In the first weeks after my stroke, I heard many stories about the ups and downs that come during recovery. I was warned that many stroke survivors suffer depression at some point, which was a personal fear of mine. I had been severely injured from a chemical inhalation burn in my college organic chemistry lab, and the accompanying depression during recovery was possibly the hardest thing I have ever had to face. I had survived a week on life support, but recovering over the course of nearly two years and finding myself unable to so much as walk to the mail box without stopping to catch my breath was too much to face after having been active for so long. During graduate school, I finally decided I couldn’t live with the depression I had fallen into, so I took up taekwondo lessons to get back in shape and have an activity to get my mind off my problems. It involved hours of effort, a diagnosis of asthma and more than a few tears, but by the time I graduated, I had earned a second degree black belt. It was far from easy, but one of the biggest accomplishments of my life. This experience has been a surprising blessing now, as I have a very different perspective coming into stroke recovery. Knowing I could survive what I did ten years back, I have had no doubt I could get through this.

There have definitely been difficulties unique to stroke recovery. Probably the most difficult has been to adjust to thinking of myself as someone dealing with a disability, albeit a temporary one. The first time we pulled into a handicap parking spot, the times (more than I should probably admit) that I convinced myself I could walk if I just tried a little harder but failed, the moment I realized that decreased function of my right hand meant that I couldn’t write by hand. I have never been one to be bothered by stares or rude strangers, but I was taken aback by the ones I knew who suddenly treated me differently just because I am currently in a wheelchair. Even though most people had no trouble with the situation and the others adjusted quickly, the first few days back with my friends were a struggle.I hadn’t expected those who knew me to change how they treated me, and I wasn’t sure at first if I could handle this new situation. I have worried about how to keep busy, as I tend to be restless and can’t yet get back to the hiking and kayaking and driving to new towns that I had done before. I have been particularly bothered by those who seek to take advantage of those in situations such as mine. While most people have gone out their way to help and make things easier for me, there have been a few jumping in to profit. I was astounded that the ambulance I had to take across the parking lot after passing out in therapy came at me for expenses well above my insurance coverage, despite me having passed my stop loss several thousand dollars before. Even the fairly charged expenses have been overwhelming, between medical expenses and adaptive equipment. I had to start thinking of the modest savings account I had dubbed my “down payment fund” as my “stroke fund,” even while knowing I was blessed to have it to spend.

Every struggle the past few months has been met and exceeded by the blessings. I realized the other day that instead of wondering “why me?” that there could obviously been no one more able to handle this situation. I was in a job that could be modified to suit my new abilities with a boss generous enough (and well funded enough) to allow me to make those modifications, and coworkers willing to jump in to help. My parents have flexible work and were able to stay in Seattle while I was in the hospital, take me home for several months to aid me while I recovered the ability to care for myself, and for my mom to spend two months with me back in Seattle while I learn to adjust to the situation. Mu friends have jumped in to help and have offered to help me out after she goes home.

While the physical impairments are frustrating, I am so very lucky to have no cognitive impairments. I can think and speak as before, which is a necessity to keep my job (and health insurance!!!). The only nonphysical difficulty I have encountered is a slight emotional lability, a difficulty in controlling emotion, that has shown itself as I have left the safety net of my parents’ house and tried to get back to my normal life. But even this is very mild, and I will soon be speaking with rehab counselors for suggestions on managing even that.

My power chair is not yet in, but the company delivered a loaner last Thursday. Today, my mom and I took a trip with it down to Green Lake on a beautiful sunny afternoon. It felt so freeing to get out and propel myself. I can push the manual chair with my left hand and foot, but it is too tiring to go very far. And with the power chair, I can take the bus to get around. The bus driver today was very nice to my mom and me, very patient while she learned to ride a bus and I learned how to ride a bus in a chair. Parallel parking those things into the bus is so much harder than it seems like it should be! But I am very thankful to be able to manage it at all.

Overall, even though nothing about this has been easy, nothing has been more than I could handle. I am very grateful to everyone who has and will support and encourage me along the way.

The past few weeks have been a whirlwind of doctor appointments, work days and “spring cleaning.” It has been overwhelming at times, but I’m starting to settle in.

