stripper pole

Stop and Go. A back and forth week for Janet. #TSJ

Early on in this journey I referred to what Janet and the rest of us were going through as a roller coaster. That analogy still applies but thankfully the peaks and valleys aren’t quite as dramatic or long lasting as they used to be and Janet’s rate of ascent is steady.

Her most obvious gains continue to be seen in the gym and during physical activities in general. Janet’s reluctance to go to the gym continues but her resistance to it is less dramatic and I’m hoping she’s starting to notice the positive results herself. I’m with Janet mostly for her bike riding sessions and can report that each day she sets a personal best for distance travelled. Today she made it .71 miles. Her rides are thirty minutes long with the focus on building speed in the hope of being able to add more resistance at some point as that would mean a significant increase in her leg strength. Janet’s tolerance for the standing frame isn’t improving much from what I’ve seen with those sessions maxing out at forty five minutes to an hour.

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There is tremendous value to it though and we saw a great example of that over the last couple of days. Monday night I was unable to get the frame set up optimally for Janet so she had a very short session. When I got her into bed and stretched her legs out as I always do they were very stiff. Tuesday night with Curtis’s help we got things set up nicely and Janet had a good long session standing nice and straight. Her goodnight leg stretch was a hundred percent better and I made sure she knew it. Since the installation of the stripper pole in her room Jess has been working with Janet on transferring from bed to wheelchair and vice versa using the pole.

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As Janet gains strength she’s getting better and better at the transfers. I still do a pivot transfer with her but no longer have to carry her weight as much as I used to and she can let herself down into her chair using the arm rest. My arms and back are liking this improvement. The team continues to work with Janet on sit to stands at the parallel bars and I’m noticing nice improvements in her ability to get up out of her wheelchair because of that work. All this exercise is paying off for sure and to prove it, Janet for the first time I know of rolled all the way over from one side of her bed to the other today! This may not sound like much but when you consider all the muscles you need to use to accomplish a move like that its very impressive for Janet. It wasn’t long ago that laying on her tummy would start her crying and she pulled off today’s maneuver with relative ease. High five!

Personal bests are also being reached in the pool with Janet now able to swim one length on her tummy. We haven’t yet figured out how to get her to breath so she can swim longer but its pretty exciting she can go that long holding her breath and propelling herself that far. Her right leg continues to mostly do its own thing in the pool and is impeding her progress for sure. I’m looking at ways to help her regain control of it but don’t see anything obvious. Janet’s attitude towards the swimming sessions remains positive but she is much more excited about hot tubbing, even asking a couple of times this past weekend if we could go. I feel truly blessed to have the ability to provide that for Janet as it is so therapeutic in so many ways. I’ve noticed and increase in the range of motion for her right shoulder and arm as well as her wrist and attribute that to the hot tub. Walking in the pool remains a challenge due to the uncooperative right leg but we practice each session and Janet is still willing to work hard at it. This past Monday after a good walking session I wanted her to swim on her back a little but she couldn’t. Seems she totally forgot how and it wasn’t till the next session that she figured it out again. Weird.

So far I’ve told you lots of positive things so let’s do some negatives now. Janet’s chronic constipation got to her again this past weekend and we ended up with a nice long visit to the ER because if it. The doctor was unable to get anything to move that night so put Janet back on the Resotran that had just run out a couple days prior. It works great and Janet is for now going regularly but the problem is not solved and we continue to wait for this illusive “urgent colonoscopy”. Restoran is not a drug you want to be on long term as your body can become dependent on it and you may not regain control yourself ever and that would not be cool. Pray for the colonoscopy and a visit to the GI unit soon. KGH treated us well that night although slow and I found it a little surprising to be driving home in the daylight at 4:15am. This past Tuesday we finally had our meeting with Dr. Adams the neurologist. He ordered an EEG for Janet just prior to our appointment with him and it was really cool to see how that is done. Janet had twenty nine electrodes on her head as they measured the various electrical discharges from her brain. Dr. Adams confirmed there are some epileptic discharges occurring so he is keeping her on the Dilantin probably forever. That’s not the news I was hoping for but at least now we know and we also know there is no other drug out there obviously better than Dilantin. My concerns have diminished as Janet is making cognitive gains and the side effects have diminished since she got into a therapeutic range with that drug. Dr. Adams described Janet as high risk for another seizure but is confident the Dilantin is working as she’s been seizure free for five months now. He does not see a need for Janet to visit or have an EEG on a regular basis but made himself available on an as needed basis. I liked him and was impressed he remembered us from five months ago.

