It has been brought to my attention that I appear to have fallen off the face of the Earth. I’m still here, just dealing one day at a time. I’ve been keeping busy and letting time slip by between posts. Sure beats being bored!
My walking has continued to improve, slowly but surely. I no longer use the wheelchair in my apartment, and very little at work. I still have to take the chair to get to and from work and around town, but it’s nice to get out of it occasionally. I also still need the crutches for walking outside, as we found that my right leg, especially the knee, is not as strong yet as we would like. I have been working on control of my right hand. it still doesn’t do much, but it is a lot calmer and less spastic than before. The biggest problem continues to be fatigue, and I have been working with my doctors to create a plan to save as much energy as possible. I still get scolded frequently for overdoing, but I am trying to learn. I spent one day a few weeks ago in the ER with what turned out to be severe exhaustion. Since I sure don’t want to go back there again, I’ve been trying a little harder to rest!
I have been able this summer to participate in the Footloose disabled sailing program, which I love doing. I am participating this coming weekend in an overnight sail and camping trip. I’m a little nervous about energy levels, but am excited all the same. I am so appreciative of the people who have made it possible to “leave my disability at the dock,” as they say and take a break away from everything for a couple of hours. As with every chronic illness or ordeal, there are days I wish I could just take one day to be completely healed and go back to being a stroke patient the next day. While that is a stretch, I am finally getting to a point where I can occasionally participate in activities without every tough being about stroke and how I can work around the residual effects.
I was also able to visit my family a few weeks ago to show off my new skills. It was so great to be more self sufficient for this trip! I also met with some people I had known from college and graduate school to catch up and relive some memories. I have been working hard to learn a whole new field of bioinformatics at work, and have begun to put out feelers about where I could go from here. I still have a little to go as far as my training, but it’s never too early to think ahead. When I first began my postdoc, I had intended to try out yet another part of the country for the next stage of my career. However, since the stroke I have realized how nice it would be to have family support nearby and have begun to consider positions closer to my hometown. Not that my friends, coworkers and church family haven’t been great through everything, but family is just somehow different.
I hope everyone is having a great summer, and thanks for checking in! I say this every time, but I’ll try to find time to update more frequently.
The last time I posted, I was having major trouble with fatigue, to the point where I was having trouble taking care of myself. My doctors and therapists were beginning to get very worried, and i was concerned I was going to have to lose my job and move back to Arkansas to live with my parents. Mom flew out to see what she could do to help, and we began a long series of doctors appointments to find out what was wrong. My primary care physician ran a full panel of blood tests which all came back normal. My neurologist was more concerned with the headaches I was having due to the fatigue, but had no real idea what was causing me to be so tired. The emotional lability had swung out of control, so that I was crying almost every night and laughing almost every time I spoke, so we knew something had to be taken care of.
Before we could pin down what was going on, Mom and I were sitting around my apartment one Saturday afternoon nearly a month ago to get some work done between appointments and errands. Mom was having trouble opening a computer file and I was attempting to talk her through it. Finally, I decided to just show her what to do myself. I sat down beside her and reached for the computer, only to find her gaping at me. I told her I was just going to help her with her problem, very confused as to why she appeared flabbergasted. She stared at me and said, “Do you realize you just walked over here?” I had (and have) no memory of it since I wasn’t paying attention, but I had walked the 4-5 steps between my chair and the couch with no walker, no crutches or anything. Of course, we forgot all about her computer problem and I immediately tried walking again. I found that I could walk fairly steadily for up to about 10 steps without support. I got incredibly excited and began calling everyone I could think of to share the exciting news. Just a couple of months before, I had been told that it would be years before I could walk unsupported, if it happened at all. Even a couple of shaky steps was a huge and exciting piece of progress.
