Monday, 3 December 2018

Quite Frankly, I'd Rather Be Waterboarded

Though I've not had the pleasure, perhaps I'd rather be 'water-boarded' than to experience paralytic spasms.

When your torturer 'water-boards' you he will eventually stop or he will kill you.  Either way your torment has an ending.

Spasms are a nightly torture which will continue unabated for the remainder of my natural lifetime!  And so you find yourself praying for a short lifetime.

Spasm:spazəm/ :Noun: Spasm; Pleural: Spasms

  • A sudden involuntary muscular contraction or convulsive movement
Synonyms: contraction, convulsion, cramp, twitch, jerk, tic, shudder, shiver, tremor.

Paralytic Spasms: 
  • Hell's hop-scotch
  • Dance of the Living-Dead
  • Midnight Jumping-Jacks
  • Hangman's Jig
  • Modified Saint Vitus Dance
  • Punting imaginary footballs from midnight till dawn
  • Trying to kick down you ceiling light from your bed

Meet my nightly visitor named "Spasm"  *

Spasm can visit me any time but he most frequently arrives in the evening or night time.  A ravenous beast who bites my leg hundreds of times a second as his burning saliva saturates the limb.  Spasm then mercilessly begins to yank on my leg, lifting it up in the air and throwing it back down, over and over and over again--usually for hours on end.

December 1st: ~8:00 pm to ~2:00 am - 6 hours of unrelenting contractions and releases, contractions and releases--pulse after pulse after pulse.  Every 10 to 12 seconds for six-hours straight!!
December 2nd: ~7:00 pm until ~2:00 pm - 7 excruciating hours of tugging and releasing, tugging and releasing.
December 3rd: who knows what time and duration he'll have for me tonight?

I have tried to describe the accompanying feeling which Spasm delivers to my limb but no description can adequately impart the extreme creepiness which makes you want to jump out of your own skin...but you are paralysed and cannot jump!  There is no way to describe or impart to those who are able-bodied, that awful creepy feeling that accompanies the spasms.  The words have not been invented!

I have to wonder if my spasms differ from others who have become paraplegics by other means such as accidents or stroke?  When the spinal cord is severed the nerve pathway is cut.  I acquired my injury through a bacterial infection in which the toxins and enzymes produced by the organism short-circuited my spinal nerves as would removing the insulation from a bundle of wires.  I suspect many of my pathways are intact but heavily damaged.  Signals get through but with the motion, the pain and the reflexive spasms.

I am taking the maximum dose of Baclofen for the spasms but as noted elsewhere in this blog, the drug has never had much of an effect on the spasmodic contractions I experience.  Baclofen's only effect seems to be reducing some tightness.

Perhaps downing the entire pill container with a Jack Daniel's chaser would have some effect?

I have never had much confidence in any of the doctors I've had, both pre and post spinal cord injury.  In fact I believe my injury could have been lessened with a more immediate and aggressive response.  My lack of faith in the medical profession prevents me from seeking further and more radical treatment.

When experiencing Spasms, you cannot concentrate or become involved in something as simple as reading a book.  The creepiness robs you of your concentration and you cannot keep you place on a printed page with continual spasms.  You can only lie there and stare at the ceiling -- cursing God for your own existence.

While Paralysis will rob you of mobility, Spasms are what robs the quality of your remaining life! 

*Unauthorized use of Les Edwards art from Uriah Heep's album 'Abominog'

Monday, 8 October 2018

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.

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.

*   *   *

Pride's Quantum Motor Brushes

Pride's Quantum Motor Brushes and Repairs

Those who have followed the last few posts know that I spent the summer of 2018 a prisoner of my own home as my Quantum 6000 power wheelchair lost power in one motor.  As a result, the chair was unable to climb the ramp into my home.

The right motor being weaker than the left could not even climb the three-quarter inch raised transition leading to my washroom.  Both wheels would hit that lip but while the right wheel continued to climb over, the left wheel lacked power and subsequently the chair would swivel into, and crash into the right wall.  I needed someone to push the chair over the rise in order to enter.

When first diagnosed, I was told the joystick 'gimbal' was out of alignment so that power was not distributed evenly to the motors.  That didn't sound right to me but the technician told me he measured the motors and they were "bang-on" factory specifications.  So I laid out $900+ dollars for a new joystick.

After waiting a month for the parts and service the new joystick was installed yet the power issue remained.

It was a second technician who installed the joystick and as the problem remained the new assessment was that one motor was not operating properly.

Bingo!  That was my initial thought, yet the first technician said motors were within factory specifications.

The second technician then brought my attention to a damaged 'cap', for lack of a better term, which held one of four motor brushes against the motor armature.  If the first technician did not report this damage, I figure it was he who damaged it.  Regardless, only the slot was broken which is used to unscrew the 'cap' from the motor housing.  The brush still made contact and could not account for the power loss.

So, after initially being told the motors were working fine (though I doubted that), I was told I needed a new motor.  I was advised that if I replaced one, I might as well replace both to be safe---which I chose to do.

Another month passed: up to a week to place the order, two weeks to ship and receive the order and then a week to ten days to wait in queue until a technician is free to install the items.

I spent two months---the 21st of June until the 30th of August unable to leave my house with my powerchair.  Repairs, both unnecessary and necessary amounted to over $3000.00 Cnd.

 Broken brush 'plug' can be see at the end of the top red arrow.  The brush assembly is seen below.  The 4 per motor carbon/metal composite (?) brushes conduct electrical current to the motor.  The brush is sandwiched between a spring which presses it against the armature, and the cap which secures it to the motor.

While it turned out the brushes were not the source of my motor power issue, they are not stocked by the company and as far as I was able to determine from my technician, Pride does not offer replacement brushes.  If they fail, you buy a new motor.

