Friday, December 30, 2011
Functionality of Another Kind
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
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
Anxiety Relief
And then, of course, my husband's stroke added a lot of anxiety. I had generic anxiety about everything the future held, because I had no idea what the future held (and I still don't). However, we are 10 months "into the future" since the stroke, right? And we're still alive and making progress and learning how to live again.
There is still anxiety, but I try very hard to put the Lord's words into practice, "Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." (Philippians 4:6-7).
Also, when dealing with anxiety about money, I cling to this verse: "Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more than food, and the body more than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Can any one of you by worrying add a single hour to your life?" (Matthew 6:26-27)
I think that, even though my children have never gone without food, clothing or shelter, it was a long and hard lesson for me to learn that God provides for His people. Always. Since the stroke, we have had some amazing "windfall" moments that I still can't even believe.
At first, Al was covered by short-term disability for 6 weeks at full pay. Then, for the remainder of the 6 months after his stroke, he received 2/3 pay. Once the short-term disability discontinued, we were covered by long-term disability, and that was about the same time that Al's social security disability kicked in. However, it took MUCH longer for our dependent benefits to kick in, but LTD was only paying us the bare minimum, as if we were already receiving the dependent benefits. During that time, I had taken 6 weeks of FMLA leave (which is unpaid), and I had 4 weeks of unpaid vacation to use up in the summer. Money was tight to say the least, but we still made ends meet.
Now for the windfall moments. There were many, and I will simply list them because I am still profoundly moved by the generosity of people, and that God moved those people to care for us.
A friend of ours, who is suffering from MS and is confined to a wheelchair - and who undoubtedly knows what kind of trial we are facing - gave me an envelope. Al was still at the hospital and I was there every day, sometimes several times a day. Inside the envelope was a $50 bill, to which she attached a little sticky note, saying "for parking, meals or whatever." (She also told me that if I wrote her a thank you note, she would run over my toes with her wheelchair! She's a fiesty one, that woman! I could learn a lot from her.)
An envelope arrived in the mail one day from a person whose name I didn't recognize. I opened the card, and it was from a friend of my husband's brother, whom we had never met. But my brother-in-law told her about Al, and she was moved to help us. Her husband had passed away in the previous year, so she knew what it was like for me/us to be struggling with finances. She included a check for $100.
During the summer, with intermittent work and FMLA time at my back, money was tight once again, and I received a very much unexpected bonus of $750 from the company I work for. I had only completed one school year and had a vague memory of being told that I would earn a performance bonus each year. This one came at just the right time. And on the very same day, I received notification from Kohls that the balance of my Kohls card on the day of Al's stroke, was completely forgiven. They have a program called Account Ease, just in case a death or disability affects the family. I'm glad I chose to enroll in the program!
Toward the end of summer, after I had taken all of my unpaid vacation, and money was exceptionally tight, I had the brainstorm for a fundraiser. I really felt that it was an idea that came from the Lord, so I ran it by a few of my friends, who agreed that it was a good idea. I had a charity yard sale, and asked people to donate goods to the sale. My friend lent us her garage (since we don't have one) and she actually did much of the organization. By the time the sale started, her garage was completely packed with furniture, household goods, clothing, toys, etc. that people had donated. The sale was Labor Day weekend, and it was excruciatingly hot and humid. But from the moment we opened the sale on to the end of each day (Friday and Saturday), there was a non-stop swarm of people. I had no doubt that God inspired every one of those people to attend that sale.
That yard sale earned us an epic $1300! In addition, people who weren't able to donate or attend the sale sent us cash and checks to help out: $40, $50, $25, $100. One friend sent me a check for $500, and another group of friends - lay men who are living single for the Lord - had been saving up money from the day that Al had his stroke. They presented us with $500 in cash! In all, we were blessed with almost $2500 toward medical and other expenses.
Later in September, we received notice from Sparrow Hospital that they had "reduced our debt by 100%", meaning they had forgiven the remainder of our $4000 debt.
As I mentioned earlier, even though my husband received his social security benefits 6 months after his stroke, waiting for the dependent benefits was a grueling trial. Each month, we would make our mortgage and other payments late, our account would dwindle down to nothing, and the new batch of SSD would come in just in time. The dependent benefits didn't come in until this week.
