Bill: p.s. on Dec 27 car trip

I forgot to mention we had a bit of a struggle last week getting back into the car after OT. The car was in a spot with a slight uphill slope from the back-to-front of the car -- I mean, really slight, but noticeable. Bill's selected seat was to be the rear passenger-side seat. There was also a slight tilt downhill from the passenger side to driver's side. So when Bill got out of the wheelchair and took a bigger-than-I-expected step forward, he was right next to the car door. His next step needed to be backwards, with a little pivot, so he could sit in the seat before swiveling in.

Easy, right?

No. I've worked with mobility issues a lot, so let me try to break this down. When you have a mobility issue, you can't rely on the old muscle memory, so each motion has to be broken down and planned before executing. Oh, and you also don't trust everything to go smoothly, so the fear of falling freezes movement even more. 

So imagine you are near the car seat, your target, but not close enough. Your face is in the car door. You need to lean forward even more, feeling the downhill slope behind you. You need to put all of your weight on one foot or the other, and on the cane, so the other foot can move. Just for fun, take a fistful of blood pressure meds a half hour or so before you need to move, because having some light headedness kick in IS fun.

You guessed it, Bill's knees started to buckle. Ayn had the foresight, or instinct, to push his downward momentum toward the seat. At least he was mostly braced against the car instead of going to the concrete. (Please forgive me if it's cement rather than concrete. Can we just agree it's a very hard surface?) After resting a bit in this crouched/braced position, we were all able to push and pull until Bill was in his seat.

Chalk up another learning experience.

Bill: Christmas week, Botox follow-up, OT, car travel

Botox follow-up: The botox injections in the left arm have helped some, especially with the elbow and some with the thumb. He is scheduled to have another round in March.  Oh, and for this appointment at Good Samaritan clinics, I picked up Bill and Ayn in my car (fondly known as "GAAK"). First car trip in a very long time.

Occupational therapy: Anne-Marie did progress charting on his left arm. The range for the elbow was remarkable, but she is concerned about how tight his shoulder is, so she will send a note regarding botox, asking for some concentration on that joint.  Well, it's not the joint itself of course, but the supporting muscles/tendons.

On Christmas day, I again picked up Bill and his family for the trip to Grandma's.  I'm so glad they were able to go, after missing Thanksgiving. After wheeling him to the front of the house, he was able to navigate a small step up -- yes, first time for a step -- and a challenging threshold. He played a rowdy game of "Cards Against Humanity" with his sister. His uncle "JR" last saw him in late August, so a remarkable change in four months. And his aunt Joan was impressed with Bill's strong voice.

Bill: Sat. Dec. 21: family; retro-fun

Yes, Bill and Ayn had a successful family get-together. It was a drop-in event, so not everyone was there at the same time, but the siblings (Bill, Ben, Brooke) did all cross paths at one point. Grandma came just (JUST) after Brooke and her little family left - oh, no!

So retro-fun: Ayn and I have talked about filling in some downtime with retro-fun, as we remember silly things we've done are that have been said along this journey.

"Don't kill the Marmot!"  You all know Ayn never left Bill's side. During his stay in ICU, she slept on the waiting room floor.  When he was on floor 10K, she was in his room and able to use the window-seat bed area.  We rotated her bedding between two sleeping bags, one of which is the Marmot brand (from REI, if it matters). The first time I was taking it home to wash, we were desperately trying to find the cleaning instructions, because it didn't have a tag.  Bill gave a half-grin and gave his instruction: "Don't kill the Marmot!"

"What am I doing?"  (A recurring theme.) Bill wears an air cast on his lower left leg to support the ankle, keeping it from turning.  I think I posted a picture at one point; it has a tie-dye-ish pattern. Ayn found herself one morning trying to put it on her own leg. Her first thought was "This doesn't seem to be right, hmmm, what's wrong with this, hmmmm, what am I doing?"

Bill: Fri. Dec. 20: PT and Solstice

I'm sure Ayn would like me to say "Happy Solstice" - almost. Officially it arrives here 9:11 Saturday morning. To celebrate, Bill and Ayn are having a few family folks over this evening, with goulash available! A very nice winter dish indeed. (A few folks = seven of us, at most.) Their other reason to have us over is that they are not sure they can make it to the family Christmas gathering - insert sad face.

Bill had PT Wednesday. Andrea, "Andy," said his walking is coming along well. We appreciate the improvement in HER comment, compared to last week "I didn't think your walking would progress." No limits, sweetie!