My technician confirmed that motors are not interchangeable so you can't change the housing and swap a left motor for a right if you had a spare.  Damaged motors are not rebuilt or repaired but are trashed.  Some 'Green' world we live in!

A closer view of the cap and spring-brush assembly which fits into the port/hole in the motor above.

Saturday, 4 August 2018

Repair Timetable -Is this Acceptable?

The Summer of 2018:  The summer I spent indoors, a prisoner of my failing powerchair and my wheelchair repair service.

Again I ask --- what length of time would you be willing to wait to get your only pair of shoes repaired or replaced?  Hmmmmm?

Prisoner:  Summer of 2018 spent indoors.

My last two posts (1) & (2) have outlined my frustration in having my Quantum 6000 wheelchair's power issues resolved in a timely manner.  My frustration continues...

My wheelchair repair service is by all accounts a reputable company and franchise.  I understand their own dilemma, having acquired most, if not all of Shopper's Home Healthcare services when they divested their company of wheelchair sales and service.  Retaining qualified technicians also appears to be a challenge.  Sick days and summer vacations have also been offered as excuses.
Unfortunately they are the only service in 'town' covering a very large part of southern Ontario.

1. Thursday June 21st, 2018 - call Service Provider requesting service on loss of power from my Quantum 6000.  Got lucky as it usually takes a week or so to get a technician to make a house call.  They promise to send one next day.

2. Friday, June 22nd, 2018 - Service Technician promptly calls in the A.M. and searches for cause of the power issues with my powerchair.  Chair runs fairly well on a flat surface.  Powerchair can no longer climb the ramp.  Have to compensate loss of power by pushing joystick to the left.  Chair struggles in left-hand turns (where right wheel pushes).  Climbing the smallest bump or ledge, the left wheel has power and climbs; the right wheel hits and stalls --- which pivots me around the stalled tire --- into walls if nearby.

Technician measures motors and tells me they are within factory specification.  Doesn't have the meter to plug into joystick to measure stored parameters.  Technician leaves after almost two hours --- for another job.  Problem unresolved.

3. Call Service Provider --- send technician with 16 years experience to complete diagnosis; has meter to diagnose parameters stored in joystick.  Technician states that problem is the joystick controller.  Doesn't provide full power on an incline when pushed to max,  (then why does it run reasonably well on a flat surface?)  Service technician orders new joystick.  Asked him if he could place a "rush" request on that order.

4. Monday July 2nd, 2018 - Service Provider calls asking if I want to go through with this pricey order ($921.00 Cnd.).  "What choice do I have?", I asked politely - this chair is 'my legs'.  I thought they were calling to tell me the parts were in,  It took a week for them to call to verify if I wished to proceed with the "rush" order.  Secretary tells me it usually takes two weeks for the parts to arrive.  I again plead if a request to "rush" can be requested.

5. Tuesday July 10th, 2018,  I subsequently receive the invoice for the parts ordered dated July 10th.  Stapled to it is a printed cashier's tape receipt of the stated amount having been made on my charge card.  It appears the service department actually put the charge through on my credit card one week before calling to ask my okay to do so.  I'm confused.

6. Monday July 16th, 2018 - Two weeks have passed.  I call my Service Provider asking if the parts requested have arrived.  The confirm that the parts are in but inform me that I cannot get a technician for over a week.  Book the appointment

7. Friday July 27th, 2018 - Service technician with 16 years experience arrives to replace joystick (and connecting cable).  Repairs made; problem remains $921.00 later.  Technician notices right motor has damage to the 'plug' (for lack of a better name) which holds the brush contact for the motor.  (Why was this not noticed by the first tech (or the second for that matter) who measured the motors and found them within factory specification.)  Did the techs damage the brushes when examining them?  This brush plug or housing is protected by the tire on one side and the motor engagement lever on the other.  It would be difficult if not impossible for the wheelchair user to damage.

Technician with 16 years experience suggests I get a new motor.  Then it is my call; do I wish to replace the other motor at the same time because "when one goes, the other may not be far behind."  While that may be true, this was not wear and tear but rather physical damage.  What choice do I have?  Well, I don't want to spend the summer of 2019 waiting to replace the other motor so I okay the deal.  Please, please, PLEASE - can you put a rush order on the parts as I want to salvage some of this summer.

8. Thursday August 8th, 2018 - Service Provider calls me to ask if I still wish to go through with the pricey purchase; $2120.00.  Again I ask "what choice do I have?  These are my legs!"  So, one week after the 2nd diagnosis is made and my "rush" plea is made, I'm called to ask if I still want to go through with the order.   "Yes, I do" I whimper and again, futility request the make it a 'rush' order.  I try to guess when the parts may arrive based on their previous timetable - two weeks would be the 16th of August, three on the 23rd of August.

9. Monday August 20th, 2018 - I call service provider to ask if ordered parts have arrived at their facility.  "Yes" I'm told "they are in and we have you scheduled for a service call on August 30th" --- TEN days from today!  I wonder when the parts actually arrived and was the wait for a service call longer than ten days.  My pathetic request for a "Rush" order had me waiting three weeks!

10.  Thursday August 30th, 2018 - Service provider arrives on-time and installs the two motors necessitating taking almost all of the chair apart.
   -2 Motors = $980.00 each
   -2 Wheel Assembly Hubs =  $40.00 each
   -1 Hour labour = $80.00
   -Total = $2120.00

Thankfully the correct parts were shipped and the chair does now run to my satisfaction.

One-Sixth of a Year has Passed
Since I first Called for Service
and my Wheelchair was Repaired!

Add that charge to my needless Joystick replacement (and labour) and you have a total of $3041.00.   Urgh@$&**!  And summer is gone...

