Monday, August 23, 2010


Today I had my first physiotherapy session! At my consultation Friday, my physiotherapist (PT) Vince had me walk and stand for him. I was amazed by how much he learned about me just by watching this! He said I stand with my back back and my shoulders kind of slouched. He also said my gait is stiff. I felt so validated! That ignorant, rude neurologist who said my balance was fine because I could do the heel-to-toe walk was wrong! Vince noticed! He said this is how I compensate for the balance problems.

I feel so angry at that neurologist, first because the heel-to-toe test is a very basic test that doesn't really reveal my problems, second, because according to Vince, my heel-to-toe test does reveals problems. My simply being able to do the test isn't good enough! I told Vince about this neurologist and he gave me a look like, "That doesn't make any sense!" I told him the experience was demoralizing (and also demeaning!). I didn't remember to tell him that the neurologist said that if I saw a PT, the PT would say "Why are you here?" You know... Because I could do the heel-to-toe walk and was therefore fine. That neurologist knew virtually nothing about Dandy Walker Syndrome, by the way. For almost every question I had, he said "I don't know." Well, then look it up, damn it! Call a colleague! Yeesh.

I had described my balance problems in the beginning when he asked me what my problems were. He also asked me about what medications I take, activities I perform and what other health issues I have. I liked seeing him nod his head and ask his subsequent questions. It's fascinating to watch someone try to figure something out! I told him my shoulder slouching is likely at least partly due to the curvature of my spine. It's basically a slight hunch. Also, I told him my neurologist had suggested my stiff neck is contributing to my balance problems and that my nursing-student friend suggested my heart medication can cause fatigue in the legs. He nodded his head again, seeming to agree that the information I offered was at least possible. I felt so smart! I think as patients it's important to put pieces of information together and to be as open with medical professionals as we can.

I'm also glad, in a way, that my issues are actually visible. I mean, I knew they were at least some of the time. A good friend of mine noted a few years ago that I "walk funny" and he demonstrated the same gait Vince described, only exaggeratedly. Over two years ago I opted out of a job during a job interview for a position as an usher at a theatre because I found out the job would require me to stand a lot. I told the interviewer that I couldn't stand for very long. There were also times in university, before I got sick, that I noticed I was unsteady and slow going down the stairs at times. A new friend of mine noted this at the subway station once. "You have trouble on the stairs too! Damn, girl!"

So my disability has always been with me. As I illustrated just now, it seems to have become more of an issue in the past couple of years. That can happen with Dandy Walker Syndrome. I've read that the symptoms can get worse during adulthood. My neurosurgeon told me that weakness can definitely aggravate the symptoms, so it makes sense that I've been having greater issues during my post-viral syndrome. Not only that, but I've been mostly sedentary. Surely that doesn't help. Some of my muscles are weak at least in part because I haven't really been using them. That's going to change!

Vince had me do a bunch of exercises today to further evaluate which muscle areas I need to work on. He told me to do that home, two sets for each exercise, for ten times, three times a day, but I can modify it if I need to focus on improving a particular exercise. I'm so revved up. I know it will take time, but I'm excited to see how things improve.

I'm trying to be optimistic, but this weekend wasn't exactly reassuring. I felt pretty wobbly at times, nearly falling twice and many times losing my balance. I was also a bit fatigued, tired and just generally not feeling well. I'm not feeling great now actually. I walked properly on my way home, like he showed me, and it became painful and fatiguing. When I got home I felt shaky -- and sore of course! That's what happens when you get into shape. I still feel shaky and sore. My heart's been racing all day. I'm just not feeling good and perhaps it wasn't great to have PT when I'm feeling this way, but you know, if I only scheduled sessions for when I felt well, I wouldn't have them frequently enough for them to help me.

I think I will tell Vince how I'm feeling. He did find several areas of muscle weakness, grimacing, saying, "That's not good." Maybe my body's just not used to this. And he did schedule an appointment for tomorrow -- that's two consecutive days of physiotherapy. So he knows there are problems, but nothing I can't improve. I also had a bunch of strong areas, not that I'm surprised. I'm just a bit irritated that he says he doesn't think I'm fatiguing. He said this after having me do certain movements, even though I told him I generally only get fatigued after I endure activity for longer periods.

I didn't tell him I want a cane for long distances and wobbly periods, especially if I'm outside on ground that isn't level and there's nothing for me to hold onto. I have a feeling he would advise against it. I'm thinking maybe using a cane would prevent me from exercising muscles I need to work on. Still, I'm so sick of frequently having to right myself when I tip over. It's tiring. It's also a safety issue, I think. One day I may not catch myself. I'm not too convinced that strengthening my muscles is going to stop this, as it is a neurological issue after all.


