There’s a new post at brainaneurysm.com
A new post at brainaneurysmsurvivor.com
I think you will be prompted to follow the blog on the new site now. Please do. Let me know if you are not prompted. Thanks!
There is a new post at brainaneurysmsurvivor.com
The site is still under construction and your feedback is welcome. What would you like to see over there?
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.
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.
There’s certainly been no lack of activity for Janet lately. The weather broke a little late last week and we were able to drive Courtney down to the coast where she left for Honduras yesterday after spending a few days with Ashley. We had dinner with them and Mike, Brittney and Ethan Thursday night then met my mom at Park Royal Friday along with Courtney and Ashley for a really nice visit and lunch.
This was the first legitimate road trip without the wheelchair for Janet! She did very very well walking everywhere we went, climbing two large flights of stairs at Stefanos and walking for about three blocks twice at Park Royal. The hotel we stayed at was easy for Janet to get around and I never once felt like we missed the wheelchair. She traveled well again and I look forward to our next adventure.
Around the house Janet has been helping out a lot and getting more confident in her abilities. We set some goals for ourselves and that has helped Janet overcome her resistance to a few things. Her big goal for 2015 is to walk without holding onto anything and since setting the goal I only have to gently remind her to let go now. She seems very willing to try for short distances and I hope she can get there but her strength and mechanics have to improve a lot to give her a chance. Janet would also like to be able to vacuum the house, “so you don’t have to”, her words, honest. We’ve yet to try this one but I think it’s achievable as are two others, walk out the front door to the street on her own and get herself ready for bed completely unassisted. The front door one will have to wait for the snow to be gone but the ready for bed one should be reached in a couple weeks. Janet shocked me the other night by managing to undo her bra by herself. That’s always been what I considered impossible but I should know better I guess.
The pool exercises are going well but I miss the workout Janet got on the bike before. I think the cardio aspect of that was a real benefit to her so we are keeping our eye out for a bike to have at home. There just isn’t time for another or an extended trip to H2O. Janet is often reluctant to go but pleased with herself after each visit and can see that she’s improving.
The calendar keeps filling and Janet seems happy with how things are going with the exception of the weather. Hawaii anyone?
IN JANET’S WORDS:
The drive down was fine and there was lots of fog on the road near where we were driving to. It was a bit scary. I managed to climb two flights of stairs at the restaurant we went for dinner at. It was hard work. The next day we met Judy at Park Royal and walked a lot there too which was not fun but the lunch with everybody was. I’m doing better with my exercises at the place I go to. The water was moving really fast this week and that is hard to walk in. Today we went to the place I used to go to and did a little sing along with Deb. I think she had fun and that is what matters. I was glad I wasn’t staying there and it was nice to visit people.
For the first time in thirty five years Kelowna schools were closed for a Snow Day on Monday. According to Janet it was a great day as she didn’t have to go to H2O as it was too nasty out there. She did go today though and agreed to file this video report for you.
Happy New Year everybody! We hope you all had a merry Christmas. Ours was spent in sunny California with family doing mostly untraditional Christmas things. Since this is a new year and the start of a new season for Janet and I, we are going to change up this blog a little. I would like Janet to contribute more to the content so, each time she will be invited to either write, dictate or do a video report on the highlights of recent events. Either way the narrative will be more from her voice than mine. For this one, Janet is going to dictate her account of our Christmas vacation, you’ll see that at the bottom of the page.
Our flight to San Diego went through Seattle and since Janet uses a wheelchair in airports we received VIP treatment the whole way. We were met at Sea-Tac by a young man named Jama, who personally escorted us through Customs, helped us claim and re check our bags, got us through Security then took us on three train rides to our connecting flight. If it wasn’t for him knowing exactly where to go and getting us to the front of each line, we wouldn’t have made our connection. Big props to Alaska Airlines and a company called Bags for providing exemplary service. Janet travelled very well, even managing the five steps up and down for the little plane from Kelowna. She made only one trip to the bathroom on the flight to San Diego and managed most of it herself. Another couple of flights and as long as the ride is smooth she’ll be able to toilet solo.
The focus of the trip was to spend time with Andrew, Laurel, Raj, Heather, Allan, Cam and Gina as much as possible. The first five nights were spent at a rented house that turned out to be a poor choice for Janet. It was a little small, cold and dark with too many different floor types and a bathroom that was configured such that she needed assistance every time she went. The shower was not usable for her either so by the time we got to our hotel for the last four nights even Janet never argued about taking a shower. We tried not to schedule too many activities in favour of building each day as it came. Janet had maybe three naps the entire trip and was a willing participant for most things each day.
