Bill: the Finale

The Finale of 55 weeks

I will catch you up on the last couple of weeks and then say goodbye. Bill and Ayn have moved to California, he is back to work full time, so there really isn't any need to continue talking about the minutiae of their lives.

Bill had lots of final appointments, including two for leg brace adjustments. Unfortunately his OT canceled because she was sick. But he had two PT sessions, a nephrology/hypertension appointment, another Botox treatment, prescriptions refilled.

And a fun time was had by all at the Post Office for passport applications.  Man that takes a long time to get through.   The highlight for me was a bit of comic relief, where the woman ahead of us, surprised by a glitch, exclaimed, "Holy Toledo, Batman!"

Movers hauled out their belongings Sunday, July 27.  They stayed at a hotel across from their old place a couple of days so Ayn could finish cleaning. As I write, they are in a hotel in the Bay Area, and the movers will arrive within a couple of days.

Just in time for their second wedding anniversary next week.  So please join me in wishing them the best in the next chapter of their life together.

Bill, Friday July 18: from video to audio; and an amazing retro trip

Physical therapy was another change-up.  Bill has had a lot of visual cues given to him for biofeedback to improve walking.  There is the machine to show how he is balanced, to encourage shifting more weight to the left side.  In their apartment, we put green dots on the floor as stride targets. 

Today Jeff added an audio cue: a metronome app to hint at a "normal" stride. And it was on a treadmill. 

A stop for a leg brace adjustment, then...

An amazing trip to Marquis acute care, Bill and Ayn's home away from home last year, two and a half months.  The last time staff saw him, he was mostly being moved from bed to wheelchair with a lift, although he was just learning to use a slide board to go from one to the other.

We first came across nurse Tori and CNA Heidi.  Bill got up from the wheelchair on his own, took a few steps, and their jaws dropped.  Then smiles.

Next we went to the central area. Michele went to find Dr. Creitz for us ( I had called earlier to make sure she would be there).  With more people assembled, he again stood and walked quite a bit. The doctor stood with her hands clasped tightly, almost as in prayer, with her chin resting on the hands. She closely watched his feet.  CNA Jowanna noticed from the dining hall -- another jaw drop, and running over for a hug. 

I pointed out that Dr. Creitz seemed speechless. "I'm just ... Wow... Thrilled..."

She moved next to me and dabbed her eyes with a tissue.  I asked "Allergies?"  She answered, "No, no, happy."  She gave Bill a hug, "My you're tall!"  Then she asked about medications and exercise and therapy and blood tests for kidney function.  She remembered everything about him.  "Remember, no Sipro," as if we would ever forget. 

Claire, speech therapy, came by.  We sure wish she had been there during all of Bill's stay, but having a baby interrupts the work!

Such an emotional but rewarding visit. I thought it was good for everyone to see how much improvement can still be made when a patient leaves them.

Bill, July 11: Hip Hop and back to work

On July 9 (the day after the "strokeversary") Bill saw his rehab doctor and is released back to full time work in a couple of weeks!  Dr. Degen said, over and over, that every one at RIO is so pleased to hear his progress.  Doc is glad he can release Bill for work, because some people come in and he has to say no (or they are wanting to drive again).

On July 11, Bill had physical therapy.  Started with walking, then 'squat walks' at the parallel bars.  Looking for a new challenge, Jeff asked, "Can you hop?"  Ayn and I looked at each other, "He's kidding,right?"  But Bill gave it a go, and there was a Billy Hop!

What a big month. Back to work, and in three weeks they will have moved. We will miss them so very much between visits.

Bill, July 9, 2014: one year

Yesterday was one year.  I couldn't bring myself to post any comments.  Would it be celebratory?  Would I be too morose in the memories?  Would it be a non-emotional, just-the-facts update? 

On the facts: Bill is trying out a forearm crutch to use instead of a quad cane.  There are pluses and minuses, but overall it seems to help him walk more upright -- 'tho I'm not sure way, since the hand is at about the same height. Also, they had a great two-day trip to Central Oregon to visit a friend for July 4, and the Steely Dan concert there.

As far as emotions or memories, I decided to go back and look at some of my early posts.  Oh my gosh, how did ya'll put up with my short, terse posts?  It looks like I was just barfing up a few words.  My struggle was with how long it took me to post from my phone, and where we could get internet connections. 

My rule was to avoid making the posts about me.  The reports were from my perspective, yes, but you did not need to hear I was devastated or angry or so f'n tired. Especially when I was so exhausted I might have spelled out f'n. Plus Ayn and I were working to have only positive vibes.

What are my emotions today?

Amazed at my oldest son and his awesome wife. What a team.

Buoyant

Calm.  Not with everything in life, but with Bill's situation.

