Monday 8 October 2007

Time line - Summary of Change of Sensations No. 2

Update: September 2007
Time line - Summary of Change of Sensations No. 2;

Firstly a description of the last few months progress and observations then an update of the time line summary.

I am still amazed at the amount of muscle atrophy or at least ‘weakness’ that I had from my time being bed bound. During these months I continued to improve immensely with strength and leg mobility. The use of the Biodex, the Standing Frame (Sit to Stand Apparatus) and the pool has been immensely beneficial in regaining both. Nerve pain (burning) not is still constantly present in the feet but is usually at ankle level and below and of a low to moderate intensity. On occasion it can extend up to the knees and the intensity can increase to where it is a constant distraction. I haven’t been able to link the amount and extent of the burning to any outside factors such as exercise or diet etc. It seems it just happens.
The absolutely annoying leg spasms continued to plague me but not during all my waking hours as when in the rehab hospital. Spasms continued to come after intense exercise, usually in the evenings and one leg would start jerking uncontrollably, perhaps once every 3 to 5 seconds, either for an hour or up to perhaps 6 hours. At the worst, spasms can be so strong that if can feel as if the leg might pull itself out of joint Lying in bed I sometimes felt I could knee myself in the chest from these involuntary spasms. Very distracting and annoying!!!

As of about 10 -14 days ago, these strong spasms seem to have disappeared. (Knock on wood). I still periodically get smaller, milder spasms lasting a few minutes to an hour but I can live with those. The medication Baclafin use to combat spasms seemed ineffective during the last year and half as while I was on the highest possible oral dose, legs continued to “dance”. What I did find was that without the Baclafin, the actual jerking or spasms remained at about the same rate, however the drug combated muscle tension and the tendency for my legs to clamp together and the motion be more stiff.
Overall, I found that as I regained motion, I regained muscle tone and when this progressed, the muscular spasms lessened. My legs have regained all motion other than the muscles used to move the foot at the ankle and below. It was amazing to see how much trunk and abdominal tone I had lost. This resulted in severe back spasms which were at their worst first thing in the morning upon waking. I would almost be thrown into an arch with my back rising above the bed’s mattress. During the last month I found that I had the ability to turn onto my side and relieve the pressure on my butt. This was an immense relief!! The additional benefit from this rolling action was that it began to strengthen abdominal muscles and the oblique muscles further assisting the twisting and rolling action. It has been getting easier to turn on my side as a result. Lying on my side, I would attempt to raise my leg as in doing “half scissors”. This was almost impossible when I first attempted but now I can raise the straightened leg quite high and hold it. It still takes a bit of effort but it is getting stronger each week.
Bench work at physiotherapy has now been concentrating on these abdominal and trunk muscles as well. The pool has been instrumental in demonstrating the weaknesses in these muscles and helping to improve them.

Leg Braces:
In late August it was determined that I had progressed to where I could get leg braces and attempt to learn to walk again. At that time my physiotherapist had contacted an orthotics (1) specialist who measured and cast my legs for custom made braces. These braces hopefully be the first version in a progression that would help me to walk with some normality. These initial braces are huge and unwieldy which extend from the bottom of the foot and encase much of the leg right up to the hips and crotch. The braces lock at the knee once erect and have to be unlocked in order to sit again. The mechanism can be unlocked by an assistant or by the wearer by bumping backwards into a chair. The legs are made out of a plastic resin polymer. have a stainless steel knee hinge and are secured to the leg with Velcro straps. Because the knees lock to prevent me from falling over, I will have to walk like Frankenstein, rolling at the hips and swinging each leg forward in a wobbling like motion. We shall see how this works out. My hope is that the knees will strengthen to the point where the braces can be cut back down and my own knees will move and support me allowing a more normal motion. Standing at the parallel bars will begin next week.

(1) Orthotics - A specialist in bracing and support to assist support the motion of joints and muscles.

Update: September 2007
Timeline - Summary of Change of Sensations;

Late April of 2006 - discover that legs won’t move. Pain and discomfort was attributed to sprained back.

May 15th 2006 - Spinal operation and Laminectomy at T-5 to T-7 level to remove bacterial abscess. Remain paralyzed from lower chest downward. No pain, sensations or discomfort other than the realization of building spasms which peaked around September to October of 2006. These are more of a nuisance than a discomfort or pain.

Mid October 2006 - discover slight movement in legs. Can move knees in and out.

End of October 2006 - discharged for home. Slight movement remains secret.

November 2006 to January 2007 - some improvement in movement.

January 2007 - start to get burning pins & needles nerve pain in legs from knees down. Spasms reduce in frequency and some intensity. Hypersensitivity of nerves in hair follicles and altered sensation of pressure. Can feel temperature changes right down to my ankles.
Legs move freely and smoothly in and out, up and down and in circles when extended straight out. Joints bend at knees but not at ankles and cannot wiggle toes. Proprioreception is lost in the lower limbs. Some jerky motions or spasms in the limbs and back especially when lying in bed. Abdominal muscles regained activity and can sit upright with out much difficulty and without support. Rectal sphincter control has improved immensely allowing me to abandon a forced bowel routine.

End of May 2007 - motion continues to improve although more slowly. Spasms surprise me now and then and sometimes show up in the evenings after prolonged sitting or vigorous therapy. Burning pain or tingling remains and can move up or down the legs from feet to ankles or knees but is less severe than earlier. Perhaps some improvement in proprioreception.

May-October 2007 - Range and extent and strength of limb mobility has improved immensely over the last few months and within the last 20 - 14 days, intense leg spasms have all but disappeared. Minor spasms and jerks might still occur but are not nearly as severe or last as long as those previously. Nerve pain still is present, usually below the ankles but it too seems to be less intense and annoyingly distracting as previously. Abdominal and trunk muscle tone are being worked on. Next week I will begin trying to stand and walk with leg braces at the parallel bars.

Monday 1 October 2007

Canadian Paraplegic Association's Welcome


My Welcome To The Canadian Paraplegic Association

I'm sure the Canadian Paraplegic Association (CPA) is a fine organization with a mandate to assist para & quadriplegics to assimilate back into the world. However I found my welcome rather uninspiring. Now I wasn't expecting a marching band, noise makers & confetti when I rolled through their narrow office door conveniently located upstairs in the Rehab hospital I was in but I didn't I wasn't expecting the cold reception that I received.

You have to realize that people who find themselves in this Rehab hospital have just undergone a life altering injury of some sort and are rather fragile emotionally as well as physically. I expected that sort of understanding from the CPA and for them to treat people seeking information accordingly. When I rolled into their office, I found myself patiently waiting as the secretary finished her computer entry....and I waited, and...I waited. Finally the old school marmish woman glanced over her glasses and down her nose asking if she could help me. "Yes, I've come to sign up" I said. "For what?" she tersely replied. I would think that most 'inmates' in the Rehab would be inquiring about signing up for membership, but that assumption was my fault. Explaining to her that I was indeed inquiring about membership, she reached for two business cards, shoved them towards me and told me to call one of them for an appointment at their convenience as she resumed clicking away at her keyboard. Assuming I was dismissed, I made a point of thanking her for her assistance and I rolled out of the office back to my room. I just couldn't shake that cold reception so back in my hospital room I filed the business cards in the garbage can and decided I would find my own way without the assistance of the CPA.

