It’s been a fairly busy time since our last post. We have started attending a weekly seminar called Living With Stroke put on by the Heart and Stroke Foundation and lead by a former nurse and a stroke survivor. Each week focuses on a different aspect of post stroke life and attendees share their experiences with the group. So far it’s been quite positive and Janet has been willing to share when appropriate and is enjoying the conversation. This week’s session was on Physio Therapy and I thought Janet would have been all over that topic but I had to prod her to say something a couple times. The last two years of her life have been focused on physio so maybe she’s fed up talking about it. Understandable. One of the other attendees lives right around the corner from us so we’ve been giving her a ride during which she has shared a lot of her story and that has intrigued Janet and I think made her feel a little better about herself. It’s always good to be reminded that she’s not the only one out there.
That seminar is every Tuesday morning and Janet usually manages a trip to H2O every Monday, Wednesday and Friday morning plus has SheLife Wednesday evenings so you can see how her weeks are pretty full. The outings to H2O are becoming more challenging to make happen. Partly because of the gloomy weather we’ve been having here and partly because it’s a whole lot of effort to get out the door then get changed then get wet and do it all again in reverse with Janet not really seeing the benefit and not having any fun unless there are some well behaved little kids in the pool with us. I’m seeing improvements in her walking, her left foot now comes more forward each step than previous. Janet doesn’t see that however and is complaining more and more about going. I’ve shortened the workout to just walking in the river as I think that has the biggest benefit to her followed by a stretch in the hot tub. Janet is now walking on her own both with and against the current as long as it’s not flowing too quickly.
Working out in the pool has its benefits for sure but the fun factor seems to have worn off and Janet is noticeably missing the cardio workout she got on the bike at Connect. We happened across a decent exercise bike for the house the other day and Janet has willingly ridden it a few times now. She can watch TV or listen to a podcast or music while she’s riding and best of all she doesn’t have to leave the house to do it. We plan on consulting with Alyssa at H2O next week and may shift the workout priority to the bike and reduce the visits to H2O. I don’t think its fair to keep pushing Janet to do stuff she doesn’t want to do.
Pedalling with Ellen and J Lo.
Socially Janet is doing well getting reacquainted with the ladies at SheLife and we were blessed with an invitation to dinner at our neighbour’s house tonight. Janet contributed well to the conversation and is showing more signs of an improving memory. She bettered me today when we were talking with Debra at Connect. Debra has a tough time talking and was struggling to answer my question as to when her move out date is. In frustration she drew something in the air that Janet immediately recognized as the number 15 and knew Debra meant she’s going home February 15th. The air writing didn’t register with me at all and Janet is still laughing about that tonight.
Janet had her first official workout at H2O today. Alyssa had taken her through a routine yesterday to familiarize Janet with the equipment and see what she could do on each piece. The program’s focus is the same as Connect’s with an emphasis on building leg strength and the goal of improving Janet’s walking.
There is no Shuttle machine at H2O so that work will be done on two leg press machines that will be hard for Janet to use as they both pretty much require two legs to work them and Janet’s right leg doesn’t work that way. She’ll give it a try holding out hope that by helping the left leg a little bit the right one might kick into gear more.
The recumbent bike at H2O is way cooler than the one at Connect except for the pedals. This is a recurring problem as every other bike we’ve seen has pedals too small to strap Janet’s right foot onto. Alyssa came up with the idea of putting a band around Janet’s legs to prevent the right one from flailing outward like it wants to. This enables Janet to push harder with her right leg therefore keeping it on the pedal. So far so good and Janet likes the idea of being able to watch tv while riding. Now if there was only anything on worth watching.
Another new piece of equip for Janet surprisingly is a treadmill. H2O has one with a couple of arm supports that let Janet concentrate on taking nice long steps without worrying about balance. It’s a brilliant idea that I think will really improve the mechanics of Janet’s walking.
One other surprise from our visits to H2O so far is that Janet hasn’t uttered the words terrible or awful once. She also accepted the challenge of taking the stairs today instead of the elevator and did great both up and down.
The at home routine is improving as Janet is going to bed at Connect type hours and getting up early enough to have productive mornings. There has been only minor complaining about helping out and no thought of using her cane. On Monday we did a Superstore run and Janet pushed the buggy around the entire store with minimal help. She was exhausted afterwards, it’s a big store, but I could tell she felt good about being able to do it. During her nighttime recap of the day she listed that in a very positive way. I like being able to incorporate therapy into daily activities.
Praying that Janet continues to adjust positively to being at home.
Janet admitted to being grumpy at Connect again this morning. Apparently Jess had her doing something in the gym that Janet didn’t like so she wasn’t making much of an effort. Jess ended the session and Janet went to her room. She took advantage of the free time though to call her dad. They haven’t talked for quite a while so it was nice Janet took the initiative to do that. She said the conversation went well and she’ll try and call more often.
