Things that will help encourage as well as facilitate progress- pictures of family and places that will be familiar to him (recent, or even older). G is able to access digital devices. He can receive any kinds of files with his cell phone, though he often answers with his iPod.
8/18 Important update- Gary is back in the hospital, now for an angioplasty! Gary has had periods, off and on, of not feeling well. We’ve kept the medical community informed, but there seemed to be a general lack of concern. Yesterday he had another episode, this time of what seemed like gastrointestinal/stomach flu. He went to ER, and they said he was having a heart attack then. He was transferred to MC, and though he did well overnight, they are planning on an angioplasty today.
His progress had been slow, steady, but a few steps forward, a step backward, some of those frightening. Because we were regularly in communication with doctors, we tried to take all in stride, though sometimes it seemed as if he was experiencing the same scary symptoms that brought all of this on. Either BP has been erratic, or his new BP cuff is worthless. In fact, the day Ron and I arrived home, within 6 hours G returned to the hospital, with us believing he was having a second stroke. (I still think this possibly happened, as he only had a CT scan, not an MRI). G’s carefully kept records of fluctuating BP drew no alarm from most of his doctors. The consensus seemed to be that medications needed time to do their work.
Yesterday, we just finally finished cleaning and returning the RV to storage when G told me he was ill again. I had routine medical appointments, so the next time I tried to call, he was already up at ER. I am so glad that he is acting to get help, rather than waiting to confirm that it’s actually an emergency, and knowing that he is being continuously monitored now is a real comfort.Thank you to Judy and Syl for going up to keep him encouraged!
Please continue to keep Gary in your prayers! Thank you!!
7/12 We are so very blessed! I know G moments of confusion, sadness of loss, and frustration, but we all feel so very blessed. Sometimes we seem not to move, sometimes we take a step or two backwards, and sometimes progress is full-steam-ahead, and sometimes things just seem deceptively normal. G has so many outstanding people on his team, including the neurologist PA, who was oh-so-informative! We were also able to squeeze in an appointment with a vision therapist the same day. While we are uncertain of some his recommendations, we were encouraged to know that some of the vision change is due to optic nerve cells. Retinal damage is currently considered permanent, while optic nerve cell damage provides a little more hope. Iowa City has been successfully conducting research to use arm tissue to regenerate retinal cells for macro-degeneration!! Great news for anyone with retinal cell damage!
It’s still so difficult to leave Mom and G alone in the evenings, but G is doing so much better, and Mom follows much of his therapy by doing some of it herself. When I reluctantly step out of the picture some, they both benefit! When we first arrived, it was so much more difficult to leave, as G stood at the door looking confused and lost, wondering what to do. When we returned in the mornings, it almost seemed as if he’d just been sitting there all night waiting for our return. Now, he is energized in the evening, and uses that time to work on therapy on his own. Orientation is coming along, and when he forgets, he initiates using tools to help him, whereas before, I had to prompt him to use various tools (such as a map). The therapists were originally so tentative about his prognosis. Even though they professionally won’t predict, the plans they have for him now and moving forward are so encouraging! He is taking after his librarian sister in that he is currently reading 2 books, one he’s trying on my Kindle and one is a Playaway/print combo. The Garner library is the only one around that offers Playaways, so this will be something that may be more difficult for him to access down the road. I don’t believe there is any interlibrary loan or courier service for this. This week I hope to teach him how to download audiobooks from the library. (Did you know that is free through the state and your local library? Please help to continue to fund public and school libraries, as they are so crucial to everyone! I knew how important they were as an equalizer for economic and cultural gaps, but I’m just now seeing how vital they are to rehabilitation.)
7/5 Finally an update! (In addition to limited internet and cell service, due to lack of ATT towers, I have been told to halt my non-wifi data usage until the next billing cycle.)