Delighted

Excited for their future.

Friendship with my daughter in law.

Glad

Honored to have witnessed their journey.

Intrigued

Joyful

Kindness

Love

Modesty

Nourished (in the sense of enriched)

Optimistic

Pleased patient pride peace

Quiet qualified quirky

Reassured, relieved

Safe

Thrilled

Unbeatable uplifted 

Vulnerable - yeah, don't take anything for granted. It also means realizing I can't control everything. 

Wonderment

Xenial - being nice to strangers, paying it forward for all that has been given to us

Youthful yielding

Zany

Bill, June 20: changing the dance from a waltz to the two-step

Bill did a TON of walking today.  From the apartment, down the hall, standing in the elevator, out to the car. From the car, to the elevator, into the clinic and PT room ...  Actually, let's just say the only wheelchair time he had was the trip through Whole Foods!

One of his PT activities was the balance-feedback stand. He learned to weight shift by doing a "hip-check" (yes, like in ice hockey) instead of leaning his shoulders over.

Getting back to this post's headline, and the reference to dance.  His walking routine has been a three-step: cane forward, step left, step right. That's a waltz rhythm. Now he is challenged to make it a two-step: cane-and-left-step-at-the-same-time, step right. Once again, this video doesn't show up on my iPad, so switch to your PC for a really good show. He got really smooth later in the morning, trust me!

 

Bill, Fri. June 6: elliptical, biking, and stairs

You can see how hard Bill is working on the elliptical, above.  But dig how well he does on the "recumbent stepper:"

 

Sorry I didn't get a video of him on the free-standing steps; he was too fast!

 

Bill reports that his work hours went well this week, despite not having access to all the subsystems he needed to work in.  Yeah!

Bill, June 2: PT and PT

PT #1: Physical Therapy
PT #2: Part Time back to work!

Physical therapy Friday included: walking all the way from the waiting room, lots of stretching, movement.  The session was capped off by seeing if Bill's new SF-Giant-themed Crocs would work. Sort of, but they will need to try another size.  The good news is that the "heel cup" is deep enough to keep the brace stable, plus it has a heel strap.

Part time work starts tomorrow!  Bill can work up to six hours (per his doctor).  He already has an assignment from his boss.

Please send Bill your best wishes on this achievement.

Bill: Monday May 19: partial release to work

Bill saw his rehab doctor (from his time at Good Sam's RIO), which was scheduled as a follow up on the recent Botox treatment.  Doc signed a partial release for Bill's return to work. Beginning of June, up to six hours a day, 2 - 3 days per week.  He's so excited, and we are all so very happy for him.

Next we made a trip to Fit Right, a shoe store just north of the hospital.  We had been guessing on the shoe size, so it was finally time to get it right. He needs a 12.5 4E (to fit the brace).  Another happy event.  Except Bill wanted orange shoes to support his San Francisco Giants, and he could only get black and white in the store.  Anybody want to send them some bright orange shoe laces?

Afterwards, it was another trip to Whole Foods.  Something happened, and Bill wants me to post it, though it wouldn't have been my choice.  As Bill stands from the car, he usually gives Ayn a big hug and kiss.  This time he managed to sneeze just as he was kissing her.  That's it, that was the big event. Aren't you glad he shared?

Today, Wednesday, was occupational therapy. She's relieved at how much his left hand is relaxing, letting go of the "tone."  I trimmed his mustache, and we had a call with Social Security.  It seemed like a long call, 'tho it was under 15 minutes.  And the guy was very helpful, methodical, and non-rude.   I need to send a note to that local office supervisor as a thank you.

Beyond that, Bill and Ayn continue to downsize toward their late July move.  I took a bunch of books to Goodwill for them (as in, filled up half of the back of the Highlander).  They are free to find another happy home.

Bill: Sunday May 18: catching up

California trip; upcoming move: yes, they made their visit to the Bay Area, including a trip to Bill's work headquarters. (Anyone who was there, please feel free to post observations on how well Bill was doing!). Ayn reports Bill walked some long corridors, using closer to normal pace and more even steps. They got to have lunch with the boss and some coworkers.  The boss had Bill review a code change and generally quizzed him on processes -- I think to get a feel if he's ready to come back.

Rather than try to buy a home now, they've decided to rent. This will give them more time to get to know the housing market.  Also, the more Bill has physical progress, it can expand their options if he can do more stairs. They decided on an apartment, cleared the background, and sent a deposit to move in late July.  (Insert Mom's sad face here)

More crazy downsizing.  If you're a fan of sci-fi books, let them know because they are letting go of a ton.  Old programming books and other genres.  Maybe not 2,000 pounds, but I bet it could be 200!  Stuffed animals, too.  They are attached to many, but others will be available to good homes.

