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.

*   *   *

Wednesday, 14 February 2018

Bathroom Renovations

My plans after retirement were always to move into my elderly father's home and spend what time we had left together.  Although a paraplegic, I am rather high-functioning as I can stand - just cannot walk away from my wheelchair.  My hope was to be able to look after him as his abilities decreased with age.

Those plans turned out not to be.  My dad had what was thought to be a respiratory problem and was admitted to hospital.  While hospitalized, my wife and I determined it was a great time to renovate his single bathroom to make it more accessible to my father as well as myself.

Renovations were started in late September or early October of 2016, if I recall - and were completed in November of that year.  Renovations were not completed when my dad was discharged so he had to spend a week or so at our home.  That alone presented a challenge.  Although I had a fully accessible bathroom in my home, bedrooms were on the upper floor and presented an insurmountable challenge to my dad's arthritic knees.  I have lived in our living room for the last ten-plus years; my dad used the pull-out bed in the family room.

With renovations completed we moved dad back to his house and his newly renovated accessible, senior friendly washroom.  Sadly he was not able to enjoy the benefits for very long.  He had to be readmitted to the Hospital in late December and passed away there on Boxing Day.

While I can access the newly renovated washroom, it presents obstacles for myself - problems which we really couldn't work around without a major restructuring of the house.  The photos which follow document the changes which were made and how they compare to my previous home.

Finding a contractor to do the renovation was a challenge in itself.  Some reputable companies refused the renovation as it was too small and would not pay for their time or involvement.  We finally settled for a small contractor who was recommended through my father's church.  The contractor was a member of the church and was previously a police officer which gave us some assurance that although construction was not his lifelong advocation, at least he was reputable.

This is the washroom from my previous house.  The main floor washroom originally only had the vanity (sink) and toilet.  After my injury, the washroom was expanded by pushing it into my attached garage space where the shower was constructed.  Here you see a sliding (yet unpainted) pocket door which slid into the wall eliminating a swinging door obstacle.

Here is my large shower stall which made accessibility easy.  I was able to drive up to the edge, stand with use of the hand bar/grab bar/handrail and take a couple of steps over to the chair.  With such a large and accessible shower, I was able to clean it without any assistance.

A closer look at the hand bar and hand held shower.  I don't understand why the bathtub spout was added when I asked for a regular threaded tap as one would find for a backyard hose.

Another view of the handrail or hand bar, the single lever tap and the hand held shower head which can be raised or lowered by sliding on the vertical bar.

The standard toilet with no added 'mobility aids' attached or nearby.  I could stand and turn to sit by holding my powerchair or the vanity.  Note the original size of the washroom -the transition can be seen by the change of floor covering.

A view from inside the shower looking outwards at the vanity.  Again, with the shower stall pushed into what used to be the garage (about a third of the attached garage was used), I had a very user-friendly, spacious bathroom.

My father's house was a single floor ranch constructed in the early 1960's (Single floor not counting the basement).  Because it was a single floor, the decision (amongst other considerations) was made to move to his house and not move my dad into my former house.

The photos which follow were taken shortly after the renovation was completed however our modifications were not yet made (so pardon the untidiness).
As can be seen here, the bathroom was long and narrow.  A hand bar was placed near the toilet and one can be seen on the right side wall. (arrows)  The one on the right side wall was placed at the discretion of the renovator and I found it of little use (as will be discussed later) and I decided to remove it.  The vanity was narrower than the previous built-in unit.  The most narrow vanity on the market was purchased to allow my wheelchair the maximum room for entry.  The narrowness still presents a significant challenge in maneuvering within the room.

Have to watch the workmanship as you can see the new wallboard was dimpled when the handrail was added.