Therapy and progress continues. G fell through the medical cracks a couple of places: we kept asking about involving a neurologist, but couldn’t get in until Aug-Nov. Finally, I accidentally called the right place- G was supposed to have followed up with a neurologist in Des Moines, but we never received the dismissal paperwork and information. Also, repeated attempts to get visual therapy via the ophthalmologist have been to no avail. We were fortunately able to set up both appointments for Monday, though our day will be crammed with that and AC/Hot water estimates as well. I hope we can make all appointments!
G still has moments of confusion about cities and directions, so could easily be disoriented. He will continue to need some assistance even after I return home. He loves to eat out, but this will probably not be very likely for him unless someone takes him. We’ve been walking downtown to get him used to the walk, make sure he is not disoriented, and get him a library card, and so forth. Any help with this when I leave will be very much appreciated!!
6/8 Therapy continues to be all about evaluation right now. We thought we would get a quiet day at home tomorrow, when we could take time to practice skills, but it looks as though we have more errands. So, we use those opportunities to strengthen real-world connections, locations, and processing skills. Gary has always loved the drive around Clear Lake, so I took him there. We ran across a dapper young man walking his dog…Curtis! That was a pleasant surprise! If anyone knows of a fabulous neurologist and a gp, please let me know. We still need to put together more pieces of the puzzle for G. Thank you for following his progress!! M.
6/7 Updates on how to help:
1) G does use digital tools a little bit, now, but could easily be overwhelmed if flooded with texts or emails. Brief communications are best, as reading is a challenge.
2) It can be tempting to quiz him to see what he remembers, but that can be frustrating and embarrasing. I might suggest using some clues in natural conversation, without putting him on the spot. Thank you for your efforts to put him more at ease!
6/6 A new success: Do you remember reading aloud in class in elementary? Or listening as the teacher read aloud? While Round Robin reading has received much criticism over the years, listening to fluently read text and to the richness and cadence of language helps build reading skills as well as vocabulary. Heeding research, Amy J and I collaborated to provide reading enrichment by pairing audiobooks with their corresponding print formats. Students who had been non- or very reluctant readers discovered the joy of reading. My favorite form of audiobooks are Playaways and GoReaders, self-contained units like mp3’s. The local librarian was able to point me to another library close by that might have some in their collection. I found the Playaway “House Rules” (a book I enjoyed) and a corresponding large print version. 1st, you have to know that G had no time for fiction in the past. Now, he is currently engrossed in reading and listening to the book!!! The large print is helping him to focus and track, while the audio helps guide him all the way to the right side of a page, something he would not catch due to loss of vision on his right. If you haven’t tried audiobooks, I highly suggest it. I enjoy them while walking and am usually anxious to reread sections when I get home. Check out your local library for audiobooks. Your state library or local consortium probably offers a variety of audio downloadable books as well. Another source for summer listening is audiobooksync. Each week, you can download 2 free young adult books. If you don’t know if you like YA books, think about the recent hit movies, as many we’re based on YA novels.
6/3 Yesterday’s therapy session really amounted to an evaluation, but at least we’ve taken another step forward. More evaluation today. I’m afraid he’s not practiced much lately, just living skills. Yesterday, for the first time he remembered a number he needed in order to access the ATM. After, he was telling me he still needed to remember his account access number. I told him that’s what he just did. We went back and forth a bit, him explaining it’s how you get in to the statement. Finally, he showed an upward/downward movement with his arm in horizontal position, while making a humming noise. I don’t recall my account making sounds like that. He was talking about his garage door keypad. It’s what he had in mind the entire time, just retrieved the wrong words. I’d like to say how cute he is, but being the professional that he always is, I don’t think he’d appreciate that description:)
5/30 We’ve had little access to internet, so my apologies for infrequent updates. Gary is the master of illusion….those who visit with him can’t tell anything is wrong:), at least not at first. Imagine what it’s like to have to think about how to use every item used to eat…. what items to gather at a fast food restaurant. Things that come so natural to the rest of the world. Consider what it’s like to have to trace numbers in order to have even a possibility of deciphering which it is. Thankfully he does understand number value. We have been playing catch and games that involve left-right movement And doing some word family (rhyming) picture flashcards. These are his challenges As a result of expressive and receptive aphasia. He does continue to gain increasing complexity of thought, just can’t access correct words. South becomes north, Belmond becomes Forest City, and relatives become sisters. 1st appointment Tuesday. He sends his greetings to all:)
5-27 Finally got all my “chicks” under the same roof last night. It rained all the way to pick Gary up, but was a good trip. I encouraged him to handle some everyday tasks, such as filling the gas tank, paying, getting a cup of pop. Sounds like I stuck him with costs, but I really just wanted him to handle regular tasks:-) He takes a little more time to think things through, and needs some protection from his right side if walking in traffic, since that’s a blind spot.