This week, we received another windfall of 4 months worth of dependent benefits. Finally. Just in time for the holidays.
To top it off, we received another letter and a check from the group of men I mentioned above. They are celebrating 40 years of being a lay brotherhood and wanted to give a blessing to a needy person or family. Inside the letter was a check for $1000.
With that final check, I think God finally got through to me (I'm kind of thick-headed, wouldn't you say?). I really DON'T have to worry about money or material things. I don't have to worry about our mortgage payment and car repairs. God is enough and He is a God of miracles. Money truly is no object to Him, the Creator of the Universe. I think (I hope and pray) that I am finally done worrying about money.
Please remind me of that the next time that I am tempted to worry. Instead, please tell me, and please be reminded in turn, to "Cast all your anxiety on him because he cares for you." 1 Peter 5:7
Glimpses of "Normalcy"
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!
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.
Thursday, November 10, 2011
Family therapy
As I mentioned in my post about my struggle with depression, I always wanted to be a wife and a mom. Therefore, I thought I was most well-suited to take on marriage and motherhood as my "career." The marriage part was fairly easy for me - I love being married, and our relationship has never had any major difficulties.
It was the motherhood part that took me totally by surprise! I always want to be 100% clear about this: I LOVE MY FAMILY and MY CHILDREN ARE FANTASTIC. But nothing in my life had really prepared me for the absolute sacrifice and laying down of my life that parenting entails. I came face to face with my own selfishness in a way that I never had before. It was hard to be in complete demand 24/7 by a tiny little human being who needed me more than anyone else in the world, even more than her daddy. I think that, in a way, I realized that my life would never be the same again, and I would never again have the same "freedom" I did before I had kids.
Having 2, then 3, then 4 kids right in a row definitely drained me physically and emotionally. I lost my temper a lot. I escaped a lot into video games or TV. I even hid from my kids from time to time.
I began homeschooling my first-born the same year that baby #4 was born, and it was kind of like a fresh start. Homeschooling a Kindergartener was e.a.s.y. Even with a newborn. I loved the schedule, and everyone seemed to get enough of mom.
I started schooling my second daughter the following year. It was still fairly easy, but child # 2 had a more challenging personality. And trying to find time to love, educate and mother 2 homeschoolers, and pre-schooler and a toddler was becoming more overwhelming. It was in December of that year when I was finally diagnosed with depression. I started taking Zoloft, and things became manageable again.
Two or three years into homeschooling, as I had more to teach the kids and eventually added one more student to the mix, I became overwhelmed once again. In all, I taught homeschool for 5 years, but during the last 2 years, I was "escaping" from the kids a lot more, i.e. sleeping in late, canceling lesson plans, taking 2-3 hour naps in the afternoon while my kids ran the roost. At the time, my doctor and I were on the verge of calling it chronic fatigue syndrome for lack of any better way to define what was going on with me. In retrospect, I'm sure I just didn't have my depression under control. I had stopped taking Zoloft due to the weight gain. Effexor XR kept me at a baseline that prevented me from wanting to die or do anything drastic, but I just wanted to escape because life was overwhelming and I felt like I had no control over anything.
I was doing what I always wanted to do. And I felt like a failure at it.
And all the negative stuff I felt about myself was fairly apparent to my kids. So, my young kids had a mom who was often depressed, occasionally screamed at them out of frustration, and once in a while told them "Just get away from me." Needless to say, my kids may have learned some less-than-healthy ways of dealing with emotions. The biggest issue in our house is anger and rage. None of us have a very good reign on our temper. We are all very good at speaking our minds and expressing ourselves, but sometimes a little too well as we have let many angry words fly (in the form of yells, screams, hisses, bellows, roars, and cries). And not only has the exchange of words gotten out of control - there are dents in the walls and holes in our interior doors due to the fury often expressed by our precious little munchkins.
For years, I had asked my husband to agree to family counseling. He never really thought our issues were serious enough to warrant counseling. Until now.