Mom attended my next physical therapy session and we shared the story with my therapist. As an evaluation, she strapped me into a harness for safety and put me on a treadmill to see what I could do. The continuing motion of the treadmill required me to keep my feet moving, and something suddenly clicked. I knew where to put my feet to keep me upright, and which muscles to move to walk without the wobbliness of before. The therapists all gathered around to see, and my therapist (Vicki) asked who had been praying for me. We told her that just about everyone we knew had been, and she said it must have worked, because this wasn’t a leap forward that they see very often. It was a rewarding day for them and me, and there were more than a few tears involved. After the treadmill, we kept the harness on and walked down the hallway where we had been practicing with crutches. That went well enough that Vicki unhooked the harness and let me walk on my own, with her hand on the gait belt strapped around my waist as a precaution.Even more, we replaced the ankle brace with a simple aircast generally used for sprained ankles. Since I could walk without the crutches, we set them aside and focused on learning a more natural gait. I was very stiff, and was more shuffling than walking.
Over the past few weeks, we have really worked at my walking. Mom has extended her stay so that she can help me get the intense work in that the therapists recommend but my insurance won’t cover in PT. We have attempted longer and more complicated walks. A few days ago, I walked with Mom to the Arby’s next door to my complex for a snack. The walk there (shown in the picture above) was pretty good. The way back was very difficult and not so pretty, but I made it. I was a little frustrated, as I had convinced myself that that walk would be easy and I could immediately progress to much longer distances. We have a goal to get completely free of the chair within the next month or two, but I have to remind myself there’s a way to go yet. Now we are working on natural gait (I’m still a little stiff and start limping when I get tired– the right knee still needs a little work), working on uneven surfaces (I can’t make my right ankle flex as of yet, so inclines are tricky), and balance (my balance is completely visual, so I lose my balance if I close my eyes or there is much movement near me as I’m walking). I still have a lot of work in occupational therapy as well. We are focusing on regaining use of my right hand. I have developed some gross motor fiunction, but my fingers are still largely unresponsive and the hand movements are still uncoordinated. We are also keeping and eye on my vocal cords. The ENT is hesitant to go ahead with the surgery to permanently hold the vocal cord in place since I am rewiring so much else in my brain just yet. He has recommended I have a barium swallow test to see if there is anything else that can be done to help me swallow more easily and more safely. I still have problems with dry food and thin liquids, so that is something to definitely monitor. I am really hoping it comes back on its own. since I don’t really like the idea of knives at my throat. Just seems a pretty good rule to live by.
We have also regulated my medications, which has helped dramatically. We increased the Celexa (an antidepressant which controls the emotional lability) and added ritalin as a stimulant. It took some experimenting to find the right dose of ritalin. the first dose I tried was low enough that I took that and drank a cup of coffee and still slept for 2 and a half hours. It is a little tricky to play with since it is a controlled substance (apparently some people think it’s fun to grind it up and snort it– there are definitely some crazies out there, I like to keep foreign substances out of my nose as well as knives away from my throat). We did however, find a dose and frequency that makes me actually feel like myself again. I feel alert and can even focus to read again, which I hadn’t been able to do during the worst of the fatigue. Now I just have to plan the best times to take my doses so that I have the best alertness while i am busy. Once it wears off, it is gone and i am asleep. I had worried that a stimulant would disturb my sleep at night, but it really does wear off when it should, and nothing keeps me awake after that, I hope that I will get to a point where I require fewer hours of sleep, and that is expected to happen. I may always fight some fatigue and vertigo, and my right hand may never work as it should, but I would be thrilled even if I just got walking again. I had realized that if i had either the hand or the walking, daily living would be more manageable. And I would rather have the walking– I write perfectly legibly with my left hand, so it’s less of a concern. We think part of the fatigue may have been due to the brain siphoning off energy for the massive rewiring it’s been working on. Now I am using even more energy to work on walking, so there is still a balance to work on. I also have to save time and energy to learn all the computational biology I have been learning for work. I seem to have found my niche in science, because I love the computational work. Along with meeting so many new and amazing people, that is one of the best things to have come from this experience. Every difficulty does have an up-side!
I will keep updating my progress, and I hope everyone else is having great experiences as well.
Happy very belated New Year, everyone! I spent 3 weeks in Arkansas with my family for Christmas, which was very nice. A really good thing about working by computer is that I could take it with me and stay longer. I got back the first week of January, followed a week later by an unusual amount of snow in Seattle. My wheelchair doesn’t have “offroad” capability, so I was stuck inside for a week. The best part of that was a few days to get work done and rest.