Friday 14 September 2007

Physiotherapy Equipment

Physiotherapy Equipment
(A description and personal assessment of the efficacy of supporting Physiotherapy Equipment)

Improvement continued over the next few weeks of February of 2006 until my home physiotherapist thought all that could be accomplished at home had been. As I was still an employee of a local hospital, I was fast tracked into their ‘on-site’ physiotherapy department. Here I continue to receive a variety of therapies from stretching out the muscles that haven’t had a full range of movement for about a year. Some of the exercises are outlined below.

(1) Mat - I was taught to be able to transfer onto the low, dense mat on which various exercises could be administered. With my legs suspended in a sling, I was encouraged to move them in and out thereby exercising the muscles and stretching out the ligaments, tendons and muscles that had very little use in the last year. My legs could also be suspended in the slings with springs attached to the overhead latticework. In this configuration I would press my suspended heel down to the mat surface over and over again thereby exercising a different set of muscles. I was re-taught how to roll over and then stretch out on my hands and knees. Like a child learning to crawl again.

(2) Tilt table - is a full body length padded table on which you are strapped and then raised to an upright standing position. This table aids in diagnosing fainting and other disorders but in the case of a paraplegic, it is used to stretch out the Achilles’ tendons which have shortened over the months of non-use. Sessions for me have lasted for about 15 minutes each and while in the upright position I could work out further with weights or elastic “Therabands”.


(3) Standing Frame - the one I am using is somewhat different than the one pictured here. It is a metal frame with counterweights which through a sling that supports your butt, off-sets your weight and assists you to stand up from your wheel chair. The purpose of the frame is twofold. It stretches out the tendons as with the tilt table and exercises the quads and other muscle groups needed to stand and sit. I like the standing frame better than the tilt table as it is “active” in that I participate rather than letting the tilt table and gravity do the “passive” work. The tilt table makes me feel as I am always falling forward in spite of my actually tilting backwards. It is amazing how quickly this injury and extended bed rest can cause you to forget or be unable to feel comfortable doing such simple tasks as standing. I am improving but I wobble laterally and had some difficulty in standing straight when upright.

(4) MotoPed - is a set of bicycle pedals that I can drive my wheelchair up to and strap my feet into. There I can set a rotation speed as well as pressure or force required to turn the pedals. With the speed set the unit will passively rotate my feet in order to stimulate the muscles and get the blood and fluids moving. This keeps the muscles supple and perhaps assists in preventing thrombosis (blood clots). I set the unit to 60 rpm at which point it will engage and move my legs around in a circle. As I have regained mobility in my legs, I am not content to let the unit passively move my legs so I take over and pedal above the 60 rpm threshold taking the rpm’s to between 80 and 110 rpm. That is all my own work! In about 30 minutes, I can pedal the equivalent of 14 km (about 8.7 miles).

(5) Hand Cycle - again is a cycle unit that I can wheel up to and use to exercise and increase my metabolism by turning the arm pedals with my clenched hands. Tension can be dialled in to increase resistance. I generally add resistance (tension is rather subjective) and rotate the arms for about 20 minutes. Works up a sweat.




(6) Swimming Pool - this salt water pool is heated to above room temperature. A hydraulic lift with a seat or bed can raise the patient into the water. The salt inhibits many bacteria and makes the water more buoyant. This therapy is a real treat as for one hour per week I can get the pressure off of my butt. In it I can do exercises mimicking the tilt table and standing frame. Gripping a hand bar running along the edge of the pool I can find a suitable depth and do knee bends. Most other muscles can be exercised as well utilizing the resistance of the water. My years of canoeing has made me comfortable with water and I was able to swim the length of the pool under my own power with my legs fluttering in a kick stroke. An added treat is when the water jets are turned on. Turning my back to these water jets I can get an intense massage which feels particularly good on the area of my back where the surgical scars are as it still feels very tight.

Updates:

(7) Quad & Hamstring Bench - This is a simple bench which is a bit of a challenge to get on to from the wheelchair simply because of the height difference between the wheelchair seat and the seat of the Quad & Ham apparatus. Once seated there are two "arms" on the side of the seat onto which weights can be placed. By placing ones leg calf against an extension on the arm you can press down against the weight to exercise the hamstring muscles or by placing your shin against the extension you can lift the weights thereby exercising the quad muscles. I found that I didn't use this apparatus for very long as my muscles had already strengthened to where other exercises were much more beneficial in progressing.

(8) The Biodex - Probably a trademark name. The apparatus consists of an adjustable seat which faces a mechanical post. This post has a variety of attachments which are chosen depending on the injury and exercise required. In my case, an arm was attached onto which my leg was strapped. I would move my leg my knee joints extremes (first straight out then bent at the knee over the edge of the seat). The limits are entered into the machine and these parameters become the range over which the leg motion will be measured. The apparatus has a second part which consists of a computer, monitor and printer. The computer is used to set the physical parameters of the exercise. The range of motion, the resistance etc. The program can vary within a session as I explain further.

Once seated and the parameters entered the machine beeps and I try to kick (straighten) and contract (bend at the knee) as hard as possible - up and down for 10 repetitions. There is a 20 second rest period and the sequence repeats, perhaps at a different resistance. Sometimes it is harder and other times it is lighter (easier). This is repeated for a pre-set number of times, often 10. The computer can measure the force exerted by the quad muscles and the hamstrings and can keep a record of the total work done. I did this exercise each of 4 days of the week for several months. Retested at that time my exertion and total work done could be compared to my initial results. A computer printout shows the percentage improvement and of which particular muscles. I was happy to find out I had improved 60-100% depending on the muscle group. It also calculated that there was less than 10% difference between left and right legs which means that both sides have, for all intents and purposes, the same strength and that my injury resulted in symmetrical damage. This machine was useful in both strength training and in evaluating progress made.

(9) Parallel Bars - I am about to progress to the parallel bars where I'll try to master the new custom made leg braces that I have obtained. More on those later. The parallel bars simply assist one to lift, stabilize and balance once standing from the wheelchair seat. It is here where one learns to walk again by taking steps.

(10) Watch this space
- I’m sure other exercises and apparatus are in my future.



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Tuesday 7 August 2007

Sensations Revisited

Sensations Revisited
(Changes in my Condition and Sensations)

Below is a timeline describing my injury and resulting changes in motion, sensations, pain, discomfort and recovery. A summary can be found at the bottom of this post for those not wishing to read the entire description. Medications mentioned will be discussed in an additional post.

* * *
It all started in mid April of 2006 with what I thought was a sprained back, with the exact same sensations as I had experienced twice before in my life. As my family doctor had just given up his practice, I went to a walk in clinic. The doctor concurred with my assessment and prescribed an analgesic (pain killers) and a muscle relaxant. I returned to my bed and somewhere along the way slipped into a fog of semi-consciousness. I recall trying to overcome excruciating pain in a failed attempt to make it to the shower. Flopping back in bed, I probably lay there stewing in my own perspiration for several days. I lost count of the days before I came through the haze It was then that I had the sick realization that my legs would not move. I don’t recall if my back pain was still present My impression is that my pain lifted as I came out of my fog and realized my lack of leg motion.

On May 1st, I was admitted the emergency department of a local hospital where I sat in limbo for some 12 hours before a true initial assessment was made and supplement tests scheduled. After a battery of tests, it was the MRI that revealed a spinal abscess. I was started on two very potent antibiotics, Vancomycin & Gentamycin which in theory should cover all of possible bacteria which might be responsible for the infection. The bacterial culprit was identified as Staphylococcus aureus. On May 3rd, I was transferred to a major Toronto Hospital were further antibiotic intervention could be administered followed by surgery if required. The toxicity of the two antibiotics I was started on had affected my kidneys and caused them to start shutting down. Knowing the infecting organism, the antibiotic therapy was fine tuned by switching to the much less toxic cloxacillin. My Staphylococcus aureus was susceptible to it as it was not the highly resistant MRSA or Methacillin Resistant Staph aureus. (for all intents and purposes, Methacillin & Cloxacillin are identical in their mode of action.

