Sometimes you have to take a step backwards in order to get a good perspective on a situation. It's been several days since I've seen Brad, and sometimes progress is easier to note when you're not nose-to-nose with the situation. This evening there were several small but important triumphs. For instance, while sharing supper with him, I noted that he wiped his mouth and chin with his napkin without being told to do so. After months of being reminded, he seems to be remembering that small item more easily now. When I brought out my tablet, I laid it on the table for him to use, and he left it on the table. This is significant because he habitually wants to hold the tablet in his hand, which then results in his inability to manipulate the tablet, (since he only has one hand) so we've been working on teaching him to leave the tablet on the table. He also typically likes to tap on the computer screen, but finessing other motions has previously escaped him. I've brought a variety of simple games that require other finger motions (such as PacMan and Air Hockey) but he has consistently preferred to simply tap the screen. Tonight when I showed him Angry Birds and demonstrated the slingshot, he got the idea and played the game successfully using the proper finger motions. (This will be important for his re-introduction into the computer world.) Additionally, we worked on Life Skill #1 : Operating the TV remote control. After showing him the channel button and the volume button a number of times, he got it down pat and we spent an hour enjoying channel surfing just like regular Americans. His interest in the TV is rapidly developing and we take that as a good sign. He had a lot to say tonight, and grasped my hand while he made speeches (another new development); some of his words made sense, even if most did not. He was awake until 8pm tonight. In the two months he's been back, his bedtime has gone from 6pm to 7pm and now seems to be 8pm, another excellent sign of progress.
Last week we noticed that Brad was paying attention to the TV for the first time. Today he sat in an easy chair with a remote in his hand, flipping through the channels just like he'd been doing it his entire life. We are glad to see this, as it shows increased awareness and an improvement in his attention span. Today he ate saltine crackers, and this is worth noting because we've been handing him a variety of salty yummy snack foods, and all have been refused: potato chips, pretzels, peanuts. Today he wanted plain saltines and refused the saltines that were spread with yummy things like peanut butter and chocolate. Wes stopped by and spent an hour improving the nursing home's internet connection, demonstrating every step of the process to Brad, who sat in rapt attention for the duration of the project. Later he took himself on a jaunt outdoors at dusk, traveling the circumference of the nursing home and wheeling himself most of the way-- another first. In addition, he didn't go to bed until 8pm, which set a new record for him. He's no night owl, so we're glad to see him able to stay awake for longer periods of time. Next thing on our wish list is for Brad to improve his ability to remember words for more than a few moments; life will be so much better for everyone, especially Brad, when this ordinary but miraculous thing occurs.
Today was a gloriously warm day; it felt like the first day of summer in Montana. Brad wore shorts today! He was in good spirits, smiling, talking, and eating today. Nina and I had dinner with Brad and noted several recurrences of positive forward motion: He rolled his wheelchair from table to table, greeting other diners today, and having a few words of unintelligible advice for each of them; he paid rapt attention to a sports game on the big screen TV; he listened to a conversation while he was eating, demonstrating increasing ability to split his focus. After dinner, we gave him a computer hacking magazine to read, and asked him what the article was about. He promptly picked up the magazine and began to read it out loud. His tone and inflection were perfect, with proper pauses for punctuation and a good strong conversational voice. It's just too bad that the language he was speaking wasn't English. In his head, he's making sense, but it's getting scrambled on the way out. Next I gave him a computerized version of the old Simon game -- where the computer plays a tune that increases in length incrementally and the player must repeat the song note-perfect. Brad gave me the "Oh come ON!" look, like "Don't insult me with these baby games!" and I replied, "If you think it's too simple for you, prove it to me!" and he proceeded to do just that, playing the game with aplomb and even listing the musical intervals he was playing-- this time in perfect English. Once again we have reaffirmation that there's nothing wrong with his memory, and his musical skills are all still intact.
It would be so much easier to manage this post-stroke recovery if only stroke recovery were just like recovery from any other illness. In any other illness, if you're a little bit better on Tuesday, you're usually even better still on Wednesday and even more so on Thursday. With stroke, we're traveling an unpredictable zig zag line of recovery that's taking us in the general direction we want to go, but not necessarily on the most direct route. If Brad is able to remember my name on Monday, it would be wonderful if he could also remember my name on Tuesday; if he can stand for four minutes on Tuesday, it would be great if he could stand for five minutes on Wednesday. But it doesn't always work that way, and so the project of rebuilding Brad's brain goes in a hurky-jerky manner that no one can predict.
