baclofen

Easy as 1,2,3. Janet returns to domestic duties and more. #TSJ

Another progressive week for Janet with some interesting trends starting to show.

On Thursday Janet was basking in the sun waiting for me with a big smile and a self initiated kiss. When I asked her why she was waiting for me she said “now we can have some fun”. Nice to know that she still thinks that way sometimes as most of the time she complains about all the things I make her do. To start our fun we went for a nice long walk. Janet is improving with her directions and did well at naming things we saw along the way. We really took our time and I tried to keep her talking and observing as much as possible. As we returned to Connect we noticed the ice cream stand was very busy and I suggested we go there after dinner. No surprise, that got a very positive response. There was a CFL football game on TV as we waited for dinner and to prove her cognitive gains Janet said she was cheering for Saskatchewan over Toronto. That’s my girl. Not that I really care, as real football doesn’t start until September but it was still fun to hear her pick against her hometown. Janet had a good Shuttle routine and shocked me by choosing to do the Standing Frame before going for ice cream. There was a real risk of missing the ice cream by doing this but I had to honor her choice. We made it to the stand in time and Janet enjoyed her mint chocolate chip while spilling only one little drop.

On Friday, Janet was waiting on the patio again but was a little upset that I wasn’t there sooner. It was only 1:30 but I guess she’d had a fairly quiet day so far and was aware she would be going home with me so was looking forward to that. We made some shopping stops along the way, one of which resulted in Janet getting some clip-on sunglasses. She’d been refusing to wear her regular ones as she can’t see well without her prescription glasses so her optometrist suggested the clip-ons and I think they work great. Janet doesn’t mind wearing them so if nothing else her eyes get some protection now. By the time we got home it was too late for a nap so Janet just had a little quiet time lay down then got ready to go for dinner with a friend of ours from Nanaimo. The Rotten Grape turned out to be an excellent choice as we were able to sit outside in the sun listening to the Music in the Park happening right across the street. We even had a visit from Janet’s former PT, Tom. It was really nice to enjoy good food and conversation with Wendy and Janet really impressed us by sitting on a backless stool the entire time.

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After a good hot tub at home and while getting ready for bed Janet called Nash, Calamity. That was the name of one of our cats that died a few years ago. Janet realized that almost as soon as she said it but was upset that she didn’t realize Calamity had died. Took her a good fifteen minutes to get over it.

We were up pretty late Friday so Saturday started off late with a nice Skype chat with Mary/Gaga. I then put Janet to work as we cleaned up the spare room in preparation for Laurel & Raj 2.0. Janet had fun with lots of laughs as we found things we hadn’t seen in a long time, one thing in particular I hope you’ll here a lot more of in the near future. Stay tuned. The more I get Janet to help with domestic stuff the more I realize how much she wants to contribute. She really goes at a task with determination and concentration and is visibly pleased when its done, usually asking if there’s anything else to do. That is, as long as she feels she can do it but occasionally now she’ll take my suggestion that she can do it and run with it. Previously my suggestion was met with self doubt. I’m seeing a little less of that now. Almost as impressive as her domestic enthusiasm was Janet’s choice for lunch Saturday. Grilled cheese with BACON! Totally her idea, never seen her eat it before and did she ever eat it. That gave her enough energy to do a little house hunting with me followed by a stop at the grocery store. Wanting to press on she insisted we go to church which turned out to be a good call on her part. She was able to have nice visits with quite a few people there and the service was really good too. Our evening was quiet and Janet wound down nicely to wear she was sleeping by 10:30.

Start time Sunday was a little more normal but Janet maybe should’ve stayed in bed a little longer as for once she picked the wrong puppy on Pick a Puppy. She’s now three for four and was a little upset about being wrong. We went for a rather long walk to a local store for some dinner supplies and Janet asked to take a shorter route home so I guess it was a little long. Our thirty degree pool water was too cold for Janet so after a relaxing hot tub I laid her down for a good nap. We had another hot tub after dinner then Janet passed on ice cream in favor of going to bed. Lights out at 9:45 seemed strange but sleep is good.