Another view of the handrail between the toilet and the shower seat as well as the handrail which I ultimately removed from the right side wall.  To get into the shower I park my powerchair near the far handrail and using it I stand then turn to sit on the tiled shower bench (here covered with towels & floor mat).  I can get undressed there and then swing my legs into the shower stall.  A rolled up towel is placed as a barrier against water running off the bench to the floor as we opted against installing a custom glass enclosure as originally envisioned.  I found this procedure to be the safest. 

Here is the tiled shower stall seat.  The original concept was to have a safety-glass partition where I have drawn in (arrow).  We were to contact an outside glass manufacturer who custom made these shower enclosures.  Ultimately I decided not to install this glass as I was better (and more safely) able to access the shower at the seat as opposed to where originally envisioned.
Note the raised marble threshold separating the bathroom floor from the shower.

Here is a better look at the dividing threshold.  Originally it was thought that my access to the shower would be by using the handrail (now removed) to step into the shower enclosure and by means of using the second handrail, to turn and sit within the glass enclosed shower stall.

Several problems were immediately encountered: Firstly, the wheelchair is parallel to the shower making it difficult to use the wall handrail as the wheelchair would have to be parked behind the handrail thereby making the distance to walk too great to do safely.  Secondly, a turn would be have to be made to sit on the shower bench or when finished necessitating a switch of hands on possibly a wet floor.  Third and finally, I narrowly avoided an accident on my very first shower.  I stepped onto the polished marble threshold while wet and my feet flew out from under me.  Only my grip on the handrail saved me from landing flat across the threshold and floors.  Polished marble was not a great floor material to use for a dripping wet paraplegic!  However, the renovation was for my dad and not specifically for myself.  Still not good for an arthritic octogenarian. Aesthetically, the marble colour and pattern chosen by the contractor did not match the marble top of the vanity which had already been purchased.  (incidentally, the marble vanity cost less than having the contractor make a custom built on covered by arborite or some other such material.  (the marble is faux marble -not the real stuff - just looks like it so much cheaper in cost).

Shown here is the handrail which I didn't find useful and removed.  I was suppose to use it to step into the adjacent shower but the chair would have to be parked behind the handrail and the distance travelled to the seat would be too great for me to navigate safely.

Here is the angled handrail which is useful in both the sitting and standing positions.  The shower cubbyhole is discussed below.

Okay -who has extra tall shampoo bottles and such.  Why did the contractor think the cubbyhole should be upright and not placed lengthwise.  It is not a load-bearing wall and regardless, a box could have been constructed around it.  Lots of wasted space for too few bottles!  Cannot supervise the contractor around the clock.  Let it slide...

The shower itself has the two usual components; (1) the shower head and (2) the hand held shower wand on a sliding pole.  A switch on the hand-held shower allows the user to chose between the two and spray pattern.  Because we opted against getting the custom-made glass enclosure, we installed a shower curtain rod & curtain.

The problem for me is maneuverability.  I have very little room for error as there is only about two inches of clearance between the chair and the wall and the chair and the vanity.  I drive in carefully and back out even more so.  After one year I'm happy to report that there have been no driving accidents within the bathroom.

Another view of my clearance.  Handrail in middle-top of photo has been removed.

Arrows by my wheels show the clearance I have between my Quantum chair, the bathroom wall and the vanity.  Yet no accidents after a year.

From the far wall looking back to the entrance door.  The original door had to be replaced with a wider one to accommodate my powerchair.  As you can see from this later photo, the handrail has been removed and replaced with a hand-towel rack. (oops, green cleaning-cloth left on house-coat hook)

I have a significant problem with the door simply for the fact that I drive into the bathroom and have to back out (there is no room to turn around as I had in my old bathroom).  As you can visualize, when I back up to the closed door, I have to reach over my right shoulder in order to grab the door leaver. You really have to be a contortionist to perform opening a door that is behind you while facing the other way!  As I open the door, it hits the back casters of my powerchair.  Driving forward a bit I have to reach back and open the door further.  This is repeated until the door opens enough for me to grab it over my left shoulder.  I repeat the process until the door now clears the left-rear caster wheel.  Awkward!

