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.

Venturing Out for Solo Walks

This week I ventured out and took walks out in the hall by myself, without a trailing wheelchair in case I needed to rest. This was a first here. I’ve been building up to it by walking around the apartment with a walker instead of the chair. Obvious differences were distance and turns; the hallway is straight and the apartment has me making circles around furniture and turns into doorways. But it was still good practice and the living room looks way bigger without the wheelchair sitting in the way.

My first trips took me from my chair out the door, then a turn and down the hall to the first apartment, then turning around and going back to the chair. Today I upped the effort and went past the apartment to the fire doors before turning around and going back. Not sure how many feet that is, but it’s getting closer to the whole distance I did before with a trailing chair. My legs and feet weren’t tired, but my arms were. Note to self: more arm exercises are in order. I won’t push my luck, though, and will aim to do what I did today twice tomorrow.

I also called and made an appointment for my Medicare Wellness Visit with my primary care doctor, as well as researched local dentists. I really need to get my teeth cleaned but was worried about how to handle the visit in the wheelchair. Friends in my Facebook group for spinal cord injury rehab gave me some good tips and I will call this coming week to make an appointment. Hmmm. I also need to make an appointment with the cardiologist for my annual visit.

What bothers – not worries, just bothers – me the most is the amount of edema I have in my right foot and leg all the way from toe to groin. The left has some, but the right is really excessive. I’m already taking prescription diuretics balanced by extra potassium, drinking water, adding as much movement as I can. I sleep with my feet elevated as far as my adjustable bed will let them go. And I try sitting with legs elevated rather than the chair with legs down where that’s an option. So I hope one of the doctors has a good suggestion.

I did something else for myself this week: new granite countertops for my kitchen. I loved my new granite at the house sooooo much and then left it to move here, where the kitchen was nice but dark. I have warm wood cabinets, black appliances, and dark floors. I came to really hate the black patterned granite that always looked as though someone scratched it. I was really lucky to update my counters with granite remnants from a local company that were expertly cut and installed. They look fabulous and really brighten up the kitchen, especially with my pops of red on the counters. I lived in white apartments for so long that I learned how to perk things up to suit me, and my bright red Kitchen Aid mixer is a big part of the decor as well as a kitchen tool.

Father’s Day 2022

I miss my daddy today especially, this fifth Father’s Day without him. At the same time, I’m so grateful that he was gone before last summer with my falls and medical stays. He wouldn’t have understood and would have tried to help, even though he was forgetting things and had falls of his own. I know he is safe in heaven with God and with Mommy and I don’t have to feel guilty about focusing on my own health problems.

My father was a People Person. He loved meeting and talking with people and never came away from a conversation without having learned some important part of the other guy’s life story. He knew how they ticked, what motivated them, what buttons to push to make his case, and how to get them involved. He was a born salesman and was in the right kind of job for his skill set, selling water meters to cities and town. His customers trusted him and when he changed companies, he brought them along because their loyalty was to him, not the company he represented.

Daddy made you feel important by the way he listened to you. He genuinely wanted to know what you thought, and he listened to children just as intently as he listened to adults. Sometimes I think he loved the little ones more, because they were more genuine and interesting – and they loved him. I remember him at a Christmas party in Houston years ago, the lone adult in a room filled with children who were climbing on him and telling him all sorts of confidences as though he was Santa.

Growing up, Daddy spent more time with my brother than with me because, well, let’s face it, they did Boy Things together such as Little League and other sports. I spent more time with Mom. But I cherished the times I had with Daddy, who traveled a lot for business. We shared a tendency to be overweight and a dislike of Mom’s no-dessert policy, and sometimes after dinner he’d invite me to go out for a walk with him. We’d march to a military cadence count through the tree-lined streets, with me talking about my day while I got exercise – and we’d end up at the ice cream store getting mint chocolate chip cones that we’d promise not to tell Mom about.

Daddy knew as a small boy that he wanted more from his life than what he saw in his small North Carolina town – and more than what his father did. He knew the way to do that was through education, and got a football scholarship to Duke University; he never looked back, especially after meeting and marrying my mom, who came from a different kind of background. Daddy married up and he knew it, and he loved my mother every day of his life. They had such a tight bond that we never saw or heard them fight, except that one time about PTA budget that really wasn’t a fight at all.

I think Daddy was comfortable in his own skin. He knew where he came from and where he wanted to go, and had a plan to accomplish his goals. He could think and plan for long-term success and was a team with Mom in setting and reaching their shared goals as a couple and as a family. He loved having money because he grew up dirt poor and knew what problems money could ease. He supported his mother for twenty years after his father died, and was generous in supporting family and charities throughout his life.