  1. If you feel unstable and want a cane then you should request one. You can do exercises to stabilize yourself when you are in the gym or a safe environment. You will probably walk further with a cane and in the end get more exercise than you would have without one. Falling over doesn't sound like a great way to build strength to me. Voice your concerns. You are the patient.

  2. I agree with what Denise won't do you much good to take a fall that a cane would have prevented.
    You know, a broken bone is NOT what you need right now...

  3. I hate myself for not staying up to date on your blog. I will catch up eventually. Things are just hectic.

    I'm glad you apparently found a diagnoses (I must have missed that post) and that you're working with this new doctor to start getting things solved. :) It sounds like he cares and that is so important. I really dislike my current doctor because he basically disregards 75% of what I say. I thought for a while it was because I told him I'm a borderline hypochondriac but from hearing other people's experience it's the way he is with everyone. Grr.

    I don't think the cane should be a problem, but do be careful not to become dependent on it. Don't use it when you're feeling tired, only when you feel unbalanced. I'm really not trying to be bossy but I've heard stories of cane dependency (and almost experienced it myself). Be careful to not use the cane to compensate with or you'll just be further weakening your muscles.

    I hope you and the new doc make progress at your next appointment. :)

  4. It's a great feeling to get that kind of validation. We put too much trust in supposed professionals. It's why we should always get second opinions.

  5. Good luck with physio. I agree with the others - ask about using a cane.


  6. Glad you found the right person now, sometimes it takes few tries to you hit the right hole, lol. It is sometimes like that with everything. Good luck with your sessions. Sounds very positive. Anna :)

  7. You have quite a bit on your plate, Ashley. But I continue to be humbled by your optimism and your open attitude. You have a contagious spirit, and I mean that in every good way possible. Your outlook on life is so bright and cheerful while still being realistic, and I don't know how you do it. But good for you! When we have challenges, we can be our own destruction, or we can pick ourselves up by the bootstraps and go to it, already! And I know you're doing the latter. Keep up your cheer, and keep writing about how you feel. It certainly helps with keeping things in perspective.


  8. Well, it's so great you found someone who is listening and who can validate what you are experiencing Ashley. Go slowly and listen to your body so that you don't OVERdo.

  9. Get the cane but be careful not to rely on it too much! I had a skiing accident when I was 12 and needed to learn to walk all over again. I went from wheelchair to walker to cane. One day when I was using the cane after not needing it as much my dad got mad and snapped it in half. I was so mad but in the end it forced me to learn to walk without it. Using a cane is so much better than falling - only you know what is best.

  10. Denise - Yes, I have also considered that using a cane on long distances (if I was wobbly... Often I can walk long distances fine) may help me walk longer more comfortably. And yes, a cane during wobbly, weak periods would get me out more and for longer during periods when I would ordinarily opt out of something. Very perceptive! Thanks for your thoughts and for helping me feel more confident about my concerns.

    Joe - Yes, a cane could prevent a future fall during a wobbly period. I don't imagine I would break a bone. I haven't yet! I'm actually very resilient! Thanks for your good sense and care.

    Achieve - Don't hate yourself! My blog will be here for whenever you're ready. I already had diagnoses actually. My physical therapist does care, thank you! I hope you find a doc who cares about you.

    I wouldn't become dependent on a cane because I would only use it during wobbly periods and not even in my house. I would only bring the cane out if I felt I needed it. It would be a folding cane I'd keep in my bag just in case. Thanks for your thoughts.

    Lynda - Yes, validation is a great feeling! It's so true about second opinions. If I start feeling my PT doesn't believe me or if he doesn't support my decisions, I will leave him! I doubt that will happen, though. Thanks for understanding.

    Jane - Thanks for the support!

    Anna - Thanks Anna! Yes, sometimes you have to fish around for the right person to understand you.

    Nevine - Aw, nice observation. A lot of people seem to have a hard time finding both happiness and reality. I really am taking charge here, but I could be sitting around feeling sorry for myself. Thanks for cheering me on! Writing about everything does help me keep perspective.

    Jayne - It is great, thanks! Slow and not overdoing is great advice. Unfortunately, my stubbornness and lack of patience is making that difficult!

    Catherine - Welcome! I think I actually wrote an entry all about how my balance issues affect me and how a cane could help. I also wrote that I would only use it when I was tipping over and/or feeling weak. It would be a folding cane that I could just carry with me in my bag and only pull out when I needed it. I wouldn't become dependent. Thanks for the info! I'm sorry about your accident, but I'm glad you got better. Boy, your dad wasn't tolerating dependency!