Downhill both ways

I have been working on improving my ability to ride my bike. Yesterday I went for a ride of about 3 miles, with an average speed of around 6 mi./h, and this means that now I can ride my bike approximately the same speed that Jeff runs when he is running slow. It is still tiring but is getting easier.

On one of my first longer rides (about 2 1/2 miles) I had the sense that on the way out to my turnaround point I was going slightly downhill most of the way. Then I turned around, and to my surprise, I still had the sense that I was going slightly downhill. That is how flat it is here–I am so used to being in places where even apparently "flat" areas slope ever so slightly uphill or downhill, that when confronted with true flatness my brain doesn't know quite how to categorize it. It's like I'm having to experientially learn a new concept, even though cognitively I've always known that such places exist.

On the flip side to that, in physical therapy I am trying to work on recovering abilities that my brain has an experiential program for, but which cognitively seem impossible right now. I mentioned in my last post that I am hoping I may be able eventually to run again. Running is an ability that from an early age I felt like I was built for. I remember in second grade being given a stopwatch by my parents, and using it to time myself and my friends racing across the playground. I remember soccer practices in junior high where the coach would say "we're going to run until Bridget gets tired," and the groans from my teammates who knew that we would be running for a long time. That program is deep. But right now, pre-requisite abilities to run the program are corrupted – mainly balance and coordination.

So when my physical therapist suggested that we get a baseline for where I am now, so that we might be able to see progress on this goal, I didn't expect it would go very well– if I'm not even comfortable walking, then running (which essentially involves leaping from one foot to the other very quickly, seriously relying on both balance and coordination) is a long way off .

Last Tuesday I was hooked into a harness (that kept me from falling and held some of my body weight using a contraption mounted to the ceiling), and put on the treadmill. My expectation was that I wouldn't be able to react fast enough, and would end up getting dragged backwards by the treadmill, but I was okay with that, because then anything better than that would be a mark of measurable progress. I tried hard to just let my body do what it could do, and not interfere by thinking about it too much. This was the result:

Not exactly elegant, but way better than either I or my physical therapist thought I would do. So with the harness I was not forced to balance, but the quick motion involved in switching from left to right and back again was still required. The less I thought about it, the better I was able to do it. This means that the old program for running is probably still there. What that means in terms of function is unclear – I still will not be able to run again if I can't deal with those balance issues– but I can say that it was fun and I look forward to trying it more in the future!

One year later

June 13 marked my one year surgery anniversary. This milestone comes with mixed emotions – I have improved SO MUCH from where I was immediately post surgery, but I am still much worse off than I was immediately pre-surgery. I still question whether surgery was the right choice, but there is no way to know that. At this point there is no choice but the choice I made, no outcome but the reality that is.

I marked this anniversary by focusing on how far I've come in the past year, and by doing a list of things that I was desperate to do but could not in the weeks (and in some cases months) following surgery. These are mostly things I do every day anyway, but for the occasion I made sure to pay special attention to the fact that I can do them now.  My list included: use the bathroom and take a shower without any assistance (other than one grab bar in the shower), swallow food (in particular, we went out for ice cream), write with a pen and paper, see the world in 3-D (both eyes, no double vision), sit and even stand without assistance, walk around the house with no assistance, walk around the block holding Jeff's hand (no other walking aids, but Jeff provides more stability than any forearm crutches or canes), and not only ride in a car (without getting sick from vertigo and vision problems), but actually do the driving. I still have a lot of recovering to do, but it is good to recognize how much I have recovered already, and to be hopeful about prospects for future improvement!