We've been telling Brad for weeks that we were going to load him up into my van and take him out for a ride. Because Brad has been working to develop his strength and skill at standing, and because he needs to transfer from his wheelchair to a car seat in my van, we thought it would be a fairly simple matter: stand, pivot, sit. Unfortunately, Brad's standing-up skills come and go. Saturday, it was gone, and so on Saturday when we tried to heave him from his chair to my van, he was unable to assist in the maneurvre, leaving Jerry (the main heave-ho person) lifting his entire weight. This was uncomfortable for all involved, and it scared Brad, so we scrapped the thought of getting Brad out and about for now. This is a minor tragedy, because Brad is energized and stimulated by outings and social contact, of which he has had precious little since returning home. He has had only two non-medical outings in the six months since his stroke, one of which was the airplane trip home from Miami, and the other was the fundraising party. We know he wants to get out into the real world, but one of two things needs to happen first: He either needs to be able to stand more reliably, or we need a handicap accessible van. Either of these options may take months, which is tragic indeed, because his recovery could progress so much faster if he weren't confined to such a small space for so long of a time. For such an active, intelligent mind, being cooped up not only inside his brain but also inside a small nursing home environment has got to be excruciatingly dull. If anyone has anything they'd like to contribute to the search for a vehicle - whether time or money - please let us know.
To cheer us all up after this disappointment, I read aloud a chapter from an interesting book I'm reading called "Conquering Stroke". It's about one woman's journey from being told she would never walk or talk again, to being 90% recovered. As I read the lengthy but thoroughly inspirational Forward to the book, Brad listened in rapt attention, as the rest of us wiped away tears. We reminded Brad: It's a long journey that only he can take. We're only here for support. "Stinks!" he said. It does indeed, we replied, but the only thing we can do is to keep moving forward, one step at a time.
This evening Brad was in rare form in spite of having had a strenuous day of physical therapy. When Jerry and I pulled into the parking lot, Nina and Brad were enjoying the spring sunshine on the backyard “patio” (for which we one day hope to have a picnic table donated). When we pulled up, Nina rolled Brad over to our classic soccer-mom van and said, “Brad, this is the vehicle we’re going to take you for a ride in!” and Brad said, “Ahhh!” in an enthusiastic voice. “And we’re going to take you grocery shopping!” “Ahhhhh!” said Brad. “And maybe we’ll go out to eat!” AAAAHHHHHH!” said Brad with enormous feeling. And when Nina rolled him away to go back indoors, he said in a plaintive voice, “Go home?” and Nina said, “Yes, we’ll try to get you home, but just for a visit” and he grinned.
Jerry brought a Wii which was donated by kind people at the Special Olympics, and he went about setting the system up. As we waited, I handed Brad a popsicle. Brad was watching Jerry intently, while also eating the popsicle. This may seem trivial (chewing gum and walking) but it represents another milestone in Brad’s recovery, because previously he was always intently focused on a single thing at a time: he could eat, or he could listen to a conversation, or he could watch what someone was doing – but he could only do one item at a time. For him to be nonchalantly eating a popsicle while being focused on something other than eating is an enormously positive step, and we all noticed this new development.
The limited number of sports games we have available on the Wii all involve swinging an arm, which Brad can’t yet muster, even with his good arm. However, he has very vigorous hand motions and spent a good hour intensely interested in the games Jerry showed him: first golf, then boxing. For Brad to spend an entire hour focused on a single task is unprecedented, beating his previous record (40 minutes on a tablet game) by a mile. When he first arrived back in Montana, his attention span was about ten minutes. Therefore, we are calling the Wii a rousing success, and are now interested in getting feedback from other Wii fans concerning other games Brad might enjoy on the Wii.
When Jerry set up a boxing match, he handed Brad the left hand controller, while he kept the right hand controller, and the two of them made an unbeatable team, scoring knock out after knock out, winning the round. For some reason, Brad seems more enthusiastic over the Wii than he is over dominoes. When he ran out of steam and we put him to bed, he fell asleep smiling.
And we drove home smiling, too.
This evening I went out to visit Brad, taking with me a roast chicken, which is one of his favorite dishes. He was having an off day and didn't seem at all interested. I sat at the table with him and a new arrival, Ruth, who just moved into the Elkhorn yesterday. Amazingly enough, Brad turned to her and started to talk to her, which marks the first time I've seen him pay any attention whatsoever to any of the other residents. Of course, she couldn't understand a single word he was saying, and turned to me for translation. I explained that Brad had a stroke and was practicing his vocabulary skills on her. She mentioned that the reason she was at the Elkhorn was because she suffered a TIA - a small temporary stroke - and was receiving care for that. As soon as she mentioned that, Brad came forth with an all-knowing, "Ahhhh!" in a Zen Master sort of tone that clearly indicated, "So, you TOO!" This is just one of the many many reaffirmations we've had that Brad understands 100% of what's happening around him, even though he cannot always respond appropriately.
