Journal

Journal entry by Steven Lewis

Hello everyone. I haven't been posting much lately, but I thought I'd update you.  I'm doing well. My walking has improved the most. I'm walking with a straight cane most of the time. In PT I've been practicing walking without my brace, and I've even practiced walking without a cane!  My arm is progressing more slowly. While my hand is nimble, the sensation is still diminished.  And my left arm is stronger, but it's not moving quite right.  It's left me with a knot below my shoulder blade that causes my ribs to ache.  But I have a month and a half to get it right!  Sorry it's such a short update, but my flair for verbosity in these things has waned (which is why I haven't written an update in so long!). Don't know when I'll update again, but if you want to know how I'm doing, just text me.
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Journal entry by Steven Lewis

Hi all. Here are some highlights from my week. On Monday morning before Danny and I met with my primary OT and PT for a so called "family meeting". This is where the team discusses my progress with any family members wishing to be present and addresses any questions or concerns. Dan came well prepared with good questions that led to useful discussions, one consequence of which is that I no longer take my wheelchair with me to rehab. For some time I haven't been using it while at rehab, but going to and from rehab I used it—that is, until Wednesday.  Now the only times I use my wheelchair are when I go out in public to places where walking with my cane would be too cumbersome or unsafe. And speaking of walking with my cane, this week in PT, we began practicing walking with a straight cane. Up to now I had only used a quad cane. A straight cane is definitely more challenging and less stable, but I'm getting the hang of it. I predict I'll be using only a straight cane within a few weeks.  Walking with a straight cane is much faster than with a quad cane, because I take a "step" with the cane and my left foot simultaneously.  With a quad, the cane, my left foot, and my right foot are each separate steps.  The other advantage of a straight cane is that it's a better prop when I want to do a Fred Astaire number. 😉

On Tuesday my primary PT finally cleared me to walk indoors (with quad cane and wearing foot/ankle brace) unaccompanied.  This is huge as it means, for example, that I can go to the bathroom whenever I damn well please without having to get someone to walk with me.  It also means that my balance and stability have improved enough for my PT to feel I'm safe without an escort.  And the more I walk, the better I get at it!  On Thursday a PT and an OT took me and one other patient on a field trip to Abt Electronics and Appliances. Chicago-area people will know what that is, but for the rest of you, it's a HUGE electronics and appliances store in the area, more like an indoor mall than a store.  The goal of the outing was to have us do a lot of walking in a public setting. And we were given tasks to complete, like finding the most expensive item in the store (which is an uber fancy, sophisticated home theater setup for $500,000).  It was exhausting and challenging but fun.

Lest you think I ignored my hand and arm this week in rehab, I made progress there too.  One of the things we worked on was holding things in my lef (weak)t hand while walking (my right hand being too busy holding the cane).  This is important for gaining more independence. I'm pleased to report I've gotten better at that, even for fairly heavy items, like a gallon of milk. However, I still wouldn't trust myself with something heavy, awkward, and breakable, like a dinner plate loaded with food.  (Alas, I think I'm going to need assistance at Thanksgiving!). My nimbleness with my left hand, and ability to coordinate it with my right hand in a two-handed task, is getting better too. On Wednesday in an OT session, I practiced tying shoelaces. Several weeks ago when I tried this in OT downtown, I could barely do it, and my left hand did little more than grasp laces. This time I had no problem tying the shoelaces. In fact, in a 15 minute timed test, I was able to tie shoelaces 42 times!

i had a few fun plans this weekend. On Friday, Danny andI went to lunch with my cousin Amy.  For the Chicagoans reading this: we went to Walker Bros. Original Pancake House. Mmmmm!  On Friday evening, my brother, sister, niece Cassie, nephew Parker, and I went to see my niece Lora in her high school's production of Shrek The Musical.  It was terrific, with really good acting, singing, and production values for a high school show.  And on Saturday, I had lunch with one of my college roommates, Roger—who I hadn't seen (except on Facebook) in nearly 30 years. It was so much fun catching up with him! 
This coming week of rehab is shortened because of Thanksgiving; I only go Monday thru Wednesday.  Not sure yet whether or not I'll post an update next weekend. If I have any big news, I'll post it.  Meantime, I wish you all a Happy (and yummy!) Thanksgiving!!

