CIDP and Me - The Quest for Quads

It has been an eventful few weeks in my little world. I am no longer walking in the parallel bars or Jolly Jumper - I'm using a walker! Very exciting. Now, don't get too crazy about all this. Like everything else in recovery, it is a 'baby steps' kind of improvement. I first tried the walker on Wednesday. I had a spotter on each side holding onto my safety belt and a third following with my wheelchair. I walked 15 meters the first time, had a break, then walked back to where I started (also 15 meters). This was enough to exhaust me and enough for one day. The following day I walked a little further (20 meters and back) in the morning and further still in the afternoon. On Friday I almost made it around the 'block' - a loop within the physio wing of the building. I find the walker frightening but it really is great to be on the next step. I hope it gets less scary as I get used to it. The plan is to walk at the beginning of each regularly scheduled physio session and build up my stamina.

The other advancement in the world of physiotherapy finds itself as the title of today's blog - the quest for quads. It seems my quads are in deep hibernation and it's time for them to wake up. What is the best way to wake up dormant muscles? Electrocution of course! So now I get around 10 minutes of 'muscle stimulation' every afternoon. My physiotherapist attaches two electrodes to each leg and sets the current to a just-bearable level. The current kicks in every 30 seconds for 10 seconds, during which I am to try to activate the muscle. At first it was a real challenge to isolate my quads and not use everything else (hips, glutes) but I'm getting the hang of it. I do hope it works as I need quads before I will be able to actually bend my knees while standing or do any sort of squatting.

I have been equally busy in occupational therapy. We are also working on quad strength but in different ways. A couple weeks ago they introduced me to the pole. This is exactly as it sounds - a pole  that goes from floor to ceiling. I pull myself up to standing and stand as long as possible. It is quite a bit different from standing at the parallel bars as I can't offset my weight through my arms as much. The pole relies on my butt and, you guessed it, quads, to keep me upright. I'm working on loosening my knees while I stand along with loosening the iron grip of my hands. I have standing sessions a couple times a day - call it detention or extra-credit.I'm also working in a few new activities in OT that focus on putting weight through my legs and feet. We are working up to a pivot transfer, but I need to be able to bend my knees before that will work.

So there it is. There have been a few other developments but these aren't really blog-worthy. In the world outside of rehab, Scott continues to be husband and caretaker of the year. He's really had to put up with a lot of unexpected crap this year and has handled it really well. In some ways this whole thing is harder on him than it is on me. I really wish I could help out more around the house and with the dog and take some of the stress away from him, but that will come... His mom went home yesterday after a really nice 3 week visit. We will both miss having her here - she is a great house guest!

CIDP and Me - Hello World!

Yesterday I went out for non-medical reasons. It was the first time I have done this since September! We went out for lunch to a nearby cafe and it was great. I wore pants with a zipper (jeans even) and shoes! I felt like a regular person, which was nice. Now, being Cape Breton, we did run into someone we knew from work, but only one person, so I consider that a win. I was a little reluctant to go out into the world because I don't want to run into people who don't know about my situation and then have to explain things. Perhaps I should make out business cards with this url on it and pass them to anyone who gives me that 'look'. We were initially thinking of an outing to the mall but the thought of running into scores of well-meaning but curious international students made me slink back into my shell. Plus, I hate the mall... The cafe was the perfect solution. I had a Thai wrap (not sure why it was called Thai as it had hummus in it... but tasty nonetheless) and a cappuccino. Scott and his mom enjoyed their meals and coffee as well. As I mentioned, we did run into one person but it was not too awkward and I got a little work update, which is always nice.

I had IVIG again last week, so it was a little chaotic but still a good week. I got daily ambulance rides again. It really seems excessive when a taxi or HandiTrans would be fine, but I have no say in the matter. It was raining on Friday so they used a 'cover' on the stretcher. I made a joke about being in a body bag (looked like it to me) and they got all upset... Apparently that is a touchy subject to paramedics. Anyway, the treatments went fine with no adverse reactions. I think my body is used to getting it regularly now.

I packed my daily therapy into the afternoons and really worked hard to make up for the lost time in the morning. I was on my feet each day and my stamina is really starting to improve. I was in the 'Jolly Jumper' Tuesday and Thursday and am able to 'walk' the length of the hall between breaks. We are focusing on form now and trying to get a good gait. The other days were spent in the parallel bars where I can now do 6 passes between breaks. I'm also becoming less reliant on spotters and my arms. I'm a long way from independent walking but am making steady progress, so I'm happy. Our next goal is the platform walker - a walker with a half moon platform for your arms to rest on. It is a little more supportive than a regular walker. My physio thinks that this is perhaps a week or two away.

So there it is, a much overdo progress report. Further updates as events warrant....