I have been able to return to physical and occupational therapy with the new year. My progress is still slowing, but I am continuing to improve. The biggest change lately is in the braces I’ve been wearing. For occupational therapy, we are trying to take advantage of the effects of the last Botox treatment to strengthen my right wrist while the tone is still relaxed. One step of this is to leave off the wrist brace that has been keeping my wrist straight during the day. I found out quickly that I had been relying on the metal bar in the brace to use the arm for a number of uses, including flipping light switches and holding items in my lap. I’ve had to make adjustments for these things, but I’m getting used to it. Hopefully by the time the Botox begins to wear off, the wrist will be strong enough to keep from turning in too much.
For my first physical therapy session back, we worked on strengthening my right knee to allow me to walk more naturally without the knee locked out. I made a few comments about wanting the brace off, and apparently it heard me. Only a few hours later, the ankle joint broke on the brace, and it took almost two weeks to get it fixed due to the snow. In the meantime, I realized that by supporting the ankle alone, I could control the knee pretty well to walk with my crutches. The therapist declared this to be a blessing in disguise and is helping me to try out using an AFO (ankle-foot orthotic) alone instead of the full-leg KAFO (knee-ankle-foot orthotic). Before we cut down the larger brace, we decided to try out an AFO to see how well it would work. The therapist had an extra brace that I have been able to borrow temporarily. As you might can see from the photo above, it is in a pink and purple snakeskin pattern. Not my usual kind of choice, but it’s been fun. It is definitely more comfortable than the whole-leg brace, and I am getting better at walking in it. I can still walk only a very short distance before the ataxia and fatigue kick in, but the therapist is confident that it will improve with time.
I have been having a difficult time with post-stroke fatigue lately. I have been learning and trying to explain to others how post-stroke fatigue is more than simply being tired. I need several more hours of sleep per night, and often an afternoon nap just to get through the day. I thought at first that I was just out of shape and needed more exercise, but more exercise just made me more exhausted. The doctors and therapists have explained that the brain is still healing and the body is burning way more energy than previously, and rest is the only treatment for that. While it should also improve with enough time, I am having to learn that I only have a finite amount of energy (money in my account, as the rehab psychologist put it) and that I have to prioritize where that amount goes. And if I happen to “overdraw my account” there are severe penalties. Namely, extreme exhaustion to the point of headaches, lightheadedness and nausea. Being tired is also the top trigger for my emotional lability, so I start crying for little to no reason. I had been concerned that I was falling into depression, but the rehab psychologist thinks it has more to do with fatigue and burnout than depression. I searched for resources about dealing with burnout after stroke or disability, but they were surprisingly all directed toward caregivers. I have found that patients also get burned out from dealing with everything, especially after a year or more of problems. And especially when having no caregiver, with family 2300 miles away. I have good friends and coworkers here, but it’s never quite the same. My mom is coming out in a few days to help me for a few weeks to get some changes made to where I can get through to finish my postdoctoral training. The main change I plan to make is to have someone come in to help me with household chores. I had a cleaning service coming in once a month for the things I can’t physically do, but I have realized that I need help more often and slightly different help than I had been getting. Hopefully this will save enough energy for me to get through work and day-to-day tasks while still saving enough for occasional social and fun outings to keep from worse burnout. I am also going to finally try the stimulant my doctors have been recommending for some time. i had been resistant to adding more medication, but it’s time to give it a try. I also think the most recent difficulty may be worsened by a medication intolerance, which I really hope is the case as it will wear off over the next few weeks.
I will try to stay up to date on new improvements and any changes that seem to help out. Hopefully something will come out that will help me and other people who might be reading this blog. Stay warm for your February!
I hope everyone has had a great Thanksgiving this year. I was blessed to be invited to dinner by a friend from church and her family, and we had a wonderful meal. I also got the chance to try out my new forearm crutches to get up the steps of their house. Exhausting, but progress!