But that evening he had a "slow but unexpected trip to the floor." His knee gave out, but he is okay. Luckily two friends were visiting and able to help (and one is a nurse). Bill was tired, so they canceled Thursday's PT, and spent the time exercising and reading.

Hope everyone has a good weekend. I might not have anything to report until Monday, after his botox follow-up appointment.

Bill: Weds. Dec. 18: march, kick, clam, slide

A new version of standing! Last week's PT had Bill stand without assistance. On the edge of the table, lean forward, lift, slowly sit back down.

Unfortunately last week he didn't have his first speech evaluation (first outpatient visit for rehab), because Bill and Ayn canceled - ice on the sidewalks!

Also unfortunately, they had a difficult time trying to get prescriptions refilled. One problem was a missing script. The nephrology doctor said she wasn't changing anything, but only gave papers for four of the five meds. Standing at the pharmacy, Bill was getting bounced in phone calls between nephrology and his general practice doctor. Then pharmacy said their insurance was canceled. Wait a sec, we got all this straightened out last month! Bill was on the phone again, this time with United Healthcare, and was told that when he went on COBRA, the group and member numbers changed. So the billing went through. Oh, and they were out of labetalol, and could get it the next day.

This week, Monday's PT was a once-every-three-weeks evaluation. His assigned homework is all for leg and hip strengthening:

• March: sitting in a chair, lift the knees as high as possible, with controlled descent.
• Kick: still sitting, keep the knee down but lift the foot. Ayn is tasked with holding her hand out as a target!
• Clam (clamshell): lying down, with knees bent up, let the knees drop to the side and PULL/squeeze 'em back up.
• Slide: again lying, extend the leg out and slide the heel toward the butt, keeping the knee pointing up.

Bill had a follow-up appointment with his general doctor, and lab work. The doctor asked what his long-term plans are, does he plan to go back to work. Bill said yes, of course. It was good for her to ask, as that doesn't seem to be brought up often enough! And she didn't drop it there, but was encouraging about different options to explore if his left arm still limits his ability to use the computer.

Keepin' on keepin' on.

Scary, stupid, silly things

Throughout the last five months, Ayn and I have done some really weird things once in a while. We blame it on being exceptionally tired and stressed; we say we left our brains in Neuro ICU.  I didn't keep a list, so I am SURE there are many examples permanently gone in the winds of time. You understand: if I left my brain behind, then where the heck are those memories, right?

Scary: let's get these out of the way. And I've already told my Mom, so this won't freak her out. Otherwise you would see a big flashing warning of 'Mom, don't read this.' I ran a red light. Twice in fact. The first time was after the terrible, horrible, no good, very bad transfer in July. As Bill was being loaded to be taken back to OHSU emergency, the ambulance driver was very clear: "We have certain protocols, and we will be running lights and siren. But don't try to follow us. Just drive safely and we will all get there at some point, okay?" 

Ayn and I left before the ambulance. But on 82nd Avenue, they passed us. (Side note to local folks: Banfield Freeway was closed for nighttime paving, so we were on surface streets.) And I had every intention of not trying to keep up with the ambulance. Those strobing and flashing lights are annoying anyway.  Halfway through the intersection at Halsey, I realized, "Holy cow, this is a red light." Luckily the person starting to turn left, across our path, saw I was not stopping. Light traffic, 3 in the morning, and at least one aware driver.

The second time was in Northwest Portland, leaving Good Samaritan hospital. A weeknight, I believe, maybe 9:00 or so. Same sort of realization, halfway through the intersection, "That sucker was red!" Thinking back on what happened, I remembered that there are two businesses in the block, or the prior block, with neon red signs. I think in my brain the red traffic signal just melded into the red business sign. Egad.

My third example of brain-gone-scary: I accidentally took my husband's medications. One evening, around 6:00, I offered to get his next dose of meds for him. Brought them out from the bathroom, stopped at the kitchen, thinking, "I'll just fill my water bottle, because I need some water anyway, and he can use it to swallow his meds." I took a drink of water, walked the few steps to his chair, somehow swallowed his pills during those few steps, sat down the water and declared, "Oh my God, I just took your pills. I have to go try to throw up." This dose was two pills, and neither med was critical to putting me at harm. But wow. Can guardian spirits have heart attacks? Because I'm sure I am pushing the limits on my little gal. Can guardian spirits ask to be reassigned?