Janet’s sleep must’ve been good as she woke Monday very chipper and chatty. She wasn’t really looking forward to going to the rehab pool as her mind was very much on the impending arrival of family for Laurel & Raj 2.0. Janet is having a bit of a tough time realizing this is not a full on wedding and she worries about her appearance and abilities. I think once people are in town and things start happening she’ll be fine. Her swimming was decent with her most notable accomplishment being able to swim to the wall, grab on and “stand up” all by herself. Really nice smiles after doing so too. On our way home we did a little more house hunting and Janet asked afterwards why we didn’t look at the upstairs. It didn’t have one. At least she’s thinking. Needing to do more cleaning of the house I decided to test Janet’s vacuuming abilities. She was never very fond of this chore but loved it this time. She can only do the hardwood and furniture as she can’t maneuver herself around on the carpet. Here’s a link to a short video of Janet in action,

.She was also a huge help in dusting some shelves and nick nacs and again I could see the satisfaction she was getting from being able to help. Relaxing in the sun with a Fresca Janet explained she was afraid she’d miss something if she wasn’t coming home until Thursday. She also came out with the comment that “it’ll be awkward having Chris here”. Chris is Janet’s first husband and their parting was not amicable but I assured her he would be polite and so should she. Janet hasn’t talked about the battles she went through in that former life since she got sick but I hope the encounter on her home turf on a happy occasion leads to truly forgetting all that nonsense and moving on. It will be fun to see. Janet and I had a lot of fun eating dinner outside on an absolutely gorgeous evening and it was really difficult to gather the motivation to head back to Connect.

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By the time we got there Janet was pretty much done and after a little bedtime reading it was lights out at 9:30.

After a busy Tuesday morning I met Janet and Brian at KGH for her appointment with Dr. McCann. The main goal for this one was another round of Botox, this time, both hamstrings and a little in her right arm finger flexors. The previous treatment was a huge success and we are looking forward to similar results this time. The decision to treat the finger flexors came as a result of Janet clenching her right hand less and its hoped the Botox will enable even more relaxation of that hand. Dr. McCann agreed to refer Janet to the hand clinic at KGH where they can make a brace she can wear during the day to further promote a more relaxed position for her right hand. The next round of Botox will be in three months or so using Dr. McCann’s new machine that will allow him to treat Janet’s right subscapularis in hopes of increasing range of motion for her right shoulder. Another big plus that came out of this appointment was the discontinuation of Baclofen. Janet had a terrible reaction to an increased dosage a few weeks ago and the amount she was still on was too low to do any good so now its one less drug for Janet. Yay! Brian followed us home as best he could and took a look around the house to assess what he’d do if we were determined to stay here. We ended up agreeing it doesn’t make much sense then we enjoyed a nice cold beverage in the sun. Janet later commented that its nice having Brian around, “he’s easy to talk to”. Not surprisingly Janet enjoyed herself in our pool with the water being a ridiculous 32 degrees. She still wanted to hot tub afterwards too so I was able to get a good stretch and start working that Botox into her. Quite the busy day so far and Janet easily agreed to have a short nap. I woke her an hour later and positioned her so she could watch for Laurel’s arrival. I really wish I’d recorded that moment as it was absolutely priceless when Janet started giggling and smiling and laughingly saying ” there’s someone here! It’s her, it’s Les, Na, Laurel!” I thought she was going to cry but she just kept on giggling and waving like a star struck little kid. Awesome. The excitement continued as we went back to Connect for a Shuttle and Standing Frame session. Janet was very cooperative I think because Laurel was there and did a good job on both apparatus. There was very little pouting and once given the goal time for getting down from the Standing Frame did a great job using her watch to tell what time it was and how much time she had left. That was a pleasant surprise as she was bang on with fifteen and five minutes remaining. That watch has been a very effective tool so far. Well done Jess! While in the Standing Frame Janet demonstrated more cognitive abilities in correctly identifying Sally Field in a movie that was on TV. Impressive.