I was concerned for a while that I wouldn’t be able to get up on the crutches this year, as I found out last week that my insurance cut off my therapy sessions as of the end of September! I am currently working through appeals and negotiations to cover the therapy I had during October thinking it would be covered, but I have decided that anything I wind up having to pay is an investment in my recovery. It’s hard to think of a much better expense. The first item on my thankful list is the savings I had stashed away for a “down payment fund” to buy a house following my postdoctoral training. While modest, it has now become my “stroke fund.” Not what I had planned for it, but I was blessed to have it. And although I can’t have anymore sessions this year, my therapist was able to arrange for the forearm crutches to get sent to my apartment rather than to the rehab department, where I was supposed to pick them up at my next session. I am really enjoying the freedom they offer over the walker, and I am actually more stable and energy efficient with them than I would have expected. I am able to go around 100 ft, which is almost twice what I could do before unassisted. I think I may have even pushed past that today with help from my friends! I will now be resting up for the next few days to recover, but it was totally worth it.
Today I am thankful for the recovery I have managed over the past year. Last Thanksgiving, I was one day out of the hospital, preparing to travel to Arkansas the next day for recuperation at my parents’ house. I had masking tape over the right lens of my glasses to manage the double vision and vertigo, and had to be lifted in and out of my wheelchair. I was unable to take care of daily activities unassisted, even getting dressed or taking a shower. This year I have new glasses with corrective prisms. I can walk short distances, and I have lived on my own since early May. I am excited to travel to Arkansas for the holidays (and a few medical appointments– not so excited about those), but am glad that it is a choice to visit rather than a complete dependence on my parents. I am thankful for a job that enables me to work through remote desktop, allowing me to spend more time with my family than I could have enjoyed otherwise.
I am also thankful for the friends who have been of such great assistance this past year. They have driven me to grocery stores and doctor appointments, invited me out for dinner and given me the moral support to get through.Yesterday a group of us had arts and crafts time to make paper hand turkeys. Who said playtime isn’t for adults? I needed help with the scissors, but did well otherwise with my left hand. Today I was welcomed into a family’s Thanksgiving tradition and made to feel very welcome, of which I am incredibly grateful.
I am now looking forward to the holiday season. It will be great to see my family again and to show off all the progress I have made. I hope othrs recovering from illness or injury can also find reasons to be thankful this year. Here’s to another year of progress and recovery!
I don’t have much to add since my last post, but I wanted to acknowledge the one-year anniversary of my stroke. Or as I’ve been referring to it, one year and I’m still around. My therapists warned me that some people struggle at the one year mark and grieve on that day, but I have nothing to mourn. Despite the struggles and disabilities, I’m still working in the same lab, still living in the same apartment. I still talk to my family and hang out with my friends. As I’ve explained to several people, I’m still me, just sitting down. My friends are taking me out for dinner tonight to celebrate the day and be glad for how far I’ve come.
I am incredibly grateful for where I am today. Things could have been so much worse. I am incredibly blessed to have no cognitive deficits and to have recovered to a pointy where I can live alone and keep my job, even with the adjustments I’ve had to make. I am grateful to have such a supportive system of family, friends and coworkers. Today s like having an extra Thanksgiving a month early.
This time last year I never would have imagined I’d still be in a wheelchair and still be getting by primarily one-handed. When the doctors told me it would be a long recovery, I pictured several weeks of building back up. I imagined recovery as one day learning to walk again, the next getting my right hand back. Maybe a few extra days to get my strength back. It has been a much longer journey than that, with a long way still to go. But I still see progress nearly every day even a year later. I have found that I could have a happy and fulfilling life even if I were to stop my recovery today The additional progress which I am still working toward and achieving is just gravy. Last year I was unable to sit up, to swallow or to even watch television. This year I’m able to walk short distances with a walker, swallow most foods and see normally with corrective glasses. My family and I have learned to celebrate the smallest advances, which I have found to be a useful skill for life as well as recovery.
I want to thank everyone for the well wishes and prayers over the past year. This time next year I plan to have even more progress to report.
We have finally found a treatment that seems to be affecting the ataxia! Until now, the most progress had come from botoxing the right arm to reduce the tone, but the hand remained uncontrolled. But the mirror therapy I mentioned previously gives me a surprising amount of control during the exercises. We place a full-length mirror between my knees so that I am looking at my left hand and its refection in the mirror, with the right hand hidden on the other side. When I move the left hand, the brain thinks the reflection of the left hand is actually the right hand making the same motions. I first move the left hand alone to overcome the disorientation and get into a rhythm. Then the right hand joins in, and for a few repetitions of each exercise, I can move it smoothly. The ataxia kicks in in 5-10 reps, depending on the difficulty of the exercise, but it’s 5-10 reps I wasn’t getting before! Our goals now are first to increase the motions of the right hand (at the moment it can’t move very much in some exercises) and to work toward more complex movements. Hopefully, these exercises will lead to a reconnection of the signals to the arm so that the correct message gets through and gives me back more use of the hand. I may not make it back to right handed, but two-handed would sure be great. And I’m good enough with the left hand that I can write, eat and type with it alone, so it takes some of the pressure off the recovery.
