bike

The Team Save Janet Report is Out! #TSJ #Transfer

Renovation Day 12. Lots of progress today, construction, demolition and decision making. Randy made good progress on the kitchen cabinets as well as the area around the fireplace. I managed to break up most of the lovely pink tile in both bathrooms and with Randy’s help Janet and I decided on a counter top, handles for the cabinets, moulding for the fireplace area and floor for the bathrooms. Good day.

Just after lunch Janet was hanging out in the dining area with Kieran, Wes, Willie and Humberto, laughing at the verbal jabs being thrown by Kieran and Wes. I hid from her for a bit to watch how she interacted with it all and she was seeming quite entertained. She was ready to go when I made my appearance knowing we were looking at something for the house. I dragged her around to a number of places where we met Randy with the goal of deciding on a number of key items for the new house. Janet was a real trooper, admitting she was tired but pushing through and helping make some really good choices. I was pretty confident we’d get the counter top quickly and we did. I thought the handles would be more challenging than it was. Janet did very well in saying what she liked and didn’t like and the choice was made a lot sooner than I thought. Neither of us had too strong an opinion on the mouldings so that was easy but the bathroom floor was another story. Janet was quite tired by this time and the process was made more difficult as soon as we realized I had brought home the wrong floor sample the other day. What me and the salesman that day thought was the right one wasn’t so when our actual salesman came out with the real one this afternoon I freaked a little. Luckily after we inspected it, all of what we’ve chosen so far works well with the floor so no need to freak. It still took a long time to narrow the choices and make a decision on the bathroom floors and Janet was getting a little frustrated but hung in there really well and contributed right to the end.

I’d been wanting to have Brian coach me on car transfers soon as I feel I’m doing more than I should and probably not using the best technique for Janet’s right foot. While we were out today and making so many stops I thought it was a good idea to try some different moves. First up was having Janet wheeled up to and facing the open car door. I asked her to hold the top of it and stand up. She did, pivoted around easily and sat in her seat. Just like that. All I did was hold the wheelchair and move it out of her way. I was very impressed. The first attempt at getting out of the car was that same move in reverse. Janet nailed it and again, all I did was hold the wheelchair and be ready to catch if need be. No need. As much as I praised her accomplishment she still didn’t think it was that big of a deal but by the end of the night she was starting to believe and agreed we don’t need Brian’s help. Kidding.

After all our running around we picked up Nash and some dinner and headed back to Connect. Janet reluctantly agreed to a gym session after dinner and was not having a good time on the Shuttle as she was cold and tired. Garrett told me the bike was now in Janet condition again so I got her on it for a little test ride and I think it will be a nice addition to her routine. She looked good on it and peddled more than twice as fast as she was the last time she was on it. Janet won’t admit it but I think she thought it was OK.

The lack of an afternoon nap made for a relatively early night and after a nice sleep time chat I said goodnight. Praying for continued building of strength, improved flexibility and greater command of her right leg.

Record Breaking. Janet sets records daily. #TSJ

It’s been a record breaking week for Janet, setting personal bests in the pool, on the bike and in her sit to stand capabilities as well as her endurance in the standing frame. Health wise she seems very stable with regular BM’s and no obvious side effects from any of her meds. The Restoran ended today, (the magic poo pill) so it will be interesting to see how she does without that. Janet will visit her GP on Monday and part of that visit will be to assess all her meds and see if any further adjustments can be made. Dr. McCann is ordering an increase to Janet’s Baclofen dosage and I’m really interested to see if it has any effect. Janet has been on a very low dose for a long time now with no recognizable effect and if there is no change after the increase I’ll ask that it be discontinued.