The big thing on everyone’s list was the San Diego Zoo so that’s where we spent Christmas Day. Janet loved the monkeys the most and even braved the skyride over the park. The wheelchair we rented for the trip was adequate and we could not have done without it. We were limited a little as far as start times for each day as Janet takes a fair bit of time getting dressed, fed and toileted and I stress a little about taking Janet out before she’s had a good chance at the bathroom. We missed a trip to La Jolla with the kids one morning based on that but ended up walking around Balboa Park for a few hours which was really nice. Everywhere we went on this trip we saw people with dogs and Janet couldn’t get over it. There was a Dog Wash close to our house and we saw many dogs on restaurant patios as well. If it wasn’t for the flight, Nash could have joined us.
Sunshine was abundant but the temperatures colder than anticipated. Janet never got into shorts and usually had a light sweater on too. She enjoyed the sunshine at the beaches but the breeze was cool enough to keep her from basking in the sun as she likes to. She was scared to walk on the sand but actually did very well when she tried and if it wasn’t for a one meter drop that split the beach in two Janet could’ve made it to the water in Carlsbad. Not that it was warm enough to swim in but it would’ve been fun to have her dip her toes into. Next time.
Janet ate well during the trip and there was lots to eat. That seemed to be the focus a lot of the days and provided some of the more memorable moments too. We all had a fun dinner with Cam’s fiancé, Gina’s, parents one night as they braved a lot of traffic to drive from Costa Mesa to meet us. Janet seemed happy with every meal and especially liked the sushi and fish tacos.
All in all it was a fun way to spend Christmas and Janet and I hope to do it again with some modifications. Here’s her report on it all. Until next time,
In Janet’s words;
We went to the zoo and it was fun, although long. I spent a lot of time with Andrew and I don’t usually get to. It was good. I had lots of time to spend with my kids. The weather was good except for the end when it got cold. I didn’t need my bathing suit. The food was good, it was fresh and I had shrimp tacos that were really good. At the house we stayed at we hung out on the patio one night with a fire and it was fun even though it was cold. Balboa Park was pretty and it was big and it was nice to be out in the sun. We stayed to watch the sunset one time and it was pretty. It was fun being with my kids the whole time.
Seems like forever since I’ve been here and I must admit the break has been nice. It was getting hard to find things to talk about on a daily basis for sure and now that Janet being at home is “normal” I have to dig deep for a weekly talking point. I think “normal” will be it for this one.
We are definitely into a routine around the house, not the most productive routine but one that has Janet responsible for some basic duties and helping out with others. She is improving with her abilities in the kitchen and has taken easily to building her own sandwich for lunch, all the steps, unassisted, with the exception of needing help to open the mustard sometimes. Janet is happy to put things away and do light duty cleaning but is reluctant to try the big things like vacuuming. Soon, I hope.
The exercise routine is ok and I hope will get better in the new year. Janet is doing really well in the pool, already graduating to walking forwards and backwards without the pool noodle. Today I took her into the River Run for the first time and she handled it better than I thought she would. The Botox has completely worn off now and I notice Janet losing some control of her right leg even out of the water. We didn’t make it all the way around the river as it got too deep for Janet at one point and she was not wanting to swim. Next time. Her attitude about going to H2O hasn’t improved much but once there she does good things and comes away telling herself she did good so hopefully with some more time and recognizable improvements for her she’ll be more willing to get out the door.
The best part of Janet’s new normal is the relaxing evenings she’s been enjoying. We’ve watched movies, The Voice and of course our beloved Seahawks. Janet looks forward to those couple of hours to be entertained and is far more engaged in what she’s watching than ever before. I will still pause and explain things to her periodically only now she actually gets what I explain and I love her reaction at the end of a good movie or game. It’s totally appropriate to what happened and often includes her patented fist pump.
The fist was pumping tonight after the Christmas Eve service at Trinity. Janet really really enjoyed it, more than any event I’ve taken her to lately minus the Seahawks game. The music was great and the drama portion easy for her to understand and see. We went tonight as we are off to San Diego for eight days tomorrow. Janet is super excited about this trip and the very un-normal Christmas this will be. Stay tuned for pics and other things.