Back to the fun stuff. On Friday we enjoyed a nice lunch visit with Jim and Nancy Church, long time friends from North Vancouver, always good for a laugh and intelligent conversation.

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We also had a voice call with my youngest daughter Brittney who lives in Edmonton and I was impressed with Janet’s conversational skills during that call. She was loud and articulate and seemed genuinely pleased to hear from Brittney. On Saturday we realized that only two of the dresses in Janet’s closet fit her and neither is wedding appropriate so Laurel has agreed to shop around for something Janet can wear to her and Raj’s “wedding” here in July. Janet is excited to finally be a part of her daughter’s nuptials.

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Sunday started late after spending the night at KGH then we had to try and get some Resotran for Janet and Jen from Connect was a huge help with that. While we were out there I put Janet through her paces on the bike and standing frame and she did very well at both considering how tired she was. Back at home she really wanted to finish watching Les Miserables after it was interrupted to go to the ER, so we did and Janet was surprisingly tuned in to it. She even caught a line that I missed. Impressive. We both were in tears by the end of course but thoroughly enjoyed it. Monday was a great outside day. We had lunch outside after swimming then went for a really nice walk that evening at Connect. Janet was able to play I Spy much better than the last time we tried and really enjoyed the warm evening. She went to bed very giggly in her new bed that night. Tuesday was Skype day with calls to Mary Gaga, Andrew and a special one to Heather on her birthday. Janet impressed me by explaining to Heather how sorry she was for not getting her a present yet and that she is getting one soon. She did that all on her own and with great conviction. Nice.

The week ahead is setting up to be fun and busy. I’ve switched Janet’s swimming from Friday to Thursday so we can go to Nanaimo for the weekend, then there is the usual Monday swimming followed by a trip to the dentist. I think I’ll have a very tired Janet on my hands by Monday evening. Praying for continued physical healing and cognitive gains and thanking Jesus for all we’ve been blessed with.

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Sleepover #TSJ

My day with Janet began with a good workout in the gym. At least the first part was good with lots of good stretching. When it came time to pole dance Janet started getting all emotional and lacking confidence again. I talked her into trying to stand three times and each time she gave a good effort and by the end of the third try I think there was a glimmer of belief in her eyes. I got her over to the Shuttle after that and she strongly did thirty reps with one band of tension. No emotion. Yet. She managed four reps at two bands then broke down completely. The loudest cries I’ve heard from her. All based I believe on a lack of confidence. One band is really quite easy for her and two requires some effort but not what should be an overwhelming amount. Next time we’ll try fewer reps with one band and see if that helps and maybe we’ll start on the Shuttle so she’s not as tired.

In chatting with Christa on the way out of the gym I told her I was taking Janet home for the rest of the day. She asked why not overnight. I didn’t think we were allowed to do that yet but Lorne confirmed we are so as I write this at 11:08 pm, Janet is sleeping in our bed right beside me. First time in over eight months!

We arrived home to an overexcited Nash then had a nice Skype chat with Heather and Allan. An unauthorized lunch followed as we watched a little tv before Skypeing Leslie. Janet was showing signs of tiring so with no pressure to do anything or be anywhere she agreed to lay down for a bit. That helped a lot as she had a nice burst of energy for the evening and ate two servings of a delicious manicotti that Kiko made for us. Instead of desert Janet elected to have chips and pop while we watched some Aussie Open tennis. I saw a lot of old Janet tonight as she very stubbornly stayed up until just after ten. She helped me in the kitchen before we went to bed and I saw some signs of confusion as she tried putting some things away. I can’t blame it on the drugs though as I think she was like this before and I’m just hoping for more improvement.

Janet is very happy to be home tonight and actually found it a little surprising that we were going to sleep in the same bed. Looking forward to waking up with her in the morning and praying for rest and healing. Thanking Jesus for my beautiful wife. Even as she snores.