Since Al's stroke in January, the kids have done remarkably well. But they have, understandably, had a hard time with the fear and anxiety that came with it. They saw Al one day as their fearless, capable, strong Daddy, and the next time they saw him, he was lying in a hospital bed with slurred speech and completely unable to move half of his body. It was a very scary time, but he often reassured them with his whacky sense of humor. He was at the hospital for 6 weeks, during which time I was a single parent.
Once Al returned home, it wasn't much different since Al rested a lot and wasn't able to handle much commotion. Our son even asked him, "Now that you're home, do we still have to obey you?" I think there was a real lack of understanding of who Dad had become. He was still speaking slowly, so it may have seemed as if he wasn't as mentally competent as he had been.
One night, our daughter and I had a long, heated discussion about Daddy helping her with her homework. She was in 2nd grade and she wanted me to help her with math. I was doing the dishes, so I asked her to have Daddy help her with her homework. I told her it would be good for him to help her. She insisted that he wouldn't know how to do it. Second grade math! I still don't quite understand if she was just a little afraid of how Daddy had changed, or if she seriously thought he couldn't do 2nd grade math.
Al has tried to become more involved in our parenting efforts, but he remains quite limited by his physical disability - he can't even physically best our 6-year-old. And he can only take so much chaos. It seems the kids still aren't taking him seriously.
A few months ago, Al finally agreed to pursue family counseling. We have only met with our counselor 4 or 5 times, the first few times as a couple, and then one time with Hope, our oldest. The counselor wanted to meet with her first, and then gradually meet with the other kids.
As of yet, we don't have much insight to share from family counseling. This is just a short tale of the journey that has led us here.
Wednesday, November 9, 2011
Introducing ME
Monday, November 7, 2011
This Will Take How Long???
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
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.
Sunday, November 6, 2011
Chronicle of a Stroke, Day 3
Originally posted on January 17, 2011
January 7, 2011.
In the wee hours of the morning - maybe 3 or 4 AM? - the nurse came to put a new IV in Al's arm. I'm not sure why, but he already had 2 in his right arm, and they were both bothering him greatly. So the nurse decided to try his left arm. I was glad he wouldn't feel that one as much, but I was relieved at the same time to hear him say "OW!" I knew his arm wasn't completely dead!
Around 5 AM, the nurse came in to take Al's vitals, and at this point, he awakened easily and was using fairly easy speech with full sentences. I was thrilled to hear his voice! He was also able to lift his leg and feel more in his left arm. Throughout the day, we waited for confirmation that he could be moved back out of ICU (although, to be honest, I was thankful for the private room and quiet environment.) However, the stroke team decided that Al should still spend another night in ICU for further monitoring.
However excited I was about his alertness, I was still scared. My fear for his life was dissipating, but I was still afraid the unknown future. I was slowly starting to realize what a stroke does. It doesn't just cause temporary numbness and tingling. Al had lost most of the feeling and mobility in his entire left side, and some of that had returned, but I had been hoping that it would all just gradually return, like a sleeping hand or foot slowly wakes up again. But that isn't how it works after a stroke. The brain has to create entirely new pathways to communicate with the affected side.
As Al began to feel more awake, he told me he felt like he could just get up and cruise around with a walker. But what he and I didn't fully realize was that even though he thought he could tell his left side to move, his brain simply wouldn't obey. As one physical therapist put it, "His brain is ignoring the left side of his body."
I went home once again to get a shower and make a few phone calls. I was pleasantly surprised to find my house entirely clean. A few of my neighbors had rallied to take care of the mess that had been left behind in our post-holiday rush. Shortly after arriving home, my friend Jan came by with all my laundry, fresh and clean. Oh, the blessings of friendship!
Back at the hospital, later on in the afternoon, I was trying to doze and I prayed that I would fall asleep quickly. The thought crossed my mind that maybe this was one of those awful nightmares, and I would be so thankful to wake up and have Al sleeping next to me in our own bed. And he would be perfectly healthy. Sadly, I soon realized that this experience had far too much detail to be a dream.