I have seen so many doctors and therapists that I’m starting to lose track. All have been useful in helping me move forward and have reassured my mom (and me!) that I will be able to safely stay behind once she heads back to Arkansas at the end of April. The first visit I had was with the rehab doctor, who immediately started setting up additional therapy and appointments to cover all of my concerns. The main problem she wanted to address was the increased tone, and recommended botox injections into eight muscles of the arm and leg. My therapists in Arkansas had suggested this as a possibility, but my neurologist wanted to hold off a little longer. But by the time I got here, it was definitely time. I can’t say that the injections were pleasant, but they have helped an incredible amount. My right hand is opening almost the entire way, my ankle is no longer fighting the brace, and I can rest the entire right arm on the armrest of the wheelchair to calm the tremor. Previously, the tone would pull the arm back up whenever I would try to rest it, so the tremor continued at any time I didn’t have my entire weight into the arm.

I also revisited the ENT. I was sure that my vocal cord would be working again, as the previous treatment (which turned out to be a gel filler and not botox, I guess the tone developed so that I could still claim to have had botox) would had worn off weeks earlier. The test determined that my vocal cord is still paralyzed but is staying to the middle where the injection had left it. The doctor wasn’t sure why this sometimes happens, but it is obviously willpower. Just because I like to talk. We may have to address it later, but for now we’re taking a “wait and see” approach. Anything that delays needles in the throat, I am all for.

I also saw the neurologists at the stroke clinic here, who are convinced the clot had to have been thrown by a so-far unseen dissection in the brainstem. They have signed me up for another MRA, an MRI with contrast to examine the vessels in the brain. If this turns out to be the case, I will be asking why my vessels are in such bad shape, as there was at least one other dissection ion another part of the brain. The genetics department drew blood to test for conditions which could cause this, but no one really expects them to be positive since there is no family history of stroke.

I have also been back in therapy, using up what is left on my insurance. I will be getting a power wheelchair to more easily get to and from the bus stops and get around the building at work. The therapists want me to conserve my limited energy supply for work and targeted exercises. Since I will have to turn in my manual chair to get the new powered version and the power chair can;’t be thrown into a friend’s car for a night out, my therapist found me a donated manual chair that I will be picking up later this week. I will need much more physical therapy than my insurance will cover, so I will be attending a workout class at the rehab gym where I can use the equipment for an hour three times a week for just $5 a session. Much cheaper than therapy costs! In occupational therapy, we are still trying to gain control of the right arm as well as learning kitchen skills. This will be tied in with “pain and temperature awareness,” so that I don’ damage my one functional hand in the process of learning to cook.

My apartment has been the other major project lately. It is surprisingly accessible, although it it not very easy to get to grocery stores by bus. I looked at a few options for moving, but anywhere as accessible as my current apartment while located near a grocery store is way out of my budget. So I’ll be making this work. It helps that I have discovered AmazonFresh, which is a test program here in Seattle where Amazon delivers food directly to your home (and will unload it if necessary). It is slightly more expensive than going to the store in person, bu much cheaper than taking a cab to get to the store. Mom and I tried it the other day to see how it worked out, and I am very pleased. With that out of the way, we’re now focusing on rearranging my closets and kitchen so that I can access everything easily. I apparently stored everything in my apartment way up above my head, so that is having to change! The bedroom closet is done and we’ll be tackling the kitchen this weekend.

Work is coming along. The new tasks are taking some getting used to, as is my lower endurance level, but I’m making progress. My project is really coming along, even though I’m not the one holding the pipette. And I’m quickly picking up new skills. I really never thought I would be learning computer programming! There have been a few emotional issues to overcome, but I’ll cover that in a later post.

I plan on crashing in my recliner and watching TV the rest of tonight. I have been exhausting myself more days than not, but I figure that’s par for the course. I’ll continue to update my progress. Thanks for following along.

Before I even left Seattle, the staff at the UW rehab center set up appointments for a neurologist and rehab doctor to avoid gaps in my care and to get me into outpatient therapy as soon as possible. I met with the rehab doctor only a few days after arriving in Arkansas. He gave me the option if beginning outpatient therapy or going back into their inpatient program. As I had had my fill of hospitals and lucky enough that my parents work from home and were able to both get me to therapy and care for me at home, I selected the outpatient option.

Fortunately, the care at St. Vincent’s North Rehab center is as high-quality as I had received at UW. The physical therapists worked with me to improve my strength, coordination and walking skills, and my occupational therapist has helped me to improve function in my right hand. Both types of therapy largely focus on controlling the ataxia through weight-bearing exercises.