Jeff ordered a large ice cream, dipped in chocolate, and he didn't really think much of it when they said they could only dip the first scoop-- until they came back with this monstrosity

It is often a lot more evident to me what my deficits are than it is to other people these days. One year ago, I think the reverse was true – I have very little memory of my time in the ICU, and it wasn't until going back and reading some of Jeff's blog posts from that time that I realized just how bad off I really was. Jeff was very positive in all his posts about how I was doing, but we were dealing with some serious stuff. I knew that they were keeping me in the ICU longer than they said they would, and I knew I was getting a lot of CT scans, but somehow I didn't quite put it together that enlarged ventricles was a potentially serious complication of surgery. I also didn't get it that the reason they were giving me IV saline was related to getting my ventricles to drain back to normal. I was sleeping so much at that time, that there was an awful lot I was missing. In Jeff's post from exactly one year ago, he mentions that they took out my catheter that that meant getting up to pee a LOT. At that time, I really had no idea why I seemed to have to pee (a lot) every hour, I just knew it was extremely exhausting and very annoying, given that I had such limited mobility – I couldn't even sit up, or even roll over or adjust my position in bed. There were a lot of things I didn't question – I put a lot of trust into my medical team, and into decisions that Jeff was making based on their advice.

So, one year ago today I was feeling pretty miserable in some ways, but relatively oblivious to just how much things had not gone the way that everyone expected they would. I was still thinking that I was on track toward a relatively quick recovery, and that instead of a week or so in the hospital, I might be there 10 days. I think it's good that I didn't grasp the full weight of my situation while I was in such a weakened state. I think it would have been very difficult for me to take. I have my good days and my bad days now, but mostly good, and making progress always helps. Here is a video taken at my last PT session, showing some recent progress:

I can only walk with a cane for a short distance before getting very tired – imagine what it might feel like to have the right side of your body injected with Novocain, have the left side of your body responding like a mis-calibrated joystick or mouse so that it only does what you want it to some of the time, then spin really really fast on a merry-go-round – that's basically what it feels like all the time for me, so walking is a bit tiring :-) But I am continuing to improve, and am fairly confident that eventually I will be walking without any walking aids. My goal for the next year is to get comfortable with walking, and to move on to running. There is no way to tell whether this is realistic, but I will never find out if I don't try, so you can bet that I will be trying my hardest!

Photographic Evidence

I finally took some photos of our house for the blog, and unfortunately they turned out sort of dark and blurry, but I decided to post them anyway because they are better than nothing:

Our living room (note that you can see our Prius parked on the street through the big window)

Dining Room

Messy Kitchen

Jeff in his office wondering why I am taking a picture of him

Jeff at war with the dandelions in our front yard

I will try to post clearer pictures after we have some of our art up on the walls and are a bit more settled.

Friday was the final exam for my intensive May course. This means I am finally done teaching for the school year, and although I am not exactly on summer vacation (I still have other things to work on, like getting my research lab set up) things that work are set to slow down considerably. This weekend was the first weekend in as long as I can remember that I didn't work at all, and I really needed the break. On Saturday, we had a picnic lunch with our friends Vanessa and Jason at a park that is less than half a mile from our house.

Photo taken after we had already packed up the remains of our delicious spread that included brie, baguette, crackers, hummus, artichoke dip, strawberries, grapes, melon, mango, assorted veggies, and peanut butter cookies.

A very exciting part of that picnic is that I rode my bike to it. This was made possible by attaching stabilizer wheels to my bike, which keeps the bike from falling over.

On my bike with stabilizer wheels attached

I was very excited to find this kit, as there is no way that I would be able to keep myself upright on a bike with my current balance problems. Unfortunately, it is not quite as easy as I had hoped, as although the bike will not fall down with these extra wheels attached, if I leave it to the right or left the bike will still go that direction – it still takes quite a bit of balance and concentration to be able to ride even with the stabilizer wheels. I started by practicing riding up and down our alley, then progressed to riding around the block, and once I could do that I felt like I would be able to get to the park (which is only a few blocks away). So we made plans to meet our friends at the park for a picnic in celebration of my new accomplishment. Right now my top speed is around 4 mph (as measured by the bike computer attached to Jeff's bike), so I can't go too far. However, I expect to get better with practice and to soon be enjoying the many miles of bike paths we have at our disposal here in Regina. I may not be able to go for a walk or a run, but soon I may be able to at least get out and go for a ride!