We have not been provided any information regarding what we can expect for speed and amount of recovery. Therapy won’t begin again until next Tuesday.
22 hours of drive time in 3 days was one of the most pleasant we have ever experienced, thanks for all prayers on our behalf.
5-24 Gary gets dismissed Tuesday! He said he’s been gaining weight, as the food at both hospitals has been so good. I keep trying to convince him what an early bird he’s always been, that his favorite food is hamburger, and that he deeply admires his little sister, but he’s not buying any of it. (Well, the part about “Sister” is true….trying to remember if he’ called me that during this time. Not sure). While he knows the truth, the nurse reports that he’s always up and ready for therapy 7-7:30 each morning. 🙂 He texted me last night!! The first try was pretty messed up (auto completion isn’t always so helpful) His next text was perfect!!! He’s made tremendous advances!! His goal was to make sure the account remains open. but he came up with the goal, determined the action necessary, translated thoughts to procedures, and tapped it out on a tiny keyboard!!! Ron and I seek your prayers for safety and alertness today. We are both still sick as we start out from here to there.
5-23 Gary is starting to be able to remember events coming up, like when he will be dismissed. Still has difficulty using tools and products correctly for personal grooming. I teased, “so have you tried brushing your hair with a toothbrush?” He laughed, but said it’s pretty much like that!
5-22. I didn’t notice much word substitution today, except heart attack for stroke. I found that if I make the beginning sound, he can access the word easier, and it’s always better to practice correct responses. That increases the likelihood of accessing the word next time. I do have to share a story: (I don’t share a lot of specific details online, as I want to fully respect his dignity and rights to decide what is public vs private.) Yesterday, when G confidently told me that Mom orders her drinks with her cell phone, I thought maybe we had entered George Jetson’s universe and I was missing out on the newest technology… That or the Carbonero effect. I finally figured out what he meant: Mom makes her coffee with a Keurig. Seriously! Compare those 2 sentences! I shared this with him today, and we had a good laugh together Laughter IS the best medicine.
5-21 Today was super busy at school, and I just now (9 PM) quit doing work related to school, so am exhausted again. Ron and I both had a nice long conversation with Gary this evening, though. Word substitution and numbers continue to challenge, but his conversation and thinking skills continue to grow in depth. He tried to reflect on which day he was transferred to rehab. I told him of this page and he was quite interested:-) I don’t know if he will be able to maneuver to it or not, but he would like to.
5-20 Breaking news!!! He gets to go “home” instead of another facility!:) Date not yet finalized. He won’t be able to cook (he doesn’t anyway) or drive for awhile, and will need much help, but imagine how much more encouraging this is for him:) He will continue to get frequent therapy. He has a long way to go, but this seems to be such good news!
5-19 Today Gary was very pleasantly surprised with a visit from cousin Barb. (I didn’t tell him in advance, so that he wouldn’t worry about holding a conversation). He really enjoyed the visit, liked that it was a surprise, and it sounds like they talked and shared many laughs:-) This was an unexpected encouragement to him. Today, therapy gave him an iPad to use, and he is so happy with that. They loaded programs specific to his needs. It’s fun, it fills his long empty days, and he knows it’s helping him progress all at the same time. I’m thrilled that he has this technology! I read some newer research last night that extended the estimate of regaining skills from the former 6-12 months to 1-2 years. I focused on some neuroscience/brain-based learning in my master’s degree, so am familiar with some means of facilitating brain plasticity (the ability of the brain to grow new connections, teaching different brain cells to take over for the dead ones), but I wonder what the research says about a relationship between today’s digital technology and plasticity? I know research supports technology for learning by specially challenged students.
