort of a reverse pathway regeneration.
Al is excited because Bioness reminds him of the 6-Million-Dollar Man, his childhood hero. I can hear him softly humming the theme music as he fantasizes about leaping over buildings, etc.
In any case, although we have new hope, the process of recovery is long and arduous. I'm getting pretty tired of it - I can only imagine how this is dragging on for my husband, who is at home alone every day and faced with his limited ability every moment.
Ignorance is bliss, but I was slowly immersed in reality as Al endured 6 weeks of inpatient therapy just to be stable enough to walk to the car, get into the car, and climb the 5 front steps of our house. He still relied heavily on my assistance to walk around the house, go to the bathroom, get a shower, and get his food.
OK, so he wasn't back to normal after 6 weeks. I figured a few more months of outpatient therapy, combined with his immersion back into his *real* life would be all it took to get him back to *normal*.
He definitely made more improvements with outpatient therapy. He became more stable so that I didn't have to help him walk everywhere in the house. In fact, we ditched the gait belt pretty shortly after we came home - we used it for maybe a month, tops. It just seemed to say "old man", which was a statement that neither of us wanted to shout from the rooftops, since he is only 38, and I, 41. We felt we were prematurely becoming "old" with this whole ordeal anyway, so to get rid of one of the symbols of dependence was helpful. Besides, I enjoyed having to grab the waistband of his pants once in a while to steady him - it gave me another chance to pinch his tush.
By the time he was discharged from therapy for the first time, it was summer. June 1 was my first goal for Al to be able to go back to work. That was clearly not going to happen, so I thought maybe he would resume work in the fall.
However, he received no therapy during that time, since his physiatrist was working on reducing his spasticity in order to maximize his future therapy. June, July and August passed with no therapy and not much improvement.
Finally, in September, he was re-admitted to outpatient therapy. I thought, "This is it! This is the final push he will need to get back to his normal life!" After about 6 weeks of tweaking his gait and pushing him to use his still non-functioning arm, he was discharged again. They sent him home with exercises to do and told him that just coming to therapy wouldn't help him improve - doing the exercises daily at home would. So he was left to pursue the rest of his recovery on his own.
We have new potential for help with his recovery, though, since his parents have done some research and found a Bioness representative nearby. They took him to a consultation last week, and the equipment looks very promising. The Bioness "foot drop system" uses sophisticated technology to his foot when to lift and flex during the process of walking. The "hand rehabilitation system" uses the same technology to activate the muscles of his arm and hand so that he can grasp objects and use his hand in a more normal way.
I am excited about this, yet also a little concerned that a) our insurance may not cover it, since it is a fairly new technology, and b) the testimonials given were all by people who were still using the equipment, but so far, I haven't seen proof that it can lead to long-term independence without the equipment; i.e. is he going to have to use it for the rest of his life??? That part was unclear, although the theory seems to be that the repeated activation of the affected parts will eventually create new pathways from the brain to those parts, in sort of a reverse pathway regeneration.
Al is excited because Bioness reminds him of the 6-Million-Dollar Man, his childhood hero. I can hear him softly humming the theme music as he fantasizes about leaping over buildings, etc.
In any case, although we have new hope, the process of recovery is long and arduous. I'm getting pretty tired of it - I can only imagine how this is dragging on for my husband, who is at home alone every day and faced with his limited ability every moment.
Stroke Rehabilitation Begins
Here, I will compose a very general timeline of what has happened over the past 10 months to bring you up to speed on where Al is now.
The stroke occurred on January 5, 2011.
January 11, 2011: Al was transferred to the Sparrow Inpatient Rehabilitation Center. Same floor, same hospital, different feel - more like an asylum than the cozy, hotel-room feel of the ICU. The original estimates of Al's hospital stay were 2-3 weeks, and I had the ignorant notion that he would be all better in those 2-3 weeks. Soon the 2-3 weeks turned into 4-6 weeks of inpatient therapy, and the "all-better" estimate, in my mind, was becoming more like 6 months. I figured that Al might be able to go back to work by June 1. The doctors and therapists let me go on in my naive thinking for a while, but gradually let on that stroke rehabilitation takes many months, and even years. In fact, a stroke victim isn't considered fully recovered until after the 2-year mark.
(To read more, visit my other blog and read, Chronicle of a Stroke, One Month and Beyond.
February 17, 2011: Al came home from the hospital, 6 weeks and 1 day after his stroke. The stroke had left him moderately paralyzed on his left side. He came home with a wheelchair, which he didn't need in the house, but was very useful for trips outside the home. He was able to walk with the aid of a leg-length brace (a knee-ankle-foot-orthosis, or KAFO), a quad cane, and a gait belt, which I used to help him keep his balance for the first several weeks. He was unable to do much except sit down and watch TV and use his laptop one-handed.
I stayed home from work to be with Al for several weeks. I mainly helped him work on daily exercises, drove him to and from his outpatient therapy appointments, and tried to keep on top of parenting our 4 kids, which was pretty well outside of Al's skill set for several months.
(To read more, visit my other blog and read: Chronicle of a Stroke, Month 2 and Chronicle of a Stroke, the 3-Month Mark.)