As afternoon drifted into evening, I made sure Al had dinner and his beloved bottle of Sprite. I asked him about 48 times if he was OK and if he needed anything else. Then I finally convinced myself to leave. I went to pick up my children at my friend's house at around 7:30, and when she learned that Al was still in ICU, she offered to have them stay one more night. It was an arrangement that everyone was happy with, and I went home to sleep. I was tempted for a few moments to just head back to ICU and sleep next to Al a second night, but as I stopped by Phil and Michelle's house to pick up a few things, Phil convinced me to go home to sleep. I had to admit that my own comfy bed was much more appealing than the recliner at the hospital. I took a Unisom and was able to sleep straight through until 8 AM. To be honest, I could have slept longer, but I wanted to get back to my hubby's side.
Chronicle of a Stroke, Day 2
January 6, 2011
I had been dozing in the chair next to my husband, content to hear him breathing. When the nurse came in to wake him, I realized that he was still as groggy as the night before. He had a hard time waking up and keeping his eyes open. His speech was getting more labored and muddled. I figured he was still fatigued from the previous night's ordeal. However, when the stroke team came in to visit him, they were visibly concerned at his overly sleepy state and his complete lack of sensation or movement on his left side. They ordered yet another CT scan (CT #3!) to find out if there were any new developments. (All this time, and we were still on the waiting list for an MRI!)
The next 24 hours were the most blurry, perhaps due to lack of sleep and the surrealism of it all. I had decided to go back home (thank goodness the hospital is only 6 blocks from our house), and get some more clothes to send to my friend's house for my kids. Some time during that hour (or was it two hours? Maybe 3? I can't really remember), I got a call saying that Al was going to be moved to Neuro ICU so they could keep a closer eye on him. I think that's when I fell into a full-fledged panic. I called my mom and sobbed to her over the phone that Al might have had a stroke. I told her that the idea of telling Al's parents was terrifying. We hadn't called either family until then because we wanted to have answers before worrying them, and we were hoping all would be well by the next day.
Once I returned to the hospital, I got the definitive word – first from my husband, and shortly thereafter from the stroke team, that the 3rd CT scan showed an area of stroke.
Damn it! It really was a stroke. And I was afraid it would take my husband away. Even if he survived, I wasn't sure what he would be like when it was all over. I was slowly learning that a stroke isn't necessarily an instantaneous event. I would later learn from one of Al's nurses that a stroke can progress for 3-5 days. I was growing more worried since Al's condition had already deteriorated quite a bit from the night before; I didn't want to know how much worse it could get.
I called Al's parents, and thankfully his dad answered. For some reason, I was able to hold myself together enough to tell him the news; I'm sure I wouldn't have been so composed if his mom had answered. There was no tactful way to say it, so I just came out and said, "Al had a stroke. It's in the area of his brain where his tumor was. He's in ICU. He can't feel or move anything on his left side." It seemed my words were so blunt, but there was really no other way to say it.
There had been a flurry of phone calls for the past day, but at one point, I realized that our good friends Michelle and Phil may not know what was happening yet. I called and left an abrupt message: "Al had a stroke. We're in the ICU. Just thought you'd like to know." Phil was there within the hour. He looked sad and concerned that his friend had once again landed himself in the neuro ICU. (A few years back, Al had flipped his scooter and managed to break his scapula and 3 ribs. Neuro ICU for the first night was just precaution, and then he spent 2 days in the neuro / ortho step-down unit.) And obviously even more concerned since a stroke is much more ambiguous in terms of damage and extent. He visited a while and then offered to retrieve anything we needed from our house. I asked for my laptop so I could get online and update people en masse, instead of trying to catch the now-steady stream of phone calls. A while later, Phil's wife, Michelle returned with the requested computer and my warm bathrobe, which turned out to be a gigantic blessing later in the night when I slept in a vinyl chair beneath a frigid window.
At around the same time, our family doctor – and long-time friend of Al's and mine – showed up to check on us. His reaction concerned me the most as he looked over Al and tested the feeling on his left side. As I stepped outside the room with Dr. Pete, he told me more than he had dared in front of Al. He voiced his concern about the density of Al's stroke, and how it was devastating to see it happen to a friend. I asked the scariest question of all: Was there a possibility that Al would never regain the use of his left side? Dr. Pete admitted that it was a possibility, but not a very big one. Al is young, and he had learned to walk again once before, after his childhood brain tumor. But I still cried and Dr. Pete hugged me as he got ready to leave.