Because Brad dropped a few pounds when he was in a funk last week, we're particularly anxious to get good food into him, but he was not in an eating mood this evening in spite of the deliciousness of the rotisserie chicken I brought. "Are you hungry?" I asked. "No," he replied. "Do you want some chicken?" "No," he said. "Just a taste?" "No." "Want to smell it and then decide?" "No." So I asked Ruth if she would like to share my roast chicken and she was delighted to do so. As Ruth and I sat in front of Brad, smacking our lips and licking our fingers, with the odor of herb roasted chicken wafting around the room, Brad finally piped up and said perfectly clearly, "One bite." So I gave him a single swallow of juicy chicken and then resumed my lip smacking and finger licking. A few moments later he said, "I'd like some more." He then proceeded to eat an entire leg and thigh, followed by a dish of grapes, followed by some Easter chocolate. So much for not being hungry!
When he was done eating, he turned his wheelchair around and started wheeling himself back to his room. He recently switched rooms (to get a quieter roommate) and I was interested to see whether he would roll himself to his old room or his new room. He went directly to his new room without hesitation. We've been wondering if his inability to retain words is just due to his missing language synapses, or if his memory functions were also discombobulated, but this small action seems to suggest that his memory is just fine, thank you. He was tired out and I stepped out of the room as the CNA dressed him for bed. When I returned to the room once he was in bed, he said to me perfectly clearly, "Why are YOU still here?" It amazes me that so much of what he says makes no sense whatsoever; it's like he's speaking Vulcan or something. But when he says something that makes sense, it's entirely sensible. He doesn't dangle his participles or mix up his syntax or mis-pronounce words-- when his language is there, it's all there. And then a moment later, it's gone again.
I hooked him up to some nice going-to-sleep music on an MP3 player and marveled, as I was tucking him in, that there's a lot he can do when he's not thinking about it, but as soon as he thinks about it, he can't do it. Like yesterday when he shrugged, moving his paralyzed right shoulder without even realizing he was doing it. When we asked him to do it again, deliberately this time instead of unconsciously, he couldn't. When he's angry or frustrated, he shouts, without hesitation. But when we ask him to raise his voice because we can't hear him, he can't. The conscious mind has been damaged, but the unconscious mind is all still intact. How can we use that to Brad's advantage? Send us your suggestions!
It's been a busy couple of days for Brad. On Sunday he spent the morning at the VA being X-rayed and examined after falling out of bed, but he still enjoyed visiting with Mike Zeigler that afternoon. On Monday he was scheduled for his monthly meeting at the VA, which turned out to be a five hour journey. We've been working to increase the amount of time he's able to spend awake, with three hours being normal and four hours being good, so the fact that he was awake, aware, and alert for a five hour stretch was very positive news. He replied to questions appropriately with yes/no answers, ate well, wheeled himself all around the hospital (a treat for him since there are very limited places to go at the Elkhorn) and was generally "up" for the duration of the adventure. We expected that he would be exhausted today (Tuesday) since big events usually tire him out and require some down-time to recover. However, he had a very good energy level today, making us wonder if more trips out to the real world would energize and stimulate him.
Today Nina cooked a delicious homemade chicken pot pie and invited Jerry and I out to dine with Brad this evening. In spite of the big day yesterday, his energy level was back to normal levels, and we found him talkative, smiling, hungry, and responsive. We plied him with all sorts of goodies and treats: "Blackberries? Grapes? Pot pie? Pork chop? Easter chocolate?" and he enjoyed some of each. When we compared his to a sheik surrounded by a bevy of servents, he said, "I can have anything I want" - which is certainly true, as we would all trip over ourselves serving him whatever his heart desires. When Jerry said, "What can we bring you from town? What would you enjoy? Books? Magazines? Movies?" Brad looked at Jerry and shrugged. That's not particularly remarkable unless you consider that he shrugged with his right shoulder - his paralyzed right shoulder. When we pointed out to him that he just moved a body part that has been frozen in place for the past six months, he got a big smile on his face. And so did we.
Last week we had a good run of good days. The last time I posted, Brad had spent ten minutes standing upright, and four of those minutes were in a single unbroken stretch, without any assistance- not even the steadying hand of the therapist. When shown an Easter egg and asked to "name that object" he said, "Oyster...Oyster...[heavy thinking]...EASTER" and we were pleased he was able to make that connection on his own without any hints. He performed physical therapy on four days out of five, and we felt we were really on a roll.