The neurologist recommended by the UW staff has been incredibly helpful. She immediately set to work attempting to medically calm the tremor so that I could control it enough to regain function. Sensory tremors are known to be very resistant to both medical and physical treatments, but we have done everything possible to get as much use of the right hand as possible. My neurologist has also given me multiple suggestions for working around the deficits for as long as they last and is always available for any questions.

There have been a few new issues and complications since I arrived in Arkansas. The ataxia got bad enough in my leg that I could not safely support my weight on that leg. I wound up with another mild sprain in the right ankle and was beginning to have pain in the knee. The therapists and rehab doctor ordered a leg brace to support both the knee and ankle. It took a month to get in due to holidays shortly after placing the order, but after arriving has really improved my walking. Since I don’t have to focus so much on controlling the leg, I can focus on trunk control and walk with a more natural gait.

I also developed increased tone and spasticity on the right side, particularly in the arm. I had thought that this only became a problem when the limbs had been completely flaccid, but it turns out that this is a problem with many stroke survivors of all levels. My arm has tried to draw up in what is known as a flexor synergy pattern. My fingers, wrist and elbow are most affected. Many people also have problems with the shoulder, but I seem to have full control of the shoulder. The biggest problem with these joints drawing up is that over time, the muscles between can literally shorten and require extensive therapy and sometimes surgery to fix. Since we caught mine early, we have spent therapy time extending the muscles, and I now sleep in splints to hold the joints in place. Also, a muscle relaxer that was one of the medications we tried to control the tremor, has helped relax the muscles. It has had a modest effect on the tremor, so we are still trying additional meds to act in combination to gain additional control.

My trips to the hospital turned out to not be entirely over. A few days before Christmas, I had massive head pain and began vomiting and stuttering badly. I was pretty sure it was due to the medication I was trying for the tremor since I had had trouble with another of the same class several years before, but I still had to go in to rule out a new stroke. They kept me overnight and ran new sets of scans. The biggest problem I had was when a doctor came in and told me that neither the stuttering nor the ataxia were real symptoms, but were symptoms of stress after the stroke. He suggested that I did not need therapy but instead needed a psychiatrist. He put this more gently to my parents, but to me suggested it may even be a deliberate manifestation of being stressed. I knew I was not trying to have these symptoms, and was frustrated that he was not listening to the full story, and the fact that I had been diagnosed with ataxia and sensory tremor by multiple doctors, including a motion disorder specialist. I felt the stuttering was really hurting my ability to covey this, as it made me sound nervous. I had dealt with this kind of problem several times before, particularly with young male doctors. I even had appendicitis misdiagnosed as homesickness. I have had much better luck with female doctors on the whole. My sister is a psychiatry resident, and she flew in to take a look. She determined that my symptoms did not have the hallmarks of a psychosomatic condition, and was furious that a neurologist would diagnose a psychiatric condition without a psychiatric consult. I saw my own neurologist a few days later, and she reassured me that she was familiar with these problems and is positive that I in fact have ataxia, particularly as it is a defining symptom of Wallenberg’s stroke. The stuttering faded as the medication wore off, and I now have a strict “no benzos” note in all of my charts.

There was one last trip to the ER between Christmas and New Year’s, when I passed out during therapy. The EMTs were thrown by the tremor and feared I was having a seizure. They took me to the ER by ambulance (about 100 yards from the rehab center, my parents walked across the parking lot to meet us). As far as I was concerned, I was in therapy and suddenly in an ambulance, which is a bit nerve-wracking. The ER doctors found that I had not had a seizure, but had simply passed out due to dehydration. On my neurologist’s suggestion, I now drink a Gatorade on the way to each session.

Overall, during the time I have been in Arkansas, I have improved my walking skills (I am still on a walker, with the wheelchair for long distances, but it is still better than before), have regained my sitting balance, and am much more independent around the house. I have enjoyed spending time with friends and family, and I am returning to Seattle the first week of March. My leave is running out, and I have to either try to go back to work or move out of my apartment since I can’t afford it without a salary. I feel I have to at least try, and my doctors and therapists have been supportive of this. My mom will be staying with me for a while to help me adjust, which relieves a lot of the stress of going back.

Now that my story is caught up, I will continue updating as I go and tell of any major changes during the rest of my stroke recovery. Thanks for following along.