Wednesday morning the focus was on Janet’s regular therapy routine. She went to the gym for a thorough workout then had Speech with Mary Lou. Laurel and Heather met up with their mom in the afternoon and hung out until bedtime, making sure she got in another gym session. When I arrived with Andrew late into the evening Janet was talking very loud and clear, was obviously excited to see her kids and I think is going to have a really fun time this weekend.

One of the more noticeable improvements Janet has made over the last few days has been in the quantity of liquid she will drink at one time. Historically her drinks have been very tiny sips. Now they are not near gulps but I’ve seen her do what would qualify as a shot more than a few times. She still needs to be reminded a lot to keep drinking but there is a definite increase in the speed with which she can down a beverage. The volume of her voice has gotten louder and she is definitely more “with it” than she was even a couple of weeks ago. Praying for continued healing, an increase in her water intake, for the Botox to have maximum effect and for everyone to enjoy themselves at Laurel and Raj 2.0.

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Freedom 55. Janet gets hungover before her party. #TSJ

Another roller coaster week for Janet that started out really strong then took a huge dip in the middle with a nice bounce back to finish it off.

Last Thursday was a stellar day for Janet with strong workouts in the gym, good results from her Speech Therapy and a display of heightened awareness that had me excited about the progress she’s making. Curtis had her in the gym late in the morning and he generally puts Janet through a very thorough routine so when he says she did well, it means something. I saw proof of how well Janet was doing that night when she allowed me to take her onto The Shuttle. That dreaded machine from the past that used to produce nothing but tears and anger. This time Janet was totally focused on doing the best she could and her performance was record breaking for me and a really good demonstration as to how much stronger she’s gotten. Instead of blowing off my compliments she seemed to somewhat accept them this time. Janet followed up her Shuttle performance with a nice hour long session in the Standing Frame. One reason she was able to hang in there so long I believe was, she was totally engaged in a TV show called Criminal Minds. There was something about it that drew her in even to the point of knowing “they are trying to catch the Anthrax guys”. Brilliant. Another example of Janet’s increased awareness was demonstrated during a first time Skype chat with her friend from years ago, Dianne and her daughter Whitney. I could see the memory lights flashing in Janet’s eyes as the conversation progressed and there were lots of smiles and laughter on both sides of the screen.

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So ended a real “up” part of the roller coaster ride as Friday started a big “down” turn. After weeks of chasing faxes around from office to office it was finally arranged to increase the dosage of Baclofen for Janet in hopes of alleviating some of the spasticity in her legs. There was to be a gradual increase to triple what she’s been on for about nine months now starting with a doubling of the dose Friday morning. Janet’s day started out quiet with some sit to stand exercises and a little Speech with Alana. I picked Janet up and took her swimming at KGH and her own evaluation of the sessions was “ok, but not as good as last time”. Pretty accurate as she seemed tired. We stopped for a few groceries on the way home and Janet was a big help in the store, enjoying picking out vegetables etc. By the time we got home it seemed too late for a nap so I agreed to let her try and push through thinking we could have an early night. As we started making pizzas it became quite clear she wasn’t going to make it. She couldn’t figure out for the life of her how to chop a mushroom, something she’s done routinely in the past. Off to bed she went and we tried again an hour later. The nap refreshed her enough to enjoy building her pizza and eating it outside in the sun. We watched The Voice afterwards and Janet spontaneously started singing to The Swon Brothers rendition of Danny’s Song. Cam called and had a nice chat with his mom then the roller coaster started downhill real fast. Seemingly out of nowhere Janet lost all that awareness that was so prevelant the last couple of days. The only way for me to describe it is she got stupid. There were lots of tears of frustration, lots of unrecognizable speech and it was very difficult for me to maintain any level of patience. Janet insisted on a hot tub before bed and I was happy to oblige her that and it relaxed her enough she could settle into bed and fall asleep just before ten. She woke up on her own around 9:30 Saturday and seemed ok. She managed a good breakfast but instead of the usual morning fog lifting as she ate, it seemed to grow thicker. Her speech deteriorated, her ability to drink from her glass dissappeared to where she couldn’t even suck water through a straw. It was too late to call off a scheduled visit from her friend Janet F. and when she arrived Janet perked up a little and enjoyed the visit but was very quiet. I took her out for a walk afterwards hoping the sun would energize her. We watched a little soccer at the neighbourhood school but Janet couldn’t “see” the teams we were watching despite their bright yellow and blue jerseys. Home we went and I was starting to get a little concerned. Janet ate a sandwich and happily went for a nap which ended up lasting six hours. During that time I read about every possible cause for her rapid decline and settled on an intolerance for Baclofen. That’s the only thing that changed recently so that had to be it. When Janet woke and only wanted a piece of toast for dinner I started wondering if there was anything else going on but since she had been eating well up until then and was toileting fine I decided to let her try and sleep it off some more. Sunday morning started comparatively well as Janet seemed more coherent and ate a good breakfast. Her speech was better but there was still a lot of gibberish there. She made it until 12:30 before crashing until four when I made her get up to have some water and hopefully some dinner. Her drinking ability had improved and she ate well at dinner. Overall I was less concerned even though she was nowhere near regular Janet. She was following commands well and eating and drinking and not showing any signs of serious illness. Janet was in bed by 8:30 and sleeping before I finished our goodnight prayer. Monday morning I phoned nurse Jen at Connect and she agreed to let me hold Janet’s morning dose of Baclofen. I also talked to Dr. McCann’s office and he later agreed to drop her prescription back to the level it had been at prior to the weekend. The roller coaster started an uphill climb almost immediately.