Journal entry by Steven Lewis

I finished my second week of day rehab on Thursday, and my primary PT and OT redid the assessments they first did on my very first day.  I'm happy to report I improved on all of them, in most cases by quite a bit.  First PT numbers: On the 6-minute walking test (with a cane), I walked a total of 377 feet, compared to 285 feet my first day—an improvement of 32%. On the 10-m test, my speed went from 0.30 m/s on my first day to 0.35 m/s, an improvement of 17%.  On the balance test, which is out of a total of 56 points, my score went from 35 on the first day to 42 on Thursday.  They consider a score of ~46 or higher to be "low risk of falling",  so I'm getting close!  The OT numbers were also good: On the grip strength test (for my left hand), I went from 28 lbs. on my first day to 35 lbs. on Thursday, for a 25% improvement.  My biggest gain was on the so-called 9-peg test. It consists of 9 small plastic pegs (about 1" long by about 1/8" diameter) in a shallow dish next to a 3x3 peg board of holes. I need to put the pegs in the holes, one by one until all pegs are used and then remove them back to the dish, as quickly as I can using just my weak (left) hand. On my first day, it took me a little over 3 minutes.  On Thursday, it took me only 52 seconds!  The OTs were astonished at the level of improvement in the fine motor control of my left hand in only 2 weeks.  Thursday rehab was good in other ways too that I won't bore you with, but needless to say, I finished up the second week very pleased with how I'm coming along at day rehab!

Journal entry by Steven Lewis

Tomorrow begins my second week of outpatient rehab. I've been out of the hospital and living with my brother's family for a little over a week now.  So far I've been very pleased with outpatient rehab, even though it leaves me exhausted after 6 1/2 hours every day, Monday thru Thursday.  While the rehab facility itself is a bit small and ramshackle (they're probably going to get major renovation or a new facility in the next few years), I like it. The PTs and OTs I've been working with have been terrific.  I feel like my walking gait, my balance, and my left arm/hand nimbleness have all improved — which is the goal, after all.  On Wednesday, they had some Halloween-themed activities, which made for a fun, homey feel.  By Thursday afternoon, I was soooo ready to be done for the week!  This weekend has been nice and fairly relaxing. I've had two outings:  Yesterday my brother took me for a much needed haircut, and then we picked up my nephew and went out for lunch. Today my dear friend Jodi (who lives very near here) picked me up and took me out to a yummy Sunday breakfast. So nice to go out with a friend. Almost felt like normal.  

I predict that within a couple weeks, I'll be cleared to walk around the house without assistance (other than a cane).  I've already done it for short distances a few times, even though technically I'm not supposed to.  Once I'm cleared, il feel a lot more independent!  Well that's it for now. As ever, thanks for reading!

Journal entry by Steven Lewis

I moved into my brother's house on Saturday. I got a good send off from the various people who work on the 24th floor of Shirley Ryan. Friendly guy that I am, I developed good rapports with many of them. Some even made a special point of dropping by my room to wish me well or give me a goodbye hug, even if I wasn't part of their shift. Then, at the other end of the car ride, I got a very warm welcome from my sister-in-law Carolyn, my nieces Lora and Marlee, and my nephew Parker.  They went above and beyond to make their home the best place for me to live during this next phase of my recovery!  It's definitely taking some adjustment to be away from a hospital setting after being in one for 5 weeks, but I'm already seeing a routine start to jell.  The transition has also been helped along by the services of a terrific in-home caregiver, Ricky. He's been great about helping me out, but also backs off when I want to try to do some things independently. 

Today was my first day of intensive outpatient therapy at the SRAL day rehab facility in Wheeling.  I'm getting 6 hours per day Mon-Thu, split evenly between PT and OT. Much of today was about initial assessments to establish baselines, but I also had some actual therapy. A "highlight" of that was when the PT (who I like a lot!) had me practice getting down on the floor, lying on my back, and then getting back up again.  Very difficult for me in my condition!  But I did it—albeit not very elegantly—twice.  Suffice it to say, 6 hours of therapy is awfully fatiguing. When I got back home, I had a small snack (some almonds and grapes) and then went to lie down on my bed for a couple hours. I'm pretty sure I'll sleep well tonight! 

Journal entry by Steven Lewis

This may be my last inpatient journal entry, as I am set to be sprung from Shirley Ryan on Saturday.  But fear not: I intend to continue journaling during my outpatient treatment as well.  I believe I've mentioned that, after I'm discharged, I'll be going to live with my brother's family for few months (at least through the end of the year) in Buffalo Grove, IL, while I continue my outpatient rehabilitation. Conveniently, Shirley Ryan has a day rehab facility only one town over fro BG.

