Out on my own

I finished formal out patient PT on June 3rd. I’m sure I’ll be back, especially when it’s time to transfer over to a rollator, which isn’t as easy to use as you’d think after hanging on to using a folding walker for almost a year. But after 10 months of therapy, it’s oh so nice to not have to be somewhere at a set time three days a week to do things that I can mostly do on my own.

I use the NuStep 4-5 times a week for 30 minutes and am up to level 5 on resistance. It still takes a while to get on the machine but I can get off in under 3 minutes. I’m also using my weight bars to do arm exercises every day. I’m using a 2-lb bar which doesn’t seem like much until I do 3 sets of 20 of whatever it is and everything burns. I need to be doing standing leg exercises at the kitchen sink, which I will do when I finish this post.

Walking is a bit of a challenge. The person I hired to walk with me isn’t working out that well because of schedules, since she already works for a bunch of other people. I’m spending half a day walking around in the apartment using the walker, trying not to run into cats who are fascinated by Mommy standing up. I don’t want to not be walking in the hall but don’t really have anyone to do it with me, trailing behind with a wheelchair.

Frankly, I know I’m not going to fall. I know what that feels like and all I’ve felt when doing hall walking has been the need to sit down if I walk too far. So I’m thinking about going out in the hall by myself and walking up one apartment, turning around, and going back again. And then doing that several times during the day. If I’m tired, I can stand and rest, but these are short well marked distances and I do not think it’s going to be a problem. I might be stupid here, but I don’t think so. I know what I can do and what my limits are. And if I can go when I’m ready, I don’t need to plan it around someone else’s schedule.

I’m not really expecting to get much better. I could be wrong. But my research tells me that surgery doesn’t reverse severe spinal stenosis; the damage is already done. At least the surgery will stop me from getting worse. And if what I have now is what I’m going to have, well, I can deal with it. Whenever I’ve been challenged and had to add new daily living functions, I’ve been able to rise to the challenge and get it done. Things like laundry, bed changing, and showers. Yayyy for showers! I’m sure there are other things out there to add, or maybe it’s just getting more comfortable and confident with the things I can already do.

My home-health therapist told me at the end of March that I should be prepared to find myself in exactly the same functional place in 6 months as I was then. Nerves grow when and how they want; people don’t really know what to expect from them. I don’t think I’ve gained much since then except getting back to walking after a rough back pain patch. My out-patient therapist told me that my body remembered how to walk (which is an improvement, because 10 months ago it didn’t know anything) so it will be easier for me to get back to movement.

No matter what, I stand up a lot. I’m in the kitchen doing dishes, cooking, fixing meals, getting food for the cats. I’m in the bathroom brushing my teeth, and standing in the bedroom to make my bed and get dressed. I do three-point turns from the wheelchair to the lift chair or the NuStep. I stand up to do laundry. All of these weight-bearing activities help keep the muscles strong and stop them from atrophying. I will NOT stop doing them, whether I’m walking in the hall or not. They have become normal, which is itself amazing. I don’t take them for granted, not after this past year.

And in the “That Didn’t Go Well” Department

I went down to the front desk late today to see if there was a wheelchair I could use instead of the crappy chair. They had two. One was too small and the other looked like it could work. But I transferred to it too fast and found myself stuck and unable to stand back up because it had desk arms, which are lower in the front with the higher padded part in the back. I need the padded part to be up front to get the leverage I need to stand. We ended up waiting for a friend on staff to come in and help. There was a great team of people keeping the wheelchairs from sliding back (both have brake problems) and one person on each arm to help me stand up.

I knew my legs would support me if I could just stand up. They did, and I was able to transfer back to my too-big crappy chair. I felt so stupid for not remembering to check the arms before I tried out the chair. I know better. But I am so grateful for the friends who came to my rescue, and for the skills I learned that helped me know how to facilitate that rescue.

Veronica at Olympic Center told me that it was my job to direct my care. To know what needs to happen and to tell other people what to do to make it work. I think I learned that lesson pretty well.

