Sunday, 29 March 2009

Progress at Three Years Post Injury

Progress at Three Years Post Injury

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.

Monday, 2 March 2009

Wheelchair Frustrations Part 3

Wheelchair Frustrations Part 3
(Saga of the exploding tires)

I have a dental appointment in a hour. Hmm, manual wheelchair tire feels slightly low, maybe I should top it up a bit. Okay, I'll consult the manual to see what the tire pressure should be. Oh yeah, neither of my chairs came with a User's Manual. Spinning the tire around I see "75 PSI" imprinted on the rubber tire. I trust that pressure applies to the tire in any situation, as used on a wheelchair or bicycle. Is that the maximum pressure or the operating pressure. Then again, does the pressure apply to the innertube or to the outside rubber tire,.....or to both???

(I recall that while waiting for the chair to be put together, the service person sent over didn't know what the pressure should be.)


I get the air pump and start inflating. Hard to get the pressure above 35 PSI with a hand pump. Sweating and grunting, I repeatedly check the pressure to see it go up a bit then loose that amount as I take the hose off for another measurement. Finally I coax it up to 65 PSI - checked by a mechanical and digital guage (both in agreement). One or two more pumps and.......


The tire explodes at around 65 PSI, 10 short of what is imprinted on the rubber outer tire. I have no spare inner tube so my wife calls up the wheelchair company's service department to see if we can get a replacement within the hour. The repair guy informs her that they don't have any in stock but I can place an order and they'll call when it's delivered. Hell, that'll help out a lot for those who are stuck out in public in the middle of some parking lot.

So I call up and cancel my dental appointment. I take off the tire and remove the inner tube to get the size (as I have no manual to refer too!!!) . My wife calls around and can't find any bicycle shop that carries that size. Finally one store has it in stock and she runs down to buy a few to have on hand as spares. Get it home and the valve stem is slightly too short and won't stick out far enough from the kevlar rim. Sorry, I'm not a cycling enthusiast so didn't know the stems might come in an assortment of lengths. Never occured to me and the sales person at the cycling shop never questioned me. Asked for the inner tube size and nothing more and he had the blown one for comparison if necessary.

So, not optimal but I could manage to get the pump fitting on and inflate the tire to about 35 PSI. Next stop was to buy valve stem extenders. This way I can use the common size tire/valve stem and not pay the inflated 'medical supply' store price (about 3 times the sports store price). Now the pump hose fitting fits over the stem with ease. Filling the tire is still another matter. My air compressor is a bit to aggressive and I don't have enough control - can overshoot the desired pressure too easily. The hand pump is difficult as the resistance is so great it is difficult in getting the pressure past about 45 PSI.

In the end, I never have gotten the pressure to the printed 75 PSI but manage to keep it around 65 PSI.

More Innertube Explosions:
On two other occasions the innertube exploded on me, thankfully never while I was out and riding in the wheelchair. On time the tire exploded after having sat in our hallway for about 3 days post trip. No use, no stress, not under pressure, not in the sun, - no warning- just explodes mid-day. The next time I had just left my doctor's office and the chair was in the rear of my van. My wife ran into the store for a few moments and suddenly the tire explodes behind me. Thankfully it didn't explode while in the doctor's office where surrounded by cardiac patients and infants. Thankfully too it didn't explode in traffic with my wife behind the steering wheel. Sounds like a shotgun blast going off.

Each explosion was on a different wheel and different innertube manufacturers.

Manufacturing/Quality Control Issue???
So at home I remove the rubber outer tires and inner tubes to check for debris or sharp edges. I may have found both. Some black kevlar shavings fell out, left over from the manufacturing process. also where the two halves of the semi-circle kevlar rims are fused to make an entire circle, the joints are somewhat rough. Perhaps this edge contributed to the explosion while damaging the inner tube while rubbing under pressure. Who knows? Not a big edge but I took what I could down with some sand paper to smooth it out.

Lack of Confidence in Wheelchair:
The tires are on and inflated to about 65 PSI waiting for their next trip. However, after spending $6300, I have a wheelchair I have no confidence in using in public. An explosion could happen at any time and as I have no manual, I have no idea if I can travel on a blown tire without doing permament damage to the rim. I'm sure the wheelchair supply company would be happy to sell me another new rim at their special price! Damned if I'm going to call them up after my previous dealings with them.

$6300 Manual wheelchair
... and no confidence in it's usability!