Yes and No #TSJ

So now my name is Roger according to Janet. Not sure how I got that one but the only Roger I know I like so that’s cool. Christa mentioned to me that Janet refused lunch so after our little what’s my name chat I asked her if she wanted something to eat. She proceeded to eat a whole can of beans! I’m sure she’ll be able to eat more exciting things this time next week as her swallow X-ray has been booked for Thursday. Thanks again Connie! I met with Janet’s eye doctor this morning and he agreed to do an exam with Janet on the 29th. The value of the exam will be to give her therapists an accurate account of Janet’s field of vision. It is unlikely that whatever deficiencies she has can be corrected or healed but she may gain functionality through rehab once her exact condition is known.

After her late lunch I took Janet up to get weighed. She lost a little bit this week and we had a good talk with the staff and agreed to up her meal portions a little and offer her snacks in between meals as well. One contributing factor to her loss could be the increased activity in the gym and in general. Standing takes a lot of energy and her workouts have been rather intense so I think she’s likely burning more calories now than before.

Janet struggled a little with putting away her laundry today but did a great job of helping me make the bed. Before heading to the gym Janet took a pee break and for the first time did a standing transfer from the wheelchair to the toilet. She had to stand for quite a while as I haven’t perfected my technique for a one handed pant removal or replacement. She was very strong and worked hard to stay up long enough for me. We took Christa and Suzanne to the gym with us as they had not been trained on Janet’s routine yet. Janet was very patient and cooperative as the three of us stretched her out. Janet did very well at the stripper pole today, needing only a slight boost to get started then getting up pretty good herself after that. She still gets very emotional doing this but today she did not pee, hopefully because she went before going to the gym. Janet managed one set of thirty on the Shuttle with one band of tension and when I suggested thirty more with two bands like she did yesterday she very sternly told me no way. She had been through a lot by that then with no nap time so I relented and said we’d do more in the morning.

Dinner was more of Suzanne’s stew and we only shared the table with Chris tonight. I don’t ask the other residents what their deal is and some have offered little bits of their story but this was the first time Chris said anything other than he was in an accident. Turns out it was a motocross accident almost nine years ago. He was in a coma for seven months and has not walked until just a couple of weeks ago. The smile on his face as he told us that was really something to see and I’m glad Janet heard it first hand as that is a true story of hope. It made an impact on Janet as I included Chris in our goodnight prayer she asked me about his story again. I gave her a recap and she seemed genuinely touched and impressed.

When I asked Janet if this was a good day she said “yes and no”. She couldn’t defend her no response at all and agreed to all my yes suggestions so the final answer was a big smiley yes. Praying for rest and healing tonight and recovery and learning tomorrow.

Fresca #TSJ

Dr. Miller visited Janet first thing this morning then came into the gym to say hi when I was working with Janet there after breakfast. He said he was truly impressed with how she has improved and stated “this is the best I’ve ever seen her”. He was a little unsure of what to expect having heard about the seizures but agreed that she has bounced back really well. I asked him about the Dilatin and its’ side effects. He understands my concern and advised me to keep an eye on Janet over the next couple of weeks to see if there are any signs of excess confusion or other cognitive impairments. There are other drugs that could be used as anticonvulsants but they are not necessarily better and all drugs have side effects. He cautioned that side effects don’t appear in everyone so just watch for now and see what happens.

Our workout went quite well with Janet getting herself on her tummy this time, allowing for a decent hamstring stretch. I’m not seeing any real change in the severity of the tone in her legs but her right arm and shoulder seem to be improving. Despite her reluctance I had her use the stripper pole again and she performed her best standing yet. She got much straighter than yesterday and was able to let go of the pole and hold my shoulder so that more weight was on her legs. She still stands on her tippy toes but I’m confident that with time and more weight bearing through her legs her ankles will loosen up. The range is still there so we just need for those muscles to know when to turn off. I plan on demonstrating Janet standing to Tez as soon as possible and asking him to get her “walking” in the parallel bars soon.

With the workout done we rushed off for an appointment to view a condo downtown. I wanted to see what 1500 square feet looks and feels like to live in. It felt a little small but I think its doable with the right floor plan and the unit we saw certainly did not have the right plan at all. The realtor will keep an eye out for us.