Standing isn’t so hard anymore

It’s no longer hard to stand up. I’ll bet you don’t hear that every day, do you? But I realized yesterday that I can stand up pretty much anywhere, without holding on to the walker or table, and that I’m no longer talking myself through the steps of how to do it: “scoot to the edge of the chair, line up the feet below the knees, tuck in the butt, suck in the tummy, lean forward, press down with the arms and move up on the count of 1-2-3.” Not doing that whole routine in my brain means that I’ve relearned the steps and they’ve become ingrained.

Back in August, this was such a very hard thing to learn and it remained hard to do for months. I had to rehearse the steps in my head, first dropping the count to 3, but still mentally checking off the other things. But the big thing is trust. You see, I didn’t trust that it would actually WORK and that I’d be able to stand up just because I wanted to.

I trust it now. And I stand up a lot, probably not as much as you do but certainly more than I did even a month ago. Each time it gets easier and I feel more normal. Sometimes I even forget that it used to be hard. Somehow this feels really big.

Therapy Progress Report

Just spent an hour with Harry the PT from Encompass Home Health. I warmed up on the NuStep so he could watch how I got on and off; he also adjusted my settings (my butt will be more sore tomorrow). Then he put on the old AFO’s and we went to the hall to walk, since it gives me a straight, unobstructed space for walking rather than go in circles in the apartment. I went about 250 feet with a few rest stops on the way. Finished up with seated leg exercises, then standing exercises at the sink.

Harry told me that he can see definite improvement in my stamina and ability in the 6 weeks since his first visit. I walk more comfortably and for a much greater distance (that first visit I could barely go from the chair to the kitchen). I’m getting up and down more easily and have more control over leg movements than I did when we started, because my legs are stronger and will only get more so as I use the NuStep. He anticipates at least another 6 weeks of twice a week therapy visits. Once I have the new AFO’s and we see how they will work and whether I can put them on by myself, the goal will be me for me to have my exercises and routines set so that I can just build on them without the need for a PT to watch me do them – or even without someone else on hand to follow me with a wheelchair. I may need that for longer walks out in the hall but it would be great to be able to just DO it on my own here.

Whether I walk every day or not, I have to be sure to get out of the chair and up on my feet in the kitchen or elsewhere to keep the muscles moving so they remember that they’re supposed to move instead of just atrophying. And I need to get out of the apartment and go do something with other people. I usually do that with a meal, at least, but there are social and learning activities here that are available, and I need to take advantage of them. I remember my grandfather touring us around his New Jersey retirement village, so proud of all of the amenities it offered even though he did none of them. I don’t want to be like that.

I’m being discharged from occupational therapy tomorrow with one final visit. I can do almost everything I need to do on my own, other than the shoes, and my big goal for OT was to be able to give myself showers, which I can now do. Yayyy.

Wheelchair and AFO’s again

I tried, I really did. But that pretty blue chair just wasn’t working for me. It felt a bit rickety and trying to stand up using the desk arms was not easy or pretty. I fell backwards into the chair again at least as often as I actually made it up. So I was relieved when physical therapy came on Tuesday, looked at it, and said it wasn’t the right chair for me. It’s not just my preference to have something different, it’s what I actually need, especially for standing. They offered to talk to the pharmacy on the phone if it would help.

I’m not sure what’s going to happen, to be honest. Right now I’m still using my borrowed therapy chair while I wait to hear back from the pharmacy. I have a borrowed chair and the blue chair that I bought, but what I *need* is a 20″ steel wheelchair with reversible desk arms and standard footrests – which is what the borrowed chair actually is. If they won’t accept a return, I might see if I could give the blue one to therapy and let me keep the borrowed one. Can’t work if I don’t ask, right?

My preference would be for them to take back the one I bought and get me a new chair that matches what I need. So we’re going for that first.

As for the AFO – it’s clear now that I really do need an AFO for my left foot as well as the one for the right. When PT had me walking around, even I could see that my right foot was stepping heel-toe but my left foot was touching down as toe-heel. I stopped using the left AFO when we couldn’t get the velcro to stay attached around the calf, with the approval of my then-therapist. But that won’t fly now. Maybe when the legs get stronger it will be different. But for now, I’m hoping the foot doctor who gave me the script for a new right AFO will write me another one for the left foot, too, without another visit. I just saw him last week and he looked at both of the feet and ankles at the time. I have a message in through the patient portal to check. I go to the orthotist to be measured for the AFO at the end of the month and it would be great to do both at the same time. Let’s hope!