So if it takes two weeks to get delivery of the parts (as nobody stocks the most common parts for the most common of wheelchairs any longer);  and if my "rush" request is laughed away ---  then I might expect delivery around August 16th of this year and perhaps another week, August 23rd to have a technician install them.

June 21st to perhaps August 23rd to (hopefully) get this chair running again.  How long is too long to get timely service for a disabled member of society?

I spent $921.00 needlessly as it was not the source of the problem I had called about.  Several years ago I had pinched the joystick-cable connector in a doorway and cracked the locking tab.  I had taped up the connector and it worked flawlessly ever since.  It may have still done so until I retired this chair but now I'll never know.

I live in a rather rural area and am fairly able bodied so I do work around the property.  I wish to keep this Quantum running as long as possible to be used outdoors and around my shop.  I also want that second powerchair so that I never again am held prisoner by my chair, nor my Service Provider.

The house in which I now reside is a ranch style built in the early 1960's.  The doorways are narrow (and now scarred by my strikes -another post).  My manual chair with canted-wheels cannot make it through the openings.  At present, this Quantum 6000 is my only option.

By the way, I have put in a request for an evaluation for a new powerchair.  I did so over a month ago when I was told I would be added to a waiting list a month long.

I Spent the Summer of 2018
A Prisoner of my House!

*   *   *

Saturday, 28 July 2018

Greed, Engineering Stupidity? - Your Call...

Greed, Engineering Stupidity? - Your Call...

A day after having my Quantum 6000's joystick controller replaced, I'm still fuming that the diagnosis of my chair's power issue was incorrect and that I was stuck with a $921.00 bill for a component that was well used but entirely functional.

The new $921.00 joystick control unit,

My previous tech informed me that the Permobil control unit was built in China.  I imagine the Quantum is also a Chinese product.  Why China?  Well, for one reason alone - to save money for the manufacturer; not the client!

I suspect that the unit costs in the neighbourhood of $10.00 to mass produce and I'm probably overestimating.  Three film pressure switches; a row of LED lights; the gimbal joystick and a few chips and microprocessors within housing of recycled plastic.  Tack on the cost of shipping in overseas containers (literally a slow boat from China) and mark the product up 100%.  Stockholders and investors will be pleased.  The CEO can buy another Mercedes.

I can purchase an audiophile quality stereo component for about the same price as my joystick controller --- and it has a significantly greater number of electronic chips, components and circuitry than does the joystick.  Market size for these exotic components are probably smaller as well --- a poor excuse.

How can the cost be justified when many of the disabled relying on these products are destitute, unemployed, have no private insurance coverage and no huge wrongful injury settlement.  Well, the government will pay --- so jack up the price.  Remember it is not the government, but the taxpayer that pays and that means most of us.

So after they misdiagnosed my power issue, I was told I needed a new motor to replace the damaged one (the one which measured "bang-on" company specs a month ago)

The problem is that the small round housing holding one of the motor's brushes is cracked.  But you cannot replace the brush --- individual motor brushes are not marketed so you have to replace the whole motor.

'Can you imagine having to replace your car engine because you need new spark plugs?'

As I lamented in my previous post --- can you imagine needing a new spark-plug for your car and you're told the only way to get a new spark-plug is to install a new engine!

Technicians tell me that the motors are not repaired but are scrapped.  Crushed, ground up and melted to recover the metals.

A throw-away society that congratulates itself on being environmentally green!  Yeah, I'll light a candle for that during Earth Hour!

The engineering geniuses also designed motors that are not reversible; left can not be swapped for right or vice-versa.  Why?  As I understand it, they are attached to a frame or housing which only fits one side. Twice the needed inventory space makes no sense. (more on that further below). 

The Dual Quantum motors are indicated by the red arrows.  The also point to the lever which engages or disengages the motor from the wheelchair (so it can be manually pushed).  Simply flipping the motor over to the opposite side would put the leaver facing inward.  Can the black cap on the rear of the motor be unscrewed and flipped around to make the motor interchangeable?  Can a left motor be mounted in the right motor's housing?  I never received a clear answer from my tech.  I suspect it is not that easy,

When the motor(s) failed on my Permobil, they specifically ordered a left (or right) motor.  Is it different for the Quantum?

My issues are not with the Quantum chair, nor Pride which is the parent company.  This Quantum was given to me free of charge by a sympathetic friend and the chair was old with worn parts that would last an unknown duration.  It is well past its life expectancy but I wish to keep it going for heavy use outside around the garden and garage.

My final gripe is that nobody stocks parts any longer because of the cost of storage of a variety of parts that may or may not at some time be needed.  Very little is kept at the shop.  Everything seems to be ordered by carrier pigeon and shipped by that 'slow boat from China'.  No faxing orders --- no overnight courier shipping.  The client can wait --- they're disabled and have no life anyway.

You can't sell what you don't stock!  Unfortunately, with Shopper's Home Healthcare out of the wheelchair business (though they were incompetent), there is no alternative to turn to and therefore no competition,  Companies competing for clients would keep each other on their toes and serve their clients better.

Am I bitter?  Hell yes!  The franchise in this city is not run as efficiently as the previous one of the same name in my previous town.  Now that Shopper's Home Healthcare has divested itself of wheelchairs they are the only game in town.  There is no competition.  Service lags, long wait times for service and technicians are stressed.  It's a formula for disaster.

This chair will no longer climb my ramp and I was advised not to "push it" as it may fail altogether before replacement motors are available.

2018 may be the summer I spend indoors.

*   *   *

Friday, 27 July 2018

Summer Still Keeps Slipping Away

Summer Still Keeps Slipping Away
After waiting for One-Twelfth of a year I'm
Still A Prisoner of my Broken Powerchair

In my previous post I wrote about the power issues which suddenly developed in my Quantum 6000 power wheelchair.