Good Things

As promised, today's post will be about good things, complete with pictures.

First, a picture taken on our trip to Seattle:

 One afternoon while everyone I knew in town was either at the conference or at work, I decided to check out Pacific Science Center. After catching a planetarium show, I sat for a while in the tropical butterfly house, where a butterfly landed on my hand and wouldn't leave. It stayed for so long that one by one a group of at least 10 kids (all of whom had to be under eight years old) and their parents amassed to see "the lady with the butterfly." Several of the kids were trying to stand very still and holding out their hands hoping a butterfly would land on them too. After several minutes the dad of one of the kids standing around offered to take a photo with my phone and this was the result :-)

Second, a photo of me crossing the finish line at my recent 5K walk:

The walk was part of the annual Royal Road Race that takes place at the RCMP (Royal Canadian Mounted Police, a.k.a. "Mountie") training facility, which is here in town. The RCMP cadets were race marshals along the course, and since I was by far the last person left out on the course, once I passed by, the cadets were free to leave their posts and head to the finish line for brunch. One cadet decided that she would walk with me to the finish line, and everyone after her followed suit. By the time we reached the finish line, I had quite an entourage of Mounties in training, and was greeted as I crossed by four Mounties in uniform. They seemed to know that I was really struggling, that I wasn't sure I would make it, and without making a big deal about it, they rallied behind me to give me the momentum to push through to the end.

Third, evidence that Jeff was happily on board with this project at first:

The previous owners of our house had young kids, and they built a giant sandbox in which was housed a large play structure. When they moved, they took the play structure and we were left with a 16' x 15' sandbox. My immediate thought was that this would make a lovely raised garden bed if we put some dirt on top of the sand. But then I realized that it would be necessary to have some place to walk, so we got the idea of putting down some bricks or paving stones. But then we realized that those would just get covered up by the dirt, so we would need to essentially build raised garden bed walls around the walking path. The last thing anyone needs to do just after moving into a new house is undertake a major project like this, but the garden needed to be planted right away because of the short growing season here, or there would be no garden until next year. Somehow it seemed like a good idea at the time.

So long story short, what was supposed to be an afternoon project wound up essentially to be three full days plus four evenings of Jeff's time. I helped as much as I could, but with my mobility issues, fatigue, and problems with coordination, I was not able to do as much as I at first had hoped I would be able to do. Jeff is not exactly a natural with a power drill, so normally I would be the one to drill all those pilot holes and put in all those screws, but given my limitations Jeff courageously volunteered. There are places where the boards are crooked, where they are spaced such that there is quite a bit of screw visible between two boards, and where the screws go in at angles, but it is perfectly functional and none of those minor construction issues are really even visible now that the garden is filled with dirt (which Jeff moved from the pile 40 feet away one wheelbarrow full at a time, carefully placing each shovelful of dirt in the garden).

Yesterday we planted peas, lettuce, two kinds of carrots, two kinds of beets, Swiss chard, yellow zucchini, and two kinds of potatoes. We left room for a couple of tomato plants and pepper plants which we will buy at the garden center and plant in early June. By the time it was all done I am pretty sure that Jeff had had more than enough of building, prepping, and planting, but hopefully when we harvest at the end of the summer it will have all been worth it :-)

What I can do and what I can't

I have been dealing with it a lot of reminders lately about just how disabled I am. Most of the time on this blog I focus on things that I think people will be interested in hearing, and I generally try to stay positive, so I don't talk about some of the challenges that I deal with on a day-to-day basis. I also don't talk much about the challenges that people can't see when interacting with colleagues or socially. I think that sometimes this leads people to believe that I'm doing better than I really am in some ways. I am functionally much less disabled than might be expected based on my level of physical disability, and there are several reasons for that. One is that I have a job that doesn't require me to do a lot of physical tasks. The second, and biggest reason in many ways, is that Jeff does an awful lot for me, both at home and things that support me going to work. The third is that financially I can afford equipment and gadgets and all kinds of other things that we have purchased to try to make things easier for me. And the fourth is that I am very determined, and would much rather be doing things that not. Without all of these factors, it would probably be more apparent what my physical limitations are.