Before I could be discharged from inpatient rehab, I had to take a day trip with my family. “Had to” is a strong phrase, as I had been looking forward to it for days. We chose the Saturday before discharge, as there was little therapy to work around. We were trained on car transfers the evening before. My dad was already an expert at these, as he has assisted my grandmother for the past several years.

The day of the trip, the nurse helped me get dressed and ready by the time my mom even got there to help out. We had discussed several possibilities for where destinations. Mom suggested a trip to my apartment, but I decided it would be too sad to see my bed and then have to return to the hospital. Other trips were too strenuous or too far for the short time we had before my next therapy session, so we settled on University Village, a shopping center near the medical center.

I was heavily bundled up, as the forecast called for cold temperatures this Saturday before Thanksgiving. The loss of temperature sensation on my left side was more noticeable than ever, when I was putting on gloves to protect a hand that didn’t even know it was cold. Dad picked us up downstairs and we headed off for the short trip to U Village.

It wasn’t until we pulled into the shopping center that the reality of my situation really sunk in. The hospital setting had been so displaced from my normal life that I had in a way imagined that once I got back to the places I had been before, that I would be the same as I had been before. There was a surreal feeling to pulling into handicapped parking and travelling the aisles I had walked before in a wheelchair. We had strapped my right hand to the arm of the chair to keep the ataxia from knocking me out of the chair, but I began to wish we had tied me in with some form of seatbelt. The activity of the people passing by and the lack of straight lines to help me find vertical left me swinging around with vertigo. I was highly overstimulated, even as I was excited to be out of my hospital room. I quickly realized that though parking lots and doorways are required to be accessible, many aisles are too narrow for a wheelchair. I found a pair of cute jeans on sale, but decided it would be too difficult to try them on. The only handicap-accessible room was reserved for a bridal fitting, and even if we had asked for a moment in there, mom would have had to help me both stand and remove the aircast to change into the jeans. I left them behind, but found a cute T-shirt and headband at H&M that would come in useful for therapy. We had Italian food for lunch, as pasta with generous amounts of sauce was one of the foods I could swallow. After gelato for dessert (yay!), we headed back to the rehab ward. In the time we had been at lunch, the temperature had dropped sharply.

Over the next few days, there was a rare winter weather event in Seattle. Many people were unable to get to campus, so the gym was unusually empty during therapy. I began to worry that we would not be able to get out for my release on Wednesday. My parents did manage to make it to the hospital to get me. After many goodbyes and photos with the people who had helped me for the past several weeks, we headed back to my apartment. I had had plans to stop by for Thai food and a Trader Joe’s run for ingredients to make our own Thanksgiving meal, we settled for swinging by the UW pharmacy and a Target run to get essentials for the flight home.

My parents and I spent Thanksgiving snowed into my apartment. I rested for much of the day, and we had chicken and gravy for our Thanksgiving meal. I was thankful to be with my family, and to not sleep in a hospital bed.

We flew out to Arkansas the day after Thanksgiving. Jessica and her husband gave us another lift, laden down with my wheelchair, walker, and a number of bags. The airline helped me board the plane with an aisle chair, made sure my family got to sit together, and helped us make a short connection in Dallas. For the record, airplanes and vertigo are not the best combination. I usually love to fly, but I was ready to kiss the ground by the time we landed in Little Rock. My brother brought his Jeep to pick us up, and we were finally there.

No one can get through a major injury or illness without a support system. So before I go any further, I want to acknowledge those who got me through my stay in the hospital and inpatient rehab.

The people most involved with my recovery have been my parents. They were in Seattle less than 24 hours after my stroke diagnosis. They would have been even sooner, but we were convinced I was most likely having a bad migraine or some other less significant ailment. From early morning until late night, my parents sat beside me, cheered me through therapy and brought me anything I might need. My sister took a week’s time from a busy residency to fly across the country and ensure I got the best care possible.

My friends and coworkers were also there whenever I needed them. As I mentioned before, Maggie drove me to the ER and spent the entirety of a Saturday evening hanging around the hospital waiting for news. Jessica and her husband picked my family up from the airport, and Jessica has kept my project moving forward while I’ve been out. My boss has been great, visiting my room in the hospital and arranging Skype meetings while I’ve been in Arkansas. He has assured me that I don’t have to worry about work, taking away a huge concern. All my other coworkers visited frequently, with someone coming by nearly every day I spent in inpatient care, and the group sent funny cards to keep me entertained.