Today marks a month to the day since the power issue was supposedly diagnosed and solution (replacement parts) recommended.  The technician arrived and replaced the suspect parts yet the problem remains.

 Will I also be a prisoner of Autumn?
I was a prisoner of summer from June 27th through to today, July 27th.
After waiting one-twelfth of a year (one month) for repairs --- and after a $921.00 replacement joystick (plus labour), the original problem remains.

To quickly review:  My Quantum suddenly developed power issues most noticeable when climbing the ramp to my home.  Where before it barely slowed when on the incline, suddenly it struggled and I had to compensate by pushing the joystick to the left.

The tech(s) (it took two) who diagnosed the problem inspected and measured the motors and said they were within factory specifications.  I was told the problem was the joystick which may not have been telling the motors to apply full power when pushed forward to the max.  I may have had to push the joystick to the left because the joystick's gimbal was no longer centered --- or such explanation.

I had once crunched the cord connector linking the joystick to the electronic control module at the rear of the powerchair.  Still, I had taped it up securely and it never failed to provide an electrical connection.

I had my doubts as to the joystick causing the power issue as the Quantum had plenty of speed and power when not on an incline.

 New $921.00 Cnd. (plus labour) joystick did not solve the power issue as the technician's diagnosis suggested.  A month later, back to Square One!

As the Quantum powerchair was being returned for my assessment, the technician noticed some damage to a motor brush housing which had not been noted by either technician, a month ago when one of the fellows tested the motors.  How this damage could have occurred is puzzling as the motor brushes are virtually flush with the motor itself and protected by the tire on one side and the lever which engages the motor on the other side.

 After completing repairs which did not solve my power issue, the technician noticed that one of the motor brush housings was damaged --- not noticed a month ago when they examined and measured the motors,  The red arrow at the bottom shows the damaged brush housing or plug which holds one of the brushes against the motor thereby providing power.  At the upper right of the photo is an enlarged view of the damage (arrow -half broken away).  The remaining arrow, pointing left, shows what an undamaged brush housing looks like.  The logical and sane solution would be to unscrew and replace all (4?) brushes per motor with new ones.  The repair would cost a few dollars (before mark-up by the greedy health care and manufacturing system!

So, the only recourse I was offered was to purchase a new motor to replace the damaged brush housing (for lack of a better description).  I was told the brush could not be replaced as they don't make replacements.  (how about an old discarded motor?)  To replace the brush --- you replace the whole motor.

Can you imagine having to replace your car's motor because you need new spark-plugs???  Urgh%#@*!

Not only that, but if one motor is worn --- or is failing, the other probably is reaching the end of its useful life.

This chair is my legs!  I have no choice but to order two new motors (about $!K each) after paying $921.00 for a joystick which I may or may not have needed.  Will it take yet another month (up to September) to get the motors?

So I remain a prisoner of my legs; of a malfunctioning wheelchair; of technicians who could not properly diagnose the problem; of the wheelchair repair franchise that cannot stock common parts nor order them in a timely manner; of the greedy manufacturers of medical devices; and remain a prisoner of my home while the summer of 2017 slips away outdoors.

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Monday, 16 July 2018

Summer is Slipping Away

Summer is Slipping away While I Remain a Prisoner of the System

Power Wheelchair's sudden loss of power has left me housebound a it now lacks the power to climb my ramp.  Beautiful summer weather outside, yet I remain a prisoner indoors.

It has been three weeks now since my wheelchair repair service inspected my Quantum powerchair and determined my power issues were due to a malfunctioning joy-stick control unit.

It took the first week to place the order for a replacement for they don't stock this most standard part for the most common of power wheelchairs.

Again I ask --- in a business world where orders can be faxed at near the speed of light --- and overnight courier services exist, why was I told that it would take an additional two weeks for the parts to arrive.  I just don't get it!

Summer is slipping away and I'm still waiting...

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Friday, 13 July 2018

Meet the Billion Dollar Mouse Or Spinal Cord Injury Research

Meet the Billion Dollar Mouse

One rainy day I became curious about how much money is spent on Spinal Cord Research nationally and perhaps globally.  Searching various combinations of the words Spinal Cord and Research and Funding, Costs, etc., I found nothing but frustration.  Most searches lead me to sites requesting donations or how to apply for a research grant.  Very few returns provided an accurate accounting of funds utilized in spinal cord injury research at any particular institute, let alone the total spent globally.

I tried the National Institute of Health (NIH), the Miami Project, The Rick Hansen Foundation, the Christopher Reeve Foundation, The Morton Cure Paralysis Fund, as well as checking the sites of various State research projects just to name a few.  Perhaps it is a closely guarded secret since the returns on investment appear to be minimal.  Perhaps I’m wrong and great strides are being made to “cure” spinal cord injury.  I have not seen it.

Every research facility receiving funding will have their spokesperson throw out positive phrases such as “we’ve made quite a bit of headway” or “our research looks promising” and always “further research is warranted.”  How else would you justify requests for additional grants?

As proof, facilities may trot out their resident lab mouse that tragically had his spinal cord transected by a sharp scalpel but now, post treatment, can run a marathon on a treadmill.  When a human can do the same, I’ll be impressed.

A Billion Dollar Mouse
Spinal cord injury is a global problem so it would seem logical that every major nation that enjoys advanced health care would invest some proportion of their health care budget in researching spinal cord injury and the means of restoring lost mobility.  I imagine that over the last number of decades, millions if not billions of dollars have been spent by countless institutes in many countries on Spinal Cord Research.  And what is the result?  A Billion dollar mouse.

Do I want research to continue?  Of course I do but I hold out little hope in seeing any major, useful and practical treatment in my lifetime.  Perhaps it will always remain ‘a bridge too far…’  I hope to be proven wrong.