5/17-18 Sunday/Monday- Conversation continues to improve with lessening frustration. I am utterly exhausted (bronchitis), so not much in the way of notes. Just doing what needs to be done in the way of keeping him and mom going from a distance. Gary is struggling with how to write and interpret numbers. It just so happens that I still have D’Nealian handwriting instruction books from when I had a tutoring business! Actually, I still have lots of tools/equipment that might help:-)
5-16 Saturday- Talking with him at various times throughout the day, I sense that he struggles more with expressing himself – in the early morning and at night when he is tired. Some of this may be attributable to the phone in his room. While he’s always been quite verbose, he’s able to access more of his vocabulary, and he is speaking much more fluently, at a faster pace. When a topic appeals to him, he begins speaking very naturally. Just listening to him, it’s easy to get the impression that very little is wrong. But Gary is easily frustrated that he isn’t able to access the words he wants. Not as “flamboyant.” –His word, not mine! His vocabulary and fluency continued to increase throughout the day. He can talk for hours on the phone in great detail, with some incorrect word substitution and some repetition as he strives to find the words he wants. I smile, because he remains my very verbose brother:-) His processing skills are priority, as that affects day-to-day tasks, independence, and safety.
Fortunately, the rehabilitation personnel are very much aware that there is more depth to his communication struggles than what one sees at first glance. He has “homework” for the weekend. He wants to improve as much as possible and as fast as possible, and understands the importance of rehabilitation therapy, and voices that he wants to work very hard, but I sense that he is unable to focus his attention, especially to all of the reading they gave him. He hopes to devote the entire day Sunday to tending to that task. He was very encouraged because he understood his new doctor to say that he can/will get everything back. I’d like to talk to the doctor directly of course.
5-15 Friday- I finally, for the first time, was able to speak with the doctor at Mercy. He doesn’t know how much will come back, and said that the vision loss (1 eye, peripheral) could be permanent. The two stroke sites (left occipital and thalamus) affected his thought processes and vision. They were ischemic (clotting) strokes. His symptoms were subtle, not classic, and mimicked earlier BPPV (ear crystal) episodes that he had experienced, so by the time a stroke was diagnosed, they were long past the window of opportunity for clot busting drugs. I’ve been told now again, how unusual was his stroke(s), not fitting the classic cases. The doctor verified that he is showing improvement and that improvement can continue for months. He was transferred late morning to Ottumwa for acute rehab, where they will work on higher level abilities.
5-14 Thursday- I was sick and made 2 trips to doctors myself. Nothing serious, but I didn’t take many notes. Searched 4 state area for the best place in the next step of his recovery.
5-13 Wednesday- He was chipper and eating well. He voiced feeling less smart and more challenged at night. He recognized that his writing is poor. (Yesterday he thought it was good, so his new assessment shows me he’s gaining ground in being able to interpret his abilities).
5-13 Tuesday- He’s struggling with grooming, and the nurse described his need for 24-7 care. His communications are relatively short (compared to his normal) and he uses the wrong words (book vs. bag) so that it’s difficult to understand his wishes and instruction. I was able to locate a neighbor, Margie, who is taking care of some details for me. She is wonderful, and I’m so thankful for her!
5-12 Monday- all I can remember was that it was not good news nor interactions. Finally he had tests (last night or this morning?) that determined he had a stroke.
5-11 Sunday (Mother’s Day)- Gary determined he needed to go into the hospital right away; his fingers/hands were numb. Cousins Sylvia and Karen drove him to Des Moines where he had gone before for BPPV. On the way, he got confused with directions, and asked cousins what their names were. Sylvia and Karen stayed, helped answered questions, and only left in the evening when he was finally admitted to the hospital.
5-10 Saturday- Gary started losing balance and falling again, with similar symptoms to last fall when he was diagnosed with BPPV or ear crystals. He was concerned but not sure what to do.