“Napping” when I got to her room, Janet gave me the run down of her day in a somewhat muddled manner. At the end of it one thing was clear, she hadn’t ridden the bike, so off we went. It was fun to watch Janet ride again and with the music playing she set a personal best for distance at a harder level than she normally rides at. She even said, “I’m getting better aren’t I”. Yes Janet you are. Her walking was good this evening as well, I did a little pulling with her and found her able to go at a good pace with very little pulling from me. More proof of improvement and Janet acknowledged that too. Another positive on the physical side came to light later on when Janet informed me that she was successful in picking something up off the floor with Jess this morning. She wasn’t sure what she picked up or how she did it when she couldn’t yesterday but was happy with the win.
Rude Janet made a brief appearance at dinner today and may have shown whats getting her into trouble during the day. Karl and Curtis worked hard making some pretty good fish and chips from scratch and Janet, before even trying it, loudly complained that it was “terrible” and “yucky”. I could see the disappointment on Curtis’s face and was a little embarrassed myself. Janet showed no remorse until long after when we were able to talk on our own. She eventually tried a couple bites then ate my dinner and I ate hers. Later on she promised to try really hard not to get into trouble tomorrow including being careful when and how she says things to people. There is a silver lining to this in that Janet used to just sit passively and take whatever came her way. Now she’s asserting herself more which is great, she just needs to watch the timing and the wording.
Games night was alright tonight but Janet is glad she only has a couple more to go to. We spent some time figuring out who to vote for in the municipal election and Janet agreed with me all the way, as she should. Kidding.
Praying for Janet to have a good night of rest and a positive, confident and cooperative Wednesday.
All on her own, Janet called me earlier than usual this morning to say she’d just worked a little with Tez. She thinks its very important to tell me things like that right away so I know she’s being productive. Somewhat true.
By the time I got to Connect this afternoon Janet was surprisingly still sleeping and continued to for almost an hour before waking refreshed and ready for action. Her day had been busy enough to not have had time for a bike ride so off we went to get that in before dinner. Janet complained a little once she got pedalling but by the end she was quite proud of how well she’d done. Her walking to the gym and back was excellent as it was all the rest of the night too.
Everyone else had finished dinner by the time we got to the kitchen which was OK because it allowed us to dine outside in the sun instead of inside in the air conditioning. Janet was not thrilled with the prospect of attending Games Night, I think mostly because she knew she had to walk there and back. Tez has decreed to the staff that they are to have Janet walk everywhere possible now, using the wheelchair as little as possible. That’s something I’ve been practicing for a while now so Janet shouldn’t notice much of a difference. Once Games Night got rolling Janet jumped right in and fully participated and ended the evening on a real high by being “it” for a game of Where What Who. The person who is it thinks of something to be in a certain location around the world and the rest of the group asks questions leading to their guessing what you are thinking. Usually people guess something or someone far away, Janet thought she could fool everyone by choosing herself and she did until Big Country somehow guessed correctly to everyones laughter. Janet was quite happy with herself and called that the highlight of her day. I thought the highlight should have been when I told her we got tickets to the Seahawks home opener but she put that third, behind her game playing and me coming to visit her. Awww.
Praying for a good night of sleep for Janet and continued healing.
Today was very relaxing for Janet and I as we continue to prepare for Ottawa. There was no problem waking up at 9am Eastern Time although it was a little weird to actually be up before others in the neighbourhood. I let Janet use her wheelchair a lot this morning so she could get around and help with things easier and also so I could get my bike ride in. She happily listened to a Stuart McLean story while I was gone and gave me a good recap of it when I got back.
In trying to stay on Eastern Time, dinner was real early for us tonight but one big benefit was our patio table was still soaked in sunshine when we were ready to eat and that made the meal even more enjoyable. The fun continued after as we relaxed in the sun. I can’t describe how positive that is for Janet, she literally soaks up the warmth and is fuelled by it. I sneak shot this video as she sang along to The Swon Brothers version of Danny’s Song. It may not mean much to all of you but if you watch closely, especially at the end where Janet closes her eyes and drinks in the sun, you may get a sense of why I love her so much.
Is the tide of doubt changing? Janet actually said she did well walking in the sling this morning and she repeated that descriptor tonight. Her confidence in walking is for sure getting better and she is more willing to free walk now albeit for relatively short distances. The pain in her right foot apparently has shifted from above her arch to the area where the leg becomes the foot and is only present when she puts weight on it. I asked Chelsea to note it in Janet’s chart in hopes that Tez can be made aware and talk to Janet about it.
As I walked into Janet’s room this afternoon she only woke long enough to say she’d had a big sleep then went right back to sleep again for a good twenty minutes. Her day had been pretty busy so I let her call most of the shots tonight. After setting the table for dinner we spent a nice time in the sun on the patio and Janet was upset with herself for not being out in the sun earlier. There was no hesitation in going for a bike ride after dinner and Janet set another record riding for 3.6 miles. I snuck her into a higher level of resistance too and she didn’t even notice. High five!