I continue making strides in rehab.  Some noteworthy metrics: (1) Yesterday I retook the grip-strength test, and my left hand went from ~20 lbs a week or so ago to 30 lbs now. So I'm pleased with that.  (For comparison, my right had grip strength is in the 90-100 lbs range.) (2) On a standard hand/arm assessment called ARAT, which is scored out of 57 points, I have consistently improved. On 10/3, I scored a 12, with a timing of 673 sec. On 10/15, I scored a 29 in 402 sec.  And today, 10/24, I scored a 42 in 113 sec.  (3) On two walking assessments, I also showed improvement.  On the 6-minute cane-walking  test today, I walked 341 m with very little assist from the PT (she had to provide support only on two steps where I lost some balance), compared to 307 m when I did that test last week, in which I needed more PT assistance.  On the 10-m timed cane-walking test, my average walking speed yesterday was 0.28 m/s, up only slightly from the week before, which was 0.27 m/s. The typical walking-gait range out in the community is 0.8-1.3 m/s. So I'll have to continue using a wheelchair out in the community until my speed picks up.  But I'll be able to walk with a 4-prong cane at home, with assistance, right away. (4) My score on the balance test today was 34 out of 56, identical to last week's score.  But apparently 34 is a tough score to beat, because to do so, the PT has to feel that it's safe to be a few steps away from me, rather than right there to assist me if necessary.  I'll need to get that up to the mid 40s before they'll consider that I'm at fairly low risk of falling, if unassisted in my walking.  So something to aim for in outpatient.

Another thing I learned today (or rather, again had confirmed) is that I have very good health insurance.  I was told that my insurance covers 40 days per calendar year of outpatient OT and PT each.  Since the calendar year is rapidly coming to an end, I'll be able to go to outpatient rehab 4 days a week for 6 hours per day (unless that's more than my body can handle … we'll see).  That means rehab will become like a full-time job! Candidly, that doesn't sound fun, but it'll definitely be good for me.

OK, that's it for now.  As ever, than you for your continuing interest, love an support!  It helps me a lot!

Journal entry by Steven Lewis

The last two days have seen ups and downs. Two nights ago I slept very poorly, and it affected my mood and energy all day. As luck would have it, my schedule yesterday had 2 PT sessions and 1 OT. Usually it's the other way around.  PT sessions are generally more physically taxing than OT sessions, so yesterday was not a good day to have 2 PTs. And to make matters worse, they were both particularly grueling sessions. In the first, they put me in a harness supported by a track in the ceiling and I walked around the therapy room WITHOUT A CANE!!  Man was that hard!  We also practiced going up and down a few stairs using a cane, rather than a railing, with the PT there to catch me if I lost balance. That was hard too, but I managed it ok. I think we'll be practicing that more in the coming days.  The second PT session was walking with a 4-prong cane, first just walking a full circuit for "warm up", and then the PT set up a little obstacle course to navigate. Oh boy was that tough, especially given how tired and fatigued I was!  The bright spot in that session was that my good friend (and also my 4th and 5th grade teacher), Judi Lindgren, visited me and watched that session, cheering me along the whole way!  Thanks again, Judi. My cousin Amy also visited me yesterday, arriving at lunchtime and staying through my afternoon OT.  I was tired and kinda glum all day, but fortunately, I had a better night's sleep last night.

Today has been a much better day!  I had two sessions, 1 OT and 1 PT, and both were good and productive. In fact, in PT I  walked 32 minutes on the treadmill, beating my walking-time record by 5 minutes!  And then at around 2:30, my good friends Barry and Bobbi Ann Fulk came to visit me.  This was a sort of surprise, because I only learned that they'd be visiting this morning.  It was great, because I didn't have any other visitors scheduled for today … and because I really like them!  Now I'm watching TV, catching up on correspondence, and doing some practice exercises.  Tomorrow I have the day off, and Danny and Bonnie (and later Cassie) are visiting.  One week from today, I get discharged from Shirley Ryan Ability Lab and head up to Buffalo Grove to live with my brother and family for a few months while I do outpatient rehab at SRAL's Wheeling outpatient facility.  That's it for now.  Again, many thanks to all of you for your love, caring, and support. It keeps me going!