As the antibiotic therapy did not eliminate the infection, surgery would be required to excise and drain the abscess. On May 15th, I underwent a 4 hour surgery after which I found myself in the critical care and intensive care departments. I found myself in excruciating pain and living a hellish distorted reality which I attributed to the Morphine I was receiving. As the pain of the surgery began to diminish, I realized that I now lacked any motion from about my mid chest down to my toes. The remainder of my time at this hospital was spent getting my strength back. I was finally discharged on June 28th free of both pain, sensation and movement from my chest down,

As I was not yet well enough to go home, policy has it that I should be returned to my originating hospital for additional recovery and therapy while pondering my further options. I received some very basic passive physiotherapy while bed bound. It was several weeks into my stay at this facility that I noticed that if I touched my right thigh, my leg would often jump. It was my first experience with spinal cord injury spasms (1). Other than this curiosity, I remained pain and sensation free until I finally was granted admission to a specialized spinal cord injury hospital in Toronto.

After six postponements I finally was admitted to the Spinal Cord Rehab facility on August 17th. There I went through a complete assessment by a variety of disciplines. Pins pricks were used to map the extent of my sensations which I was to discover I did not have from about my belly downwards. A variety of physical tests were administered after which it was proclaimed that I was weak. I almost felt ridiculed by one doctor in the way she informed me that I should normally be able to overcome the force applied by my cocky female intern. With a shake of her head she told me that I was weak. No s**t!! After two months in bed and major surgery, I would have suspected the same.
This was to be the first and only physical assessment I would receive until my discharge at the end of October. Other than documenting changes in my limb flexibility, this assessment closed the book on my physical state.

During my stay at the Rehab facility, I had no sensation, pain, discomfort or movement from my waist downwards. (My chest to waist was somewhat of a transition zone). The only annoyance I was plagued with were spasms. I often found that my body was peaceful on waking. Once I moved my upper body or touched my lower limbs, spasms would start and increase during the day. They would cause my legs, either one, the other or both, to jerk uncontrollably sometimes once or twice an hour or sometimes every few seconds from dawn to dusk. This could drive you crazy!!! (medication in another post)
One evening in early October, I lay in my darkened room only illuminated by the light of my flickering TV screen. Something had distracted my eye and I glanced down to the sheet covering my legs. I thought I saw a slight movement but felt no spasm. I tried to move my legs and it happened again. The sheets slightly buckled and drew taught again. Funny, I didn’t get excited as I wondered if it really was an illusion. On waking the following morning I tried again. They moved! As I found indifference and negativity to permeate this facility, I did not reveal this motion to any staff members. I didn’t want to hear that it didn’t amount to anything.

I was discharged for home on October 29th after about a half a year in various hospitals. I found myself in limbo as Christmas was fast approaching. I continued to find a modest increase in motion but it wasn’t until the end of January of 2007 that I was able to get a community physiotherapist to come to my home. At that time I was presented with a variety of exercises that I could do on my own daily. It was also in early January that I began to develop a variety of sensations. One of the first sensations I noticed was a burning pain that began to develop in my lower legs. It can only be described as somewhere between a burning pain to intense pins & needles. As if your limbs were submersed in extremely hot water. The sensation could vary from about knee level down to the toes or just from the ankles to the toes. The next sensation was that of hypersensitivity. This was first recognized when I pulled my bed sheet up higher and found that every hair follicle on my legs almost screamed. Even the slightest breeze on my bare legs could be felt with great intensity. Nerve sensations were altered as well. If I tapped my fingers on my lower legs, the action would send electrical shocks shooting up and down the limb. Any pressure would be felt as very intense or sharp. Spasms, for the most part have decreased in frequency and intensity. They seem to be worse on days after intense stretching in physiotherapy and in the evenings after having sat in my chair for numerous hours. Some spasms are preceded by a few seconds with what feels like a pin prick, not necessarily at the site of the muscle that will eventually fire. Some intense spasms are announced by what feels as if you would have stuck your toe into a 120V electrical socket. Luckily these are few and far between. Temperature sensation has also returned to a significant degree.

When I first began to receive physiotherapy at the Rehab Hospital my injury would not allow me to sit upright. My abdominal muscles would not activate and I felt as if I were a rag doll or one of those “bobble head” statuettes except that the spring was in my midriff. I would flop over. I cannot even begin to describe the awful sensation and mental impact of this inability had on me. It again was in early January when I found myself reaching for a compact disc to put in my computer drive and realized that I had actually come away from the back of the wheelchair seat. This mobility slowly increased over the next few weeks but it wasn’t until I got to the hospital physiotherapy department and started doing the mat exercises that I really noticed a significant change. Almost immediately I began to feel a tightness around my abdomen which continued to grow. With each passing week muscle activity grew stronger and more pronounced. At present I can reach around and sit up quite easily although not yet from a fully reclined position. The downside is that I feel that my middle is wrapped tightly in an elastic band. I personally explain this as the nerves which were damaged by either the initial infection or the surgery to excise the abscess now have once again had their connection restored but that the muscles they activate are still contracted or atrophied and that further exercise is needed to restore tone. I have an odd feeling that I have this active muscle layer but that the excess weight I carry is a separate layer floating above the muscles. Quick shifts of position gives me the feeling that I am “sloshing” about. Never had such a feeling prior to the injury. I am hoping that with continued physiotherapy I begin to feel as one and not as individual layers. The sensation is difficult to describe.

One rather distasteful aspect of an injury at my level (as any are pleasant) is that you lose control of your anal sphincter and bladder.. Methods of dealing with urinary problems were discussed in a previous post so they won’t be repeated here. As for the nasty anal problem; here goes - it was evident from regaining consciousness after my surgery that I had lost control of my bowels. A distasteful situation for both myself and my nurses. At the Rehab Hospital I was asked one morning when I would like to receive “my treatment”? It was never explained to me what a “treatment” was about but I soon gathered from overhearing conversations etc. that the treatment was a way of training one’s bowels to get used to a cycle where on pre-determined days (every other). I would be administered laxatives in the evening and then, the following morning, I would receive a suppository which would induce spasms clearing my lower bowels of fecal material. What was stressed was that the strict adherence to the routine was mandatory if “accidents” were to be avoided. Well, this did start to work and worked until I was discharged after which the system seemed to fall apart in spite of my dedicated effort. The suppository wouldn’t work when suppose to but would kick in half way through the day at the least opportune moment. As you can imagine this had both physical and mental consequences. Around March of 2006 it was more difficult to insert the suppository because the sphincter began to tighten (insert joke here). As nothing was working as it should I decided to scrap the entire regime and go back to square one. No laxatives and no more suppositories. And it worked. My body returned to a more normal state and I could hold my movement to some degree and go when I needed to and not when the calendar told me I was suppose to go. On my discharge there was no mention that my condition would change and how I should cope with it. Community health workers and family physicians are not well versed in this situation and cannot offer much advice. Sometimes you just have to work things out for yourself.