Al and I settled in for his second night in the hospital. He was still as sleepy as ever, so it didn't take much to get him ready to nod off. I, however, had to take a long walk to use the bathroom, and then try to make myself as comfortable as possible in a vinyl recliner.
I had slept for maybe an hour when I heard Al's nurse come in and try to wake him to take his vitals. She started out in a loud whisper, “Albert, wake up.” Nothing. She got a little louder, “Albert, Wake Up!” She started tapping his shoulder and leaned her face in close to his. I was quickly growing concerned. He simply wasn't rousing. After a few more minutes of poking and prodding, Al began to mumble something incoherent. I tried not to panic, but my fear was that the stroke was taking more away than just his movement. I prayed to God that his mind would still be intact. As the nurse's voice had escalated to a yell, Al did not open his eyes, but stated in a very determined, deadpan voice, “You're yelling in my face.” Ha! His mind was still there! He told me later that the nurse had breath that would wake the dead, and he had been trying to formulate a tactful sentence that would convey the message to her.
After the vitals were taken, we drifted back off to sleep; Al more deeply than myself, I'm sure. Still, I was able to sleep more soundly than the night before, knowing Al was breathing a few feet away from me.
Chronicle of a Stroke: Day 1
January 5, 2011
Five days after the New Year, three days into a new school week. We were still winding down from the holidays, and our bags weren't even unpacked from our recent trip up north. Near the end of the work / school day, I received a call from my husband. It seemed a little odd because e-mail is our standard mode of communication during the work day, and we had already bantered back and forth quite a bit. It was also just a little different that he was calling me from his desk phone instead of his cell phone. Oh well, I was sure he just had a quick question about the evening's activities or something.
He began by telling me that he had been having short periods of numbness and tingling down his left side for a number of weeks, once or twice a day. He hadn't mentioned it because he didn't want to worry me. But now, he was having increasing numbness on his left side that hadn't gone away. He was calling to tell me that his boss was going to call 911. He didn't want me to be blindsided by getting a call saying he was transported by ambulance to the hospital. But he seemed very calm and collected, so I was sure the 911 call was just a precaution – they didn't want him driving himself to the ER with limited sensation on his left side. He had also had similar symptoms a few other times: once during a time of high stress in his life, and the doctors concluded it was just anxiety, and another time when he developed Bells Palsy, where the left side of his face was numb and limp for a few weeks. What I didn't learn until later was that he had already fallen down and hit his head, and that his boss saw that the left side of his face was drooping.
The Stroke
Al, however, said he had always felt like a ticking time-bomb, as if he knew in the back of his mind that something like this was bound to happen to him.
When Al was 6 years old, he had an inoperable brain tumor, a cystic astrocytoma, to be exact. It was too deep in his brain to be removed surgically, and there was a cyst attached to it that continued to fill up with fluid and press on the motor nerves for the left side of his body. After the first surgery, the doctors put a shunt in so that they could more easily drain the cyst. That was all they could do, or so they thought. But his parents consulted the best surgeons in the business and eventually convinced one of them to do radiation on Al's tumor, even though the medical evidence at the time showed that radiation would be useless on that particular type of tumor. The bottom line is that after a year of treatment and surgeries to drain the cyst, the tumor was completely gone. Even the doctors agreed that it was miraculous - there was no reason that the radiation should have worked, but it did!
For 31 years, Al has been tumor free. We often used the large, horseshoe-shaped scar on Al's head to witness to others about God's healing power.
However, Al had always wondered if his past would come back to haunt him.
And in a way, it did.
Once the doctors determined that he was indeed experiencing a stroke, they told us that it was in the exact location of his tumor 30 years ago. Our doctor explained that the radiation must have damaged the vessels in that part of his brain so that the stroke was inevitable.
Now, we are working on Al's rehabilitation once again. And we are actively putting our hope in the God that saved Al's life 31 years ago!
Welcome to My Blog!
I will attempt to write along these 3 threads in this blog - my own personal therapy, my husband's stroke rehabilitation, and our family therapy - although I'm sure there will be much overlap of the 3 arenas.
I will also include many "flashbacks", since we are 10 months into the stroke drama. Try to keep up!