Results

On Monday I had the chance to visit another neurologist. What I was hoping to get out of the appointment was advice on how to increase my function and improve day-to-day activities. I was so fortunate to actually have this happen. I left the appointment with a huge sense of optimism. My other neurologist is fabulous - she has done such a thorough job of testing all the possibilities. So, he essentially said he trusted her and agreed that what I have could be several things, but likely they would classify it under hereditary spastic paraplegia for now. Also, apparently he is now testing for new HSP gene mutations. I have previously been tested against the older mutations, but he took blood to test for the new ones. He then went on to discuss ways of dealing with this 'pain in the arse,' as he called it.

First, he prescribed exercise. I try to exercise, but it is super difficult when I can't do most 'regular' exercises and I tire very quickly. But, this time, I am determined. My goal is to exercise 6 mornings a week, doing resistance exercises, doing upper and lower body on alternate days. On the upper body days (which is MUCH easier) I will throw in some elliptical too. Over a year ago a physiotherapist recommended an elliptical for me to get some cardio exercise. So, we got one. Unfortunately, this neurologist said a recumbent bike would be better for me, because I don't have to hold myself up and I can just work on my legs. At this point, we don't have room for another piece of exercise equipment in our 500 sq ft apartment, and I would feel bad buying a bike and just storing the elliptical in my parents basement. So, I think I will try to stick it out with the elliptical for a while and see if I can manage it for longer periods of time.

Next, he suggested I try a "cocktail" that he said based on his research should help protect my spinal cord from more damage. It consists of Coenzyme Q10, Creatine monohydrate, and Alpha Lipoic acid. So, over a lifetime, taking these things twice a day is going to get mighty costly, but at this point I am happy to do anything that will help.

Finally, he suggested I increase my Baclofen dose. Right now I take 5 mg in the morning and 10 at night. He is working me up to 10/10/10 to see if it has any effect. Right now I don't find that the current dose is doing anything. I do hope that I am able to stay alert enough though with the higher dose.

All in all it was so positive. He wants to continue to monitor me, so I have another appointment in 6 months. This is so excellent, because my other neurologist saw me two years apart. I am excited that he feel s that it is worth seeing me more often and helping me stay on top of my problems. I am anxious to see how I do in these next 6 months. He had a machine test my strength, and next time I see him we can very quantitatively look at how my strength has changed. I'm so thankful for the opportunity I had to see yet another neurologist. I'm very fortunate to have wonderful people helping me get referrals to great neurologists, and to have a public health system that means I don't have to worry about the cost.

Hope

Tomorrow I have an appointment with another neurologist. This will be the fourth neurologist I've seen. While it is not exactly the way I want to spend my afternoon, I have a sense of excitement for what could come of it. So far I have been told that there isn't much that I can do to improve my situation. I should just wait for things to get worse (and they are). There must be something. I feel like I need a whole solution - someone that can tell me that even though my spinal cord will not necessarily heal, there are things that I can do to improve my independence and mobility - exercises, medications, assistive aids. Maybe this doctor will take that approach. In fact, this doctor may even be able to provide a more accurate diagnosis. Why not be optimistic? So, I have hope for tomorrow.

Job interviews

Currently, I am doing consulting work in business analysis. It means I have a lot of flexibility (which I love). However, it isn't exactly what I want to be doing 10 years from now. So, I have been casually applying to positions in the area. However, the fact that I might get an interview scares me immensely. Not so much because of the interview questions, but getting around a new place with a disability. Will I be able to navigate the building? Will there be stairs? I recently had two interviews, and both ended up okay. The interview room was very close to the front entrance so I did not have to walk very far, which is usually the case for interviews. But it is not guaranteed. Sometimes it is frustrating to think about being up against other candidates who don't have walking to worry about in addition to the actual interview. I also wonder when the best time to disclose my disability is. Should I tell HR before the interview? Then I can request that the room be close to the front entrance. I'm afraid that creates hesitation before they have even met me. Should I mention it in the interview? This seems the most natural to me. I don't want them to get someone they are not expecting - I want the company to be okay with hiring someone who won't be able to run around the office, but has the brains, skills, and personality to make up for it. It does mean that, even though they probably won't admit it, they will take my disability into account when making the hiring decision. Or, should I wait until later, maybe after the offer or even after I have been hired? This is hard for me because I feel like I haven't been honest, like I was hiding a part of me from my future employer. It doesn't seem like the right way to start off a relationship. But apparently I should never have to disclose my disability to my employer, but honestly, even though I can hide it pretty well in short walks on a good day, they are going to notice something is wrong. And then it is just awkward.

momentary troubles

I started this blog a few years ago just for fun. I was just looking for a place to write down my thoughts. From the drought of posts it is obvious it didn't stick. I am hoping to try at it again.

Since then, my life has taken many turns. I would have never guessed I would be where I am now. Looking back to when I started this blog I have many amazing memories, but the easiest thing for me to remember is how I felt. Happy. I remember constantly laughing (and rarely, if ever, crying). Life was great. I was succeeding in my studies, I held leadership positions, my family was full of love, and I had an amazing group of friends. I didn't have any specific reason for naming this blog 'Momentary Troubles' except that I really believed that no matter what was thrown at me in life, it would all be wiped away one day. However, at that time, my momentary troubles really were just momentary. I was worried about whether I would pass 'Systems and Signals' or find a co-op job. It is easier to have faith that you will get through anything when your problems are resolved on a four month basis. I had no idea what troubles were yet to come.

Now, four and a half years later, my troubles have gotten bigger and aren't resolved so quickly. Around August 2006 we began noticing that I was having difficulty walking. I began seeing doctors, physiotherapists, and neurologists, and had an enormous amount of tests. The MRIs showed "a relatively small cervical spinal cord in all 8 segments. The atrophy becomes even greater at the lower cervical cord, approximately C6 all the way through the thoracic cord." I had significant spinal cord damage. At the beginning, no one seemed to have any idea what was going on, and just told me that I probably had some injury at birth and should go on with my life. Eventually I found a great neurologist who did further testing. However, genetic tests indicate that I do not have the common mutations seen in hereditary spastic paraplegia, there is no inflammation from a virus, and regular MS is unlikely because I do not have any lesions. But it doesn't mean these aren't possible, I just don't have any concrete answers.

Since this discovery, the always-laughing-never-crying person changed. I cried. A lot. My troubles moved from worrying about succeeding in school to wondering if I would be alive in 5 years. But at the time in my life where things seemed to be falling apart, I was provided with an amazing strength to get me through: my best friend and now husband. He has stayed beside me every moment and been the only thing that has held me together. I still have my moments where I am utterly frustrated. I still break down and cry. It is hard to be satisfied that one day I will be whole and new again, when I so badly want to be healed now. But whenever this happens the most wonderful person in the world helps me find hope in what is to come.

While God has taken some of my health away, He has been so gracious and in its place given me so much more. I would have never imagined being so full of joy. It is amazing to think that before all of this happened, when troubles were few, 2 Corinthians 4:17 was the verse that inspired this blog. I believe I was being prepared for things to come. It is not until now that I realize this blog was given just the right theme.