The only thing that seems consistent with my injury’s symptoms is that nothing is consistent! Nothing really correlates very well. Diet, exercise, stress, weather etc.? Just when I think I see a pattern of my pains or spasms, it seems to tease me and change.

* * *

Timeline - Summary of Change of Sensations;

Late April of 2006 - discover that legs won’t move. Pain and discomfort was attributed to sprained back.

May 15th 2006 - Spinal operation and Laminectomy at T-5 to T-7 level to remove bacterial abscess. Remain paralyzed from lower chest downward. No pain, sensations or discomfort other than the realization of building spasms which peaked around September to October of 2006. These are more of a nuisance than a discomfort or pain.

Mid October 2006 - discover slight movement in legs. Can move knees in and out.

End of October - discharged for home. Slight movement remains secret.

November 2006 to January 2007 - some improvement in movement.

January 2007 - start to get burning pins & needles nerve pain in legs from knees down. Spasms reduce in frequency and some intensity. Hypersensitivity of nerves in hair follicles and altered sensation of pressure. Can feel temperature changes right down to my ankles.
Legs move freely and smoothly in and out, up and down and in circles when extended straight out. Joints bend at knees but not at ankles and cannot wiggle toes. Proprioreception (2) is lost in the lower limbs. Some jerky motions or spasms (?) in the limbs and back especially when lying in bed. Abdominal muscles regained activity and can sit upright with out much difficulty and without support. Rectal sphincter control has improved immensely allowing me to abandon a forced bowel routine.

End of May 2007 - motion continues to improve although more slowly. Spasms surprise me now and then and sometimes show up in the evenings after prolonged sitting or vigorous therapy. Burning pain or tingling remains and can move up or down the legs from feet to ankles or knees but is less severe than earlier. Perhaps some improvement in proprioreception (?) as when I first started on the MotoPed foot cycle I could not pedal unless I looked at where my feet were. Now I can close my eye and visualize the motion.

Future - watch This Space -for more changes as they may occur.
See October post 'Sensations Revisited 2' with updates on changes that have occurred after May 2007.



(1) Spasms are involuntary muscular contractions or jerks caused by a spinal cord injury. These seem to occur below the level of the injury.
(2) Propriorecepton - the knowing of where your limbs are even with your eyes closed. I may not know that I have my legs crossed.

(This timeline is presented for those interested in such injuries and as possible encouragement for others that find themselves in a similar situation. It must be remembered that as individuals, we are all different and similar injuries may present themselves differently person to person. The level and severity of the injury also will determine the symptoms, after-effects and possible recovery. This is simply my story.)

* * *

Sunday 8 July 2007

Accessibility & Comfort

Accessibility& Comfort

The world has certainly gotten much smaller and more challenging overnight!

Having arrived at my rehabilitation hospital, I was too new at this “game” to have any expectations. In retrospect I suppose a common assumption would be that such a facility would be designed, laid out and geared towards making the facility as “handicapped friendly” as possible. For the most part this was the case, but as with everything, there is always room for improvement.

One of the greatest obstacles encountered by any institution is time. From the moment a ‘state of the art’ facility is constructed, it is already becoming outdated as the months pass. New innovations that are created and cannot always be retrofitted into the existing building. Funding is a perpetual problem for any organization. Taking those factors into consideration, obstacles, challenges and irritations were encountered. Some might be easily remedied while others would require a major alteration.

On admission I was bed-bound and immobile. The room I shared with one other patient was immaculately clean and laid out in a manner to provide adequate privacy. My personal items had arrived with me and the first chore was to find a convenient and accessible location to store them. Without lower body mobility, my range of accessibility (reach) extended on each side of the bed from about my knees to my head. The head of the mechanical bed raised and lowered adding a few more precious inches to my immediate world.

My clothes were placed in a closet built diagonally into the room. This seemed to be logical as it would at some time be easily approached but the folding doors projected outward somewhat blocking the opening. Not a big problem as I would not have to use it for some time to come.

I took stock of what I had at hand. To my right I had a desk which extended from the rear wall about 2 feet. It provided a flat surface with about 2 square feet of reachable surface. I had to lower the bed and reach way back to obtain anything placed here. The desk also contained a cabinet with three drawers. With effort, I could manage to reach backwards and pull open the upper and middle drawers. There I placed my ‘walkman’ and Cds , a notebook with pencils, etc. Hospital beds have no headboard so there was no storage there. That was about the extent of what was immediately available. There was a mobile hospital ‘bed table’ used to place meal tray upon. Clearly this could not used for anything permanent except for meals. A nurse did find another older rickety model which I placed lengthwise on the opposite side of my bed. The wheels were quite seized so it would have to stay where placed. I was warned me that if admissions increased I may lose the table to another patient. The room was laid out to initially accommodate four patients but had now been designated as semi-private. Because of that, the opposite wall was a mirror image of my setting but without the bed. As the desk itself was attached to the wall, I had my wife scavenge the lockable desk cabinet and wheel it to the left side head of my bed next to the hospital table. This gave me a total of about 6 square feet of precious flat surfaces for my 3 month stay.

My wife had purchased some small plastic baskets at a local “Dollar Store” which served to organize my items and prevent them off of the flat surfaces. These were distributed over the tables and with some effort all could be reached. Everyone has personal hygiene items such as combs, toothbrushes & paste, razors and the like. A jug of water, cans of pop or juice, a few snacks etc. all had to find a home as did my lap-top computer and books.

Attached to the wall above my bed was a 3 foot long fluorescent light fixture which had four settings activated by a single pull-string . Lower reading illumination, upper ambient illumination, both on providing bright room illumination and ‘off’. This was nice but the pull chain had long been broken and a piece of string had been tied to it. It would dangle and get lost so I had to scrounge around to find another string which I would then tie to my TV monitor arm so it would be reachable.

That was my immediate world.

What could be done to improve my world? First of all, we all have possessions which are dear to us. Some are personal items such as pictures or books, music etc. which provide support and aid in our recovery. Others are necessities such as a phone, toiletries, medications and the like. Each must have a secure and accessible location. Tables or cabinets on hinges or wings that could be swung out to allow access by nursing staff then to be swung back in when finished would have provided much more storage. This would be an innovative design that would improve any such longer term facility. Flat surfaces had no raised edges. I had a perpetual fear of having some item roll off a table and drop on the floor where I would have to page a nurse or wait for one to appear to retrieve it. Such a small change would make a big difference.

The TV support bracket was placed right behind the bed. When extended to its fullest position, the TV was dangling right in front of one’s face making it difficult to see. A minor irritant but an irritant nevertheless.

On acquiring my wheelchair, I had the opportunity to begin exploring the facility and grounds. In general the facility was laid out logically. Improvements were ongoing so there was the inconvenience of construction with the anticipation of greater accessibility.
In the cafeteria the some vending machines were placed in the corner of the room where they could be approached from only one side. Wheelchair leg supports would often hit the wall making the reaching for the beverage difficult. The vending machines dispense port was too low for many to reach. If the machines were placed in a central location and slightly raised accessibility would be improved.

Elevators were handicap friendly with both rear and front doors. This allowed wheelchairs to exit without having to turn around. An overhead mirror gave a better view if backing out of the lift. Buttons were in Braille and a tone announced the floor.

Doors could have been improved. Granted, the front was shut due to ongoing construction. A side door was activated by a sensor and allowed easy access until it too was shut down for construction. A back door leading to an outdoor park-like area was also on an overhead sensor but the door was so narrow that I could barely scrape through. Access to the chapel was easy but when trying to exit I found that the activation button was placed so close to the door that when pressed, the door would swing out and hit my chair before I could back out of the way. Sensing an obstacle, it would shut again. This comical routine repeated itself a few times until I managed my escape. Held hostage by God!