Installing a pocket door which slides into the wall space as I had in my old home was not possible here.  As this house was built in the early 1960's, the walls are lathe and plaster (no wallboard) so there is no space for them to slide into.

I may try have an electronic door opener installed and see if the cost can be defrayed by our local government tax credit.

The vanity came with the mirror however a matching medicine cabinet was purchased separately.  A brighter light fixture was installed in addition to an overhead light (regular and dimmer 'night light' modes) and exhaust fan combination.

One final nuisance remains, partially due to the contractors, partially from my own doing.  My dad, with his arthritic joints and bones requested a overhead heat lamp.  The contractor talked us into (we were agreeable)  a heated floor instead.  However, this raised the floor level which was less of a problem when the wall to wall carpeting was in place.  As the old carpeting was dirty, worn and dated, we chose to remove it and enjoy the hardwood flooring beneath.  The drop from the tile floor (1) (again, there is a marble transition threshold (2)) which lies above the sandwiched heating element, to the hardwood floor (4) is just short of two inches.  I placed a beveled hardwood transition filler strip (3) to ease the climb for the chair.  I should also add a quarter-round hardwood strip to join (3) to (2) -the gray line being the grout used to secure the heating element.  This spring I will pull up (3) and stain the maple hardwood filler strip to match the honey-blond colour of the hardwood floor.

My gripe with the contractors is that they left a big gap between the door casement (jamb) and the floor threshold (5).  This job appears unfinished.  I will cut and insert filler pieces to bridge the gap once I can get to my tools.  The door and casement are still in primer and have been dirtied during installation.  They will be soon painted.

Again, this renovation was primarily for my late father's benefit.  Unfortunately he did not get to enjoy it long.  I have another post dealing with the shoddy medical care he received which I believed ultimately led to his death.  The renovation 'killed two birds with one stone' if you will.  While it was for my dad, It benefited me and continues to do so.

I do thank Ontario's Healthy Home Renovation Tax Credit which helped significantly with the cost of the renovation.

*   *   *

Saturday, 11 November 2017

Some Cautious Positive Permobil News

For anyone using a Permobil M300 powerchair and has had interest in my ongoing problems with my Permobil, I cautiously offer some optimism.

 An earlier "clunker" to my Permobil M300; Note electrical cord plugged into rear of auto.

I am still involved in the process of moving from one house and city to another.  Having received the most timely offer of a Quantum powerchair by a friend, I was able to leave the Permobil M300 at my old house for use there while I pack and the Quantum at my new house - thereby not having to move powerchairs from home to home as I work at each location.  I save lots of room in the van in not having to move the chair each time; more room for packed items.

Over a year ago the Permobil's motors failed, one after the other - and one replacement motor also appeared to malfunction requiring its replacement.

More recently it was the power control unit (my term) which failed; the computer or controller board which distributes the power to the motors from the joystick commands.

Whenever I was at my old house using the Permobil, the powerchair would lose control of one motor.  With only one motor receiving power, all I could do is drive around in circles about that non operational tire. My technician contacted both Permobil Canada and the U.S. Permobil operation but neither had little interest nor solutions to my chair's problems.

My technician discovered that by unplugging the wiring harness' Molex connector to that motor and then reconnecting it - the system seemed to reset and become operational again.

This required someone to remove the rear plastic housing and unplugging/replugging the correct connector as described above.

This happened so often that I chose to leave the rear plastic housing off for ease of accessibility.

Okay - I promised some cautiously optimistic news on my Permobil M300.

It has not shut down over the last four times I have used it -several days at a time!!  Keep your fingers crossed for me!!
*   *   *

Monday, 16 October 2017

Hot Seat (Powerchair Fires)

I received a curious and distressing e-mail from a Pittsburgh Pennsylvania lawyer a couple of weeks ago.

