Spinal Cord Injury Recovery -My Story 12 Years Post Injury

Spinal Cord Injury Recovery - My Story 12 Years Post Injury

A while ago I checked the statistics relating to specific spinal cord injury topics I’ve posted and not surprisingly found that Spinal Cord Injury Recovery the most read.  Not surprisingly as anyone who has experienced this life-altering injury desperately hopes that there’s a light at the end of that very dark tunnel.

Do you believe in miracles?... I don’t.

If you were told you won’t get much better and find yourself improving, I attribute that good fortune to medical misdiagnosis of the severity of your injury by your doctor.

If you are a religious person, go ahead and pray to your God---it certainly won’t hurt.  But I personally don’t believe it will help.  After all, where was your God when your injury occurred?

For myself, I don’t believe God had anything to do with my receiving this injury and God will probably offer the same amount of involvement in its healing.

Some more background:

So, first off---all injuries are different, not only in cause but in severity.  Immediately after your injury, were you properly stabilized and moved by properly trained personnel?  How quickly were you diagnosed and received appropriate medical intervention?  How quickly did you receive physiotherapy to keep you limber and maximize your chance of recovery?

As my injury was due to an infection by the bacterium Staphylococcus aureus, its physical invasion and toxins produced damaged my spinal cord differently than severing, shearing, crushing or even a stroke would.  Even other bacteria or viruses would have damaged differently.  You see, Staph aureus produced a variety of enzymes and toxins that can inhibit the body’s response to the invasion as they damage tissue.  It is my belief that many of my neurological pathways are mostly intact but modified.  The enzymes action on my spinal cord were similar to a solvent being poured over a bundle of insulated wires which when denuded of insulation produce short-circuits.  I can relieve the itch on the bottom of my left foot by scratching my left butt.  Go figure!

I believe most doctors tell the spinal cord injury patient that what they get back in the first few months (six months) is all that they can expect to recover. (I’ve heard a number of variations on the timeline).  Personally, I could not move my knees together more than an inch when discharged after six months.  Movement did not improve until the eighth month when the inflammation from my infection subsided.  I believe my injury would not have been so great if the inflammation could have been reduced much sooner.  The body produces inflammation to swell the tissues thereby localizing the injury or abscess.  However, that same inflammation may also restrict the body’s cellular defenses against the infection, constrict blood flow to the area and the physical swelling may further damage surrounding tissues.

My injury (infection) occurred at the T-5 to T-7 area.

Only after 8 months post-injury, as inflammation subsided, did motion slowly begin to return to below my waist.  The downside to that is that the same pathways carry the sensory (pain) signals and I began experiencing the burning neurogenic pain.  Spasms became more pronounced at that time as well.

I was lucky as my employer’s benefit package included unlimited physiotherapy of which I took full advantage.  One hour sessions three times a week was recommended.  I received physiotherapy in a hospital setting for two full years and then for a number of months longer at a private physiotherapy clinic.  I believed that I had come as far as I was ever going to recover after some two to three years post injury.

Still, I joined a gym and utilized whatever equipment I could---about two hours at a time, twice a week for another two years in hopes of staying limber.  The gym I attended began changing out equipment to models my limited motion prevented me from using.  Also personal circumstances limited my attendance to the two years.

Okay---Twelve Years Post Injury:

Neurogenic burning: has been a constant companion ever since the inflammation subsided some eleven years ago.  No better but no worse either.  Gabapenin, Nortriptyline, Amitriptyline and Lyrica have done little if anything to reduce the pain.  Perhaps they reduce the number and intensity of zapping shocks that can spontaneously occur above the steady burn.  At best, the drugs may take the edge off the burning pain but if so, only by a few percent.

Spasms:  Spasms cause limbs to jerk or jump rhythmically---contracting every few seconds and then relaxing---on and on, often for hours until they ran their course.  I found it curious that spasms occur only in one limb at a time but can switch over to the other limb: what (shared) pathway?  Analogies: Is it some sort of feedback loop caused by a ‘dripping’ neurotransmitter---where each ‘overflowing drop’ causes a spasm? Or could is it some ‘electrical spark’ where each ‘zap’ causes the spasm?  Could it be a combination of the two?