Bill Myers was a good man and a wonderful father. I always knew that he loved and supported me, and was as proud of my accomplishments as of his own. I loved him right back and am glad I was able to spend those last few years with him.

Happy Father’s Day, Daddy.

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.

Spinal cord injury and sensations

The spine is made up of sections and stacked vertebrae. The Cervical region (C1-C7) supports the neck. Below that is the Thoracic region (T1-T12) which is mid-back and protects the heart and lungs. Below that is the Lumbar region (L1-L5) in the lower back, which bears the weight of the body. Next is the Sacrum (S1-S5) which connects the spine and hip joints, and at the bottom is the Coccyx Region which provides attachment for ligaments and muscles of the pelvic floor. An injury to a section of the spine is referred to by the vertebrae level.

My surgery 10 months ago today was a lumbar laminectomy, sometimes called a “roto rooter” procedure, which cleaned out Levels T12 through S1 including the entire lumbar level. That’s a lot of sections, and when I tell people what was done, they are usually surprised by how much functionality I have. I’ve improved dramatically in terms of my ability to stand, walk, and function with activities of daily living. Something I haven’t talked much about (I don’t think) are the sensations I feel or don’t feel now. I don’t know which were caused by the severe spinal stenosis deadening nerves, or by the surgery, but it really doesn’t matter.

The ASIA Impairment Scale, developed by the American Spinal Cord Injury Association (ASIA), grades someone with a spinal cord injury (SCI) based on sensation levels and motor functions. It makes for a shorthand way to describe injury levels and set goals for therapy and improvement. The ASIA Scale includes a diagram showing the body divided up into zones which are connected to specific vertebrae sections of the spine. When the nerves are impinged or severed, the zone loses sensation and motor control, depending on the level of damage.

The other part of a spinal cord injury discussion is whether it is a complete or incomplete SCI. A complete SCI is any injury that fully severs the spinal cord at the injury site. People who suffer a complete SCI lose all feeling and function for anything connected to nerves below the injury site. An incomplete SCI only partially severs the nerves, allowing some signals to come through the area of injury. That person could retain some function and feeling.

The worst sections of my spine before surgery were L4-L5, with the nerves going to the right side of the body impinged more than the ones on the left side. These connect to my calves, ankles, and feet. Immediately post-op, I had a loss of feeling below the waist. I could move muscles – well, some of them – but without the ability to feel. Most of that went away after a few weeks and I can feel my waist, glutes, and most of my thighs. The left leg feels pretty normal except for the ankle and foot.

My SCI injury is incomplete; my ASIA scale level is probably a 3 or 4. My hip flexors don’t work much at all. My right ankle remains frozen, which is a functional issue, and the foot feels both numb and tingly all the time. Most of the time I feel as though I have a wad of toilet paper stuck in my butt. I don’t, but there’s a band of sensation almost like the circles of a target around the butt that are tied to the S3 section of the spine. That area has feeling but it’s weird.

My right big toe barely moves, which is sad. It was the first thing to go three years ago, when it went to sleep on a plane ride back from Boston and still hasn’t woken back up. All the toes are numb, and I’m afraid to cut my toenails for fear of cutting myself without knowing it. And my lower right leg feels as though it’s in a boot or cast or something from the arch almost up to my knee. I can’t rotate my ankle or even bend it much even though it feels as though I’m doing those things. Nothing moves. So the command isn’t making it from the brain to the muscles.

On the left side, not caused by spinal stenosis, I have meralgia paraesthetica in the outer thigh. The Mayo Clinic describes it as “a condition characterized by tingling, numbness and burning pain in the outer part of your thigh. The condition is caused by compression of the lateral femoral cutaneous nerve, which supplies sensation to your upper leg.” (https://www.mayoclinic.org/diseases-conditions/meralgia-paresthetica/symptoms-causes/syc-20355635#:). There is also decreased sensation and increased sensitivity to even the lightest touch. Yeah. It’s annoying and I find myself gently massaging the left thigh just to see if I can feel it.

I’m happy with the progress I’ve made with movement. I’m not happy with the sensation issues I still have. I don’t know if they will also change with time or if this is what I’ll have. Nerves are tricky things. They grow veeerry slowly if they regenerate at all. No one knows what will happen. “Just be patient” is what I hear from people who don’t have to worry about not feeling their feet.

And although I know it doesn’t do any good, I’m still kicking myself for not pushing harder to get my spinal stenosis treated earlier than I did, though I was working at losing enough weight to qualify for the surgery. I might have starved myself to qualify faster had I known this is where I would end up. But I didn’t and here I am.