The gentleman contacted me after seeing my blog and was specifically interested in my perpetual problems with my Permobil M300 power wheelchair.  He outlined that he was representing a family that had filed a wrongful death lawsuit against a wheelchair manufacturer and asked if I was willing to speak with him on issues relating to the Permobil M300 powerchair.  I agreed to help in whatever capacity I might be of service and e-mailed back my phone number.  The Lawyer again e-mailed me and said he would call the following Monday.

I gathered from his e-mail that the powerchair operator was using a Permobil M300 which had somehow ignited - resulting in severe burns to his body.  Sadly, the unfortunate gentleman had succumb to his injuries.  Apparently the family had reason to believe that the powerchair itself was the source of the fire and responsible for the man's death.

I waited for the call the following Monday but as far as I can discern none came;  I did not receive a call nor was there any message on my answering machine on that Monday or for the few days that followed.

I suspect that after some consideration, the lawyer decided that in spite of all my problems with my Permobil powerchair, self-immolation (burning alive) was not one of them and my assistance would not be worth the long-distance phone call.

Curious, I searched the internet for any 'deaths by wheelchair fire' in Pittsburgh and could only come up with one event that might match the description.  Though it occurred in January of 2016, it does take time for wrongful death/legal suits to be filed and investigated.  This seemed to be the most recent incident which fit the circumstances.

The gentleman in this case was found engulfed in flames near a stove in the kitchen.  The articles I found on the internet did not state the make or model of the wheelchair.  There were no other specifics offered to clarify if he was cooking at the time or whether he had a portable oxygen unit, etc.  The kitchen just may have been the closest exit or escape route to where he could find help.

I would think the burn pattern would be telling as to whether the powerchair was the source of ignition or there was some external source or event which engulfed him in flames.  I suspect from the lawyer's phone call that there was enough evidence to suspect that it may indeed have been the powerchair.

Pittsburgh Powerchair Article (CBS Local)

Pittsburgh Powerchair Article (Times Leader)

Pittsburge Powerchair (YouTube)

After a bit more searching on the web, I was distressed to learn that powerchairs erupting in flames is not a totally uncommon problem.  Apparently both Invacare and Pride powerchairs have had ongoing issues with powerchairs erupting in flames. I assume that have been adequately addressed and issues have been reduced if not eliminated.  When dealing with electrical devices, I'm not sure if it is possible to totally eliminate all dangers.

Other related articles which may be of interest:

Orange Observer Article

Texas House Fire

A Personal Injury Lawyer's Page with various incidents listed
The overheating and fire issues have been attributed to both manufacturing defects and possibly from sustained overuse.  Batteries and short-circuiting wiring harnesses have both been implicated.  In some cases a five-cent fuse may have prevented a fire from a short-circuit which for whatever reason (company profit?) was eliminated.

 As my wheelchair technician explained, wheelchairs, as any other product or commodity, are made as cheaply as possible: Not to save the consumer money by making the item affordable, but rather by maximizing profits for the company shareholders.  A few cents saved here, there and where-ever possible adds up to thousands of dollars over time.  Remember the stories about how airlines stopped handing out packets of peanuts on flights or that a fast-food franchise offered one squirt of ketchup on a burger instead of two resulting in  hundreds of thousands of dollars saved over a relatively short period of time.

So, I cannot confirm that the unfortunate wheelchair fire I presented here was in fact a Permobil M300, nor that it was the cause death.  However I did find it curious that I was contacted by a lawyer representing the family of a deceased individual who was operating a Permobil M300 when he received lethal burns.

The incident described by the lawyer allegedly occurred using a Permobil M300. Again the circumstances are unknown to me and must be proven before assigning blame.  Assume Permobil innocent until proven otherwise.

However, I will be much more aware of any heat or smoke when operating my own Permobil or my Quantum.

*   *   *

Tuesday, 22 August 2017

Do-it-Yourself Wheelchair Repair when Professionals are Unavailable.