A week ago, Jess instituted a program for Janet where she writes the day’s activities on a whiteboard and Janet crosses them off as they are completed. Janet has caught on to this nicely, easily reading what each activity is and drawing a line through it when done. A couple days ago Jess supplied Janet with a digital watch to help her get a sense of the time of day as each activity occurs. Janet was puzzled by the watch, arguing that she has one at home but agreeing it was more a piece of jewelery than a useful piece of equipment. Janet can easily read her Connect watch but needs a lot of work relating to “today” as this morning she woke up thinking it was Christmas. She was still complaining to me when I got in this afternoon that “isn’t it time for grass?” Her code for Christmas.

Janet’s day is centered around her physical activities as the emphasis remains on taking advantage of the Botox. Twice a day she rides the bike in the gym and continues to make steady gains in leg strength as a result. A week ago her personal best was thirty minutes and .83 miles using the arm assist. Today she went for thirty minutes and .62 miles with no arm assist at all! When Janet first started the bike she couldn’t even come close to pedaling without the arm assist. Similar benefits are being seen in the standing frame as Janet can now tolerate close to an hour twice a day. She doesn’t like it much but she tolerates it. As noted the other day Janet is also getting much better with her sit to stand exercises, so much so that she is getting a stripper pole installed in her room. For now it will be used to help her independently get out of bed and into her wheelchair, no dancing yet. As you all know Janet also is excelling in the pool and I expect that to continue improving each time we go.

Our weekend at home was an enjoyable one with Saturday being a day off from physio therapy type stuff. I was reluctant to give Janet the whole day off but that’s the way it turned out and I think it worked out well as she slept in, pulled weeds in the sunshine with me, went for a walk around the neighborhood and made a really good sandwich for herself at lunchtime. We went to church Saturday night for a change and really enjoyed the music and Tim’s message. Janet was fully engaged and we had a good discussion about it all afterwards. Janet continued to be quite talkative well into the night and loved the sushi dinner we had as well as the movie The Guilt Trip. Sunday was a change from the usual as well. Tez was at Connect for a few hours and offered to work with Janet if I took her out there. They had a really good session of sit to stand work teaching Tiffany and Julie how to work with Janet should they need. Everyone learned a lot and Janet performed very well. I wanted Tez to see Janet on the bike to make sure all was well with her positioning etc. It was and liking what he saw he challenged Janet to pedal with no arm assist. She of course did it and is now going thirty minutes that way. After a nap at home while I cut the lawn we made dinner then went for a hot tub. By the time we got outside it was pouring rain but Janet laughed through it and had a good time soaking in the warm water as the rain passed through. She was exhausted after a long and busy day and was asleep before I finished our goodnight prayer. The weekend was capped off with a nice lunch with Kiko and Joel after swimming on Monday before the trek back to Connect.

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Janet seems to be getting more comfortable and confident at Connect but is also more aware that it is not home. Her interactions with the other residents are improving as she gains confidence in herself and gets involved in more things around the house. Instead of an interview this week I decided to have Janet give you a brief tour of her home away from home. Crank up your volume and enjoy.

A Steady Climb. Janet continues to move in the right direction. #TSJ

It feels a little strange to be writing again after almost a week away from blogging. Thanks and welcome to all of you who have joined me on Twitter. That’s where you can now keep up to date with Janet on a daily basis.

This past week has seen Janet steadily moving ahead in a lot of areas, with Friday marking the beginning of the end of her BM challenges I hope. We finally got the medication started that Dr. Agnew said would work, and boy did it! Janet felt relieved afterwards and I still don’t understand how she never felt any pain or discomfort during the long period of time where she wasn’t going. That may be part of why she wasn’t going and hopefully while at her colonoscopy appointment, Dr. Nash will be able to explain what’s happening. As of today all is well in that department.

When I first met Janet she was challenging herself to become more assertive. As the years went by she learned to make sure her voice was heard very well. I’m starting to see a return of that strong personality now as she voices her opinion on things and has taken a few verbal shots at me. The funniest one being last night while watching basketball. I had been nagging Janet all afternoon about drinking water but hadn’t said anything for a while. Since it was nearing bedtime I casually suggested she needed to drink more water. She very quickly and sharply (smiling though) said “why don’t you drink more water”. Bob and I both laughed out loud along with Janet who promptly had a few big sips of water. I like what I’m seeing from her this way and although she still lacks confidence in her physical abilities she is clearly gaining a better understanding of her situation and the moment she is living in.