June 2011: We sought the help of a physiatrist, a physician who specializes in physical and occupational therapy. He began treating Al with Baclofen, an anti-spasticity drug. His primary focus was to get the spasticity and tone under control before prescribing further physical and occupational therapy. His reasoning: going to PT and OT without getting the spasticity under control would be like trying to drive a car with the parking brake on. We spent a good portion of the summer tweaking the Baclofen dosage, as well as adding Ritalin to stave off Al's chronic sleepiness and potentially boost his stroke recovery, a theory that is supported only by various anecdotes from other stroke survivors.
September - October 2011: Al entered his second round of outpatient physical and occupational therapy, during which he "tweaked" some of his skills. During the last week or two before his discharge, the OT challenged him to become more self-sufficient in his ADL's (activities of daily living), specifically to take a shower by himself and get himself dressed. Al passed both tests with flying colors.
That all brings us up to today, November 7, 2011. Al regained quite a bit of his mobility, balance and independence, but he is far from fully recovered. He has the use of his left shoulder and minimal use of his upper arm. He has no use of his lower left arm, hands or fingers. The left side of his face is still numb, although he can still speak fairly well and just needs to be careful about chewing thoroughly and swallowing. He still uses a cane to walk, although he challenges himself to walk without it regularly, and the KAFO has been broken down to be an AFO (ankle-foot-orthosis). He is beginning to drive, cautiously and only short distances. Otherwise, it seems as if we're at a standstill. Hopefully that is not really the case, but it's difficult to tell how things will progress from here.
The stroke occurred on January 5, 2011.
January 11, 2011: Al was transferred to the Sparrow Inpatient Rehabilitation Center. Same floor, same hospital, different feel - more like an asylum than the cozy, hotel-room feel of the ICU. The original estimates of Al's hospital stay were 2-3 weeks, and I had the ignorant notion that he would be all better in those 2-3 weeks. Soon the 2-3 weeks turned into 4-6 weeks of inpatient therapy, and the "all-better" estimate, in my mind, was becoming more like 6 months. I figured that Al might be able to go back to work by June 1. The doctors and therapists let me go on in my naive thinking for a while, but gradually let on that stroke rehabilitation takes many months, and even years. In fact, a stroke victim isn't considered fully recovered until after the 2-year mark.
(To read more, visit my other blog and read, Chronicle of a Stroke, One Month and Beyond.
February 17, 2011: Al came home from the hospital, 6 weeks and 1 day after his stroke. The stroke had left him moderately paralyzed on his left side. He came home with a wheelchair, which he didn't need in the house, but was very useful for trips outside the home. He was able to walk with the aid of a leg-length brace (a knee-ankle-foot-orthosis, or KAFO), a quad cane, and a gait belt, which I used to help him keep his balance for the first several weeks. He was unable to do much except sit down and watch TV and use his laptop one-handed.
I stayed home from work to be with Al for several weeks. I mainly helped him work on daily exercises, drove him to and from his outpatient therapy appointments, and tried to keep on top of parenting our 4 kids, which was pretty well outside of Al's skill set for several months.
(To read more, visit my other blog and read: Chronicle of a Stroke, Month 2 and Chronicle of a Stroke, the 3-Month Mark.)
February - June, 2011: Outpatient Rehabilitation at Sparrow Professional Building. Al attended outpatient therapy approximately 3 times a week for 2 hours a day. One hour a day was spent in Occupational Therapy, practicing upper-body useage and everyday activities, and Physical Therapy, which focuses on the lower body, walking, and balance. During this time, Al made some improvements, but we were discouraged by the lack of encouragement from his therapists, as well as the apparent lack of experience that most of those therapists had with stroke victims. They seemed to treat Al as a victim of a sports injury rather than a stroke patient. And neither did they send him home with exercises to do or goals to try to reach.
June 2011: We sought the help of a physiatrist, a physician who specializes in physical and occupational therapy. He began treating Al with Baclofen, an anti-spasticity drug. His primary focus was to get the spasticity and tone under control before prescribing further physical and occupational therapy. His reasoning: going to PT and OT without getting the spasticity under control would be like trying to drive a car with the parking brake on. We spent a good portion of the summer tweaking the Baclofen dosage, as well as adding Ritalin to stave off Al's chronic sleepiness and potentially boost his stroke recovery, a theory that is supported only by various anecdotes from other stroke survivors.
September - October 2011: Al entered his second round of outpatient physical and occupational therapy, during which he "tweaked" some of his skills. During the last week or two before his discharge, the OT challenged him to become more self-sufficient in his ADL's (activities of daily living), specifically to take a shower by himself and get himself dressed. Al passed both tests with flying colors.
That all brings us up to today, November 7, 2011. Al regained quite a bit of his mobility, balance and independence, but he is far from fully recovered. He has the use of his left shoulder and minimal use of his upper arm. He has no use of his lower left arm, hands or fingers. The left side of his face is still numb, although he can still speak fairly well and just needs to be careful about chewing thoroughly and swallowing. He still uses a cane to walk, although he challenges himself to walk without it regularly, and the KAFO has been broken down to be an AFO (ankle-foot-orthosis). He is beginning to drive, cautiously and only short distances. Otherwise, it seems as if we're at a standstill. Hopefully that is not really the case, but it's difficult to tell how things will progress from here.
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