Two week waiting list!!  Having moved to a new town, I call up the local wheelchair repair service of the franchise I have been using for the last few years (Motion Specialties).  Those who may be bored enough to follow this blog know that I had high praise for the franchise after my dreadful experience with Shopper's Home Healthcare.

I say "call up" however I first filled out their On-line Form requesting service, then with no reply, the next day I call their office only to find myself punching buttons to reach inappropriate voice mails (with no cue as to when to start speaking).  Still no reply, I send an e-mail and ask for a call-back.  Some time on the third day I get a e-mail (no call-back) telling me that the next available time-slot for a house call would be in the afternoon -IN TWO WEEKS TIME!

I`ve found out that their preferred mode of communication is via e-mail.  Who knew!

My first experience was fairly positive.  I wanted to introduce myself to their system so I unknowingly started by sending an e-mail with a summary of my problem, my make of powerchair, my address, etc, etc. The response was fairly prompt - within a day or so.

However, two weeks to receive a service call is unacceptable as anyone who is dependent on a wheelchair knows that the wheels are your life.

The phone situation was also unacceptable as if I become stuck in a sewer grate while crossing Main Street during rush hour during a rain storm while short of meds - I have to have some sort of emergency number to call which will respond promptly by phone, if not by service.  No emergency number was offered when calling their business.  No option to speak to a real live person was available.

I understand that the bulk of Shopper`s Home Healthcare clients were dumped upon Motion Specialties when Shopper`s abruptly closed without notice.  They also lamented that a service technician was on sick-leave as well.  More work, less staff; I understand to a point.

Here was my problem:  The weekend was two days away and I had out-of-town friends coming over.  The bearing in my Quantum powerchair had disintegrated - with parts spilling out from the assembly.  I need a technician to replace the bearing in my front caster so that I can enjoy the weekend with my overnight guests.



So what to do? I came up with several options - none of them acceptable.  My manual chair has canted wheels and will not fit through most of the doors in my home.

I settled on dismantling the caster wheel assembly and taking the broken wheel/bearing down to Motion Specialties and sitting there in their lobby until I received service.

Luckily things worked out and my faith was somewhat restored.

They had two new front wheels including casters in stock and I was able to purchase them (no questions asked).  I bought the two reasoning if one was in such bad shape, the other probably is too.  The bearings appear to be fitted to the caster wheel such that they are one unit and they are sold as such.  As I was prepared to do the work myself, I saved the cost of the service call!

With only hours to go before my friends arrived, I regret that I didn't take photos of the process.  However, for those who are capable and find yourself in a similar situation, below is what I did to change over the caster wheels.

A photo of the Quantum's front caster wheels removed.  The wheel to the left shows the bearing removed with remaining contents in the plastic bag beneath. The right wheel shows an intact bearing withing the wheel.  The axle runs through the smaller hole in the center of the bearing.

Start by removing the rear cap by unscrewing the two Phillips screws.

With the cap removed, the pozi-lock* nut is visible.  This nut screws onto a bolt which runs through the assembly.  To remove this nut you'll need two socket wrenches (17 mm or equivalent in inches)
*The Pozi-nut is a self-locking nut which prevents the unintentional loosening of the unit during usage.  It may go by other names depending on manufacturer/country, etc.

Shown above -the right front caster with a 17mm socket wrench below and one above.  The bottom wrench keeps the bolt from spinning while you loosen and remove the nut above.  Note how much of the bolt shaft protrudes above the nut and try to reproduce this when reassembling (explanation follows below)

Note:  When you remove the nut, the bolt can be pulled out through the bottom.  Caution:  The bolt holds a spring sandwiched between two cupped washers (upper and lower).  When assembled, this appears to act somewhat like an initial shock-absorber. Additional springs on the caster arms further soften the ride. (not shown)  Over tightening compresses the spring such that there would not be one there.