Physical therapy this week was lots of work.  Balance, which he easily got to 50-50 this time; so the challenge was to hold at 60% on the left side! Then do it with the eyes closed! Then 70%, and hold it while talking about something else. Then step-through walking.  Then walking at the bar with a lunge/squat pose. He earned that trip to Whole Foods for grilled cheese Friday!

Bill: May 8, ten months

Today is ten months.  Such a journey. 

Bill wants to get back to work this month.

I say he has been working.  Very hard.

Bill: Tues., May 6: fingers, funny, and other

Bill has had a lot of work over the last two weeks toward his left arm, with focus on his fingers.  I already reported on the latest round of Botox.  One "funny" to add from that visit. As the medical assistant was getting him settled in, one of her questions was, "Do you know your approximate height?"  Bill answered, "five-eleven and three-quarters." We all giggled at the approximation.  Of course it's probably off by a whole lot of mils.  (Thousandths of an inch)

OT made a little hand insert to more easily work his large finger joints. Anne-Marie is really worried about them permanently freezing up on him.

PT really worked him Monday. Before he got on the balance-feedback platform, she had him do toe taps. Toe tap up, down, other foot up, down.  The step up is fairly high, about ten inches. A set of balancing on the platform, rest, another set of toe taps, then a different balancing routine, then the floor exercise of walking through the "ladder," then leading with the right foot, then side steps through the ladder (easier to the right than to the left).

Bill and Ayn are on another trip to Northern California, and will be checking out housing options. Yes, sad face, they are planning to move there in August.

Oh, and Bill's Social Security disability was approved.  It doesn't do anything for him because he has LT disability insurance, so it just goes to the insurance company to offset their cost.

And he hopes to go back to work, at least part time, soon.

Bill: or is it William?

A sign the economy is improving...

Bill and Ayn made a trip to Las Vegas recently. TSA was great again, good shows, good food. No problems until:  Nathan's Famous Hot Dogs.  Paying with a credit card, "Bill Jackson" on the card, and he is asked for ID.  Okay, then she says, "This says William. Do you have any ID with 'Bill' on it?"

Snicker,

He left without a dog.

Bill: Friday, April 25: more Botox & another PT tool

Busy day!

Friday morning was Botox, the first since December.  There were two difficult moments. The first was when the medical assistant left with instructions for Bill to put on a gown.  For Ayn, it was too retro to his time at OHSU, so for her sake I took his left arm out of his shirt and wrapped him in a blanket instead.

The second difficult moment was when the doctor was trying to pry open Bill's clenched left hand. She didn't realize how much pain he really was in because he never says stop.  My guess is that he was holding his breath; he was suddenly not responding to questions and had the "thousand yard stare."  God I panicked, jumped up and got right in his face, and asked the doc if we could get a blood pressure cuff on him.  She had us lie him down first, asked if he was diabetic (no), and he came back fairly quickly. 

After all that, the injections were almost like nothing.  Bill will see the rehab doctor in three weeks to check on the progress.

Our next expedition was way out southeast Portland, just inching into Gresham. Hubby and I bought another wheelchair, and I was tasked with picking it up. 

Back downtown for rehab, with walking, practicing on step-through (visual cues are a big help) and stairs.  Ayn reminded me a couple days ago that Bill used a cycling machine at Marquis with feedback to show how much each leg was exerting. I asked PT if they have something similar; yes, although Jenny and Jeff aren't certified on it. BUT a bit later, Jenny looked across the room and said, "Oh, but we do have this machine," and got Bill set up. 

He stands on the machine's blue pad, with his feet precisely positioned. When he first stepped up, 90% of his weight was on his right leg.  He was instructed to get his right and left to 50-50, and did! He seemed to enjoy it. Ayn said, "Wow, I haven't seen him stand so normal for a long time."  Then he had to balance front/back 50-50 at the same time as right-left were balanced. Then do it without holding on to the support bar. Then another "game." 

I think this is going to be a point of emphasis and it's really going to help him regain the trust that his left leg is supporting him.

Bill, week ending April 18: arm; another trip

Bill sent a message early this week, are you ready for this, there's some movement in the left arm!  It's very slight and mostly coming from the shoulder, which is fine because that's how the left leg started coming back. I think I gasped and squealed back then.

Bill and Ayn are off on another trip so of course we expect great things again!  TSA was smooth and helpful again. Their greatest excitement was recognizing QuestLove, and a little later he told Ayn he admired her hair (dreadlocks).

Bill: Update on state investigation

Remember the nine hour Trip to Hell?  Way back on July 22/23.  I filed a complaint with Oregon regulators, and got a determination this week:

"Re: Complaint #OR8450

"Your complaint regarding [xx] has been investigated by this office.  Based on the information gathered during the on-site complaint investigation, our office did identify one or more violations of the Oregon Administrative Rules for Hospitals.  Deficiencies were cited in the area of Patient Admission & Treatment Orders.