Speaking of physical abilities, Janet continues to impress not only me but her therapists as well. I’m praying she soon recognizes herself how well she is doing. Friday’s sessions at the KGH pool were strong with Janet doing some good balancing and “walking”. In our pool on Monday Janet “swam” on her back for ten seconds on two separate occasions. I’m calling it swimming because she continued kicking her legs and moving her left arm to keep her face out of the water. There was some propulsion but hard to measure in such a short period of time and I was so excited I kept thinking how I could get video of it all. No luck with that yet. Janet was pleased I was excited but doubtful she had done anything that exciting. The hot tub continues to work its magic on Janet’s stretchability and she looks forward to those relaxing sessions now. If we could get her that interested in the Connect gym we’d be set. Janet is performing well there but still argues against going each time. The staff and I keep emphasizing the benefits she is seeing from all her hard work and I think we’re gaining ground there. Should be easy to do as Janet is getting measurably better on the bike, the standing frame and the parallel bars almost daily. On Monday she set a personal best riding the bike for thirty minutes and traveling .82 miles. Janet is tolerating the standing frame for forty minutes to an hour now and it’s so weird having her standing tall I can’t sit beside her when she’s in the frame as I’m not used to looking up at her.

Meal prep and household type chores are something Janet strangely enjoys. She eagerly puts her laundry away and helps me make her bed. I still have to prompt her to look at the labels on her drawers to see where something goes and she needs a lot of guidance with kitchen duties but her willingness to try is cool and she really does concentrate fully when given a task.

Janet and I went for a nice long walk Monday evening to explore the neighborhood. We saw a nice development with some single level homes for sale but decided we don’t want to live in Lake Country. I tested Janet’s vision while we were out by asking her to read signs and find certain objects. She can see things for sure, her challenge is in sorting out what she’s looking at and zeroing in on the key thing. It was a fun walk and Janet seemed to enjoy the challenge of finding things to look at, kind of like eye spy.

The following is the first in what could be a weekly feature of the blog. This interview was shot this afternoon and its purpose is to allow you all to see and hear Janet for yourselves instead of just reading my words. We hope you enjoy.

Praying for continued improvement and acceptance by Janet in how well she’s doing.

Reluctant Progress. Janet grins and bears it. #TSJ

Tez had Janet in the standing frame again this morning and by all accounts it went well. Mary Lou did her usual Speech session with Janet as well and after some negotiating with Jess, Janet agreed to have a nap. She says she didn’t sleep but Jess checked on her an hour in and she was snoring away. By the time I arrived Janet was watching TV in the living room and seeming quite happy. She had trouble telling me about her day but with some prompting got the major points out. She did know she was watching Dr. Oz and he was talking about Aspirin. High five. I told her some good news from Dr. McCann’s office that I got this morning. I had given a report on the effect of the Botox and also mentioned I had not noticed any negative reaction to Janet being on a lesser dose of Methylphenidate for the last three weeks so he agreed to discontinue it all together. One less pill for Janet to swallow!

I took Janet out in the sun for a walk before our first order of business, the weekly Skype chat with Leslie. We walked around part of the neighborhood we have not explored yet and agreed we don’t want to live there. It would have been nice to stay outside to Skype but the wifi connection was too slow so we had to go to Janet’s room. Before we could get back out Garrett offered to take Janet to the gym to ride the bike. I was disappointed that Janet fought the invitation the way she did. I felt she did really well yesterday and that she seemed very comfortable on the bike. As the argument progressed it became quite apparent that Janet is really lacking confidence in doing the gym activities. She feels she should be better than she is and doesn’t see the progress she’s making. The great thing about the bike is it shows you exactly how you are performing and once Janet reluctantly agreed to go, Garrett and I were able to show her the numbers to watch. She made a steady twelve rpm for twenty two minutes today. We didn’t measure yesterday’s session but today’s seemed better and Janet was reasonably happy afterwards. I don’t want her to focus too much on the numbers as some days will be better than others, today was better but I got a sense she was being obedient rather than fully participatory. We’ll see how it goes tomorrow.