What triggers spasms to start or to finally run their course and subside?  They seem to come from nowhere and seem unaffected by work or rest; leg position (sitting or lying), temperature, nor any other physical condition of note. While they could occur at any time of the day, they most certainly will start in the evening.  My spasms usually last no less than an hour but usually several hours at a time.  The longest stretch of continuous spasms was for eight hours.  Sometimes putting pressure on the limb (foot) can help eliminate the spasm---stand up if able or if sitting have your feet on the floor and lean forward.

Initially, once the spasms finished, they let me sleep in peace and did not appear again until the next day or evening.  Around nine years post-injury, the frequency of spasms increased. I began experiencing spasms throughout the night, often when lying too long on one side or the other---however these spasms were short-lived meaning, unlike the long-lived spasms of the day, they usually subsided on changing position.

Nine years post injury I began to experience what I called ‘Atomic Spasms’.  These spasms were so explosively violent that the one leg or the other would contract to the limit yet the muscles tried to go even further feeling as if the leg would be pulled from the hip socket.  ‘Atomic Spasms’ produced excruciating pain as the body felt as it was attempting to tear itself apart.  My ‘Atomic Spasms’ lasted for about a year and half or two years then disappeared.  (Regular rhythmic spasms still occurred throughout this time period)  I have no idea why the ‘Atomic Spasms’ began then disappeared except that they started shortly after I left the gym and perhaps there was some reaction to the cessation of strenuous exercise.

On discharge from the hospital I was placed on the maximum oral dosage of Baclofen with Valium added in an attempt to control my spasms.  I continue to take the Baclofen however the Valium was discontinued early on.  I feel the Baclofen has little effect on spasms if defined as the rhythmic contraction and relaxation (jerking) of a limb.  What it seems to do is reduce some tightness in the limbs.  I found when I attempted to wean myself off the Baclofen that my legs drew together and attempted to cross making it more difficult to separate the legs into a ‘jumping-jack’ position.

Proprioception: Defined as knowing where your limb is in space without looking at it.  Proprioception was lost with the injury but slowly began to return after the eighth month post-injury, however it did take longer to come back.  I feel I’ve regained most of that particular sense.

Tactile Sensitivity:  I can feel both sensations of touch and temperature in my feet but they are not as quick or as intense as previous to my injury.

Movement:  After my physiotherapy and the independent gym routines, I could walk short distances with a walker with a fairly normal gait.  Even with physiotherapy and the gym, the muscles in the back weaken and want to give out.  While I can stand and even let go of the walker, I cannot recover if I start to waver and drift to any side---front or back.  I describe my sensation as trying to balance a pencil on its eraser---pointed end to the ceiling; not easy to do.  I can stand if braced, reach high or bend to pick up off the floor.   I can just about do anything other than walk away from my wheelchair.

Stiffness: I have an overall stiffness which seems greater than what can be accounted for neurologically. By that I mean in twisting my trunk about my waist, I feel that neurologically I can twist further but that the tissues (muscles, ligaments, etc.) are restricting the movement.  If this is not a neurological deficiency then the muscles, tendons and ligaments have shortened or stiffened to limit the range of motion.  Further evidence is that Baclofen has no effect on this stiffness.  If this is the reason then why didn’t two years of physiotherapy and two years of independent gym activity stretch the connective tissues back to normal?  Perhaps I’ve developed “contractures” which roughly is the ‘gluing’ of one layer of tissue to another so that they essentially become fused and may require surgery to be separated.  The Achilles’ tendons also shortened while during my six-month hospital bed confinement.  Again, physiotherapy and gym routines plus day to day standing have not returned the Achilles tendons to their normal length.  While I can stand, the short Achilles point the toes downward and always want to push me backwards.

Other: body/bathroom functions are unaffected by the injury.  Because I can shift and move around independently, I have no skin issues.  I try to sleep on my sides or stomach to give the backside a break from pressure.

