Saturday, September 10, 2016

CIDP and Me - Up and At Them

This was a pretty big week for me, as those of you on my Facebook already know. I achieved a long elusive milestone in physio - standing up unassisted. I'm going to clarify what this means a little, as there has been some confusion. It's true, I have been standing and walking with a walker for months - it's how I'm getting up that has changed. Until this week I needed assistance from the physiotherapist (pulling me up using a belt and/or blocking my knees) along with the stability of a bar or walker to get up. Now I only need the stability offered by the bar or walker - the rest is done with  my legs and arms. It is a huge step (no pun intended) and really marks a new chapter in  my recovery.

Here is how it all played out... My therapist got back from vacation this week and was really impressed with how I walked in the parallel bars on Tuesday. I was straighter, my motions were more fluid, and my feet were facing forward the whole time. I knew that we were probably going to move things to the next level, whatever that would be. When I got there on Wednesday she said she wanted to see how far I could get up on my own. I was parked between the bars and had one hand on my chair arm and the other on a bar with my feet firmly planted on the ground. I gave a push with my arms and legs and, low and behold, I popped up to standing! I believe my reaction was "holy shit, I just did that didn't I?". She smiled and said that I did indeed. We both agreed that wine was in order.

Having achieved this feat of strength once, she decided it was time to take this party trick on the road. She suggested that Scott should come in to be cleared on spotting me so that I could stand at home using my walker. This was to be a delicate suggestion - recall that the last time I stood in a walker at home I broke my ankle and landed in hospital for months. There is an understandable nervousness about the whole situation. However, it is what it is and the more time I can spend on my feet, the better.

When I got home and told Scott what happened, he was more excited than I was. We called some family and sent some emails. I explained about the home spotting and he agreed to come and watch the following day but made no promises about being ready to do it at home. We decided to hold off on the official celebration until the weekend as it was an IVIG week and I don't like to drink while that is going on. We did invite a couple friends over to join us on Friday night.

Scott met me at physio on Thursday and watched as I repeated my feat (in the walker this time) and then walked the full loop without a break. Not only did I stand up again, I was able to go further than I had before and was putting much less weight through my arms and shoulders. Everyone was thrilled and Scott gave my physio a big hug. On the way out he did a little jump and clicked his heels, making everyone one cackle. He didn't get any training on Thursday but agreed to come back again Friday for it, which he did. On Friday we set up a walker against the physio bed so that it would not move and I practised standing and sitting with Scott standing by. I did this 3 or 4 times with no issue. We then moved over to the bars and I added yet another new trick to my repertoire - I walked the length of the bars with only one hand on a bar! I'm pretty excited about this too.

I will be trying out standing at home this weekend and am confident it will go well. I know the road is still long and slow, but it is good to reach this milestone. My next goal is to stand up using only the arms on the wheelchair for support... I'm not giving a timeline on this though.

We celebrated last night with a couple of friends and a bottle of Barolo wine that Scott got in Italy. SOOOO tasty. We have one bottle left and will save that for another milestone (maybe when I'm back to walking with a cane).

In other news, I went back to choir this week. It is the first 'normal' activity that I am adding back into my routine and it went really well. I was worried that my voice wouldn't be there and that the rehearsal would wipe me out too much. I was a little rusty at first but my voice is fine and my range is still there (or there enough). I was certainly tired by the end but it did not kill me. It was really nice to see everyone and to distract myself from myself for awhile. I'm glad I decided to go back.

So that was my week.

Ciao for now!


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