Three years ago I had a Staphylococcus aureus infection on my spine and six months later in the rehabilitation hospital was told by two doctors, rather matter of factly, that I'd never walk again.
Although still rather rickety, I walk daily at my parallel bars and with a walker in the hospital hallways. There has to be some satisfaction in proving them wrong...
I was fitted for a pair of AFO (Ankle Foot Orthotic) which is a brace for the lower foot. Paralysed from the chest down, I have regained much of my previous action however what hasn't returned is the ability to raise my foot up (Dorsiflection). Pushing down with the foot (Plantarflection) is not a problem. So, when I try to walk, my toes droop down, pointing to the floor, and often getting caught with each step. The AFO holds the foot up so that it doesn't catch. Mine have a hinge with an insert permitting some movement at the ankle. They're formed plastic coming up the back and side of the calf to below the knee joint. Under pants and in shoes, they are not too noticeable. So with their use I can walk fairly normally without tripping over my toes.
I've ordered my own personal walker however, I always seem to fall through the cracks. The model I wanted with wheels on the front and posts on the rear are back ordered and I continue to wait, and wait. I hope to spend much more time out of the chair and walking when I receive the walker and hopefully this will allow the muscles to further strengthen and balance/stability to return.
So Here is a short summary of my current status after 3 years;
(1) Paralysis - After being paralyzed from the chest down I now can walk with the aid of a walker for progressively longer distances. Differences in muscular strength (due to disuse rather than nerve damage) still has be a bit wobbly but that is improving. Balance and coordination will improve as strength and improves.
(2) Pain - Still significant. Pain and discomfort has remained relatively stable as my mobility increased. The neurogenic nerve pain fluctuates from just below the knees to the toes both in extent and in intensity. It is always there, day and night, often so intense it is difficult to concentrate on anything else. Still a cross between burning or pins & needles. Gabapentin and Nortriptyline do nothing!!! Doc won't prescribe Lyrica because of side effect concerns.
The other pain I have is Sciatic nerve pain. From my injury I suspect the nerve transmission causes one muscle to be weaker or another opposing muscle to be too strong causing my pelvic area to distort. Not noticeable by eye but the result is that there is pressure (compression or stretching?) of the sciatic nerve causing tremendous pain in the hip which occasionally radiates down to the heel. Hurts when I sit but even hurts when I lie on my stomach. Hip at the joint throbs with each pulse of blood. Analgesics (pain killers) don't work, nor has physiotherapy had much effect on it. Not too many options when you can't sit and can't stand. Well, I can stand but not for prolonged periods of time. In fact the sciatic nerve hurts least when I'm standing as I suspect the pressure pushes the alignment back to where it should be. Temporary relief.
(3) Spasms - Still get the occasional spasm. Some days a good number, some days none. Some days just a few, other days prolonged periods of jerking. Some days spasms so intense that they lift me off the bed, some days gentle jerks. Can't link it to anything. Extensive workouts, longer periods of inactivity, diet, weather, etc - can't find anything that triggers it or reduces it. Totally neurological. Only constant is that they occur more in the late evening and at night.
There is what I can only describe as a "creepiness" that floods through the legs prior to spasms. Feels like the leg starts inflating and pressure builds within - pins & needles. Of course nothing visible happens. Between nerve pain and spasms is a nuisance which manifests itself as shooting shocks. Out of the blue I might get shocks to some particular part of either foot. So strong it feels as if you've put your toe into a 120V electrical socket. Zap!! Usually seveal in a row but they subside after a minute or so. Smaller ones are identical to a pin prick usual higher up the leg.
(4) Tightness - What I figured was tightness in the muscles from disuse I now figure is only partially due to inactivity. The more I exercised and stretched, the more the muscles loosened but only to a degree. Much of it is probably due to continuous release of acetylcholine from the nerve endings telling the muscles to contract. This is a problem I'm having with my feet and achillies and calf muscles. Standing for periods of time stretches them out but in a short period of time they revert and tighten up. This can be felt by pushing the feet against the floor while sitting, or by trying to stand again. A tight tingling can be felt running up the back of the calf as the tightness is trying to give once again. BoTox (Botulinum Toxin) may assist this by blocking the signal. I'm looking into getting this therapy.
(5) Proprioception - Has improved a fair bit but still not normal. I generally can feel where my feet are in space but when walking with the walker I have learned to watch my feet as I walk and it is hard to break this redundancy. I have a good idea of where each footstep is going to land but the temptation is to look down and verify. Hard habit to break! I wonder how amputees fitted with prosthetics do it?
So, in summary - I'm still wheelchair dependant but I can walk with the assistance of a walker. I hope to improve much more when my personal walker arrives and I receive BoTox.
I can transfer with little difficulty to either my wife's car (PT Cruiser) and even easier to my van (Dodge Caravan). With the van, I don't even need a transfer board. I just stand, holding onto the door frame and step into to van, then lift my feet up. Works just as well in reverse.
Pain is the greatest distraction and no health care professional has been able to offer me any relief.