My injury weakened my left side differently than my right.  As a result of a change in muscle strength, I place more pressure on the left hip.  My injury resulted in sciatic nerve pain in my left hip which at times extends to my foot.  A blood vessel must run near the nerve (can’t find my Gray’s Anatomy book) as the pain pulses with every heartbeat.  Sciatic nerve pain is always present but intensifies to excruciating levels about once a week then subsides to a lower level of pain.  Exercise and other physical techniques have not lessened this pain.

Final Thoughts:  I truly feel I would have recovered further if the initial inflammation could have been reduced.  Six months of hospital rehabilitation with one hour physiotherapy five days a week is insufficient in keeping affected limbs limber.  Persistent movement after the initial injury is sufficiently healed would be extremely beneficial.  How can one keep the Achilles tendons from retracting if there is any hope of walking again---some kind of boot keeping the tendon extended?

Once the high-priest of medicine wearing his white lab-coat vestments; a stethoscope in place of a crucifix, and pronounces you a paraplegic, there is not much real effort extended in helping you recover.  Doctors don’t like to be proven wrong.

In the final analysis, my recovery is about the same as when I finished physiotherapy about two to three years post injury.  Spasms, burning, stiffness and, of course paralysis remain,  No other changes or improvements occurred other than the increase of spasms which now also occur during the night into early morning.

Prayers or positive attitude---use whatever means to keep motivated and keep moving.  Just remember, doctors are not always right.

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State of My Recovery -11 Years Post Injury

What follows is a long-winded summary of my symptoms and improvements (if any).  I write these posts primarily for my own documentation and not so much for any interested audience I may have acquired.  ‘They are what they are’ –please take them as such and read on if still interested.

Much of the following can be found elsewhere in my blog however this is simply a summary of my state of recovery and or symptoms eleven years after I first sustained my infectious injury.

I had expected to make more progress after my discharge from the rehab hospital but sadly things haven’t changed significantly.  While I was written off and offered little expectation or encouragement by the “professionals”, I had hoped for and have achieved much more…but sadly not enough.

I was basically told to go home, put a quilt over my lap and live out the remainder of my days watching the sunrise and sunset from my porch.  My wife was given instructions to set her alarm clock in order to turn me over in bed every four hours so that the chances of developing pressure sores would be minimized.

All told, I believe the rehab hospital did as much damage to me as did the original infection simply by such minimal treatment that it amounted to neglect.

When my wife questioned the rehab about my receiving further physiotherapy, they actually questioned why we should want to continue physiotherapy after discharge.  The impression was that it would be of no use.  I simply cannot imagine any competent healthcare facility arguing against further therapy.  Though I trust my wife implicitly, there must have been a miscommunication.

I did receive over two years of physiotherapy at the hospital at which I was employed –three times per week.   Afterwards, I joined a gym and created my own routine on any apparatus or equipment that I found I could utilize.  I feel it did help though not as much as I had wished.  After two years at the gym I stopped going after the equipment was changed over to models which I couldn’t find a way to use.  What equipment remained didn’t justify the membership cost.

I did return to my work as a medical technologist.  I am able to stand alone and non-braced for a short period of time and braced by my wheelchair, significantly longer.  I can do much of what I could before my injury except for walking away from the wheelchair.  I had always hoped to get back to my woodworking shop when no longer at the bottom of lengthy stairs.

While lying on my back for six months at the rehab hospital, paralyzed from my waist down, my muscles weakened and tendons shortened; ligaments also probably tightened.  Muscles regained much of their strength through physio & self-directed gym work; however the tendons are another issue.

Tendons, particularly the Achilles’ tendons retracted (shortened) so that I have little dorsiflexion (lifting my foot up at the ankle) but have strong plantar-flexion (moving the foot down at the ankle).  As such, I can stand on the ‘balls’ of my feet –tip-toe I suppose.  As I cannot lift my foot up much at the ankle, the toes point downwards and catch if I try to take a step using a walker.  I can walk using the walker but I have to lift my foot un-naturally high so the toe clears the floor.  The gait, though awkward, is effective; I can walk moderate distances.