Bathrooms had sinks which accommodated wheelchairs but the taps were still set so far back that they were difficult to reach. I arranged some personal items to make them convenient only to find them pushed far to the back after the cleaning staff came through. Just a laugh and not a problem.

Other conference and meeting rooms had no door openers, were far to narrow to comfortably accommodate all the wheelchair sizes present or had sharp 90 degree turns immediately on entering. Navigation was often a challenge.

Light switches were sometimes difficult to reach. The problem was not so much the height but rather that they were sometimes blocked by furniture and therefore inaccessible.

Garbage receptacles should have been higher. Trying to fling a piece of chewed gum into a small bin on the floor would inevitably end up stuck to the wall, the floor or the outside of the container itself. A small change would make things easier and possibly more hygienic.

Newspapers could be purchased but the vending boxes were located outside a door that was soon closed down because of the renovations. Two papers were represented but only one box was stocked. The mailbox was located here as well. To the credit of the hospital, they were moved to the front of the building when the main entrance reopened. Presumably variety of papers, sundries and treats will be easily available when the newly constructed ‘variety shop’ opens.

The gymnasium and physiotherapy rooms were easily accessible and well laid out.

The grounds themselves were beautiful with a ravine like setting and paved trails where one could escape the institutional like atmosphere if only for a moment. A beautiful garden had just been constructed where you could catch some sun, lose yourself in a book or just enjoy the scenery.

The hospital provided two common area internet computers which the patients could use. The maximum capacity of the hospital is about 60 full time patients. The popularity of the computers was evident by their continuous use. I was dismayed to see patients using the computers for hours on end playing games such as 'solitaire' thereby preventing others from using them for correspondence and research. Other means of providing this type of entertainment should be considered. Although signs stated that the computers were for "patient use only", visiting parents would often park their kids there to entertain them while visiting. It is my understanding that the hospital was reluctant to expand the number of computers or to introduce hospital wide wireless wi-fi internet service as part of the recuperative process is to mingle and interrelate with other patients facing similar challenges. Rumors were that wi-fi would be introduced as they realize that many patients are from distant towns and correspondence with family and friends is important in the recovery process.


The argument could be made that the hospital should not be made overly accommodating as the real world would present these, as well as more challenging situations. This would be a learning experience. On the other hand, perhaps life at the rehab should be made as easy and friendly as possible during these early traumatic and stressful days.

All in all the facility was excellent but if the considerations stated could be implemented, it would make it that much better. With the ongoing renovations I expect that many of the issues raised will be addressed. My observations are not intended as a complaint but simply suggestions which might make this traumatic change in life just that more comforting.

* * *
I have purposely not chosen to identify the facility by name but anyone with some insight can determine which institution I am referring to.

The hospital provides service to a wide range of spinal injury patients. Some are ambulatory, some paraplegics and yet others quadriplegics. My assessment is from the perspective of a paraplegic. To others the facility may present itself more or less challenging.

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Wednesday 6 June 2007

Canadian Vs American Health Care Systems

Canadian Vs American Health Systems

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Americans are often heard to be envious of the Canadian Socialized Health System and on the surface it may appear we have the better deal. But what happens when you look at the systems from a somewhat different angle?

Americans do not have a universal socialized health care system therefore they must find the finances to pay for medical expenses out of their own pocket. They can obtain medical coverage either through a private insurance plan or through their employer. The insurance provider or HMO (Health Maintenance Organization) might dictate which doctors, labs and hospitals are accessible to the patient. Pre-disposing illnesses could disqualify someone from obtaining coverage and acquiring a major illness may lead to non-renewal of the policy. U.S. hospitals are for the most part private. Many lower income citizens, who may need the services most, often suffer poor health or the consequences of untreated illnesses because the price of insurance is out of reach. No money up front - No treatment!
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Canada has a universal socialized health care system which is paid for by the citizens of via taxation by the Canadian government. Everything from routine visits to the doctor’s office to major transplant surgeries are covered. The ailing citizen never has to show his wallet in order to receive heath care. There are, of course, conditions. In general, medical expenses are covered for all services and procedures required to maintain or restore a reasonable level of health. Many cosmetic and some elective procedures are not covered. For other medical necessities such as vision, hearing or dentistry, private insurance is available privately or through one’s employer. This extended insurance might also cover items such as ambulatory braces, home oxygen, drugs to wheelchairs.

Let there be no misunderstanding, in a life altering illness such as my paraplegia, there are plenty of expenses not covered by any system thereby falling on my own shoulders for payment.

With aging “Baby Boomers”, the Canadian health system is becoming overwhelmed by the shear number of patients requiring treatment. Cutting edge technologies are expensive so too few sites have the equipment or the expertise in these procedures. Where applicable, some patients are already being sent to the U.S. for treatment. This increasingly greater backlog has helped create a hotly debated controversy.

Should Canadians be treated equally and only have access to the current Canadian social medical system as our source of health care? The argument is that private (medicine for profit) clinics create a “two tier” system where the more affluent citizens will be able to afford better and more timely health care than those with more limited incomes.

The government is fighting private clinics and the so called “two tier” system tooth and nail. But the fact remains that Canada has always had a “two tier system”. Does anyone believe that some professional star athlete has to wait months or even years for knee surgery? Do you think that politicians wait in line for MRIs or knee replacements? No, they go to the head of the line or have procedures paid for when treated out of the country.

Are patients who have the financial means and willing to pay and additional fee for faster service unfair for jumping the queue? Is it unfair to the less affluent public? The fear lies in the belief that once the crack between public & private health care is created, the chasm separating the two will steadily increase with intellectual and monetary investment gravitating to the private sector. On the other hand, by diverting the paying customers, private ’pay for service’ clinics may open up more spaces and speed up wait times for those who will still rely on the public social health care system.

The question now is “which system is better? The American or Canadian?”

Far from being a socialist, there are several services I do believe should be universally accessible for a nation’s citizens. Education and Health Care are two of the most important. All citizens should have unhindered access to a robust basic education and no one should have to show their wallet in order to receive medical treatment Without your health, you have nothing!

While at the Rehabilitation Hospital I noted that the gymnasium closed down during lunch hour, late afternoons on weekdays and on weekends. The equipment sat idle as did the patients, which seemed like a waste of resources and taxpayer’s money alike. Inpatients were delayed receiving some of the treatment necessary to return to society and get off of the healthcare budget.

Chatting with a nurse during one of those weekend ‘lockdowns’ we discussed this situation. The nurse commented that “yeah, we need competition as an incentive to improve”. That comment rang true.

With the American ‘pay for service’ system, each hospital vies for your healthcare dollar by being better than it’s so called ‘competitor’. As the private system exists for profit, it’s auditors are diligent in making sure waste is cut and money well spent. Yet success depends on attracting patients to their facility so they try to attract the best doctors and offer the best health care programs possible. Competition drives development, innovation and excellency.

In Canada, each procedure has a cost associated with it and every doctor and institution gets reimbursed the same amount by the government. Why improve when they all receive the same payment for services rendered. One hospital is about the same as the next to patients. Hospitals, like some ‘fast food’ outlet, offer you the same ’medical burger’ regardless of what part of the country you are in.