Walking with me this evening was good but not her best. She complained regularly about being in pain while hanging onto me but when free walking she was quiet and did very well. I think that as long as that pain goes away Janet could free walk forty or fifty feet very soon.
Janet chose to just hang out in her room most of the evening doing some reading, coin rolling and chatting. Her reading seems to be improving and could be a lot better if she’d remember to turn her head all the way to the right in order to see everything on the page or screen. When I read to her in bed tonight she actually stayed awake for the whole hour and gave some good feedback on what we read.
Praying for immediate healing of the pain in Janet’s right foot and for a productive Tuesday.
As part of the development of a homecoming plan for Janet, Interior Health is required to determine her eligibility for home care services. Part of that process is a series of minor tests that Janet was first given in hospital almost two years ago. Actually, she wasn’t really given them then as she was unable to respond in any coherent way the first time, which was July 2012, then in September 2012 she scored super low and wasn’t able to complete the test. Today was much different. Nurse Jill met us at Connect this morning and spent an hour chatting and conducting the tests. Janet did very well and I wasn’t at all surprised but for sure pleased. The next step will likely involve a lot of paperwork so I’ll wait for instructions from the ABI Coordinator before spending too much time on it.
Since I was spending the day at Connect I brought Janet her favourite wrap from Urban Fare and we enjoyed a lively lunch with a few other residents. Janet then walked from the kitchen to her bathroom, a little slower than previous but still pretty good and she made really good turns into her room and especially the bathroom as that one was better than ninety degrees but she nailed it. There was an attempt at a nap next but my best guess says Janet was out for maybe twenty minutes. I can’t fault her as it was quite noisy out in the hallway and the adjoining room for a large part of the time. When she got up she bravely walked to the bathroom and back to the bed. I’m trying to get her to walk every short distance opportunity now and also to try a few steps unassisted. Janet remains scared of that idea.
There are two groups that Connect works with to provide some outdoor adventure to residents and today Janet and I filled out registration forms for both. One will allow her to try sailing and the other does small hikes, bike rides and kayaking, all with special equipment that makes it possible for Janet to do. She of course is not excited about any of it but I’m hoping to convince her to try once the weather gets better.
Chelsea had everyone build their own pizzas for dinner tonight so Janet was right at home with that. She did say later that it wasn’t as good as we make at home but it was OK. The energy it gave her was certainly good as she set a personal best on the bike tonight. I think it’s now time to make the ride a little harder and I’ll have to do that without her knowing as she still says it’s hard. We decided to read a little early tonight so Janet could have her dessert in hopes she would sleep better. It may have worked as she was snoring at 9:20! Praying for a long night of healing sleep and a productive tomorrow.
Back to “work/school” for Janet today. She calls Connect by both names depending on her mood. Negative is work, positive is school. When I called at lunchtime today she was very positive and sounded confident. Her gym session was “OK” as opposed to the more frequent “terrible” and her voice just had a real nice tone to it that wasn’t diminished when I got to Connect later in the day. Janet excitedly told me she did some walking and it was “fine” but the nap thing didn’t work at all. She was pretty alert so we got on with the most important activity of the day. Her new Mother of the Bride dress arrived and she couldn’t wait to try it on. It took me a while to figure out how to get all the material over her head but we managed without much stress and here is the result.
Saying Yes to the Dress.
To make sure all was well with the dress I asked Chelsea for her opinion and she raved about it. Later we showed Tiffany who also thought Janet looked great in it. Janet agrees but still needs reassurance from her peers (other women) before completely accepting any compliments.
Janet’s mood shifted a little downward after dinner as she realized she had some work to do. There was a bright moment before that though as she was able to have a nice Skype chat with Andrew. Janet excitedly reported on her SheLife speech and carried a good conversation. I think that chat improved her mood enough to where she actually enjoyed her bike ride. She sang a lot during it and didn’t complain once about the hard parts. Janet wasn’t up for any walking tonight so we did some Speech type work by filling out some customer feedback forms that Connect has going around. It was an opportunity for Janet to think about a few staff members and how they differ in their job strengths and to create comments on each of them as to how she feels they work for her. Good brain exercise.
To close out the night we got Janet onto the Tilt Table again and she was not pleased about it. Chelsea and I didn’t have her set up exactly like she was the first time and I think it was too late for Janet to get comfortable after we corrected her position. It was still a good stretch and weight bearing time.
As Janet got into bed tonight she ended up laying on her back with her right arm stretched out at her side. I’ve never seen that before and am not sure how she got it there but it is cool that she can do that with no pain.
Praying for a productive Tuesday.