In other news, my parents visited recently, staying for two weeks before driving my car back home to sell. It wasn’t nearly as upsetting to see it go as I had expected. The bus gets me around town, and the car was just costing insurance payments and causing stress to keep running. It was a good car, though, so I made sure to tell her goodbye. While my parents were here, I caught up on a few appointments that they were able to take me to. I stopped by my primary care physician to get my tetanus and flu shots and get my cholesterol checked. It was determined that my stroke was not affected by my cholesterol, which had been in a good range, so I had been taken off the statins months before. I decided that I would be cautious and keep an eye on the levels anyway, just in case. I also went for a routine dental cleaning, only to find that my left-handed brushing hadn’t been as effective as I had hoped. Between that and my pretty defective one-handed flossing , I had cavities in back teeth that needed to be fixed. It wasn’t too surprising as I have always had problematic teeth, but still frustrating to have one more thing to deal with. I started to get upset that I couldn’t even keep up with my dental care, but the dentist recommended an electric toothbrush and flosser that turned out to be too easy of a fix to even get worked up over.
I also spent time with my parents shopping for new weather-appropriate clothes to wear. I had done well in the summer due to short-sleeved pullovers, but my fall and winter clothes were not nearly as wearable. Last year I was still in intensive therapy and lived in yoga pants all season, so I had not dealt with this problem yet. I was surprised at how different a wheelchair wardrobe needs to be from what I was used to. Many shirts are too short to comfortably wear sitting down, as they gap at the waist. Others have bands or ties that get dig in strangely or get tangled in the chair. I am capable of working buttons, but those on shirts are typically too small to be worth the effort of dealing with every day. And after my one attempt at mixing an iron with one hand that moves at it chooses and another that can’t tell if it’s being burned, I realized that non-wrinkle fabric is by far the safer choice. We were able to hit up sale racks to find a handful of useful (and cute!) pullovers to get me through, as well as a nice pair of pants for dressing up to avoid trying to find a skirt long enough to cover all it should without being long enough to catch in the wheels.
Our other major project was patching up the damage I had caused while learning to drive the powerchair. I never realized that the spokes on some chairs easily tear through dust ruffles. And to avoid having to deep clean the carpet quite so much, we found a hand-held mini-vac that I can easily use from the chair or my hands and knees. Another learn-by-experience of not trying to push a full-sized vacuum while sitting on the floor. Hey, no one can say I don’t try things out. And these situations make for the funniest lunch-table stories!
My parents left about a week ago, and I have been pushing through in my new responsibilities at work. I’m making a lot of progress and really enjoying the new field. I am hoping to soon publish a research paper on the research I had been doing before the stroke and have been directing since. It is a very exciting project, and we are finding exciting areas for follow-up studies.
Overall, things are going very well. I am quickly approaching the one-year anniversary of my stroke. I have made a lot of progress, even lately. My parents were pleased with the quality of my walking, and my energy is slowly building up. I still have a pretty low threshold, but I’ve learned to cram a lot in with what energy that I have. I will try to come up with a one-year post later this month. Thanks for checking in!
If you’ve been following these posts, you’ve probably realized I don’t like to post until I’m doing really well. Things have been pretty crazy lately, but my schedule should be calming down soon. The biggest event of the past couple of weeks was the annual HCV research meeting. I got a lot of good feedback on my work and made some new collaborations, so scientifically it was a great success. It was personally difficult at times, as I got very tired very fast (conferences are exhausting when you don’t have fatigue problems!). As with the other scientific meeting I attended this year, it was harder to not be bothered by those people who are simply uncomfortable around those in wheelchairs. I am typically not bothered by that in most situations, but networking events require people to interact with you. Luckily, my poster gave me a great chance to deal with that, as I was able to directly introduce myself to each person who came by. It is hard to ignore someone holding their hand in your face and saying, “Hi, I’m Courtney.” A few people still managed it, but most would start chatting normally and once they knew me, would come by to talk at other times.Several would hang around the poster asking increasingly inane questions until gathering the courage to ask about the chair. I never mind people asking, so I found this all incredibly amusing. Not to mention the same responses from everyone, regardless of age or culture. Pretty interesting, in a nerdy kind of way.