The bike ride definitely gave Janet a boost of energy and appetite. After dinner we went for a walk to Beasley Park and watched the last twenty minutes of a soccer game. It was really nice sitting in the sun doing that but it was hard to see as the grandstand is on the east side of the fields and at that time of day the sun is shining right in your face. Still lots better than watching soccer in the North Vancouver rain like we used to.

Janet wanted to read when we got back to Connect and we got a good chunk of Slow Dance done. Almost finished. My cousin Sharon, shared a video with us that features a really cool bike that I could use with Janet. More importantly the video is a beautiful story of love. Janet and I both teared up watching it. Your turn.

Praying for a solid night’s rest and an energetic tomorrow.

She’s a Real Stand Up Kind of Girl. A day of successes for Janet. #TSJ

Today was one of those days where everything seemed to go right for Janet. It started this morning in the gym with Tez, Joel and Lorne.

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That’s Lorne with Janet as she stands in the standing frame for the first time at Connect. Tez was pleasantly surprised at how well Janet can stand and weight bear through her legs. She is really improving in that area thanks to her hard work in the gym and the Botox. Tez even had Janet standing on her own, balancing herself with her butt up against the edge of the table mat. I’m really impressed by that one and will credit the work in the pool with helping her to figure out how to do that. Lorne took Janet for a walk outside in the standing frame so she wouldn’t get bored as Tez wanted her in there for twenty minutes or so. I remember seeing Fred and Chris use this apparatus and hoping Janet would get a chance one day. I didn’t expect it to be this soon.

I had a good chat with Lorne, Jess, Tez, Brian and Joel when I arrived this afternoon and everyone seemed excited for Janet’s achievements with Tez wanting her to use the bike this evening as he believes she’s ready for that. He recommends keeping the pool sessions going and trying to get Janet into our hot tub as much as possible. They are two different types of therapy and Janet will benefit from both. To simplify our schedule I will see if we can change the Thursdays to Fridays so we can just go home from the pool. Jess said she put Janet to bed amidst much protest over an hour earlier so I quietly entered her room to see how she was and this is how I found her.

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Not exactly Houdieno but if she starts believing she can walk, watch out!

Janet was in a very good mood as she gave me her account of the day. She still downplays her achievements but not to the degree she has in the past. Tez stopped by to show me how well she can stand using a slightly different technique than I was using. It gives more responsiblity to Janet and Tez suggests doing it as an exercise a few times a day.

We made it outside for happy hour and a Skype chat with Mary Gaga. Garrett then suggested Janet go to the gym to try the bike before dinner and Janet accepted with no argument at all. There is a Keek of her first pedals, @larrylatour, and as you can see in this pic she was quite comfortable on the bike and had a really good first go at it.

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Ideally she’d be able to pedal without the arm assist but for this session and probably the next while she will need it. I reminded her it’s not that different from the elliptical machine she used to use but she says she doesn’t remember that. As well as she did on the bike Janet didn’t seem all that impressed with herself but hopefully her attitude will improve with some more successes.

After her bike ride Janet BBQ’d herself a couple pieces of steak for dinner and gobbled them up along with her first corn on the cob in over a year. She loved it of course. We then had a little Skype chat with Andrew before reading some Slow Dance while Janet lounged in her wheelchair. I turned the lights out on a very content Janet tonight and pray she has a good night’s sleep and is ready for an active day tomorrow.