My Legs Don’t Work Properly — Part 3: The Patient Rises

I was admitted into hospital 3 weeks ago tonight. A lot has happened since then. Whilst the first week was the most dramatic and the second week was the most uncertain, the last week has been the most positive.

In Part 1 I gave background to what all this is, and in Part 2 I basically moaned about what I needed to do to fix it all. Part 4 was written a week after this post and discusses the effects of it a little, with Part 5 being written post-discharge.

Now, a week into the rehab therapy, I can talk about what it’s like to learn how to walk again with a little more experience of trying it.

Originally I was going to devote a part of this post to some of the negatives of 3 weeks in hospital such as the claustrophobia and frustration that is inevitable in this setting. However, it read like a moaning rant, and it bored me, so it’ll certainly bore you. All I’ll say is the NHS is a wonderful institution that needs more money, and you should just shut up procrastinating on the detail and please do not vote Conservative in June and vote tactically for Labour, Lib Dems or Green parties, OK? Thanks.

Now, to the good stuff.

As I explained before the main things that I need to ideally “fix” are sensory perception below my navel, and control of my legs.

Sensory perception is not something anybody can fix, they can only shift the odds. By giving me lots of Vitamin B, the doctors are hoping that they move the odds a bit further in my favour. That, surprisingly, is starting to slowly work.

A test I was given a week and a half ago that scored me zeroes and ones almost everywhere was repeated on Thursday — I was getting mostly ones, and a couple more twos. Muscle strength was either the same or improved everywhere.

The exercises for this sound odd. I’ve been given a range of things with different textures (towels, aprons, whatever I can find), and been encouraged to rub them against my legs and feet to get sensation and nerve feedback firing. Yesterday for the first time in weeks I walked on a bathroom floor with a rough texture and could really feel it through my soles. Perception is coming back as I stimulate the nerves, and so that will continue to improve hopefully.

Next is the proprioception. A week and a half ago, this was preventing me from standing stably for more than a half minute or even walking at all, even with a walking frame.

I’m now standing stably without support for short periods, and I have started to perceive sensation more. Walking with a frame has been the real change, and I’m now able to walk short distances, albeit slowly.

I am being encouraged this long weekend to focus on standing stamina, and to do a few more short transfers with the frame. Next week I expect the wheelchair will be used a little less around the unit, and I’m hoping we’ll get to the point where it will be only needed for trips off the unit around the hospital and beyond.

Another aspect that has now arisen is balance, so I’m now being given more exercises that help with proprioception, balance and maintaining general muscle tone.

These include:

1. Stand up and don’t sit down for as long as possible. When I started this, I managed 37 seconds. Yesterday I got to 2 minutes 11 seconds. If I close my eyes however, 10 seconds is a serious challenge.
2. Walk slowly with the frame whilst looking at my feet. When I started this, two steps was hard. When I walked a couple of metres a few days after my operation, I had very bad hyperextension, and a chair needed to remain behind me at all times. I’m now walking 70+ foot without a chair behind me. Unfortunately, when doing this I’m putting a lot of weight through my arms into the frame which I need to pull back from doing quite so much before I get a proper high-five for my efforts — my arms are more tired than my legs at the moment.
3. Stand up with the frame. Take a step forward, then the other foot. Then step back. Watch the feet and knees. After a while, see if you can do it without looking (I’ve not managed that last bit yet).
4. Place your foot on the floor and slide it back and forth (perhaps with a sliding material under it — a slide sheet or even an apron). Focus on position, smoothness and accuracy. I’m getting “OK” at this.
5. Foot flat on floor, bend ankle up so toes are pointing straight up. When I do this, I get a real tightness in my lower calf and my toes frequently spasm. It’s getting better though.
6. Lie on a bed, place a heel on top of a ball, and then whilst keeping the foot on the ball being your knee towards you chest and back out again. This is way harder than it sounds.
7. Sitting up in bed, bring your knees up. Hold them there without them moving. Then, slowly and smoothly move one knee out and then back up. Then the other. I could not do this 10 days ago. I now can, just.
8. Using a piece of stretchy material (a Thera-band) around the lower thigh, stretch your knees out and back in again smoothly — it’s just light resistance training, really.
9. Stand up without pushing down on anything when lifting yourself (e.g. hands on chair or things around you). Basically lean forward whilst sat down — “nose over toes”, as they say — you lift using the back of the calfs alone, slowly, and then sit back down. Harder than it sounds when your knees are wobbly. And if you’re fat. And I am quite fat.

In addition to the above, time spent playing balancing games, time on the therabike and others are all added to the schedule. Combined with my strong antibiotics I’m frequently getting pretty tired, so it’s fortunate that lots of rest is also requested, hence me having time to write this nonsense.

Lastly, there is the fact that I might not improve back to a full recovery, despite the above efforts. They try to deal with this possibility via occupational health and psychology sessions.

The occupational health sessions are to ensure that even if I can’t move easily, I can still figure out how to cook, clean myself, get dressed, etc. and the psychologist is there to ensure that I don’t get too depressed about the fact I’m not as free and able as I once was and have the coping mechanisms to move forward. Both are doing their job, however are challenging in their own different ways.

Next week is “the goal setting meeting”. This is where they look at the progress I’ve made so far and give me estimates as to when I can expect to be more independent, back at home, back at work, likely to make a full recovery, etc.

It is, in other words, when I can finally start to make some plans about the future again. It’s scary that a meeting like this can have such an impact on us, but I’m looking forward to being able to get some hard plans in place.

By this time next week then, I’m hoping to have improved some more, we should know when a return to home and work is likely, we’ll likely have decided where we’re moving to and started the paperwork to make that happen, and I’ll be planning my first full afternoon out of the hospital in a month, to go for a pint with some mates.

Let’s hope next week is even more positive than the last.