"The Statement of Deficiencies (SOD) for this investigation has been forwarded to the health care provider.  They have ten (10) days from the receipt of the SOD to complete and submit a Plan of Correction for the deficiencies cited.

"We are very appreciative of your efforts to bring your concerns to our attention...

(Client Care Surveyor, CMS Representative, Oregon Health Authority, Public Health Authority, Public Health Division, Center for Health Protection, Health Care Regulation and Quality Improvement)

Bill: Thurs. April 10: Nine months; hinging

Tuesday was nine months.

Wednesday PT was very good, with more "step through" walking tips and stairs. One trick for training the left leg was to stand at a hip-height crossbar with a ball hanging down; he had to stand on his left leg to kick the ball with his right. She also called the bracing specialist to talk about getting the leg brace hinged -- this will allow the ankle to bend for an easier/natural walk, while still providing support. The appointment for that modification is tomorrow!

Next week Bill and Ayn are taking another short trip. Perhaps with the brace mod and the same kind of inspiration from their last trip, Bill will come back with even more tricks in his pocket! In the meantime, we need to get one or two things repaired on the wheelchair because airlines and cabs aren't very kind in handling it :(

Another round of botox finally got scheduled for late this month.  Bill had to intervene for getting the doctor's office to actually talk to the insurance company.

We also ran into OHSU's "rehab navigator" while waiting for his PT appointment. I mentioned that Bill is anxious to get back to work, and she recommended working with the VocRehab office on Interstate Avenue, "They have all SORTS of resources to help you."  We might try to stop in after next Wednesday's PT, but it might have to wait until they return from their trip.  

Bill April 2: Doing SO great

Bill has lost a lot of weight since pre-stroke. Without mentioning pounds, I can tell you he is down 30%.  So after therapy it was a trip to the mall (yuck) to buy pants that will stay up (hooray).

Physical therapy today was great.  We told Jeff that Bill recently conquered standing from a chair without help. So Jeff had some challenges.  Stand from the therapy table with his right hand on his right knee. And down, sitting not plopping. Now stand with the right hand on the left knee. And a controlled sit.  Now with the right foot slightly forward of the left foot (making the left leg do more work),  and oh my, Jeff finally found a challenge for Bill.

Now let's practice on the walking, specifically stepping through with the right foot. And let's practice on the stairs. Jeff worked him!

Bill: no April Fool's

In PT, Bill is working on stairs.  Going down is harder than going up.

This week was a nephrology (kidney) and hypertension update.  The genetic test came back negative, so they won't be adding a new drug.  Ayn's record of blood pressure readings was impressive, so they have instructions on the next med they can try to cut back on.  Doc said two of the meds he will probably always stay on, but two could, might, maybe disappear.

Bill really wants to get back to work, so the next step is how to navigate it. Who all has to clear him? Will he, or does he need to, ease back into work?

Bill, Weds. March 19: videos self-standing +++

He stands from a chair without any assistance

He walks at a much better pace (and for a longer distance than I can record for uploading here)
 

And standing without the cane

 

His sister Dianne says he looks younger because she hasn't seen him this size since he was in high school.

Bill, Fri. March 14, lots of walking, lots of happy

Bill and Ayn have extended their Bay Area trip one more day. They will be able to attend the Grateful Dead Trivia Night, then on Monday have lunch with his boss and maybe some coworkers.

What has he been doing? His report:

"Just walked in from the cab to the hostess station, our friend Kate estimates a few hundred feet."

[Yes everybody put your hands up, put your hands up and say WOW.]

"I've been working on getting up from chairs on my own. Plus sitting in regular chairs in the restaurant. So exciting."

Bill: Tues. March 11: extended Bay Area trip

Almost everyone who is friend or family of Bill will have seen his post on Facebook, but for the few who aren't on FB, here is the scoop in Bill's words: (and if you don't know Grateful Dead, 'Phil' is Phil Lesh, original founding member of The Grateful Dead)

"A rare and different opportunity presented itself last night: After the show, Jill brought Phil over to say hi, and he asked what was up with the wheelchair. When I told him what happened, he asked whether we would be at the other shows this week. Since we were due to go home today, I told him we had considered it, but couldn't get tickets for those highly sought-after dates. He excused himself and came back with another fellow, who he introduced as his business manager and said he would put us on the guest list. So the guy took our names, and when we got back to the hotel (after a terrible cab ride), we extended our hotel reservation and changed our plane tickets back home, so now we're all set for Phil's birthday shows!"