In the U.S. hospitals such as Rochester Minnesota’s Mayo Clinic, Boston’s Brigham & Woman’s Hospital, Buffalo’s Roswell Park Cancer Center or Los Angeles’ Cedars-Sinai hospitals are noted for their excellence and have a patients continually investigating them over others when faced with potentially life altering ailments.

So the question remains. Which is better? A system which has a tremendous backlog of patients waiting for services in an institution that has no real drive to improve yet patient expenses are covered by the government. Or is it a “show me the money” system which many cannot afford but watches its budget while encouraging excellence?

The jury is still out….
* * *

Speaking to my rehab physiotherapist, I learned that the spinal cord rehabilitation program used to treat individual inpatients up to a year before being released into the community. In an attempt to save money, services were cut back to where, in my case, I received specific therapy for my injury for just over three months. Although I had my fill of hospitals for a lifetime, in truth I could have benefited from a much longer stay. The majority of my therapy was directed at undoing the damage created by being in limbo - bed-bound for over three months. Just when motion in my limbs was returning, I was discharged..

The question arises. Which is more cost efficient? Discharging a patient as soon as medically possible or keeping a patient as long as necessary to maximize whatever recovery they may achieve? In my opinion it would benefit the government, private extended health care insurers and patient alike to achieve the maximum recovery so as the person can return as a productive member of the workforce and not a recovering invalid in the community.

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Tuesday 17 April 2007

Strategy VS Insensitivity?

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Strategy Vs Insensitivity


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“You’ll never walk again”. The sentence I never wanted to hear was delivered to me not once, but on two occasions by two different doctors. Totally vulnerable in this life altering situation, the words burned into my soul as the blood drained from my face. Yet this monumental news was on both occasions delivered to me in a detached, cold, matter of fact manner. Ho-Hum, on to the next patient. Perhaps dealing with spinal cord injury patients on a daily, weekly and yearly basis had separated the compassion from the doctor? Perhaps compassion was another department, and the responsibility of another health care professional? Next!

And lets face it, doctors are never wrong!

It started me wondering if this “get over it” attitude was truly insensitivity or some strategy used by the health care providers involved with spinal cord injury patients.

Is there strategy behind being outright blunt and telling a person that they will never walk again? This approach might provide two outcomes. The patient may be thrown into a period of self pity and mourning but then turn the corner and more quickly accept their situation. Seeing the light at the end of the tunnel might allow the patient to better participate in their recovery.

On the other hand, the patient may be reaching for some ray of hope to cling on to thereby providing an incentive to try and participate in one’s own recovery. This blunt and absolute negativity could dash any incentive and cause the patient sink into deep despair.

So, is the bedside manner truly a reflection of the humanity present behind that white coat and stethoscope? Or is there some actual strategy or psychology practiced by doctors in this field.

My perception was that the job had become so routine for these doctors that they had no time to waste on compassion.

Patients as doctors can posses an infinite range of personalities. At the rehabilitation hospital I met a variety of people with injuries similar to my own. Some laughed and joked while eagerly discussing and comparing injuries with others. On the other hand, I recall one fellow I briefly roomed with that was dressed, placed in his wheelchair only to wheel himself perpendicular to his bed and bury his head in the sheets. There he would sit for hours, rocking and moaning. My heart went out to him. My strength lay somewhere in the middle and would (and still does) fluctuate from “I’m going to fight this thing with all I have” to…….well, let’s not go there,,,,,,,

So what is the best approach? I never wanted sympathy but I didn’t want the door slammed on my hopes and dreams either. Leave it slightly ajar. I would have preferred hearing “we just don’t know”, but that is something you will never hear a doctor say.

To all those facing a life altering situation such as mine, I can only offer encouragement. Try!!! Having worked with doctors professionally on a daily basis I can tell you without hesitation that doctors do not know everything, and some actually know very little.

But that is their secret.


Addenum: Still nervous about being shot down emotionally if I was to reveal my newly acquired motion to one of my doctors, I took the chance and raised my foot, deliberately and steadily from my leg support. It was great watching his jaw drop!

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Maybe Someday

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Tuesday 20 March 2007

Sensations & Therapy

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Sensations & Therapy

(The Progression after Injury)

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My first realization that something was terribly wrong was on waking from a foggy haze and finding that my legs would not respond to my commands. There was no pain, no apparent fever from the infection - nothing out of the ordinary except the lack of motion.

My memory is understandably foggy during that time as I was quite sick as determined by urine and blood cultures at the community hospital. The haze continued to waft in and out as I was transferred to a major Toronto hospital’s intensive care unit. I do not remember the ambulance trip there but regained some lucidness in my hospital room and presumably days later when asked to sign the usual paper work prior to my impending surgery. Empirical antibiotic treatment had been initiated with Gentamicin and Vancomycin in an attempt to eradicate whatever bacterium had invaded my system. These extremely potent antimicrobials started to shut my kidneys down while attacking the bacteria. The antibiotic was “fine tuned” to Cloxacillin and kidney function returned over time.

Post surgery was pure agony as I lived in a state of purgatory - between painful consciousness and a morphine induced hell. Consciousness brought a searing burning pain in my torso where the surgery had excised the abscesses. I had a morphine pump which I could activate to deliver more morphine (to the maximum allowed) but in doing so I was turning on extremely realistic and disturbingly vivid hallucinations with every push of the button. Death would have been welcomed at this time. I was also prescribed Gabapenin in an attempt to counter the burning pain but cannot say it was all that effective in the early days of recovery, My toes still refused to move.

Transferred from ‘Critical Care’ to ‘Intensive Care’ (as a medical health worker I remain unsure of the distinction) I continued to feel like living hell as pain and lucidness continued to poke through the haze. Full of drainage tubes and IV’s I ingested and was injected with supplements, electrolytes and antibiotics. I was aware that post surgery there would be a restriction of fluid intake, but in my mind that period seemed to last an eternity. I cannot even begin to describe my agonizingly intense thirst. I was allowed some water, sodium free soda water and orange juice in what I felt were extremely limited amounts and in my foggy mind extended far longer than necessary. I somewhat recall begging for, then trying to bribe a nurse to run down and buy me a cola from a vending machine. No luck.

Days turned into weeks as I began to spend more time conscious rather than in my hallucinatory world. Still no motion in my lower limbs. I was annoyed by this churning motion in the center of my back and asked the nurse to turn off the beds massage unit. I have no idea what response I got, but later realized that the churning sensation was due to the emergence of muscle spasms, common in spinal cord injuries.

It was probably for the best that these weeks remain on the recesses of my memory.
Alone in a semi-private room with a roommate somewhere equally as ill, I was a prisoner to my fears and thoughts. Hours of thoughts in my virtual isolation. I will always recall one sunny summer’s day when the rays were actually penetrating my dirty window, I could look out to a housing complex where children were laughing and splashing away in a community pool. How I wanted to join them.

I had recovered sufficiently in terms of medical parameters that I could be transferred back to my originating hospital for further recuperation and await an opening al a facility specializing in spinal injury rehabilitation. I continued to receive electrolytes and antibiotics while bed bound for an additional six weeks. Some limited physiotherapy was initiated bedside but this was limited to stretching.

At this point I was free of all sensation from mid chest down to the toes. Nothing! Spasms continued, not in my back but in my legs. It was almost amusing at first where I could scratch my leg and have it jump. Soon these spasms were to increase to the point where they were with me from waking at dawn to passing out after midnight. My legs would produce and involuntary jerk sometimes hourly and sometimes every few seconds daylong. Extremely annoying when trying to read as the book would jump around with every spasm. I was still too foggy to read anyways as post injury my concentration could not be directed at any task for any length of time.