Green Lake Methodist Church wasn’t what I thought I was looking for when I moved to Seattle. I visited due to proximity to my apartment, but quickly realized it is a small church, with few members my age. However, the church drew me in with its open and inviting congregation and caring community service opportunities. I fully believe the community is better for this group’s presence, and I have really enjoyed my time there. From the beginning of my stay, our pastor, Lisa, visited and brought gifts and kept the church updated. Several members visited and brought flowers and lotions and socks. Others called often and sent lovely cards. The quilting group sent a beautiful quilt to keep me warm, and the children in Sunday school drew pictures to brighten the room. It was nice to know that so many people cared.

Finally, I would not have made it far without the doctors, nurses and therapists at the University of Washington and St. Vincent’s Rehabilitation in North Little Rock. I have received nothing but the best of care, and these people have done for me what I could not do for myself while showing me how to overcome a number of challenges to relearn the skills I had before.

Even in the time since I have returned to Arkansas, so many friends and family have called and sent notes and good wishes. The prayers have done their job and helped me through a difficult time, even as I continue to work toward recovery. Thank you all.

My first full day in inpatient rehabilitation, I got botox.  Between the rehab and botox, I was beginning to feel like Lindsey Lohan. The botox was actually for my right vocal cord, which had been paralyzed by the stroke. The possibility of the treatment had been brought up a few days before to restore my voice and protect my airways during swallowing, but I wasn’t thrilled with the thought of a needle through the throat. The day before the procedure, my voice returned to near normal and I decided I didn’t need an injection. The ENT warned me that young people have a tendency to compensate for loss of a vocal cord, but that this compensation was not a long-term solution. A scope down the nose (also unpleasant) confirmed that the vocal cord was not moving. My family was present for the procedure, and my sister (or “young doctor,” as the ENT called her) helped out. While I would rather not repeat the ordeal, it wasn’t nearly as bad as I had anticipated. And I was able to speak much better afterward. This is good, because I like to talk. Which is a surprise to pretty much no one.

I had pictured rehab as a sort of boot camp, with therapists yelling and pushing and causing a great deal of pain. Since I had decided that if I pushed harder, I would be fully recovered in a few days, I actually had therapists telling me to slow down and pace myself. It turns out that practice and exercise are important for stroke recovery, but the brain will heal when it heals, and pushing too hard will only wear you out and set you back. This was possibly the hardest thing for me to learn in inpatient therapy. You would have thought that I had learned that effort doesn’t always directly lead to gains during my time in grad school, but apparently I didn’t. One of the first days in PT, the therapist asked what I wanted to work on. I told her I wanted to get my flying side kick back (I relieved aggression during grad school by getting a black belt in tae kwon do). She laughed and told me we should learn to sit up first. Which is not nearly as interesting.

The first few days of therapy were definitely the toughest. Less because of aggressive therapy than realizing all I couldn’t do. I had been very active before the stroke. I still practiced some martial arts moves at home, took a yoga class, and hiked around the Pacific Northwest. I walked extensively on a daily basis, so being confined to a hospital bed and wheelchair was a definite change.  Although the therapists assured me that being in good shape prior to the stroke was one of the best things going for me, besides my young age. Still, one day after not sleeping well, I was put on a balance ball after stumbling through several exercises that seemed like they should be much easier than they were. When I couldn’t stay on, I cried all over the two therapists that I adored. They helped me put things in perspective, and made sure I got better sleep. I had gone from needing 7 hours a night to 11-12 hours just to stay alert.

One of the first things we started on in physical therapy was relearning to walk. I had lost my sense of up and down and side to side, so balancing seemed impossible. My first walk involved a walker, two therapists holding me up, my mom standing in front so I could use her as a visual aid to find vertical, and my dad following behind with the wheelchair so I could sit when I got too tired. We realized quickly that my right ankle, which had been wobbly before the stroke due to several minor sprains, now could not support my weight. With the help of an air cast and 3 weeks of practice, I left inpatient rehab able to walk 150 feet on a walker with only two to three rest breaks and one person behind to catch me if I tipped. We endlessly walked the hallway outside the gym. There was a blue square of tile at the end of the hallway which taunted me to reach it. I insisted on stomping on that square at least once each therapy session. Whatever works.