I was most nervous about the banquet and dance the last night of the conference. I have always enjoyed these events, as the social aspect makes up for many of the drier presentations throughout the conference. But this time I was nervous about missing out and watching from the sidelines. After a song or two, one of my friends asked if I was heading onto the dance floor. My first reaction was that I couldn’t, but it suddenly occurred to me that I wanted to be out there, and I didn’t care about anyone that would make uncomfortable. So I drove my chair right out there and had fun with the rest of them. I even managed to coerce a shy friend from the lab out there. Okay, by coerce I mean push her onto the dance floor with my chair, but it worked. Some people seemed uncomfortable or embarrassed for me to be out there, but most people thought it was great. My boss even helped me to stand for one dance, and we got group pictures with me out of the chair. Very exciting. A little scary at times, since I had foregone the steady sneakers and leg brace for a dress and cute flats, but there were plenty of people to keep me from falling.
As much as I have gotten used to some people ignoring me, there are times when it does come off as upsetting, particularly when it comes to being excluded from social events or by guys who otherwise might have been interested. I know that anyone who would do someting like that isn’t worth my time, but it can still be really hurtful. I have never been very sensitive to that kind of thing, so it surprised me that it bothers me now. But there are so many people who do look past the braces and the chair to talk to me and offer any help I may need. Those are the people I really appreciate and know that they are the ones I can really count as friends.
Besides the dancing, I have found other ways to do the fun things I enjoy. I think I already mentioned the sailing I enjoyed earlier in the summer, and I recently went hiking with a friend and her dog. There are several wheelchair-accessible hikes in Washington state, and we found one that looked nice from the pictures posted online. It was a beautiful hike, and we managed to teach her dog to mush. He’s a lab/husky mix, so he was born to it. We both enjoyed that. I’m looking forward to adaptive skiing this winter. I’ve discovered there is very little I can’t do in the chair with a few modifications, which is making this situation much more bearable.
As the title of this post indicates, I finally got to turn in the loaner power chair and get my own. The insurance finally realized that I need one, since I can’t push a manual chair one-handed, and the one hand/ one foot method just won’t get me very far. I got to pick the color for the new chair, so of course I got shiny red. One therapist mentioned that some people like to have chairs that blend in, but I don’t see any way for it to ever be unnoticeable anyway. And if I should have to be in a wheelchair, it should be shiny and red. The new drive is taking a little getting used to it, but I’m catching on quick. And it’s a lot faster than the other chair, so maybe I won’t miss my bus anymore! I still plan to walk again in the future, but this is a great help for now.
My parents are coming to visit this week, and I’m very excited. They’re going to visit a while and help me get to some of my appointments, and they’re also going top help me sell my car. I’ve realized that I was hanging onto it for the wrong reasons, and that having a car sitting outside does not mean that I am as independent as I want to be (although I’m getting close) or that nothing has changed. I will definitely drive again, likely sometime next year, but the little saturn I was driving is just too small and low to the ground for me to comfortably use right now. And the modifications for me to drive left footed are probably not worth putting into a ten year old car. Hopefully the money I’ll save from insurance and parking and car tabs will make it easier for me to afford a more practical car when I’m ready to get out there again.
For now, I am enjoying my job and the exciting new collaborations from the meeting, and am getting by. I’m still in lots of therapy, and it’s moving positively. My walking is much better with the walker. My distance is starting to increase, but I still can’t go very far on my own. In occupational therapy we’re using mirror therapy to try to trick the brain into building new pathways for moving the right arm. The therapy has mostly been used for phantom limb pain and hand weakness, but it seems to be affecting the ataxia from the two sessions we’ve tried of it. Wish me luck!