After an almost three hour nap mid day Monday we headed off to see Janet’s GP who was pretty confident Janet’s “down” weekend was the result of the Baclofen increase. We aren’t calling this an overdose like the Dilantin episode as this time the drug doesn’t seem to agree with Janet as opposed to Janet having too much of it in her. By Monday evening Janet knew my name again and was starting to argue about going to the gym so I knew things were OK. She ate a little dinner, tolerated thirty minutes in the Standing Frame and knew when the TV show we were watching ended that it was time for her to get down. She was smiley and giggly as I put her to bed and I was very relieved.

For the first time since this all started I made a phone call to Janet. Tuesday was her birthday so I called when I knew she’d be eating breakfast to wish her happy birthday and also to assure myself she was alright. Her laughter and strong voice were all I needed to know this was going to be a good day. I arrived at Connect in time to observe some of Janet’s singing with John session and noticed there was more laughter than singing going on but that is very theraputic itself.


Janet agreed to have a nap after John left so she could be ready for all the birthday Skype sessions coming her way later in the day. We probably did a few too many back to back but it was funny to hear Janet wish everyone else a happy birthday as they said that to her. Janet and I enjoyed a nice dinner at a local Italian restaurant including a glass of wine and we gave her the night off from any gym related activities.

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She was happy to watch a very entertaining basketball game before going to bed.

Today Janet was back to her regular self if not a little more than that. I gave her time to nap and when I finally went into her room she put on a huge smile and we chatted on her bed for half an hour with her talking really well and laughing lots too. As she was getting up, Brian stopped by to see some of her pole transfers and mentioned how impressed he was by her standing abilities. Janet has made a lot of progress in the last few weeks. From there she helped Curtis prep dinner and when it was ready devoured her portion along with an apple and a generous slice of a very delicious cheesecake Jess made for her birthday. Even after that large meal Janet managed a good session on The Shuttle and elected to use the Standing Frame rather than do some stretching. We used a different frame tonight which proved to be not as good as the usual one but it was worth a try. Janet has an appointment with Dr. Miller (neuropsychologist) early in the morning so I tried to encourage her to go to bed around 8:30 but she waved me off “saying” she’s watching the hockey game. I gave her a few more minutes and thankfully Chicago scored to end the game and off we went.

I know the roller coaster is not likely to end but I hope for Janet’s sake we don’t go on a ride like this past week again. I’d much prefer a steady climb upwards. I asked Janet to finish off the video tour of Connect but she wasn’t interested and instead wanted to say thanks to everyone for the birthday wishes. After a great many takes this is the best we could get and I think it shows pretty clearly how hard Janet is trying. I’m praying that strong effort continues and that she is rewarded with ever increasing abilities.