My Smartest Purchase This Year

I bought many things in the last year but my smartest purchase was my NuStep which I ordered just after Christmas. It was very expensive and felt like an indulgence. I was wrong; it’s been worth every penny. Why, you ask? Because my legs are significantly stronger, and stronger legs are what make it possible for me to stand up easily and to walk with a walker without falling.

I used the NuStep at my gym for at least a year before I went to the hospital last summer, so I was really glad to see and use it at my first rehab center last August. It wasn’t available at my second rehab facility, but we have one in my building up on the 4th floor exercise room. I just didn’t think it would be practical for me to always have to navigate there and hope no one else was using it.

When I ordered it, my original plan was to use it twice a day but that never happened because of shoes. I wear my cute zipper shoes without the AFO’s on the NuStep but need to change to my other shoes with AFO’s so I can walk. I’m making a wild guess that changing shoes is a lot harder for me than it is for you, but in any case, it takes time and energy and I hoard both as much as possible. It’s also often not very convenient to do several times a day.

I “do NuStep” (as a verb) 4-5 days a week for 30 minutes and am now on resistance level 5. I watch TV or read on my Kindle while I work out, often with a load of laundry in the wash. I can start a load, get on the machine and work out for 30 minutes, then move clothes from washer to dryer. That saves me from backtracking on thicker carpet, which hard for rolling the chair, so being able to piggyback projects makes me happy.

My legs are now wicked strong, or at least in comparison with last summer. The NuStep also works my upper body and I can usually feel it in my arms and across my back the next morning. Climbing on the machine is still a challenge. I use a leg lifter to move the left foot across the middle of the machine and to get the feet up on the pedals, and I wrap a gait belt around my thighs just above the knee to keep my right knee from flopping out while it’s working. Getting off is much easier and I can be back in my wheelchair within 3 minutes.

The machine itself is quiet, easy to set up, and easy to use. It was used, which helped keep the cost down, but in perfect condition. Ellie and Emma have accepted that it lives here even though it’s big and doesn’t offer them treats. Having it inside my apartment was another brilliant decision, if I do say so myself. I have no excuse for not using it because it’s always there and no one else is already on it when I’m ready to go. It’s much more practical for me than having a guest bed that’s never used.

If you have access to a NuStep at your gym, give it a whirl.

I don’t want to “adult” today

Both upper arms have been sore all week. Well, actually, for about 2 months but they’ve gotten progressively worse. Walking with a walker hurts because of the pressure applied with every step; standing up uses the same pressure on the wheelchair arms. Putting on my AFO’s hurts because I’m hauling the legs around using upper body strength to get them positioned into the brace and shoes. And using the NuStep also requires hauling the legs up into position on the pedals.

Physical Therapy decided I should not do any of those things this week (well, except standing; that’s necessary) to give my arms a rest while we figure out what’s going on. Instead of e-stim on my legs, I got e-stim on my right bicep followed by ultrasound, and I think it helped a lot. There’s still soreness, a deep ache, and arm weakness. So I’m off to the doctor tomorrow which is an adventure in itself.

My left thigh has been twitching and the neuropathy in the right foot is worse, or at least it seems worse. The “stocking” sensation makes it feel as though it’s in a cast. The right ankle hasn’t improved at all since August and my hip flexors are incredibly weak. I’m doing exercises, but my limits make it hard to get in a good position to work them properly. It’s very hard to pull my leg back and almost impossible to get it up on the footrest far enough to keep it from falling off. And my right foot/leg are very puffy from edema in spite of elevating them as much as I can and taking diuretics and drinking water. I think we’ll be talking about it tomorrow at the doctor.

And I’m feeling really fat, because I am. Although I can’t get on a scale, I know from the way clothes fit that I’ve gained back much of what I worked so hard to lose on Noom. Lots of explanations for that – obviously much less mobility, boredom, excellent food that I don’t have to cook, and needing comfort. Food has always provided that for me, much as I know it’s false comfort and that I’ll pay for it later. I’m really, really tired of feeling as though I need to diet and watch food all the time. I’ve done it my whole life and I’m still fat. Maybe I need to just accept it with its limits and move on. I did throw out most of the processed foods in the kitchen, which really wasn’t that much anyway, and am trying to make better choices. I know how to eat better; I just need to do it. Maybe that will be enough.

I don’t feel as though I have a lot of years ahead of me, which could just be that I just don’t want to have a lot of them with my limited mobility. I’m finding it hard to stay and be positive, and even harder to stay focused on doing more exercise. Sometimes it feels like that’s all I ever do now – exercise, go to lunch, and therapy. And this week, without the extra exercise, I feel like a slug. So today I’m just indulging in that and not adulting. I know for my mental and physical health that’s not good to do often but for today it’s fine.

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.

Goodbye, Therapy

Therapy is over, at least for now. I’m so grateful to Grace for her excellent care of me these last two months, and the progress I made with her help. She challenged me to do more than I thought I could do (can we say stairs?) because she knew I could do it, but she also listened when there was something I wanted to do or had problems trying to accomplish a goal. It’s on me now to keep going because I do NOT want to lose ground, though my knee problem is limiting me somewhat.