Still no sensations but when sat upright without support in physiotherapy I realized that my abdominal muscles were truly gone when I would flop over like a rag doll or ‘bobble-head’ doll with the spring in the torso

Late one evening in October, illuminated only by the flicker of the overhead TV screen, I thought I notice a flicker of movement in my knees. Was that me? Or was it just the light playing tricks with my vision? No, I think they moved at will!! On waking the following morning, I tried to squeeze my knees together and yes, it was still there - a slight movement!! For reasons explained in another post, I decided to keep this discovery to myself.

I was discharged a week or two later and sent home. I had mixed emotions. At the hospital I had the run of the grounds and could find sanctuary in a tiny garden where I could read and hide from the hub-bub of the world. Delighted to be home, surrounded by familiar possessions and the love of my wife, I still felt like a prisoner. My “cell” was a thirty foot run between my living room which had been turned into my bedroom and the family room. I had TV and a computer in both rooms. Still the walls seemed to close in around me as did the winter.

I continued to try to move my lower limbs and found that my strength and range of motion improved weekly. I had a CACC (1) regional home physiotherapist assigned to me who was the first real positive and encouraging individual I encountered. With her instruction, additional exercises were added to my regime.

I found it amusing that I could not see the changes occurring within myself as well as others could. I had improved enough that there was not much more I could do by myself at home. Four months after seeing that barely perceptible flicker of movement in my legs, I could now do the “scissors” with my legs, bring my heels back while raising my knees when lying on my back. In the wheelchair I could now lift my feet off of the support and extend them straight out. Up and down, up and down, up and down - God it felt good!!
Yes, felt! Sensations had returned in varying degrees. While institutionalized, I could not feel, or had a patchy sensation from about my waste down. Now I could feel a touch right down to my ankles. Some sensations were hyper-sensitive. I could feel every hair on my leg fire if a breeze blew over my legs or the bed sheet was pulled up. I was confused. It was great to feel again, but this altered sensation and sometimes intensity was discomforting. Along with the return of sensation and motion was the presence of a burning or pins & needles sensation attributed to “nerve pain”. It can extend from the knees on downward or just from the ankles down depending on the day. Like having your feet dipped in very hot water. Gabapentin was prescribed to counter this but the sensation remains.

Needing something more challenging than home physiotherapy, I had the good fortune of being “fast tracked” as a hospital employee into the physiotherapy unit of my own hospital. I was delighted to be assigned to an aggressive therapist who was knowledgeable, positive and encouraging.

I had started out with two one hour sessions per week but that has now increased to four sessions per week. Tuesdays and Wednesdays I receive “one on one” assistance and therapy on a variety of apparatus. Wednesdays I follow a self directed exercise program under the eye of the physiotherapist. Now a fourth session has been added on Fridays where I receive water therapy in the pool.

My spasms have diminished significantly allowing me to use a ‘Moto-Ped’ assisted bicycle. With my feet strapped in, the cycle can be set to move my feet at various speeds and apply various resistance/pressure. As I had regained some movement I could actively peddle the cycle reaching about 80 rpm on my own. I now peddle the equivalent of 14 Km in about the 30 minutes I set the timer for. This cycle gets the blood flowing through the limbs and perhaps helps to reinforce the signal connecting the limbs to the brain. Next I do about 20 minutes on the ‘Hand Cycle’ which again helps to raise metabolism, strengthen the upper body and just get the blood flowing. Weights and pulleys follow, again to increase upper body strength which helps in transferring.

During assisted physiotherapy I get a variety of exercises with a variety of contraptions. The most recent change I have noticed is that my abdominal muscles have recovered quickly and substantially, again, almost to the point of discomfort. Perhaps I just have to become reacquainted with sensations I hadn’t experienced for about a year now.
I also have been placed on a “Tilt Table” which raises me mechanically from a lying position to a near standing position. This places body weight on the tendons and stretches them out as months of inactivity has caused them to contract. I also was introduced to a “Standing Frame” where the wheelchair rolls up to the apparatus and a sling is placed under the buttocks. A counterweight is added to somewhat counter my own weight. When set up I can use my leg muscles, assisted somewhat with my arm muscles to raise to a standing position. Now I can alternately stand and sit using this frame, exercising my both my leg muscles and stretching out my Achilles tendons. I do feel wobbly laterally when standing. Obviously there is much more work to be done.

Having only one session in the pool, I can only describe it as a bit of heaven in the daily hell I have experienced. Not being able to turn by myself on my narrow bed, and sitting on my butt all day in the wheelchair, creates an indescribable agony. Shifting releases the pressure momentarily but offers no long term relief, In the pool I am freed. As a canoeist with miles of wilderness rivers under my belt, I am completely at ease with water. Lowered into the pool, there was immediate relief from the pressure. I felt so at ease that I could use all my limbs and swim the length of the pool. Wonderful! It was over far too soon. Getting redressed while wet in foreign facilities is a challenge.

So now, nearing the one year anniversary of my illness and surgery, I have regained a substantial amount of movement in my afflicted limbs. The damage was not symmetrical as one side can accomplish some movements easier than the other depending on the motion. Some motions are smooth as butter and easily controlled. A few are jerky. Spasms have subsided to the point that I have cut back on my medication (Baclafin) and they usually reappear in the evening regardless if sitting or lying in bed. Spasms are often preceded by a few seconds with what feels like a pin prick and not always at the site of the spasm itself. Skin sensitivity still extends down to the ankles but is somewhat altered from what I recall was normal and the hair receptors still seem to be hyper sensitive, firing with the lightest stimulation. I am still experiencing nerve pain which can best be described as a burning or pins & needles sensation from the knees on down. Gabapentin is suppose to counter this but is either ineffective or the dosage is insufficient to alleviate my discomfort. I am still trying to get used to my abdominal muscles as they work well but don’t feel comfortable. Proprioreception is still lacking below the knees which is what tells me were my feet are in space when my eyes are closed.

What is better? Being free from pain, sensation and motion or feeling various forms of discomfort and be able to fight and see where this recovery might lead? Some days I wonder.

So there is where I stand (pun intended) one year later. I have no idea where the physiotherapy and hard work will take me. I did not want to hear negativity nor did I want to hear about the prognosis for the future. I just want an opportunity to “try” and see what might be possible.

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Thursday 1 March 2007

Staph aureus (The Bug-er That Got Me)

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Staph aureus
(The Bug-er That Got Me)

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Although I work as a microbiologist and deal with bacteria on a daily basis, I never believed that my illness was work related as I practice the highest standards as required by provincial and hospital regulation and at no time was I asked to perform any questionable or unreasonabley dangerous tasks. I had no visable open sores or wounds which might have served as portals of entry. Gloves were used where appropriate and handwashing was always performed throughout the day. After being in the Medical Laboratory field for close to 30 years, proper procedures have become second nature.

That said, I probably was infected by a bacterial strain that I aquired from the hospital environment. We all pick up and are colonized by bacteria from our surroundings. This is inevitable. A hot soapy shower will reduce the numbers greatly but our body provides ideal breeding grounds for bacteria and they begin to recolonize our skin within a period of as little as 20 minutes.

Having finished a 10 day stretch of work, I found myself rather run down. That, with what from previous experience felt like a sprained back, confined me to bed where I drifted off into a hotand sweaty haze. My back lower back pain was so severe that I eventually could not even make it to the shower. Stewing in my own persperation, unwilling to eat, I probably became more vulnerable and may have infected myself through a small scratch etc.