At home it was time for a real food lunch then some NFL playoff football while we waited for two different people to stop by to look at Cam’s car he is trying to sell. I think we had success by the end of the day so come Monday there may be one less vehicle in our driveway. I used our waiting time to update Janet’s nail polish to Seahawks blue in readiness for the big game tomorrow. I figured she deserved a reward for sitting still so long while I did her nails so I offered her a pop. As soon as I mentioned we have Fresca, she smiled and rather mischievously said “that would be really nice”. Finally a cold drink she likes!. For dinner we enjoyed an unauthorized chicken dish that Suzanne had kindly dropped off for us then we rushed off to church so we can watch the Seahawks game tomorrow as it starts at the ridiculous time of 10am. Not sure if that’s the right thing to do but Janet did enjoy the service and I commented to her that unlike before her illness, she is liking the music parts of church more than the talking parts. She smiled and shrugged her shoulders.

On our return to Connect I had Janet put away her stuff, she is starting to figure out where some things go and she is very good at taking her shoes off now. Once in bed we read some of Slow Dance after I reassured her we had not finished it already. Janet took about ten minutes to ask me a really important question that she “needs to know the answer now” but never made it clear and she eventually forgot the whole thing. It started out with “how do we get to Washington to…” and evolved into “what’s the difference between Strawberry one and…” I’m open to suggestions if anyone has any. By the time I said goodnight she was closing her eyes and had a smile on her face that makes it really hard for me to leave.

Praying for rest and healing, a fun day tomorrow, and a Seahawks win.

No Doubt #TSJ

Janet’s day started after a really good night’s sleep. Lorne said the night staff checked Janet every hour and she was snoring each time. She ate a good breakfast then went to the gym for a stretch on her right arm and shoulder. Some Speech work was next and Christi reported Janet did really well. She refused lunch however and I arrived to find her scrolling through channels on the TV in the living room. She told me she had just had an interview and was listening to the ref. She was watching sports highlights so there could have been an interview with a ref I guess.

I took Janet to the gym for some leg stretching and found her to be quite tensed up compared to yesterday so I took it reasonably easy on her. Wanting to get a good hamstring stretch though, I asked her to try and lay on her tummy. She gave it a really good effort but said it hurt too much. I then asked her if she wanted to try standing. She shook her head and got all emotional saying she couldn’t stand. I reminded her how well she did yesterday kneeling and that she had stood before. She eventually agreed to try, so over to the stripper pole we went. The first attempt she even admitted was sloppy and I took the blame for not positioning her or myself correctly. The next two times were bang on as Janet stood carrying her own weight for about ten seconds each time and getting her butt clear of the table mat by a good eight to ten inches with me lightly resting my hand on her back to keep her from falling backwards. Very impressive, best I’ve seen, and she was really happy too. I told her not to doubt herself and that I believe she will walk again one day and that she just has to keep trying. She smiled and nodded her head.

We had an hour before dinner and I wanted Janet to rest a little as we planned on going to the UBCO women’s basketball game tonight. I got her to lay down on her bed with me so I could read to her for a bit and that led to about twenty minutes of eyes closed time. She ate a large bowl of soup for dinner then off we went to the game.

When we arrived at the gym I initially parked her in her wheelchair at one end of the court and I sat in the first row of seats right beside her. She looked at me very puzzled and asked where her seat was. I never thought of putting her into a seat but with some help from a guy sitting close by I gave it a try. Janet was much happier, then I realized we were at the wrong end of the court. Janet’s field of vision is weak on the right side and most of the court was on the right from where we were. Suzanne joined us and at the first quarter break we wheeled down to the other end and got settled there with a really good view. Janet’s first question from the new seats was, “where’s Laurel?” I had to explain that Laurel doesn’t play anymore and she is old and married now. She smiled and nodded her head. At the half I offered Janet some pizza but she said no. I got a slice anyways teasing her that this was her chance to cheat and after a couple of bites she laughed and agreed to have her own piece.

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UBCO lost a close and entertaining game to Calgary and we really enjoyed watching Angela White play. She is from North Vancouver ( I won’t mention she’s from Handsworth) and her mom taught some of our girls at Argyle and her dad coached with me in the Steve Nash League there. I had a nice chat with him and her mom came down to say hi and as soon as I said her name to Janet she held out her hand for a shake. I think she really does remember Shawn.

Back at Connect it was past bedtime but Janet had hung in there really well and agreed she had a good day. Praying for a restful and healing night and a fun day of Learning tomorrow.