I do know I’ve lost some upper body strength in spite of using my arms to wheel the chair around everywhere. I have Therabands and small arm weights, and instructions from Susan on how to use them – I just need to actually use them instead of admiring them and leaving them untouched. So I’m going to rearrange things to get those weights closer to where I mostly sit here in my living room. If all I have to do is reach down to get them, I can do those arm exercises several times a day. Let’s start with once.

I’ve also gained weight. This isn’t terribly surprising since I’m not moving all that much and eating all the time – and because the food here is amazing and plentiful. I’m up about 17 pounds and I can tell by the way my body feels and the way my clothes are fitting. I’m not ready to make a commitment to working on weight loss again, but the first step is acknowledging the issue. I worked so hard to lose my weight on Noom and with MyFitnessPal, and I don’t want to go back to where I was.

On my last day of therapy, we went down to my old rehab pod area to use the giant scale. You can roll on with a wheelchair, or get up and stand using a walker, which is what I did. Then we weighed the walker so I could deduct it from the total to give me a realistic number. Which is important, because I have two doctor’s appointments before the end of the year, and they will both want me to get on a scale because doctors ALWAYS want you to get on a scale. But because I know the offices and know the scales, I know there’s nothing to hold on to and the step up is higher than what I’ve done in the last four months. I just don’t feel safe getting up on it, and my therapist concurred. So we arranged to get my weight another way and I’ll pass it along when I get to the doctor.

I’m learning that before I go somewhere, I need to make sure that the space is wheelchair accessible. And I need to be sure I don’t drink much of anything before I go in case their bathrooms are not workable. Even ADA compliant bathrooms may not have much room to maneuver. I also need to schedule my transportation; no more hopping into a car and just going when I want to go somewhere. I haven’t done a car transfer yet and am not sure really how to manage it coming from the wheelchair – from a walker, I could turn around and back in, but from the chair? Lifting my knees up is also a serious limit.

My legs still aren’t very strong. Honestly, who knew how much strength it takes to just stand up and walk around? I need to continue working on the leg muscles, and my therapist confirmed that using the NuStep would definitely help. The machine here is still broken so I’ve found a place to order one for my own apartment, and they’ll deliver and set up completely for an extra fee (of course). I need help rearranging some things in the room where it will go, and think I’ll wait for my brother’s Christmas visit for that. If I decide to sell it later, the same company will buy it back and refurbish it for someone else. But I know that having it right here, and an aide who can help me get on and off safely, will mean I’ll get the workout I need.

Because I want to be able to not use the chair so much. I have this lovely shiny red rollator that I want to be able to use – but I’m not ready yet. Grace explained that my legs aren’t strong enough and I’m putting more weight through my arms on the walker. That doesn’t translate to the rollator, which expects you to have stronger legs and be able to walk faster than I can. So for now, I’m still mostly in the wheelchair but walking in the hall every day with the AFO on the right foot to prevent foot drop. But I’ll get there and have my fancy rollator for when I’m strong enough to use it.

But I made cookies this week with my aide. That involved endurance standing, moving around the counters without falling down, and opening the oven and bending to move cookie sheets without falling or burning myself. Making cookies is part of Christmas for me, and it was important to be able to do this – not to eat myself, but to give away. I felt like a normal person and got a great sense of accomplishment as well as the fun of baking with someone else. The cats didn’t help.

Family Visit This Weekend

My wonderful sister-in-law Cece came for a visit this weekend, and it was sooooo nice to see her! She was last here in July helping me pack up umpteen boxes of stuff to give away before my move. Saturday afternoon we mostly sat around chatting, first in my room and then outside on a porch getting some lovely air. We ordered take-out Chinese food from Liang’s for dinner (yumm!) which was a delicious break from institutional food. She spent the night with an old childhood friend from Houston, went to church with them this morning, and came back about 3pm for some more visiting. I took the walker for a stroll around my “neighborhood” which is about 80 feet (I think) so she could see my walk, and she brought me dinner from Whataburger. More Yumm!

I’ve asked Cece and my brother to come help me move home when my discharge date comes, which I’m guestimating to be in another 3 weeks. I’ll know more about timing after my Care Plan meeting tomorrow. But I’m definitely thinking about going home more, and what I either need to know or know how to manage. Putting shoes on in a big part of that. Yesterday I managed to get the left one on after 25 minutes, but the right one was impossible. Something must be done, because doing it myself would require 3 hands and I only have two. I did some online research and found something that I think will work. It should hold my shoe securely while I wrestle the AFO splint and foot inside. I’m going to ask therapy to include this device in the list of aids and tools they get me before I leave.

I spent a lot of time today with my legs elevated because legs and feet are super puffy with water retention. The nurse wrapped both legs in Ace bandages for compression, which should be removed before I go to bed. But since they gave me a diuretic about 6pm, I’m sitting on the bed with my shoes on for as long as possible; I know I”ll have to go to the bathroom at least once soon, and I also know I can go to the bathroom on my own wearing shoes instead of the stupid green gripper socks. I hope I’ll be able to find someone to take them off when I’m ready to actually try to sleep.

I have a busy week ahead. PT and OT every day. Care plan meeting on Monday. Home Assessment visit on Tuesday. Haircut on Thursday (yayyyyyy Malorie for making a nursing home visit!). And rest. I need to remember to rest. It’s also part of my healing – that and seeing kitties on Tuesday.