My balance was also affected by the severe double vision I had acquired. It was difficult to watch television or read, as I could not gain adequate focus. For awhile, I would switch to sports channels and close my eyes, following along by sound. Once I got into therapy, the therapists patched the right lens of my glasses with masking tape to allow me to see clearly. This prevented depth perception, but was better than the swirling images I saw otherwise. Since there is so much change in the first few months after a stroke, the ophthalmologists were hesitant to alter my prescription before three months. So I had a masking tape eyepatch for three months. Not exactly high-fashion, but effective.

The most treatment-resistant symptom I had was the ataxia on my right side. My right leg didn’t step the distance or sometimes the direction I intended. The right hand missed targets altogether and shook violently when attempting to grab an object. The signals from the brain were getting scrambled on their way through the brainstem, and the right side seemed to be guided by someone else’s brain. If I leaned even the slightest toward the right, I would fall over entirely. I smashed my face into the bedrails several times before a caring PCT moved my bedside table to the left of my bed. My head could not decide which direction was vertical, so the therapists obtained a wheelchair with a headrest to support my neck and reduce strain. The most upsetting part was the day I realized I could not hold a pen. My hand was too weak to grasp the pen, and too uncoordinated to use it. I was right-handed, so I found myself learning to eat and brush my teeth and comb my hair left handed. This would have been more difficult had lab work not required so much of my left hand, so that I was pretty good with it already. The occupational therapist showed me a brace that held a pen for me while I pushed it to write. The penmanship was not the quality of before, but it was legible.

About a week and a half after the stroke, I unfortunately developed an additional sensory tremor in the right hand. The hand began to shake even when I was not using it, and I began to lose some of the skills I had only begun to regain. Within a few weeks, I lost all ability to feed myself or write with the right hand. Even now, I am typing this with the left hand alone. My doctors and therapists were upset to see this rare complication arise, and a few had never seen it before. Over time, the tremor developed into a violent waving that I often would attempt to calm by sitting on the hand. The tremor becomes worse when I am distracted, overly tired, or experiencing worsening vertigo. The most effective treatment appears to be weight-bearing. Leaning onto the arm will calm the shaking, and the therapists have frequently used weights to hold the arm down while I rest or work on other exercises. In later posts, I will describe more and less successful attempts to control the tremor during my outpatient treatment.

Overall, inpatient rehabilitation was a lot of hard work, but I met some of the nicest therapists and amazing patients in my time there.

When the neurologist informed me I had had a stroke, I didn’t have much reaction at all. Mostly because I didn’t realize that it was that much of an issue. She assured me that it was a small stroke, we just didn’t realize at the time how many deficits it would cause due to the location of the lesion. She warned me that I would be out of work for awhile, I estimated a couple of weeks. She told me to not get frustrated if I wasn’t 100% in two months, I pictured myself getting tired more easily than usual. Not that I would be barely walking with little use of my right hand at three months and more. I was told that if I were to have a stroke, this was the kind to have due to its lack of cognitive defects. I was told horror stories of locked-in syndrome and total paralysis, which I had not experienced. I quickly learned that there is no such thing as a “good stroke,” an “easy stroke.” Just varying levels of difficulty. I was lucky to have avoided far worse symptoms, but all levels have their own complications.

I was kept in the hospital four days, mostly due to the severe asthma flare-up triggered by the physical stress of the stroke. The corticosteroid dose was increased again just as I was about to get off of it. And those first three days where I was on high dose prednisone but unable to swallow, so unable to eat, could not have been pleasant for those around me. I spent most of the time fantasizing about hamburgers. When my swallowing ability returned slightly three days later, I didn’t care if the food was puréed or not, I was just happy to see it. Well, not enough to attempt the puréed pot roast, but still. Over the next few weeks, I was able to build up to eating most foods, as long as they were drenched in gravy. My meals began to look suspiciously like Dad’s favorite foods…

At the end of my hospital stay, I was transferred to inpatient rehab on the 8^th floor of the same building. They told me I would be there around two weeks, I of course assured everyone that I would get out in a week to ten days. Once I arrived and got assessed, the estimate extended to 3-4 weeks.  This was the first news to break through and upset me. I didn’t want to spend a month in the hospital, and began to feel I was failing for not finishing in the time I had expected. The biggest hurdle to overcome was realizing how real the symptoms were. In a way, it felt as though I had seen a television program on stroke and was simply imagining what it would be like to have these problems. Like if I really tried, I really could walk and use my right arm and see clearly. It just didn’t seem real.