Stupid. Certainly my situations above qualify as stupid, but they crossed the line (way past the line) into scary. One silly-stupid example was when I needed to fax a form to an insurance company. We were at OHSU, and we could have faxes sent from the nurses station. I walked everything over, and asked her if she could return the papers to us when it was finished, "We are in room 805." She looked at the paper and at the status board behind me, seeming very confused, so I apologized, "I'm sorry, I told it was okay to have faxes sent from here."  She said, "805? Not room 26?" Oh man, she was right. 805 was Bill and Ayn's apartment number at the time.  A good laugh was had by all.

Silly. The best "silly" comes from Ayn, so I hope this is okay to share. While Bill was at Good Sam, and things were going well, Ayn texted me one evening. "I left the room to go get something from the cafeteria. I was thinking how well Bill is doing and he's going home soon. The cashier asked 'How are you this evening' and I said 'I love you.'!"

Bill: Mon. Dec. 9: five months; tram ride

Yesterday was five months.

Today Bill had another appointment with nephrology/hypertension.  Here's a picture of the trip to the appointment.

(No, there's not a pom-pom on his hat. We had the scarf wrapped around and over his ears, trying to keep warm in the b-i-t-t-e-r cold.)  I think the literature says the tram climbs 3,900 feet from the waterfront to the hospital landing up the hill.

The doc was pleased with the blood pressure (and she really liked the on-line documentation Ayn kept -- she just showed her on the phone). No changes for now.  We asked about the possibility of the genetic testing, because their clinic, two months ago, was checking on whether insurance would cover the test. Oops, someone dropped the ball, but it was after the okey-dokey came in, where the outside lab didn't follow-through on the approval.

Tomorrow Bill has speech and PT. They will drop off the refill orders -- oh, the short version of a side story on the downtown Safeway pharmacy is "avoid them; they treated Ayn horribly."

Wednesday is a first appointment with the neuro-eye doc. More PT Thursday.

On another note: thanks to everyone who helped think happy thoughts for Bill's grandma's surgery today. She doesn't want details published for those who don't already know, but it went well, no surprises, she will go home in three to five days.  And a HUGE thanks to my Aunt Char (and Uncle Tom) who will stay with her for a few days.

Bill: Thurs. Dec 5: Jumping through hoops (sort of)

Jumping through hoops? Does walking through hoops qualify? Here Bill is given a target, AND she timed him. The first time through the course, he took 27 seconds. He got it down to 20 seconds. You will notice he doesn't have all the holding/pushing from the therapist from prior videos!

Backing up is harder. And the red sleeve on his left arm? That's called a shooter's sleeve. It helps calm the overstimulation his skin has been feeling (she said it is similar to swaddling a baby - awhh).

Bill: Mon. Dec 2: Botox; news from Thanksgiving

First, Bill's 'little' brother turned 30 yesterday. A Very Happy Birthday to Ben! And their brother-in-law, Nate, will turn 34 tomorrow.

Second, Bill had his initial Botox injections today. The process was fairly complex, with probes attached to his arm and to the injection port, giving noise feedback on where the muscle activity was (the tension that needs to be relaxed, so he can regain flexibility and range of motion).  At least a half hour to inject several locations. Bill will have an appointment with his head RIO doctor in three weeks. They will look at the impact, prescribe some intense OT at that point, and look at further injections (if called for) in another month or so after that.

In all, it took a large part of the day. We all left the apartment about 11:00 to catch the streetcar for his noon appointment. Prepped with numbing agent, waiting, waiting; out of the office 1:30 or so, lunch, and back at the apartment 3:00. We took care of three administrative things.  In case you're wondering how the war on paper versus non-paper is coming, today's score was 2-1.

Ayn called at 7:30, letting me know he had a gentle slide to the floor. Some difficulties getting back up, but with daughter C's help, they were able to manage. Eventually.

I won't see them tomorrow. Luckily their PT and OT appointments are after lunch, so they won't have to deal with the predicted cold weather early in the morning.

On another note, we had news on Thanksgiving that a relative will have surgery a week from today. We have tons of relatives, and those who should hear the details have already been informed -- I won't go into that here. There is every reason to expect a positive outcome. Ayn's comment when I told her was, "Gawd, I hate 2013." Ditto that. But we are emerging stronger, focused on and valuing our family and friend connections.  Here's giving thanks to each and every one of you.