Journal entry by Steven Lewis

I continue making good progress.  Today's big milestone was in PT. I took the balance assessment for the third time since getting here. It's out of 54 points.  The day after I got here, I got a 5 on it.  Ten days ago I got a 15. Today I got a 34. I still have a ways to go to be considered at minimal risk of falling if unaccompanied, but I'm very pleased with today's score.  After the balance assessment, my PT and I went for a little walk with a 4-prong cane, but whereas my previous cane walking had been with a wide-base 4-prong, today we tried out a narrow-base 4-prong … and I was able to do it pretty well!  We did one full lap around the therapy room (a little over 200 ft). By the end I was fatigued and started making little mistakes, but overall I did well.  My left hand and arm are also improving, but no specific metrics to report today. One thing that had been very difficult at first—straightening my elbow without assistance—has shown a lot of improvement in recent days, and I'm gaining more nimbleness in my hand with each passing day (e.g, today in OT, I flipped through two magazines from beginning to end with my left hand.). That's it for now, folks!  As ever, thanks for reading.

Journal entry by Steven Lewis

Just a quick update today, since Bonnie wrote an entry yesterday.  In one of my OT sessions today, I redid a standardized arm/hand assessment (called the ARAT) that I fist took about a week and a half ago.  My score went from 12 the first time to 29 today!  My college friend Lisa Earley was there to see it.  She came at around 11:15-ish and stayed through my 2:00-3:00 OT session.  Needless to say I'm very pleased with my ARAT score increasing by nearly 150%!   Oh, and I beat my total walking time record in PT by 1 minute. So a good day overall.

Journal entry by Bonnie Prokopowicz

I'm so excited that I must share how much Steve's walking has improved since I watched his PT session on Wednesday. Today I arrived halfway through his session and I was astounded at how much better he was walking! On Wednesday the therapist was helping his foot along, whereas today he was doing it on his own ... and with a weight on his ankle ... and with the treadmill set to uphill!! Check out that determined look on his face. And no, he hasn't become a hippie at Shirley Ryan -- that's a heart monitor attached to the headband. GO STEVE GO!!!

Journal entry by Bonnie Prokopowicz

Well, Steven and I had quite an adventure today! At 8:00 AM our transfer team arrived at the hospital. They took care of every single detail, including schlepping our luggage. They wheeled Steve out to a ground ambulance, which took us to the Athens airport. We flew a Lear jet up to Shirley RyAN (those of a certain age might get an ear worm at this point). Well, actually to Midway Airport, where an ambulance was waiting to whisk us to Shirley Ryan AbilityLab, where Steve got a nice welcome and has a "corner office" on the 24th floor. The intake resident who examined him was very encouraging, noting that he felt muscle response even in cases where there was no visible movement. Steve had a good lunch and then looked like he was ready for a nap, at which point I headed home.

Tomorrow Steve will get evaluations from the various teams and they'll make a plan for his therapy, which begins in earnest on Monday. He is ready to work his butt off to get better!
Steven’s Story

Site created on September 27, 2018

I'm Steve's sister Bonnie. On the morning of September 21, Steve had an ischemic stroke. Thankfully, his speech and cognition were unaffected, but he has limited movement in his left arm and leg. After a roller-coaster week of figuring out next steps, Steve is heading to Chicago to inpatient rehabilitation at Shirley Ryan Ability Center, formerly Rehab Institute of Chicago -- the #1 facility of its kind in the country! He will also have outpatient care there. 

We are so grateful to Steve's friend Craig for his diligent, loving care. He took Steve to the ER, stayed with him all day Friday and Saturday, and guided Dan when he arrived on Saturday. He continued to provide guidance and help during Dan's and my stays in Athens. And he and his husband Adrian have graciously offered to take care of things at Steve's house as needed while he is in Chicago. And Steve got absolutely fantastic care at Piedmont Athens Regional Medical Center; everyone was as nice as could be, with a special shout-out to our social worker Mary, who made countless calls to arrange Steve's inpatient services and transport.

Steve's entire Athens family has been wonderfully loving and supportive. Steve commented today that the many hospital visits have buoyed his spirits tremendously. `We're not surprised that he has a huge fan club, but we're really grateful for it and we know that when he returns to Athens, he will have many helping hands. Friends and family in Chicago are ready to embrace him and help him regain his strength and mobility. We don't know yet how long it will take, but it's clear that Steve is determined and anxious to plunge into his recovery. 

This CaringBridge site will be our primary means of keeping people posted on Steve's progress. When he feels ready, he'll write updates, but for now Dan and I will help him out with that. Steve would like people to feel free to pass along the link to this site to anyone you think might want to know.

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