Unfortunately it is a “catch-22” situation where to stretch out the Achilles at my age would require my being on my feet for long periods of time.  My injury does not permit me to be on my feet for long periods of time.  I wished there was some sort of apparatus or ‘boot’ that could be worn early after the initial injury that would keep the foot bent and the Achilles in the stretched position so they wouldn’t retract and shorten.  Of course, once the learned doctor has pronounced his prognosis, no further assistance is given as doctors are never wrong.  Physio and gym therapy has helped to a limited degree; I can feel the Achilles stretch on gym equipment made for that purpose, but the effects are short-lived.  Young developing children have very pliable tendons but as you age they lose this quality and it is hard, if not impossible to regain their effectiveness once retracted.

Injury Symptoms Remain:

Here are my remaining injury symptoms which remain to give me great grief each and every day.

1.       Tightness:  as mentioned above, tendons and ligaments have tightened or shortened because they have not been used as intended – over their full range.  It is my understanding that muscles or tissues not used over their natural range may develop ‘contractures’ where the tissues or tissue layers permanently fuse to each other.  Movement may be forever restricted unless the tissues are freed from each other surgically.

In addition to my Achilles tendons having shortened, I suspect there is some alteration around my hips as well as I cannot ‘do the splits’ to any great degree.  I used the ‘abductor’ apparatus in the gym in hopes of improving this but it probably helped to regains strength but not range.  This may have some bearing on my sciatic hip pain (further below).

The other location where this tightening is most noticeable is in my core.  I have a limited range in twisting from side to side at my waist.  I suspect it feels as if I would wear one of those corsets the Victorian ladies used to lace themselves into.  The main limitation is in personal hygiene after having used the toilet.  It is difficult for me to swivel and reach my backside therefore some inventive methods have to be developed to accomplish this unpleasant but necessary task if one is to preserve dignity.

In spite of constantly twisting and turning ‘in-situ’ (real life), I have not achieved any additional range of motion.  While my muscles seem willing to go further, the ligaments seem to hold them back resulting in pain if I attempt to twist further.  Any improvement I get from exercises is quickly lost –as if there is a philological mechanism preventing improvement.

2.       Shocks:  I suppose these are the spontaneous firing of various nerves with the resulting   Even these vary in sensation.  One feels so specific as if someone suddenly jabbed me with the point of a pin.  Without any notice a pin-pint jab can cause me to jump (unexpected, it is usually accompanied by a yelp or expletive which I cannot repeat here!).  They may occur anywhere below my injury site but usually from the groin to the feet.  A shock as specific and isolated as a pin-prick.

Then there is what feels like electrical shocks which I can only describe as being accompanied by a kind of “buzz”.  They kind of feel as if you touched a 120V electrical wire for a split second.  I don’t think the human body runs on A.C. (Alternating Current), however that “buzz” I mention feels like the 60 cycles per second alternation our electricity is transmitted with.  I swear I can almost perceive the buzz as the cycles alternate.

 

Finally there is a variation of the specific electrical shock described above.  It is broader, almost a wave that spreads out over a larger area.   Although they have occurred from the groin area downward, they occur more frequently in the soles of my feet.  Again, they are a broader or wider buzzing shock-like sensation similar to the 120 Volt shock.

All of this shock like sensations may occur only once or they may pulse – occurring several times with perhaps a few seconds in between each shock.  There are usually no more than five or ten shocks before they peter out.  They offer no clue as to what triggers them and they offer no warning as to when they are about to occur.

3.      Sciatic Nerve Pain:  I suspect this exact sensation is unique to my injury.  My injury appears not to be symmetrical (affecting both sides the same).  Though my motion appears the same on both sides, they symptoms differ slightly between left and right.     It seems my injury has weakened my left side such that there is pressure or stretching (which?) at the hip joint which causes the sciatic nerve to be irritated.  I have sciatic nerve pain which at time can be tremendous and all consuming.  When at its worse there is no escaping the pain.  OTC (Over the Counter) analgesics (pain medicines) do little to ease the pain.  I have tried ‘Piriformis’ muscle stretches which target sciatic pain to no avail.  At worse it feels as if I am sitting with my hip joint placed squarely on a hot rock.  There is no escape as the nerve pain throbs with each heartbeat pulse whether sitting or lying on my stomach.  I said ‘all-consuming’ as it is difficult to think of anything else but the pain when it is at its worse. 