Today started off great with Janet waking at a decent hour after a good sleep and easily taking a bath before breakfast. She was bright and alert and seemed ready for a good day. I left her and Heather for a little bit to attend to an appointment I had and when I returned they were sharing the couch watching Ellen. I asked Janet if she needed to go to the bathroom and got what I felt was a confident no. Minutes later it was like the flood in Noah and I was not in the least bit impressed. I got quite angry with Janet and I know she didn’t intentionally do this but she’s been doing so well and this is such a sudden and inconsistent change that I get really mad when it happens and take it out on her. We had a good talk with nurse Jen at Connect this afternoon and have an appointment with Janet’s doctor Wednesday and I think with an understanding of what’s happening I will be better able to handle it. There are two likely scenarios, one physiological and treatable the other neurological and not treatable. Pray it’s the former please.
In spite of my grumpiness the rest of the day was pretty good. Janet really enjoyed her time with Heather and is very grateful for her taking the time to come all this way to visit. Janet is very aware that the next time she sees her will be at her wedding and “that’s a big deal”. After we dropped Heather at the airport we went back to Connect and worked on Janet’s speech for SheLife. It’s been hard for me not to put words in her mouth and Janet has done a great job of constructing what she wants to say. We wrote it up on her iPad and found she was having a lot of trouble reading it as the page was too busy so I transferred it to a presentation app with one or two sentences on each slide that Janet can see clearly, read then tap to see the next slide. Should work.
After an early and quiet dinner Janet agreed to a bike ride. I wasn’t expecting much from her as she had no nap at all today but she put in a very solid performance with no complaining. Her next choice was more mine than hers and that was a walk. Again, I didn’t expect much but started her out at the kitchen table with the goal of making it to her bed and I was willing to let her bail at the Den. No need, as forty five minutes later she plunked herself down on her bed. She was exhausted but somewhat happy with what she’d done, I certainly was.
There wasn’t much to the rest of the evening other than some well deserved chocolate and once in bed, Janet was sleeping ten minutes later. Praying for a complete and immediate resolution to Janet’s incontinence issue, a deep and healing sleep tonight and a great Tuesday.
Jess and Janet were waiting outside Dr. Miller’s office when I got to KGH this morning. Janet was very bright and chatty and that continued throughout the appointment. Dr. Miller can’t seem to stop himself from telling Janet how much she has progressed overall but more importantly how her improvement increases even from the time between each visit. Janet accepted most of the feedback with only the occasional “I don’t believe it” and the odd “I’m glad you think so”. Dr. Miller is not just feeding lines to Janet and is truly amazed at where she’s gotten to especially in light of how far post injury she is. He mentioned, I think only half joking, that “we should do a case study on you”. There is a theory out there that people only recover for three to six months after a brain injury such as this and Janet has proven that theory false as most of her cognitive gains are being made 15 to 21 months later. It wouldn’t surprise me if Janet gets an opportunity to share her story to the medical community somehow soon.
Following the Dr. Miller session Janet wheeled herself over to the physio department to say hi to Moira whom we haven’t seen since Janet stopped using the Rehab Pool. Surprisingly, Moira spent half an hour catching up with Janet and even had her demonstrate her walking abilities. The visit was full of praise and encouragement for Janet but she started to fade near the end as throughout the chat with Moira, there was a pretty steady stream of people saying hi to Janet as they passed by and she found that to be a little overwhelming. After lunch at home she reluctantly went for a nap from which I had to wake her in time for her next appointment.
Janet’s AFO has been causing a small abrasion on her ankle bone so we went to ask Birgit if she would remedy that today and she did. We were back at Connect in time for a bike ride which a now tired Janet did fairly well on. We spoke to Tez prior to hitting the gym and he said not to focus too much on the one legged pedalling and let Janet do her thing to get some cardio benefit and insert the one legged method at the beginning and end of each ride. There is no strength building benefit to pedalling with one leg but it is crucial for teaching the brain to communicate with her right leg and get it working better. Tez worked a lot with Janet last week and said she can put way more weight through her right leg than she’s allowing and through repetition we need to get her using it more. Janet complained of being too tired at the start of her ride and still did 2.5 miles in thirty minutes. I was glad she powered through that so I didn’t have her try the one legged thing. Next time.
The Botox is having an amazing effect on Janet’s right arm. I can’t remember the last time I was able to get her arm in this position with no pain. Very cool.
After dinner Janet dutifully got into the Standing Frame while watching Olympic highlights then replied to a couple of emails. She, for the first time, was able to use the speech function of Gmail without assistance from me and produced a couple of authentic Janet emails. She even stayed awake for a good forty five minutes while I read to her in bed saying, “the book is getting better, I like it”. Today was a great day for Janet with a lot of reasons to feel better about herself.
Praying that Janet’s confidence in herself increases and she continues to prove the theorists wrong.