Over the next few days, my sister returned to Massachusetts, my parents settled in to a routine, and I began the extensive rehabilitation to get my life back.

I had my stroke just after watching a football game on television. I have been attempting ever since to convince my dad that I didn’t actually stroke out because Georgia lost to Florida, but that certainly couldn’t have helped. As I stood up from the couch, there was a sudden pain in the back right portion of my head, just above my neck. I tried to sit back on the couch as I got disoriented, but by the time things became clear again seconds later, I was actually slumped on the floor next to the couch. In a coincidence I never thought would be lucky, I had had a serious asthma attack three weeks before. Since I was still tapering off corticosteroids, I was convinced I was having a medication reaction and took the symptoms seriously instead of writing them off as a migraine as I likely would have at any other time.

Out of instinct and habit, I called my mom to ask her if she thought it was worth a trip to the ER. Even though she assured me I should go, I wavered until I was able to stumble to a mirror and saw the unevenness of my pupils and felt the numbness on the right side of my face. I knew those couldn’t be good signs and my first thought was “stroke,” although I immediately blew this off.”I’m only thirty, it can’t possibly be stroke.”  I called my friend and coworker Maggie since she lives only a few blocks away. She had trouble even hearing me, as my voice had gotten soft and raspy. Maggie arrived within five minutes and I stumbled to the elevator to meet her. We barely got to the University of Washington ER, which connects to the building we worked in a research lab, before the UW football game let out and traffic blocked the streets. I assured Maggie I could get inside while she parked.

As I entered, I found that I could not walk in a straight line, but veered right and ran into every wall along the way. I got to the triage desk, where the nurse was busy on the phone and shoved a form in my direction asking my name and symptoms. I was having trouble writing, but got out “facial numbness” before the nurse caught this in her peripheral vision, hung up the phone and started yelling that there was a potential stroke up front. Another nurse ran to me and asked if I could walk. I was still running into walls and laughing at myself. The nurse didn’t find this amusing, but I told her that I could either laugh or be scared, and laughing is more fun. She got a wheelchair and got me to a room and IVs running by the time Maggie was even able to get back around.

The doctors recognized the uneven pupils and droopy right eyelid as Horner’s syndrome and immediately scheduled a CAT scan to look for a bleed in the brain. As I sat in the ER room, my symptoms abated and returned multiple times, now including on severe nausea, blurred vision and decreased heart rate.  Finally I had a headache fierce enough to make me yell, my heart rate crashed enough to require cardiology teams to inject atropine, and the symptoms worsened and no longer abated. The CAT scan and subsequent MRI showed no bleed, so the doctors were unsure of a diagnosis. A neurology exam showed loss of pain and temperature along the left side of my body, indicative of damage to to the brainstem. As I was transferred to a room, attending doctors were called in to examine my scans.

The next morning, I was informed that there was a clot in the brainstem, leading to stroke. I called my parents to notify them, and they jumped on a plane to Seattle. My sister also took a leave from her psychiatric residency in Massachusetts to fly out. They arrived within minutes of each other near midnight and were met by another coworker and her husband, who brought them to the hospital and brought my car over so they would have transportation back to my apartment.

In later posts, I will tell of my hospital stay and the process of recovery to date.

I’ve spent the past three months on the edge of a merry-go-round.

I know this sounds philosophical, but it is really the best description I can think of for the persistent vertigo I’ve experienced since my stroke October 30, 2010. I’ve never been a blogger, but several people have suggested I record my experiences in case it could come in useful for someone else. My name is Courtney, and I’m a thirty-year old medical researcher. I had no known risk factors for an ischemic stroke, and the doctors assured me that I had been one of the least likely people to have one. But I have learned that stroke can affect anyone, even those who believe it could never happen to them.

The stroke occurred in my brainstem, leading to a condition referred to as lateral medullary syndrome, or Wallenberg’s syndrome. I have no pain or temperature sensation on the left side of my body and a lack of coordination on the right. As I initially was completely unable to swallow and could not hold my head up unsupported, I am extremely lucky to have gotten as far as I have. My family and friends have been invaluable during this difficult time.

I spent a month in the hospital and inpatient rehab in Seattle, and have been recuperating at my parents’ house in Arkansas ever since. I plan to attempt to return to work in another month and complete my recovery back in Seattle. I hope my story is interesting and possibly even useful to someone following along.