Sorry, I remain cynical.

Spinal Cord Injury Research:

There appear to be three broad categories or strategies in treating spinal cord injuries which I’ve listed below.  I intend it only as a ‘thumb-nail sketch’ of areas of interest, research and treatment.

Acute Medical Intervention:
Minimizing Damage and Nerve Protection:  What can be done immediately after injury, or shortly thereafter to prevent or minimize the body’s own damaging response to the initial injury.  There may be some medical advancement in minimizing damage caused by a cascade of events which occur at or shortly after the initial injury.  Controversy still exists as to whether drugs, such as steroids, help or hinder events post injury.  The issue remains that the injured person must be rapidly transported to a major hospital knowledgeable in the specific procedures required to thwart further damage.

Repair Strategies through Ongoing Medical Intervention:
Bridging – Regeneration of axons along some bridging scaffold.  Cells need a pathway along which to regenerate if regeneration is possible.
Cell Replacement – Utilizing stem cells which will be programmed to differentiate into and replacing the damaged cells. 
Cell Regeneration – Encouraging one’s own body and its resources to replace cells or repair damage.

*There are many sub-categories within the general strategies listed above; too many for the scope of this overview.

However the damage is bridged or by-passed, the challenge is to bridge nerve A to nerve A, nerve B to nerve B, and so one down the line, correctly linking the possible thousands (?) of nerve pathways.  If a soup of stem cells is poured into the gap and they indiscriminately link nerve A to nerve W, you may try to bend your knee and find your toe wiggles instead.

By-Passing the Damage:
Wearable or Implanted Electronics to Exoskeletons & Robotics:  Electronic implants may have some use.  While I mean no disrespect to those engineers who developed computer driven exoskeletons, I can’t help think of David Letterman’s “Stupid Pet Tricks”.  Yeah, it can be done but to what end?  Exoskeletons may cost up to a quarter million dollars and then you might need your four best friends to help you into the contraption and to follow close behind in case you ‘turn turtle’ and end up on your back, unable to get back up.  While it may be a moral boost, being able to see the world at a normal height, affordability and long term functionality make the items impractical.  They’re a gimmick!

While I have a degree in science, it is not in neuro-science.  The above assessment is my personal cynical view after a quick perusal of Spinal Cord Research Internet sites.  For the tremendous amount of moneys spent on research, the returns seem to be sparse.

Update: July 16th, 2018;  I came across an interesting article related to this topic.  Entitled : Why Is Paralysis [Research] Being Short-Changed.  It can be found on the Spinal website.

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Wednesday, 27 June 2018

How Long are you Willing to Wait to Replace your Only Pair of Broken Shoes?

We disabled are truly second-class citizens, at least if you live in my part of the country; a large metropolitan city.

Once more I needed service for my dying powerchair --- this time the Quantum 6000.  This was a repair I could not undertake on my own.

First, a reminder about my Quantum 6000.  It was a powerchair which the previous owner had replaced with a new powerchair, meaning this Quantum had met the end of its life expectancy and the owner was eligible for funding assistance for a new chair.  With the Quantum now discarded, a tech friend of mine refurbished some worn parts and offered it to me for free --- sympathetic at my having to deal with my disastrous Permobil M300.

This is an old, yet a fairly reliable Quantum Powerchair.

Since acquiring the Quantum, I've had to replace dying batteries, and the front casters.  Most recently I had to jury-rig a spring assembly which I've now learned assists the casters in recovering from bumps a climbs.

Home repairs in my replacing the front casters and the broken spring assembly became a necessity when I was told there was a two-week backlog for service by my local Wheelchair Repair Franchise. An unacceptable  waiting period, in my opinion, for an absolute necessity for the most vulnerable members of society!

If your only pair of shoes disintegrated and fell off your feet --- just how long would you be willing to wait for replacement foot-ware??  Two weeks??  Even so, you could still get around your home with ease --- barefoot.

I've been using the Quantum 6000 hard --- no question about it.  Other than being able to walk away from the wheelchair, I am still very able-bodied.  I used the Quantum when I removed and repaired the blade housing from a riding lawnmower.  I've shoveled probably a ton of grass and sod into wheelbarrows.  Last fall I ran the Quantum up and down my ramp, hauling two-by-fours to construct a railing for my front deck.  I have driven it hard!

Two weeks ago, the Quantum suddenly lost power when driving up my front ramp.  It struggled to make it to the top when previously it did not hesitate.  I see no obvious problem and no home fix so I call up my wheelchair repair facility.

I was delighted to be offered a technician for the following day.  The technician promptly arrived and began testing the chair.  Both motors were within factory specification.  No obvious problems were observed though the chair did struggle to climb the ramp and appeared to pull slightly harder to one side.

Because of the age of the Quantum, the plug-in hand-held diagnostic instrument the technician had would not work on this 'obsolete' joystick (which retains error codes in memory).  The assessment could not be completed that Friday.

Another tech was dispatched on the following Monday with an older model diagnostic device who determined it was the Joystick which was causing the power issue.  It was pulling to one side, he said, because the joystick gimbal was worn.  (Then why does it seem centered when I'm driving a straight line - and why is the power issue only evident when on an incline?)

I'm told I need a new Joystick (~$1000 Cnd.) as well as a new connecting cable.  (I also asked for solid tires, but that is another matter)

He goes off that Monday and my impression was that the order would be placed that day or at latest, the very next day.  So I wait for the parts to arrive.

One week later, I get a call offering me the "official" cost of parts and labour --- asking if I still want to have the parts ordered!  (No, I want to pull myself around on the floor using the door-jambs for leverage.) I was polite.

I ask how long before parts are expected to arrive?  "Oh, about two weeks on average" I'm told.  "TWO WEEKS without my chair - without any shoes!!!