But, as with any long journey, there are ups and downs. The last few days Brad has had very little energy and has shown a pronounced reluctance to leave his bed. His appetite fell off, as did his verbalizing. The only thing that seemed to interest him were silly games on a tablet computer. The therapist thought this was all good news, because she believed it indicated that Brad's emotional brain was coming back online: "He's getting in touch with his feelings". All we knew is that it became significantly more difficult to engage him.
This morning, he fell out of bed, probably having forgotten his disability, or trying to adjust himself in bed. Although his bed is very close to the ground and there's a pad to catch him, his bones are very fragile, and he landed with his weak leg in a less-than normal position. Therefore, he was taken by ambulance to the VA for X-rays, where they found no fractures in his ankel, knee or hip! But further X-rays showed that his tailbone is out of alignment (just as his shoulder is). This is probably not due to the fall; it could have happened any time. The pressure on his tailbone is probably aggrevated by sitting in a wheelchair that does not fit him well. (A better, custom-designed wheelchair should be arriving this week.) At any rate, if his tailbone hurts when he sits in a chair, no wonder he hasn't wanted to get out of bed. No wonder he hasn't felt conversational. No wonder his appetite is off.
A better-fitting wheelchair should help. In the meantime, we continue to work on vocabulary, and look forward to the day when Brad can say, "I'm thirsty" or "I'm tired now" or "My back hurts".
Brad has an appointment with his primary care provider at the VA tomorrow, so we'll see what other treatments are recommended. Perhaps something to manage the pain, more than just Tylenol.
It seems that every single day there's a bit of forward progress. It's slow, but it's steady; therefore, we rejoice. There are several noteworthy items of interest to report today. First of all, Brad stood for four minutes today; that's a personal record since his stroke. We are very hopeful that he will regain his ability to walk and that months from now, we'll be looking back on this blog post and saying, "Hey Brad! Remember when four minutes was your personal best?" During a caregivers meeting of nurses, CNAs, and Brad and Nina, all things Brad-related were discussed. At the conclusion of the meeting, Brad piped up, saying, "Does anyone have any questions?" Again, months hence, let us look back and remember when a single sensible sentence that issued forth from Brad's brain was reason to rush to the blog to report the good news! Furthermore, nurses report that Brad has actually gained a few pounds in the four weeks since he's been home. That's another "Hallelujah!" When I first saw Brad upon his return to Helena, he was so skeletally thin - 40 pounds lighter than when I last laid eyes on him - that I decided to do everything I possibly could to tuck as much nutrition into him as possible and I've been cooking up a storm ever since. Well, it's paying off, but there's still a long ways to go. that man needs MORE POTATOES! Finally, one last bit of good news for the day: Brad yelled at his nurse today. Why is that good? Why do we rejoice over this? Because he raised his voice; he SHOUTED. You have to understand that half of Brad's vocal chords were paralyzed in the stroke, leaving him able to speak only in a hoarse whisper that's difficult to hear, especially when there's ambient noise in the background. Last week Jerry and I, having difficulty hearing his faint voice, tried to provoke him into shouting, urging him to scream! Holler! Shout it out! -- all to no avail. Today his nurse misunderstood something he was trying to communicate, and when she walked away from him, he shouted after her, raising his voice louder and louder as she got farther away. The nurse probably had no idea why I was grinning from ear to ear! I was smiling because I was thinking: "If his vocal chords are coming back online, what ELSE might he be regaining in the coming months?" Stand by for the answer!
Brad, now that he's eating solid foods again, has entered a rather finicky stage and you just never know what's going to please his palate. One thing he always appreciates, however, is fast food. I took him a hamburger this evening, arriving just as he finished his nursing home meal. He ate every bite of the burger, and Nina said, "Wow! He ate it all, and he didn't even offer me a bite!" whereupon Brad immediately picked up a soggy string bean from his plate and offered that to her with a grin. The sense of humor is in good working order! During dinner, the television blared in the background, and for the first time today, Brad actually paid attention to the program-- the first time we've seen him watch TV since the stroke. Furthermore, when I offered him a new silly game on his android, he became absorbed in it for far longer than his usual 5 to 7 minutes, working diligently with his full attention for quite some time. We've got a Wii ready to be set up, a hands-free stand for a tablet en route, and a laptop currently being revamped, and I think the timing on these items will be perfect. Also worth noting today is that the color has returned to his cheeks giving his complexion a rosy hue, which is very encouraging. Thanks to all the folks who stopped by to make his Easter weekend special - Bob Dennis from India, Scott and Lisa, Rox, and others who cared enough to pay a call and offer support and encouragement not only to Brad but also to Nina.