Of course I am getting better all the time. In the last two days I have done things that I have not done since surgery, and that I wouldn't have thought possible a few months ago (put some furniture together, brought laundry down to the basement, walked about 30 feet outside without a walking aid). But progress is slow, and it really is unclear how much better I will get. So because I am not always so clear about things like this, but I really do want people to know how I'm doing, I am going to give an update on my physical progress.

I still have serious problems with balance. I still have quite a bit of ataxia, more so on my left side than my right, and this lack of body control interacts with my balance problems in a number of ways. The most obvious is with walking, where I have difficulty making smooth movements and difficulty shifting my weight to the left side. Walking is all about shifting left to right, and I have to consciously tell myself to shift left basically every time I take a step. Some aspects of this are becoming more automatic, but in some ways as things get better more problems are uncovered – things that were hidden before behind some other problem. This inability to do an automatic weight shift to the left means any form of walking is effortful, inefficient, and sometimes painful when my body winds up spending time in a position that it is not designed for.

I still have very limited sensation on my right side, and unfortunately now I'm having quite a bit of neuropathic pain throughout the right side of my body. This lack of sensation, coupled with coordination problems, means that I cannot do a lot of tasks that I used to think were simple. For example, I can't reach into my bag and find my keys with my right hand, and it takes concentrated effort to do something like screw the lid on the toothpaste tube. The problem that I run into is that my right hand can't do it because I can't feel the position of something small and my hand, and my left hand can't do it because it's too shaky. I have found ways to work around certain problems, often using visual cues to help, but I am limited in what I can do. Also, I am no closer to being able to type than I was six months ago. I am getting better with the speech recognition software, but the software is very buggy and often causes problems on my computer. I can write with a pen and paper, but it is slow and requires quite a bit of effort, and after more than a couple of minutes of writing, I end up experiencing a great deal of pain.

The neuropathic pain I feel throughout my body feels sort of like what your hands feeling like when they get so cold you can hardly feel them, and then run them under hot water. It's like an intense burning sensation, with a sort of pins and needles feel. I currently take medication that makes this tolerable, but it never goes away. If I forget to take my medication (which I have to take four times a day) the pain takes up so much of my energy and attention that a lot of my physical abilities kind of start to fall apart. Also, doing physical tasks exacerbates the pain, which makes everything a little harder.

With everything being so effortful, I have limited attention to spare. When I'm focusing my attention on walking with my crutches for example, I really can't look around much. Shopping is excruciating and I can only handle it for about 20 min. Trying to integrate all that sensory information takes way too much attention. Apparently the region of my brain that was affected plays a large role in transmitting sensory information to parts of the brain where it is supposed to be integrated, and this process is a little bit disrupted for me.

I can't carry a class of water without spilling it, I can't just go for a walk somewhere, I can't leave the house without having a plan, I can't do things like prepare all of my meals if I want to have any energy left over for other things. Almost every single thing I do, from getting dressed and brushing my teeth to getting in and out of the car and driving, takes longer and I have to work harder to do it. People can see the mobility challenges, but it's hard to see the rest, because I compensate for it in one way or another, often by having Jeff do things for me that I can't myself. I am extremely lucky to have Jeff, to have a job I can do despite my limitations, and to have the resources to deal with this situation. I am not writing this because I want sympathy, I just want to try to share my experience. It's hard. And even with all of the challenges, there are many good things. I will share some more of the good things in my next post :-)