I just don't get it!  Orders can be faxed to the manufacturer almost instantaneously.  Courier companies work 24 hours a day, 7 days a week --- all year long!  Why did it take a week for them to place my order;  why does it take two weeks to have it delivered???  Have Amazon stock wheelchair parts!  They can get me products often overnight!

Many of these parts can be used 'cross-platform' that is, different models may use the same parts.  If each repair shop cannot keep an inventory of the most common parts known to fail, do they not have some common warehouse which could supply the franchise?  Can one shop not borrow from another?  Do the parts come from overseas, or as in the case of my Permobil, from the U.S. where once insufficient paperwork had the part rejected at the border?  Are there insufficient numbers of disabled in Canada to keep supplies on this side of the border?  Does anybody care?

What every happened to customer service?

I am currently eligible for financial assistance through ADP (Assisted Devices Program) for a new powerchair as the Permobil acquired through ADP is over five years old.  I have requested assessment in order to get a new chair (never again a Permobil), but again, the waiting list is one month for assessment --- then the waiting starts again for assembly and delivery.

It is a beautiful sunny summer outside but I'm pretty much housebound for the foreseeable future --- if not even further delayed.  What a way to spend the summer!

Note:  I intend to keep my Quantum 6000 as long as possible.  As a rugged second powerchair, I hope to use it exclusively outdoors and in my shop.  It will also serve as a backup to my primary indoor chair.

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Thursday, 31 May 2018

User Repair -No. 2

User Repair - Number 2 (When necessity drives action)

Having finished a day's work outside in the yard, I entered the quiet of my home.,,,  What the heck is that?  I get off the Quantum 6000 powerchair I am currently using and examine the lower right chassis from where the sounds seems to emanate.  There between the right tire and chassis I see a dangling spring --- one end connected, one end not.  Something is broken.

Checking the mirror-image left side, I see that the front of the spring on that side is attached to the pivot-point on the rear of the caster arm.  (Think of it as the elbow which bends up and down allowing your caster to bounce up or down over obstacles.)  The back of the same spring appears to be attached to a rod-like structure which drops down (from where?) and the bottom has a loop through which a tensioning-bolt protrudes.

It appears that by tightening the nut on the tensioning bolt, you can add or release pressure on the spring.  But for what purpose?  The front attachment point of the spring is fixed (doesn't move).  I cannot get down to floor-level to better examine the rod through which the tensioning bolt protrudes so I can't tell what it is attached to or if/how much it moves.  I would think it would have to move back and forth - otherwise why would a spring be necessary?  (if two fixed points there would be no need for the spring any more than driving two nails into a board and stretching a spring between them --- to what purpose?)  I cannot physically reach the rear attachment point to tug on it to see if it moves.  My wife was commandeered for the task which left me no further informed.

I downloaded a Quantum 6000 manual and though they have a couple of 'exploded' diagrams, none show the spring assembly in question.  Short of my jacking the wheelchair up from the floor and removing the tire, I cannot determine the function of this spring/tensioning assembly.

Repair Shop

So I unhook the dangling broken spring and remove the bolt from the rear attachment point.  It is obvious that one hook-loop has broken off of the spring.  I take the parts and head down to the only wheelchair repair shop in the city,  I show the parts to the receptionist who disappears into the bowels of the service department.  After a short while she re-emerges to tell me that all the field-service technicians are out on appointments but that a parts-person said they do not have that item in stock.  I was told I could make an appointment for a house call or one to bring the chair in for servicing. 

"How long is your waiting-list for appointments I ask"  for the last time I needed service (see broken caster-bearing replacement),  I was told two-weeks.  That was unacceptable!  Well, it the situation has not much improved.  The only other wheelchair repair franchise (Shopper's Home Healthcare) divested themselves of powerchair sales and service.  Now my service provider has acquired many of their clients, yet qualified wheelchair technicians remain in short supply.

The question is "what is the function of this tensioning-assembly and will I damage anything by driving without it" as the powerchair seems to drive as before the assembly broke.  I'm given no answers.

The Repair

So I go back to my home shop and root around to find a spring of somewhat the same size and tensile strength.  I find one but it is about an inch too long.  Below is my home-made replacement for the assembly in question.

The above photo shows the non-broken spring (left side).  It is difficult to see as it is tucked in behind the caster arm (to which it is attached) and is stretched to a second attachment point further back.  It is the small gray spring between the larger yellow spring and the tire.

A closer view:  Here you can see that the front hook of the spring goes through a hole in the clip which is attached to the pivot-point at the rear of the front caster arm.

Here is the rear attachment point for the back end of the spring.  It is quite difficult to see as it is hidden in the shadows.  (using a flash did not help as the bouncing light bleached out the photo.  The solution would be to drop a light in between the tire and chassis - something I was unprepared to do.)  The inset photo in the upper-right is somewhat clearer.

This photo shows the original right broken tensioning spring assembly.  Both ends of the spring should have the final turn made into a hoop.  As shown, only one hook is remains (at top of photo).  The second hook previously went through the hole in the bolt.  The bolt was then pushed through a hole on the rear attachment point (an arm with a hole in the bottom) A locking nut (pozi-lock or similar was threaded onto the opposite end of the bolt and tightened to apply tension to the spring.

Tools:  Because my replacement spring was about an inch too long I had to shorten it.  To do this, I took the temper out of the spring by heating it with a torch then letting it cool slowly.  When cool, I clamped it in a vice and used a hacksaw to cut the desired length from the spring.  The freshly cut end was then twisted outwards forming the hook. A file cleaned up sharp ends.  The spring was re-heated then dropped in cold water to once again temper the metal.  (I have no degree in metallurgy but this seemed to do the trick.)  The tensile (?) tension strength of the spring seemed about equal to the broken one when completed.  Totally unscientific!  Hope the tempering did not make the metal too brittle.  Aside: my shop is still a work in progress - this is my improvised shop on the top of a bucket.