I cannot find any fault with my place of employment and will not blame anyone else for my illness. If it was self induced, so be it. I will probably never know for sure.

For those who wish to read more about the bacterium which caused my paraplegia please visit my alternate blog post at "Staph aureus (The Bug-er That Got Me)". To avoid redundancy, it will not be repeated here.

Stapylococcus aureus

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Tuesday 20 February 2007

Paraplegic Equipment

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Paraplegic Equipment
(Held Hostage By Medical Supply Extortionists)

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Before the physical trauma can heal, before you can mentally come to terms with your newly acquired paraplegia, decisions may have to be made as to the medical equipment and supplies you will need for life on the outside - or so they will tell you.

One of the first instructions my wife and I received was to consider which suppliers we would like to deal with. We were advised that we may wish to deal with only one to minimize confusion and perhaps negotiate a better rate. This advice was immediately overridden. As related in a previous post, I was told that I would need a custom built commode because my legs had seized up from prolonged bed rest, refusing to bend at the knees. This commode would have adjustable legs to accommodate my rigid joints. The order was placed with a vendor without consulting myself or my family.

Although the device was required immediately, the order took about 5 to 6 weeks to be completed. A huge stainless steel unit arrived ready for my “test drive” however by the delivery date, physiotherapy had freed my joints so that the custom feature was no longer necessary and a much cheaper stock commode would have sufficed. Although the $6000 item was pretty much self explanatory in it’s use, no papers or manual came with it as to its care, maintenance, service and warranty. As a commode is not covered by either government assistance nor my private health insurance, payment for the $6000 wheeled monster was entirely my responsibility and the only way I found out who the vendor was, was through the manufacturer’s name on the invoice.
Regardless, this custom made marvel’s leg supports proved to be too long for me even at their shortest extension. As I am just short of 6 feet tall, I have no idea who the giant was that this commode was modelled for. The back support started to unravel and fall apart just months after bringing it home. Oh, I wasn’t permitted to take it home until paid in full. Compassion and necessity be damned!

The situation was just about identical for my wheelchair. Not knowing even what questions to ask, my fate remained in the hands of the health care “professionals”. A loaner electric wheelchair appeared in my room a couple of weeks after my arrival. I didn‘t question my mode of transportation as I was delighted to be mobile and able to receive proper physiotherapy in the gym. In the meantime my personal wheelchair was to be constructed. The problem arose when my physio & occupational therapists agreed that I would benefit from a chair that tilts back to relieve pressure. The vendor that had constructed the commode did not manufacture tilting electric wheelchairs but the bargain price of $6000 was negotiated only if they would receive the order for my electric wheelchair as well. A dilemma! How this was ultimately resolved, I do not know. I was advised not to discuss the issue if I encountered the vendors and with some negotiations behind the scenes some compromise was reached. I now had a $6000 stainless steel commode and an $18,000 electric wheelchair. The federal government did cover three quarters of the total cost leaving a $4500 hole in my bank account. My private insurance would cover a manual chair at 100% but not my portion of the electric chair.

After taking possession of the electric wheelchair, I was queried by numerous patients and friends as to why I was piloting an electric wheelchair and not a manual model as my upper body strength was not affected by my illness. I had no answers as the health care “professionals” had made the choice on my behalf without discussing the rationale.

Having become incontinent from my illness, I had been fitted with an indwelling foley urinary catheter on admission. I was left uncertain as to how I was to deal with this problem once discharged. At first it was hinted that I would have to have to change the indwelling catheter myself monthly, or have a nurse come in to do it for me. If it became infected, I might be expected to spend hours at the local emergency ward waiting to have it removed and antibiotic therapy initiated. Threading this long foreign object up my penis then inflating the retaining balloon did was not appealing in the least.

Near the end of my stay I was cheerfully told that I would be going on I.C.s. Nobody had explained to me what I.C.s were. No they weren’t “Integrated Circuits” but rather referred to “Intermittent Catheterization”. Yes, that’s right. Once again you get to have the pleasure of sticking a piece of plastic up your “willy” but now it is about every 6 hours instead of monthly. Equally unappealing plus impractical. My severe spasms would trigger whenever in the vicinity of my groin plus you must have a wheelchair accessible washroom within reach at all times. Or in the very least, a quiet corner and a receptacle.

It was only by chance that I was in a rush one morning that the staff offered me a condom catheter. As the name implies, this one is worn on the outside and urine collects in a bag strapped to the leg. Not a pleasant solution but for me, much more acceptable than the other two. It worked…

There are a variety of medical supply options, which should be discussed or offered to the patient unless their medical condition absolutely demands the use of one specific device .I suspect that some staff members have their own personal preferences and chose these to simplify their own work day. . If the medical supply business is like any other, I suspect there are some, aaahhh, hmmm, shall we say “kickbacks” to the facility if certain brands and products are pushed


Having arrived home, I required a “Hoyer Bariatric Lift “and sling to transfer me from the bed to the chair and back. Some may need this option permanently and the choice must be maid as to have a movable unit on wheels or an overhead unit running on tracks. Both are unsightly contraptions and ridiculously expensive. As I have my upper body strength, I tried to learn to “transfer” in order to rid my self of these aids.

It always seemed to me that the art of transferring was most suited to those individuals who’s relatives had crawled out of the evolutionary tree much later than myself. I have never been able to scratch my knees without bending over so my arms are relatively short. Because of this physical attribute, I cannot get myself airborne with ought the use of pommels. These are simple devices which when gripped and pushed upon, raises your butt off of the sitting surface by a sufficient amount as to allow lateral movement. Suppliers of this item were difficult to find and once located I was appalled to find out that they are priced from between $150 to $250 CND per pair. Outrageous!!
I have seen both metal and wood variations of this aid. Now I have a fully equipped wood working shop in my basement but my injury has made it inaccessible to me. I decided that with some copper plumbing supplies, I could make my own at a fraction of the price.

I purchased about 6 feet of ¾” copper plumbing pipe, 4 - ¾” 45 degree angle connectors and 4 - ¾” ‘T’ connectors. 8 - 13/16” rubber slip on feet or end caps would complete the project. Tools required were a pipe cutter, emory cloth for cleaning joints prior to soldering, solder paste to assist solder flow, a pair of vice grips or clamp to hold heated piping, a propane blow torch and the solder itself. For a hand grip. I painted the exposed copper pipe and used spongy pipe insulation as the hand grip. Custom made to my own specifications at about $35 and assembled from my wheelchair in the safety of my drive-in shower stall.

I was equally shocked to discover that a transfer boards also cost between $150 for a wooden model to $250 CND for a high density plastic version. ($75 for a used wooden one) Once again, my woodworking shop was inaccessible for this simple project so I turned to a woodworker friend of mine who made me a couple from 5/8” Baltic birch plywood with a matte varathane finish. (gloss sticks more than matte). $20 would have covered the cost but for my friend’s generosity, I got them for free. Works well!

There is absolutely no doubt that many, if not all medical devices and products are drastically marked up in order to gouge the client/patient. They know quite well that they have the needful individual over a barrel. Besides, some of the cost will in all likelihood be covered by the government or insurance companies. No harm done, right?

It has been an eye opening experience. If I ever manage to get back to my shop, I know that I could make an honest wage selling these items to institutions or to individuals through e-bay at a modest profit.

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