As for continued advancements in walking: Bill is (rightfully) proud in texting often to say how much he has walked from the room to the cab, or from the cab into the restaurant, or standing 15 to 30 minutes at a time. "It's really adding up!"

Bill, Sunday March 9: lotsa walkin'

This outing must be really good for Bill. He reports he walked from their hotel room to the front door for the cab this evening.  Then he walked from the cab into the restaurant, and just spent a half hour standing in the showroom.

Bill: Weds. March 5: off to the Bay Area!

Today is Eight Months.

Bill and Ayn are fans of Grateful Dead music. This past week they set off to Terrapin Crossroads, a venue in the Bay Area for Deadheads! 

Here they are, preparing to go through TSA screening.  The agents were very nice.  Bill had called TSA the day before their flight, and got direct calls back from PDX and SFO within 20 minutes. An agent met us at the airline counter for the escort back. (The airline agent, however, was a bit of a ditz, but nothing fatal.)  As I watched from afar, I saw that the couldn't stack their electronics in one of those slide-through bins.  SO: one bin for a Mac Air, another bin for the other Mac Air, one bin for the two iPads, one bin for cell phones and one pair of shoes.  By the time they were ready to go to the hand screening area, I believe their were four or five agents to push him, carry his cane, and carry all the bins and carry-ons.

Bill posted various pics on Facebook, so if you're connected to him, these are just repeats.

The view from their first class, first row seat (you are looking at the flight attendant's jump seats).

First class appetizer

To get from the airport to their hotel, they had three buses. Two good drivers, one jerk. I guess that happens, but I have to believe humanity is better than that, and they just got a bad draw.
 
  Front row seats for the shows

 
 

Bill: week ending Feb. 28: two therapies, short shopping, long walk

Yes, Bill had PT and OT this past week. 

OT continues to work a lot on hand and shoulder stretches, as well as overall alignment.

PT was asked by Bill and Ayn to specifically work on getting into and out of the airplane seat. Next week is their trip to the Bay area.  Lucky them, they are flying first class so there is more room. The team worked through a mock setup of how tight the area might be, where Ayn should stand, and some other tips. 

After therapies, there was a short trip to Whole Foods. Oh, we also went by the post office, thinking we might try for the passport  again, but realized Bill's wallet (with both their ID's) was back at the apartment. Oh, well, another time when we can get there right at 9:00.

Speaking of the apartment, once we were back, Bill wanted to go outside and take a longer walk. It went well, even with a bit of wind chill, and he covered about 60 feet. The last part was even a little uphill. 

One final good note of progress: over the prior week, Ayn has been able to change her position for helping him stand from a chair. She had been at his front/side, stabilizing the left knee and helping with a p-u-l-l.  He doesn't need the knee help now, so she can stand behind and give ever-so-slight of a push when needed. Much easier and safer for her back and shoulder.  She's pretty small, and Bill's fairly big, so we have all worried about her getting injured. 

So as always, Hooray Bill!

Bill: Fri. Feb 21: gotta love DMV

As a retired government employee, I fully sympathize with the workers who are harangued with the stereotype "bureaucrat."  BUT why does a trip to DMV always reinforce the thought?  Ayn was finally able to go get her name updated -- oh, a different bureaucratic story about getting a copy of her out-of-state birth certificate. One and one-half hours. We pulled number 65 at 9:18. They were on number 36.  I was rather concerned 20 minutes later when they had advanced by just four customers. We left the office at 10:45.

Off to the post office to apply for passports. We had to give up on waiting there so I could get back home for hubby's appointment. Blah. Next week.

But the good news about covering DMV is that Bill and Ayn shouldn't have any travel security issues when they fly in two weeks!  Ayn's new last name (go, Jackson!) will match between her ID and the ticket.

Observation on Bill's progress: his standing from a chair, and his transfer in/out of the car are much stronger and smoother each time I see him.

Bill: week ending Valentine's Day, Fri. Feb 14: yes, he had therapies

Yes, Bill had therapies on Thursday, back-to-back-to-back. I noticed improvement in his left leg for standing, and for getting in and out of the car.

Perhaps we can get Bill to post on update on his speech therapy.  I (Julie) was busy 'playing' with the pharmacy refill. Skipping the play-by-play,  let me just say it took the duration of  two hours of his therapies, four trips to the pharmacy window, and one trip upstairs to his doctor's office to get the med we tried to get LAST week. Luckily, he wasn't out yet.

Physical therapy was with a new therapist. She promises she has already had her children (last therapist is on maternity leave) and isn't having any surgeries (the prior-prior therapist). She had him standing and weight shifting to the left to build some more confidence in the left leg. Another standing exercise was alternate foot taps up to step platform.

During the transition from PT to OT, they all talked about Bill and Ayn's planned trip to Northern California in early March. 