Broken original on left (1) bolt with hole in one end and nut threaded on the other and (2) the spring with broken end-loop.  On the right is (3) the replacement spring I created and (4) the section of spring I cut off.

So here is my newly fashioned spring.  (1) is the locking nut which tightens against the rear arm attachment point (2) is the bolt with a hole through which hook of the spring is inserted.  (3) is the spring itself and (4) is the spring hook which attaches to the rear of the front caster arm.  The nut travels up or down the bolt to apply the required tension. (arrows)

Theoretically you would hook the front hook (4) through the hole on the rear of the front caster, then stretch the spring and push the bolt through the hole in the rear attachment arm.  Once through you would thread the nut onto the bolt and tighten appropriately. (whatever that is)

I said "theoretically" as in practice my wife helper and I found that my spring (as did the original one) have so much tension that it probably could not be stretched by any one person and would require mechanical assistance.  The bolt was only about a quarter of an inch too short to reach the rear mounting arm hole where the nut and ratchet nut driver would do the work stretching.  Technicians must have some sort of jig to do this work for them,  I have no way of knowing what tension had to be applied or if it is critical.  As both the original spring and my newly made spring seemed to exhibit identical strong tension (elasticity), I simply tried to match the size of spaces between coils of the original spring (left side) to my replacement spring (right side)

My solution was to replace the bolt (2) with an eye-bolt that had a longer shaft.  With the bolt shaft through the rear mounting arm hole, the nut was tightened with the ratchet driver.  Sorry, I failed to take a photo of this but it was an eye-bolt similar to the one below.

The hook end of the spring now went through the eye of the bolt.  The extra quarter-inch made the difference and it seems to be holding just fine.

Of course, once finished I find myself in our neighbourhood auto/mechanical parts store and find the perfect spring replacement in both size and tension.  Still there are no open hooks on either end but could be easily modified with a hacksaw or other metal-cutting tool. (arrows)

I wonder what the parts and labour would have cost at my service provider had they been available?

Ah, what desperation will drive one to do!

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Tuesday, 22 May 2018

Sexuality and the Disabled

Sexuality & the Disabled

Sex; Did I get your attention?  Sex; a subject of interest to all though I strongly suspect men more than women place it high on their scale of life’s pleasurable necessities.

I confess --- the title lies.  There are many different disabilities some of which are deafness, blindness, strokes, amputations, ALS and paraplegia or quadriplegia to name a very few.  I am not qualified to speak about most so I’ll keep to generalities --- and perhaps my own paraplegia.

All of you sociologists, psychologists and other expert-gists out there, don’t jump all over me for what follows as they are just my personal mental meanderings in this complex topic.

Just where does sex fit in on the list of life’s necessities --- or does it even belong in a list which includes air to breath, water to drink, food to eat, clothing and shelter for warmth and protection.  Most would add love to that list but would they add sex?

Men and women see the act of sex differently.  It has been expressed that women need a reason to have sex while men only need a place.  Stated differently, the male of the species can engage in sex without being in love however most women need to be in love before offering sex --- perhaps with the exception of workers in the sex trade industry, which after all exists to satisfy the male libido.  The perfect situation presents itself as two loving people engaging in adequate, fulfilling and mutually pleasurable sexual activity throughout the life which they share.

 Unscientific graph: Just my impression on Male & Female Libido.

If you are religious you can thank or blame God as you see fit when assessing the male sexual drive; otherwise substitute Biology as the culprit.  For the most part, our male drive is unquestionably higher than the female of the species.   An analogy may be that Men are the ‘gas pedal’ while Women are the ‘brake’ with regards to sex in mutual relationships.  Men want to go-go-go while women are much more likely to say no-no-no (perhaps slow-slow-slow) when it comes to sex (not many men get headaches at bedtime –though this has recently been contested*).  Still, as most relationships move forward --- between his accelerating and her braking, we as a species also manage to drive the human race forward yet not to hit too many children thereby avoiding the overpopulation zone.

I can assure you that it wasn't a conspiracy from millennia past, Neanderthal males dressed in loin-cloths, did not crawl out of their caves, dragging their clubs and knuckles, to sit around fires and conspire with others about how to annoy women with their sexual needs.  Yet that disproportionate God/Nature given sexual drive, for the reasons already stated, no doubt began at the dawn of evolution.  And that biologic imperative transcends species as researchers have found that male monkeys given bananas would save the fruit to trade with females for sex.  In the male, the drive for sex was greater than that for food!  (I’ve also heard that most women would choose chocolate over sex if offered the choice.)

This drive may be so intense that it is often improperly expressed.  One need only to read the daily papers to find stories of men’s inappropriate sexual advances, forcible aggression and even the horrors of rape.  Hormones, power, superiority, domination, hate, frustration, lack of self-esteem, lack of attention or love or perhaps childhood abuse is offered as the motivation behind sexual abuse.  The reasons, though diverse, never justify the act.  Sexual aggression transcends race, socio-economic status, education and profession.  Powerful politicians have fallen from sexual scandal; priests have been defrocked for buggering little boys.  Lawyers, doctors, and professors have all been accused and some convicted.  Sexual misconduct is almost exclusively associated with the male of our species --- I would venture to guess upwards of ninety-five percent.  However, females have also misbehaved --- most frequently reported are teachers who have seduced a male student or mothers hitting on their daughter’s male friends.

While I applaud the “Me Too” movement, I hope it will be used judiciously.  False accusations should never be used as a weapon.  Also I fear that politely-persistent and well-intentioned desires to meet that special someone may be misinterpreted.  I have to wonder if flirting is even appropriate anymore.

