CIDP And Me - Baby I Can Drive My Car!

It has been quite the week over here! I have 2 major developments that warrant blog posts (and celebratory wine) to share with you.

The first is in the title of the post - driving! I can no longer drive a 'regular' car as I can't pump or feel my feet enough to safely use pedals. Instead, I need to use hand controls. Like everything else there is a process for getting hand controls. I have been working with the driving occupational therapist to make it all official over the past few weeks. Step one was a cognitive assessment. Believe it or not my cognitive faculties are in order (or good enough anyway). Step two was a driving assessment using the controls. No practice runs or anything, cause why be comfortable or have a sense of what's coming? The assessment involved driving the OT's car with both the OT and a driving instructor in the car. Scott was not allowed to come along. This happened Tuesday.

I felt a little bit like I was 16 again. It's not that I'm worried about my driving ability but 1. I haven't driven in 2 years 2. hand controls - big unknown there 3. Different car than I'm used to 4. Two strangers judging and evaluating me... Not my idea of fun. Turns out it was though. I've missed driving. And hand controls are kind of fun! They have a lever that goes on the left side of the steering wheel and is connected with rods to the pedals (a metal plate covers the pedals so I don't accidentally press them). You brake by pushing and pull to accelerate. The tricky part is getting the feel for how much strength to use (you really don't need much). There is also a knob-thing that attaches to the steering wheel to give full control when steering with one hand. It didn't take me too long to get the hang of it, though I did want to use my feet. The assessment itself was not that stressful - no parallel parking! We tooled around town a bit then went on the highway. I was grinning the whole time.

Step three would normally be to get the controls installed. The nice thing is that it is easy to switch between hand controls and 'regular' controls, so Scott will still be able to drive the car (when I let him:D). Unfortunately the controls cannot be installed with a standard transmission, which brings us to step four - my new car! Yup I get a new car out of this deal. We pick it up Monday. Hopefully I can get the installation done in the next week or so. Finally (step 5) I need to let the DMV know about the controls and have a note added to my license.

Exciting development #2 - wheelchair not required

This may not be new to all of you as I couldn't help posting it on Facebook, but I went out without my wheelchair for the first time this week! That's right, I finally took Rosie (my rollator) out for a spin in the real world. We went for lunch, cause that's what I do. It went perfectly and felt great. In fact it went so well that I keep repeating it. I even took Rosie to a new 'regular' yoga class this morning. My legs and butt are kind of annoyed with me (I feel like the day after squat-day at the gym) but it is totally worth it! Now, this doesn't mean I can relegate my chair to a dark corner yet, but it's definitely a step in the right direction.

I feel like I have been on the cusp of this outing for ages. It's been both a physical and psychological battle to get here. Luckily my physiotherapist is very good at reading me in both ways and prepared me well. I'm still terrified of falling and breaking something so I like to try everything new in a controlled environment (i.e with my physiotherapist holding my safety belt) first. Our little walks outside the hospital over the past couple weeks were what finally gave me the confidence to do this. She wants me to try walking from the car to my next session (with Scott there in case) to see how I manage a slightly longer distance.

I'm going keep going out with the rollator as much as possible to build up my stamina and confidence.
There are times that the chair is still needed though and that's OK. Nothing about CIDP happens instantaneously. I'm sure I will be double-wielding these devices for months to come while I work on my cane-walking skills. I've certainly reached a milestone with this though, and am going to celebrate this evening.

Ciao ciao

CIDP And Me - Life as a Lab Rat

It's been awhile since I posted an actual update, so this may be a little long and scattered.

I had my 3-month checkup with my neurologist last week and it went pretty well. He does makes me feel a little like a lab rat though. He was so happy my last IVIG treatment went well that he is changing things up again. Why risk getting comfortable after all? The name of the game now is to find the minimum dose of Prednisone needed for me to have IVIG without a reaction. We will be slowly weaning throughout the summer. We're also tinkering with some other medications (I'm losing track of what side effect belongs with which change). So much for only changing one thing at a time! However, I did leave the appointment with a plan and a schedule for the next 3 months, so that's good. I think my favourite part of the appointment was when the doctor and Scott started talking about how finding this magic number is like coming up with variables for a math equation... Then they thought they could write a paper about it... Oy. This is my first IVIG week with a lower dose and so far, so good...

I have made some good physical gains recently. We are working on walking outside in physiotherapy. We take the rollator to the hospital entrance and I walk down a slight hill (mountain) and across a crosswalk to the parking lot then back again. I've done this twice now and plan on doing it weekly - my apologies if you get stuck waiting for me to cross the road. The first time involved a lot of breaks and a lot of swearing and sweating as I conquered my fear of walking on a slope. Today was much better. I had one break and didn't swear at all! I was a little freaked out at one point but it will continue to get better. I am working on this at home by walking up and down sections of the ramp. I haven't done the whole ramp yet but am getting there. I hope to be able to get to the car sans-wheelchair in the very near future. The next thing will be to build up my stamina so that I can take the rollator to the shops without having to sit too much.

We are also working on walking with a quad cane (a cane with a 4-pronged claw for more stability), which is hard work and not what I would call fun. I'm not ready to take this out of physio yet, but it is good to have goals. My balance and ability to stand unassisted are getting much better. We even did a balance test a few weeks ago! My therapist laughed at me because I Googled the test ahead of time to know what I was in for (it's called the Berg balance scale - you can Google it too!). Scott was not willing to help me try it out at home - he has no spirit of adventure sometimes - so I didn't actually 'study' for it. I didn't ace it but we now have a benchmark, which is just awesome. The other big thing at physio these days is stairs. I go up and down a short stairway to nowhere every week and am getting pretty confident with it. As long as there is a sturdy rail, a cane and a spotter, I can safely manage a few steps. I may even try the stairs by the ramp at home one of these days.

My parents came for a visit a week or so ago. It was a good weekend for many reasons as I had not seen them in too long. One unexpected bonus was the perspective it gave me about how far I have come. The progress I have seen has been so slow it is easy to diminish it or feel like it isn't really happening. I don't really feel like I am that much more mobile than I was in the fall, but I am. It was a good little ego boost to see this in their reactions as they watched my get around the house.

Finally, I went to get fitted for custom AFOs today. These are the lovely (and oh so sexy) braces that allow me to stand up and walk around without breaking anything. I've been wearing off the shelf AFOs for almost two years but decided to take the plunge into the custom market as I am likely to need them for a long time. The orthotist had me stand, checked my range of motion, and took fibreglass moulds of my feet and lower legs. The braces should be ready in 3-4 weeks. I'm pretty excited. I'm also experiencing a creative block. I can have a picture or pattern on the AFOs - I just need to send in a photo. Now, it seems rather boring to let such an opportunity pass, but what to do? These will be well hidden under my pant legs, so no need to be conservative. Do I go for a nice argyle or pattern? Do I immortalise Barney on plastic? Do I pull out a fun Mesopotamian image or seal impression? Perhaps I go with a bookish or musical theme? I feel like I'm deciding on a tattoo and am probably (definitely) overthinking it. I'm sure I'll figure something out. Suggestions?

That's it for now - covfefe everyone!