Sadly, I missed most of Occupational therapy, making appointments through March. And making the third of those four trips to the pharmacy window.

After therapy reward: Ayn and I went to the Apple store to get Bill's new Mac Air!  If you haven't seen them, they are very slick, very light.  I think said his older Mac Pro is six years old (that's about 120 in computer-life years, isn't it?).

Bill: Social Security usually good service but...

Bill was required by Long-Term Disability to also apply for Social Security Disability benefits.  Dealing with SS has been fairly easy: initial on-line application, papers sent, signed, turned in documents to be copied at the local SS office -- well, a bit of a wait there, and the security screening, but not a big deal.

Until

Yesterday. I called to update, as required, that there had been a new doctor and a new test. The message was to expect a 50 minute wait, but I could request a call back instead, and not lose my place in line. Good deal. The call was a little more than an hour later. FIRST the guy couldn't find Bill's case in the system. "Did you apply on-line or in an office?"  He asked this three times as I hear his keyboard tapping. Yes, applied Online, papers received, turned in, additional documents....  "Okay, my fault, I see it but... Can you hold?" 

Sure.

I park at the outlet stores, walk in, make my purchase, and he finally comes back on the line.

"The case is completely under the control of the local office now, so here is the number."  But he gives me a number that is disconnected.  So I got the number from my paperwork when I got home.  Silly me, trying to take care of administrative stuff during drive time.

Bill: Fri. Feb. 7: cancels; trips (as in travel, not falling)

Yes, Thursday therapies were canceled for the weather.  Bill and Ayn planned to do lots of work at home.

Trips: Earlier this week, Bill booked the four of us (he, Ayn, me, hubby) to take a cruise to Alaska! We made our first deposits yesterday. Now to look for the best trip insurance...  Our travel is end of August / early September.

[Hey, Brooke, we are carrying on Grandma's tradition of being gone for your birthday!]

Another travel plan: in just a month, Bill and Ayn are going to the Bay area. It will take a little planning (and maybe some practice), but it could be a great adventure for them!

TOMORROW is seven months.

215 days

5,160 hours (at 8:00 or 9:00 p.m.)

Bill: Weds. Feb. 5: not legal to drive

Bill had his long-awaited appointment with the neuro-ophthalmologist.  Bottom line: he is not legal to drive, and should not expect to get it back. 

His acuity is fine: that is, his vision using his old glasses is great at 20/20. The health of his eyes is good -- she didn't see any damage at the back of the eye which sometimes occurs with long-term high blood pressure. The problem is that his field of vision is gone on the left side.

Here's more of an explanation, a distinction.  He can see the same out of BOTH eyes. In our eyes, what we see to our left (not with the left eye, but with the left side of each eye) goes to the right side of the brain. The right side is where the stroke damage occurred. And she said that unlike the other left-side damage which may recover completely (his left leg, his left arm), the neuro-optic fibers don't grow back. 

Bill was very calm about it. So was Ayn. And me.  (Yes, if any individual had 'lost it,' we all would have.)  So this is a big change in plans.  They had been talking about two years from now, when his daughter graduates high school, they could buy a motor home.  He could still work from 'home,' they could travel to their music festivals, and continue to enjoy life. 

No, Ayn can't drive because of various sensory issues.

Here is his test result on each eye:

The test description: with a patch covering one eye, he is looking into a box at a center light. When he sees a white light flash somewhere in his field of vision (not moving his head to look for light), he taps a button. The picture above reports black dots for any flash he missed.

So, moving on. Tomorrow's therapies might have to be canceled for weather. Where I live, we have a chance of snow, a higher chance that it won't hit until noon. But it freaks out my husband, so he might get really stressed if I try to get to Portland and back to help with transport to the appointments. And the wind chill is going to be way too low, about 6 degrees, at 7:30 in the morning from them to wait for the streetcar.

Gotta go. Hubby wants to make sure we have enough toilet paper and paper towels (smile, but friends and family know I'm not kidding).

Bill, Thurs. Jan. 30: Tiredness

[post by Julie]  After last week's therapies, Bill got sick.  Then Ayn. So they've had several days of tiredness, canceled Monday's PT, and are still a tad out of sorts.

Thursday had PT and OT. 

PT worked a lot on the standing, walking, weight shifting; overall, working to build trust in the left leg.

OT was a new therapist, Roseanne. It was very interesting to see a different approach. Her work today was very related to the weight shifting done in PT. She had Bill sitting, and kept going round and round, checking his alignment, where is the pelvis sitting, let's lean straight forward to take the weight off the butt then go back to just the right spot. She also had a different approach to opening that curling left hand. Instead of slowly prying the fingers, roll the palm over, and massage the "palm pad," pushing from the wrist into the palm of the hand.  Lots of shoulder movement was included, too. A very busy session.