   

4.       Neurogenic Pain (Burning Pain):  Another symptom that can be “all-consuming” in that it is hard to think of anything else when the pain is at its worse.  In fact I don’t believe the severity fluctuates at all.  Simply when some other discomfort becomes worse than the burning –then your attention is not entirely focused on the burning.  (To not focus on a headache, hit your fingers hard with a hammer.  The sensation is unique –unlike anything I have experienced before so it is difficult to describe accurately.  I imagine it may vary between individuals affected and their particular injury.

The best description of my neurogenic pain that I can offer would be that it feels as if my limbs are immersed in boiling bubbling soda water with the millions of very hot bubbles continuously bursting on the inside of your limbs.  There is an unpleasant “tickling” sensation as each bubble bursts after hitting the inner surface of the skin where it ‘explodes’.  Some describe the sensation as having pants made of glass shards or perhaps the sparks from one of those ‘Christmas sparklers you light with a match.  Internal receptor sensations may be amplified so water from the shower may feel unpleasant, causing the limb to jump.  This burning sensation is with me every hour of every day and absolutely ruins any quality of life I may still have.

Gababpentin, Pregabalin (Lyrica), Amitryptaline and Nortryptaline are the only drugs I know of that are supposed to ease nerve pain.  I find them of little benefit, perhaps lowering the pain level by 5 to 10%.  I “grasp at straws” and accept those drugs as better than nothing, however they are not very effective.  If they don’t do much good, then why do I continue to take them?  Well, a drowning man will reach for a twig if it is the only thing floating around him…

5.       Paralytic Spasms: “Spasm: a sudden involuntary muscular contraction or convulsive movement” –Webster.  This is certainly what I consider to be a spasm to be.  I believe I was given another description by my botox doctor; it was something like ‘tightness through velocity’ as he flicked my foot at my ankle (I didn’t take notes).  These absolutely destroy my life!  While they can occur at any time and last for any length of time, they usually occur in the evenings and can last for hours.  My longest stretch of continuous spasms has been for eight consecutive hours.  They started at 10:00 pm and finally subsided around 6:00 am.  You cannot get much sleep when it feels as if some demon in your bedroom suddenly lifts your leg off the bed and violently throws it back down –over and over and over again for hours on end!

Usually spasms give some warning that they are about to start and they are about to begin.  The leg starts to buzz much more intensely than which I attribute to neurogenic burning.  My calf gives the sensation that it inflates or swells outward.  The sensation that it is hollow and a million bees have bees have been let loose to bump into my skin with their stingers out.  Then comes the first spasm; a quick and sudden jerk that at its weakest lifts my knee off the bed and at its strongest actually throws my entire leg around the bed.  Each individual spasm may also give a half-second warning prior to the leg jumping.  It feels like a wind-up spring mechanism that drove old wind-up clocks.  Wind too tightly and the spring may release and unravel requiring you to wind it up again.  It is that last fraction of a second wind-up and release that teases me that another spasm is about to fire. Try to get some sleep!  Just try to read a book, or watch TV or do anything when your leg is flailing around; up and down, left and right for hours on end.

Again, my injury is not symmetrical.  Spasms on my right side start with that creepy hollow buzzing feeling in my right calf and the spasm seems to come from both my calf and thigh.  On my left side, the spasms come from the hip and lower back.  I find it a curious clue that spasms occur on one side or the other.  Though not always in this sequence, they usually start on my right side and then may stop or transfer to the left side.  Both sides, thankfully (I guess) both sides don’t spasm at the same time.  Probably a clue to the neurological pathway they take.