I don’t pretend to speak for all paraplegics, male or female, who may or may not be in a relationship.  However, I do believe we all wish to experience some degree of spontaneous and unsolicited intimacy with another human being.  We need another’s touch beyond that of a therapist or surrogate.  A simple touch, a cuddle, or an embrace may be sufficient.  The sexual act is simply the most intimate sharing of ourselves which we can offer to the one we love.  Depending on the degree of disability, adjustments will most likely be necessary.  Love and creativity will find a way.

I cannot imagine being born with a disability and living life wondering if you will ever find a partner to share yourself with intimately and yes, sexually.  The sexual tension, the frustration would be intense.  Without a loving partner --- without intimacy and without experiencing the pleasures of sex, you may be doubly crippled --- physically and emotionally.

So where is all this rambling going?   I am married yet have found myself living a celibate life even before having received my injury some twelve years ago.  I used the word ‘spontaneous’ in a previous paragraph meaning that intimacy, whether sexual or a simple hug, should occur without asking or prodding.  What recourse do you have when your partner shows no interest in intimacy?  Does leaning in to give a peck on the cheek count when leaving or returning from a trip?  Does it satisfy?  If you have to ask for intimacy, much, if not all of the satisfaction I believe is lost.  Counselling I feel would be even worse.  Do you learn to live without?  I believe it was Henry David Thoreau who quipped that “most men live their lives in quiet desperation.”  I suspect that Thoreau ‘wasn’t getting any’.

After my injury, I was not able to climb the stairs to our second-floor bedroom so necessity had me sleeping on a single ‘hospital bed’ in my living room.  Having moved to a single-floor home, my wife and I made the decision to have separate bedrooms.  Sadly for me, this was the only practical solution primarily due to my paralytic spasms.  For whatever physiological reason, spasms occur with greater frequency and intensity at night.  Spasms may last for an hour or two but have lasted for eight hours in a single session.  It simply is not possible to share a bed with someone when one leg or the other is jumping up and down for hours on end.  Kicks can bruise and trimmed toe-nails can still cut --- let alone trying to sleep with the continuous motion churning beneath the sheets.  Ongoing rhythmic spasms have frequently forced me to spend my night sitting on the edge of my bed cursing my own existence; something I don’t wish to share with my wife.

So, while I am a paraplegic, I can still wiggle some toes, I can walk short to moderate distances with a walker, however I simply cannot walk away from my wheelchair.  Short of walking unassisted, I am otherwise fully functional from my waist down.  I do however suspect that for me, intimacy, beyond a peck on the cheek is a thing of the past.  I do hope others who are disabled find someone with whom to share their intimacy and sexual pleasures.

*A recent study from the University of Kentucky disputes the claim that women lose interest in sexual relations before men.

A simple survey amongst my male friends strongly disputes the study’s premise.  Not one admits to having grown tired of sex or that requests from their partner to perform are too numerous to fulfill.

Monday, 30 April 2018

Neurogenic Pain vs Common Pain

A simple graphic to compare Neurogenic Pain vs what might be called 'Other Pain' or 'Common Pain' or perhaps 'Everyday Pain' and their response to analgesics (pain medicine).

Regular Pain when treated with analgesics

Neurogenic Pain treated with the same analgesics

So how do you relieve burning Neurogenic pain?  In short you don't.  You grit your teeth and learn to live with it!

To my knowledge there are only four drugs which currently claim to alleviate Neurogenic pain.
  1. Gabapentin
  2. Nortriptyline
  3. Amitryptyline
  4. Lyrica (Pregabalin)
Are there any others under investigation, development or under restricted use?

From my personal experience (and I imagine every injury is unique), the above listed drugs may reduce my pain by perhaps 10% at best.  And I've tried them all.

Now if someone burns you with a lit cigarette 100 times an hour then reduces the burn to 90 times an hour, will you accept the kind gesture with gratitude?  Absolutely!  But ask yourself, is the quality of your life substantially improved?

I continue to grasp at straws...

*   *   *

Friday, 27 April 2018

Permobil M300 - It Runs!

Anyone following this blog knows of my persistent problems with the Permobil M-300 motorized wheelchair.  Virtually every part of it had to be replaced  starting within months of purchasing it and with additional problems occurring every year thereafter.

Both motors died within months of each other and a replacement motor had to be returned as it failed to operate properly.  The electronic 'brain' or control unit also died and required replacement.

Still with all this done, one Permobil wheelchair motor would periodically cut out - that is, would not receive power.  This usually occurred while I was attempting to reverse.  With one wheel powerless, I could only turn in circles about the stationary wheel.

My wheelchair service providers could not determine the cause and Permobil U.S. headquarters were less than helpful in resolving the situation.  They required the error code displayed on the joystick module to determine the problem but there was no error code displayed.

It became a "Who's on First?" Abbot & Costello routine between my service provider and Permobil U.S.  "What's the Code?"  "There is no code!"  "Then you don't have a problem!"  "But the chair won't run!."  "Then what's the code?"  "There is no code." "Then the chair is not broken."  "But it won't run!"  "Then what's the code?...

The temporary solution my service provider found was to unplug the wiring harness connector from the motor not receiving power, wait a few seconds and then to reconnect the connector.  It seemed to solve the problem temporarily - like rebooting a computer.  Still the problem remained as it would cut out every few days.

The good news is that it seems to have corrected itself for about the last ten times I attempted to use the Permobil, it has run without any problems.

Still, it remains unsettling for if a specific problem was not found and a specific solution found, I operate the chair hesitantly, waiting for the next occurrence of the same problem.  It doesn't ease the mind when something fixes itself.  Why and how long are questions that come to mind.

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