Several administrative things for me to take care of today, but you just want to hear Bill's progress, right?

Next week will include the long-awaited trip to Dever's Eye Institute (at Good Sam) for the neuro-eye doc; is he still having issues with field cuts or peripheral limitations?  She'll let us know.

We're thinking of planning an Alaskan cruise trip. Yes, a little scary given the Norovirus on the recent Caribbean Lines. Looking at Princess -- anybody have any experience or suggestions to us novice maybe-cruisers?

Bill, Fri. Jan. 24: Lotsa therapies

[Julie post]  This week ended on a tired note. Because of scheduling issues, Bill ended up having a PT on Thursday afternoon, and then all three therapies, PT/OT/ST, back-to-back starting Friday at 9:30.

Thursday's PT worked on the right (yes, the right) shoulder. He's been putting a lot of strain on it using the cane to walk. I'm a bit of a nag, telling him to make the left leg carry more of the weight, and it's coming along very nicely. Friday she worked more on the left leg, specifically on exercises to rotate the leg in, instead of splaying outward.  AND she added three exercises for the right arm.

Speech is working on "executive function," attention, and memory. In one test, she would read four-word sentences, such as "Joe's car is red," and have him say in reverse, "red is car Joe's." That wasn't very successful, about 40%, so she went through how to set strategies (one being: don't rush it).  The she went through the same sentences, but he was to alphabetize the words, "car is Joe's red."  100% correct.  Then she worked a 'switching' exercise. She would read off numbers, and he was to tap the table each time a number was a multiple of 2, but when she said 'switch,' he was tapping at multiples of 3. Another task was  listening to a series of five words (read quickly) and say which word didn't belong: school, house, mail bag, store, office. It was really go-go-go for 30 minutes, and she sent homework!

OT worked a lot on sit-to-stand.

Next week's schedule will be easier, with PT Monday, then PT/OT Thursday. They will have lots of time to cover exercises every day at home.

On the fun side, Bill has been in more contact with coworkers and friends (phone/email/chat). 

Bill, Mon. Jan 20: no PT; other funny

[post by Julie]

Bill's Friday PT was canceled (therapist out), so sorry to let you down on possible videos!

So for your weekend entertainment, you get me with another silly act. My daughter and her husband were here Saturday, and I was heading through the garage to help him with a project. Socks on my feet, ready to put boots on.

But I had a pair of knit gloves in my hands, so you guessed it, you can picture it, there I was, trying to put the gloves on my feet.  Egads, will I ever get my brain back?  Oh, and a bit later when I was getting my husband's noon meds, my daughter was next to me chanting, "Don't take Dad's drugs, don't take Dad's drugs."  Thanks, sweetie.

Bill: Thurs. Jan. 16: leftasaurus stronger; left elbow looser

[post by Julie]

Bill and Ayn affectionately call his left leg "Leftie."  But sometimes, when it seems to be monstrous and not cooperating (as if it were a separate object), it gets called "Leftasaurus." 

I'm here to tell you, Leftie has made great progress this week.  When Bill is getting in my car, I have had to help lift and maneuver Leftie on his last trip from the running board into the car.  Often it has been fighting the tension in the leg, with verbal clues to Bill to "march," or give the knee-lifting motion. Thursday, however, I was happily surprised when he lifted all the weight, and I only had to help finesse the narrow passage between the seat and the door frame! 

Go Leftie Go!

Speaking of left-sided objects: Bill's left arm.  Occupational therapy (Wednesday) worked his left shoulder and hand; she is quite pleased with how much the left elbow has relaxes. His shoulder and shoulder blade are sensing some improvement, although I can't see it yet -- when she instructs him to roll his shoulder back, I can't see it, but she makes comments like "Very good" or "that's better" because she can feel the muscles/tendons engaging. The left hand is better at staying straight and not curling at the wrist, but the fingers still have to be constantly stretched to be available when control returns.

Thursday was the first speech evaluation in the two month's Bill has been home. Bill and Ayn had a couple of prior appointments they had to cancel because of icy mornings.  Just a reminder, speech covers more than talking: cognition, memory, attention. 

Bill sometimes does the funniest thing of adding difficulty to simple instructions. One evaluation was to name as many animals in a timeframe as he could. So he sets off alphabetically, one per letter, and when he gets to "H" I'm expecting 'horse' but he comes out with 'hyena.'  And us mere mortals might give 'mouse' or 'monkey' for "M" but he delivers 'marmot.' Unfortunately he got stuck on "N" and couldn't come up with anything, and couldn't break his own pattern to continue past, so that will be one area to work on.

