roller coaster

Janet, A Success Story. April 3. #TSJ

Today was a bit of a roller coaster for Janet, starting with a down hill bit as Jess took her to the lab for another test of her Dilantin levels. They are still low so her doctor has ordered an increase back to the dosage she was on before. There is no obvious reason for the fluctuation and hopefully we can get it stabilized soon so Janet doesn’t have to get stabbed so often. Still going downhill as far as Janet is concerned, she went to the gym for a bike ride. The upper part of her right leg has been sore for a couple days according to Janet so the workouts have been light. She equates it with the stretching session she had earlier in the week and she may be right. If not, it might be off to the doctor, Janet’s favourite thing to do.

I think lunch started a bit of an uphill ride for Janet as she seems to be enjoying everyone’s company around the table and does like the new lady, Angie. When I spoke to Janet on the phone I got a little feeling I was interrupting something she was enjoying and she’d rather be doing that. First time for everything I guess.

The downhill part started again when I arrived and Janet was ringing her pendant to get up from a nap she never had. She was in good spirits and very chatty but you could tell she hadn’t slept and needed to. It wasn’t going to happen though so up she got and I had her walk to the bathroom and back. No real change there although she is using her right leg less now because of the soreness. To avoid more walking Janet asked to help Angie get dinner ready and she eagerly made a salad for everyone. This was the first dinner in a long time where the table was full and Janet enjoyed the banter. Things were looking up.

Facing the prospect of a long walk after dinner Janet elected to practice some hand writing first. Mary Lou has given her a lined workbook to practice individual letters in and Janet can do most, reasonably well. I have no idea how to teach her proper technique so I just point out where she’s consistently good and where she changed the appearance of the same letter and for now that seems fine. Writing seemed to ease her fears of going for a walk and after a little pep talk from Chelsea she set out for the living room and made it a little more than two thirds the way there, over fifty feet, before insisting she was “exhausted”. I believe she could have made it as I saw saw continued improvement in her steps but the drive just wasn’t there tonight.

The roller coaster went downhill fast after that and Janet was sleeping within minutes of hitting the pillow before nine thirty. She couldn’t even get her prayers out she crashed so fast. I’m praying that tonight she enjoys a deep and healing sleep so that tomorrow is a day of nothing but ups.

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.

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.

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.