I am taking the maximum oral dose of the anti-spasmodic drug Baclofen.  I have no longer have trust in doctors as I have been miss-diagnosed my entire life.  After my experiences, I have no desire to have a Baclofen pump surgically inserted in my spine.  I also have my suspicions of efficacy of the drug itself.  Some length of time after I was released from the rehab hospital I was experiencing spasms in spite of being on anti-spasmodic Baclofen.  It seemed to have little effect so out of curiosity I slowly began to lower my dosage until I was all but off the drug.  I found that the spasms continued at about the same rate and intensity however what did change was my stiffness.  I discovered that my legs seemed to pull together and were harder to spread.  My only real observation was that there was a major change in stiffness and tension in my limbs –spasms, not so much.  So I have to wonder what difference would pouring Baclofen juice directly into my spine would have and what side effects would I then experience?

In my ninth year post injury I started to get what I called “Atomic spasms”.  These spasms exploded so quickly there was no warning as to their coming.  They were so intense that it felt that the muscles were trying to disarticulate (tear apart) the joint.  They would explode to the extreme limit of the joint’s movement and then try to go further. At their apex (highest point) they would not release but hold, often for seconds.  The results were eye-wateringly painful spasms usually accompanied by a barrage of curse words, regardless of present company.  What caused this change in the ninth year, I can only speculate.  Perhaps after quitting the gym my muscles rebelled as the benefits painfully returned to pre-gym status.  Thankfully these Atomic spasms have generally subsided, though not entirely.

One note on the possible effectiveness of Baclofen:  Also up to my ninth year post injury the spasms I experienced occurred in the evening or at night.  They would run their course and then leave me alone until the next evening.  In the ninth year I began to get the ‘atomic spasms’ –an entirely different beast than the annoying, repetitious spasms.  What I also observed was that if the annoying spasms ran their course and stopped before bedtime, I could sleep uninterrupted until morning.  In the ninth year this changed.  I now may wake during the night and the simple act of turning over to another side may trigger a (few) spasms which usually however these will not continue on for hours.  So, I may be wrong.  The Baclofen may have some effect on my spasms after all.  The efficacy of the drug may be wearing off after nine years of constant usage.  The body may metabolize or circumvent the drug allowing spasms to initiate more frequently.  Regardless, the majority of violent, long-lasting spasms still occur each evening to late night.  This same metabolism or circumvention of Baclofen may account for my increased core stiffness.

 

So what is the exact mechanism that fuels these spasms?  Are we dealing with an electrical pulse for it symptoms sure exhibit themselves as a shock?  Zap! Zap! Zap! Or is it the constant drip of neurotransmitters across the gap?  Drip – Fire! Drip – Fire!  Drip – Fire!  It is the closest thing to perpetual motion than I can think of.  I could never lift my leg up and drop it down every few seconds for up to eight hours. I suspect I would be sore and exhausted - unable to raise my leg after fifteen minutes of exertion!  Spams that fire roughly every 6 to 10 seconds for hours on end!  Urgh!!!

So nightly I wait for the rhythmic spasms to begin causing my leg to jump and jump and jump – rarely, if ever for minutes but usually for hours on end.  It is pure ‘hell on earth’ –worse than the paralysis itself and destroys whatever quality of life may still remain.  At the risk of being “politically incorrect”, the perpetual spasms are like ‘Chinese water torture’ where a victim is restrained and from a reservoir and bamboo spout placed above their head, a single drop of water drips, drips, drips every few seconds upon their forehead.  Such a seemingly innocuous method has the victim ready to confess any and all secrets within a day if not hours.  I have no secrets to offer to stop this torture.  It will continue perhaps daily and surely every night for the remainder of my life.  And because of this never ending torture I have been broken and I’ve even cursed my God now on numerous occasions.  There is and will be no salvation for me…

“I hope I feel awful tomorrow as awful would be so much better than how I feel today”

Now, what has improved over 11 years post injury?

Because my spinal cord injury was due to an infection and not physical trauma, the progression of my recovery may differ from other paraplegics.

When you have an infection, the tissues respond by swelling which physically contains the bacteria much to the site of infection.  Fluids and white blood cells from the lymphatic system infiltrate the area in an attempt to destroy and mop up the invading organism.  The act of swelling can have a deleterious effect on the spinal cord by exerting pressure and perhaps reducing blood flow.  The body’s self-defense mechanism may actually aid in the damage which occurs.  (The same is true for physical injuries due to a cascade effect of substances triggered by the injury –but that is another matter).