He will have PT today (Friday) so maybe an opportunity to try again for some video.

Bill: It's not about me [Julie]

[post by Julie]

I've had so many people say, "Julie, you are so strong" or similar comments that I feel the need to set the record straight.

First let me say I really appreciate the encouragement, but Bill is the one who has worked hard to come so far. One of my [many] cousins remarked that we all have our crosses to bear, and man is that true throughout our family. Yes, if I start through the list of my brothers and 16 cousins, each has had their fiery trials. And we all have been a big support group for each other.  It's not just about surviving challenges, as we celebrate life's accomplishments too! Marriages, births/adoptions, house-buying, travels, the whole messy lot called life.

My posts are, obviously, from my point of view, and I suppose that view can naturally carry a martyrdom tone -- not my intention.  I've invited Bill to be an author on this blog; he's a private sort, and might not have much to say about himself.  We will see.

Bill: Thur. Jan. 9: PT stairs

Stairs! Well, one step up on a riser. Yes I have videos, but once again am having problems posting any. I will send it to Bill and have him figure it out.

[post by Julie]

 

Bill: Weds. Jan. 8, Six Months

Six months.

SIX months.

What have I learned? Gosh, where to start.  Although I am not in the medical field, I was lucky to have taken advantage of first aid training in my prior jobs, AND read information in our weekly employee newsletter during "heart month" on recognizing strokes.  Bill delayed Ayn a little bit in calling for help, because he only knew he felt funny. As Ayn saw him deteriorate, she convinced him to let her call me.

Why did I even ask the stroke questions? Was it because I've asked my husband before, and it's my only tool in the toolbox? Regardless of Ayn's answers - Bill's answers - I would have said to call 9-1-1 to have paramedics check him out, and they wouldn't transport him if they didn't think it was necessary.

I have also become very close to my daughter-in-law. She is so dedicated to Bill and his recovery. By staying at his side this ENTIRE time, she has been able to point out issues early on and advocate on his behalf.  Examples: the sedative propofol would be turned off 10 minutes before an ICU doctor would test neurological responses, but she observed it took at least 30 minutes for Bill to come around.  Or a nurse or CNA who was chatty-chatty on the graveyard shift, depriving him of much needed rest, and reducing the effectiveness of the next day's therapy.  On the positive side, she noted which therapists had the best results with him, and asked to be booked with those individuals as much as possible (hello, Meadow! Yes, her real name.)  And Ayn was much kinder about it, not wanting to ruffle feathers, where I nearly yelled, "Who WAS that woman" on a new, over-perfumed, meandering therapist.

So I've learned from Ayn that advocacy doesn't have to be delivered with a stick. Um, I gotta admit I'm still working on implementing the lesson, especially when I'm tired, which is most of the time, um, but, yeah...

Power of Positive. I know when I shared the July Nine Hour Trip To Hell Failed Transfer, the details upset a lot of people. Perhaps I needed to vent, perhaps I needed to document. Then I had to let it go (after filing a complaint with state regulators).  From the event, we learned we had to visit a place before Bill would be transferred. We still aren't sure what our rights are when medical care is not being provided in a medical facility - and your loved one can't get up and walk out to a different facility. MOSTLY I learned the importance of moving on, creating good karma, welcoming each person's gift of good thoughts whether it is in the form of prayers, wishes, or the very generous "what can I do for you?" So thank all of you, once again, for your positive thoughts.

Bill: retro-funny

When Bill was in ICU, a TON of different medical personnel would pass through every day.  OHSU is a teaching hospital, so lots of students/interns in additional to various specialists.

Ayn is easily overwhelmed with crowds, and she copes by "shutting down." I got in the habit of explaining to newcomers "I'm Julie, his mom, and this is Ayn, his wife."  It also prevented any embarrassment to the personnel of thinking I was his wife, and Ayn his daughter!  Ayn does look young, 'though she's actually two years older than Bill.

One time I was very tired, very weary, so damned exhausted, my words mushed up and came out as, "I'm Julie, his wife, and this is Ayn, no that's not right..."  OMG "No, Ayn's his wife, I'm his mom."

Followed by laughter to the point of tears.

Bill: New Year's Eve Day

I was so busy burning up the old year in my last post, I forgot to talk about Bill's last activities of the old year.

This was a fairly quiet week for him because of the holiday and so many people on vacation. New Year's Eve Day included occupational therapy. Most of this was practicing getting up and down off the bench from different heights, then some stretching/manipulating the left shoulder.

Then a trip to Whole Foods, Bill's first grocery shopping in almost six months.

I captioned this, "Where's the bacon?"  But he didn't really say that.

And perhaps I was mistaken with the term "quiet week."  His daughter had three friends over for New Year's Eve.

Goodbye 2013