We wish all of you a very Merry Christmas and thank you for your love and support. Peace.
Yesterday was the big day for Janet’s first venture into the pool at H2O and she was not looking forward to it at all. Her memories of pools are completely associated with cold and having to “work”. I promised her this time that if its not warm or fun she wouldn’t have to go again. Alyssa reinforced the fun aspect as soon as she saw Janet and thankfully there had yet to be any hint of cold.
The focus of pool work this time is to increase Janet’s ability to walk so the entire session was spent in the wave/kiddie pool, waves off of course and the water nice and warm. Janet entered without a wetsuit by walking down a ramp then out to about chest depth. Alyssa led her through a series of exercises that had Janet walking forwards, backwards and sideways, concluding with Janet stepping up and down with a pool noodle under her foot to provide some resistance. Janet was last in a pool in August and was unable to keep her right foot on the bottom even for a few seconds. Yesterday she was pushing that noodle down strong and never for a moment had any trouble getting her right foot down. Even Alyssa was impressed and happily took Janet over to the hot tub for some stretching to finish things off.
Things went so well in the pool that Alyssa recommended switching that to the primary activity for Janet now. Water therapy worked well before and she believes it can again. Janet is up for it and is happy to not have the leg presses or treadmill in her life anymore. Those weren’t fun or very effective. Janet will continue to ride the bike now and then.
The pool experience was a very pleasant surprise and set Janet up nicely for exercise being fun again. She enjoyed the water, was warm enough and really likes Alyssa. Praying for the fun to continue.
Its still too early to nail down any sort of routine for Janet living at home full time. Each week brings different appointments and responsibilities so in that regard Janet has been kept busy in various ways. Since the craziness of her homecoming weekend there hasn’t been a day without something significant going on.
I’ve backed off on taking Janet to H2O as often as I’d like as there is already some resistance developing and I want Janet to want to go. It’s not always fun working out but I hope to get her to the point where she sees the benefit and is willing to go without hesitation. The times we have been have taught us it takes a lot longer for her to go through every element than we thought. If Janet does everything on her list, it’s a good two and half hour outing, which is fine, we just have to figure out how to fit things into the rest of the day.
A friend of ours recently asked if we would meet with the mother of a young lady in KGH who is going through a similar situation that Janet did. Janet was all over the opportunity to share and encourage and has twice been to the young lady’s room to read to her or just hang out. It has been very cool to watch Janet in that hospital room knowing she was there two and a half years ago. She’s handling it very well and wants to go regularly, each time we are there also provides an encounter with someone who cared for Janet back then. She has received lots of “wow, look at you” and “you look great” and “I’m so happy to see you”. So much so that I think she’s actually starting to believe those compliments. Janet laughs each time we meet someone as it happens all over the hospital and she repeatedly comments that “we can’t go anywhere without being recognized”. Celeb.
Continuing in the spirit of sharing and encouraging, Janet went back to Connect today to sing with Debra. She dreaded the drive out there even though she was only visiting. Too many bad memories still. When she arrived though, it was all smiles. We spent a half hour with Debra singing Christmas songs and Debra would like to do it again next week and Janet is happy about that. Singing was an amazing tool for Janet and I can see the benefits to Debra already as she smiled and laughed a lot.
A major goal for Janet being at home is to be as independent as possible and she took a huge step in that direction today. I’ve left her home alone a few times so far for various lengths of time and with different projects to attempt. Tonight, at her request, she was to make chocolate haystacks while I worked at the church for a few hours. Never before have I even considered leaving Janet to cook anything unattended but she was really wanting to try this, so after dinner, a reading of the recipe and a walkthrough of the procedures, I left. To fill out the time I would be away Janet chose to watch a movie then do her baking. I fully expected a phone call anytime the whole time I was away and was tempted to call her myself but didn’t. When I got home three hours later Janet was standing at the sink with a huge grin on her face washing the pot she’d used for the haystacks. The house smelled like chocolate and a nice collection of tasty treats were cooling on the island.
She did it! She followed the recipe, except for the coconut, operated the cooktop and cleaned up after herself, all by herself! Amazing! So happy!
With all that said, things are going well at home so far. Our Christmas vacation to San Diego is approaching and that will become the focus next week I’m sure. Alyssa and I hope to get Janet in the pool Friday as well as find a way to make exercise more fun for her. Praying for Janet’s confidence to keep growing.