I believe that this response to my infection caused additional damage to my spinal cord.   I have reason to believe this as when my wife first saw me post-surgery, she said I was tremendously bloated and swollen.  She also said I could move my feet at that time which I could no longer do days later.  To continue,  I became infected sometime in April and it was only in early January of the following year that I believe that the swelling receded enough to allow what neurological signals I had (motion and pain) to be transmitted along the spinal cord.  Before leaving the rehab hospital in November, I noticed I had regained some motion in my knees (slight movement in and out).  In January I suddenly realized I had regained some control of my core and could sit up or back against the backing seat cushion.  Soon after I realized I could lift my feet back and forth between the wheelchair footrests and the floor.

Two-plus years of physiotherapy, three times a week helped maximize my strength and range of motion.  It took some time longer to regain proprioception (knowing where in space my limbs were).

Sitting in my wheelchair I could exercise anytime by lifting my legs up in front of me.  (Sorry, my Grey’s Anatomy is packed away.)  That was fine for strengthening my (upper) thigh muscles.   Unfortunately the muscles on the underside could not receive the same attention as I cannot bend my legs back as my heels hit the wheelchair frame.  It was a lop-sided sort of exercise.

I had hoped the gym equipment would help strengthen those and other leg and core muscles.  After just over two years at the gym (2 to 3 times per week for about two hours at a time), there was some improvement but not to the extent I had wished and the improvement did not translate into improved or independent mobility.  As I mentioned before, I stopped going after the equipment was swapped out for newer models on which I couldn’t find a way to safely use.

I felt that this was about as far as my efforts would take me.   I returned to work and worked for an additional five years until I accepted early retirement.  I retired not because of any hardship, though there were plenty of challenges, but rather because the hospital at which I worked merged with another and consolidated the laboratories.  There were just too many staff members and my age and years of service qualified me for early retirement.

I am fairly independent as I can live on my own if I must.  My wife is out of town frequently and I can do all the chores, unassisted, that I need to do for daily living.  I hope to find a way to get back to my wood working.  I have a basement full of industrial quality equipment and only need an accessible location to reconstruct my shop.  (I have just moved to a new location).  Time will tell.

In my mind I find an apparent disconnect between my injury and my debilitating symptoms.  Over these eleven years I have regained motion right down to having weak yet obvious motion down to and including my toes.  I have the sensation of touch and of temperature in my legs though not as acute as before my injury.  But I can move a few toes, I can stand on the ‘balls’ of my feet, I can stand up from a sitting position (some help by pushing on the armrests occasionally helps).  And I can stand freely for some short periods of time and braced (back of the legs) for longer.  In the gym I could press several hundred pounds on the inclined-leg bench-press and could even kick some smart-ass in the pants if the situation warrants.  I can walk some distances with the assistance of a ‘walker’ though my problem in doing so is more mental than physical.  I have a sensation of loss of balance, more so from not having walked for so long rather that the inability to maintain my balance.

So, in essence, I can do just about everything with my legs except for walk away from my wheelchair!

I sympathize with those who have recently received a spinal cord injury.  Heartbreaking stories appear in the papers of people vowing to fight hard and walk someday.  I say “good-luck” to them.  I hope they do and for some reason some people regain the ability to walk.  I don’t wish to ‘rain on anyone’s parade’ but as I have described with my injury –I have regained almost all of my pre-injury motion yet after years of physiotherapy and persevering determination, I still sit bound to a six-wheeler.

It is almost as if the body actively works against recovery.  The stiffness!  Any stretching out is lost within minutes of stopping.  I have found that the paralysis itself, the inability to move, is the least bothersome aspect associated with spinal cord injury.  What destroys your outlook, your joy; your determination is the never ceasing tightness, shocks, burning and most of all, the spasms.

Once again:

“I hope I feel awful tomorrow as awful would be so much better than how I feel today”

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