Next you will need two 5 mm hex wrenches for opposite sides of the caster assembly.  While the bolt that was removed above holds the wheel to the frame and acts as an initial shock-absorber, the hex nuts secure an axle along which the wheel can move up and down along bumps, cushioned by the spring on the previous bolt.  One hex nut is short (remember which side -will go in one way properly) and the other hex is part of the axle bolt.  Once the smaller hex nut is removed, use the hex wrench to push the bolt through the shaft in which it sits.

With these two items removed, the caster assembly should be free of the chair and can be removed to be worked on on a table or in your lap.

The previous photo showed the hex bolt on the inside (left side) of the caster assembly.  This photo shows the opposite side (larger face) of the hex nut.  (this is why you should remember which directin the bolt went in).  Hex wrenches in turned opposite directions loosens this bolt/axle for removal.

I had the wheel in my lap when I did this; recreated here for effect.  Two 13 mm socket wrenches turned in opposite directions (or hold one in place and turn the other) loosens the wheel axle proper.  It can be pushed through releasing the rubber wheel from the mount.  Careful as other metal washers will also come along - keep track of where these come from and replace when reassembling.  These washers generally act as 'spacers' or provide a more robust surface against which the bolt heads reside.

When reassembling, everything goes back in reverse.  You may find a tiny ring floating within the bearing which may impede the axle being placed through the tunnel.  I placed the wheel sideways on a flat surface used a small shaft screwdriver to center this ring so that the wheel axle passes through unimpeded.

I probably should change the rear caster wheels as well but I think that they generally get less pounding than the front ones and are probably in not as bad shape.  They are also somewhat larger in diameter but are probably easier to disassemble.

I put this Quantum chair through some very heavy usage at my new home.  I was doing some landscaping in my back yard and probably shoveled a ton of soil in the process.  The large, square patio stones have shifted over the years with frost heaves and between soil movement and weed growth between the cracks.  Crashing through, over and getting stuck in between the patio stones put a lot of pressure on the wheels bearings and suspension.

At least the Quantum runs.  The Permobil sits ant my other residence (still in the process of moving) and often fails to move on a flat, even surface.

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Tuesday, 15 August 2017

Permobil -Need I say more?

I was lucky enough to be offered a Quantum power wheelchair from a friend after seeing the never-ending problems I was experiencing with my Permobil M300 powerchair.  The Quantum was a "discard" after the previous owner operated the chair for some five-plus years and qualified for ADP assistance for a new replacement model.  The Quantum would have gone to the scrap heap.

With my ongoing move to another home in another city, I was delighted that I could now take the Quantum to my new home while leaving the Permobil at my old residence.  My primary wheelchair now became the Quantum with the Permobil as an unreliable back-up.  The Quantum was a 'God-send' as it was about an inch narrower and could fit through the doors of my new 1960's era home where the Permobil could not.

The condition of the 'hand-me-down' Quantum could not be guaranteed.  Regardless, I found it more reliable than the Permobil which has had just about every part replaced on it.  The Permobil is in essence a new powerchair which still refuses to run reliably.

I return to my old home with my manual wheelchair then use the Permobil to sort and pack my possessions for shipping to my new home where I have the Quantum.  Works out great!...Sort of.

Over my last four visits the Permobil has 'failed' three times.  By fail I mean that I have the continuing problem of the right motor becoming nonoperational resulting in my only being able to drive around in circles using the left operating motor.

My wheelchair service provider, Motion Specialties, has been great in trying to resolve this problem. The Permobil manufacturer - not so much. Both motors on the Permobil failed within a month of each other and were replaced -one twice.  The computer-controller unit has been replaced, yet the problem of why one motor cuts out cannot be solved.

Permobil headquarters in the U.S. asks for the 'error/maintenance code' that is being displayed on the joy-stick controller.  There is no error code being displayed!!!  Then they can't help us!  Their machine won't run, but they can't help.  Permobil U.S. did offer to sell me another motor at $1000+ Cnd, which would be the third replacement motor, to replace the one that cuts out.  That was their solution!

My service tech found out that if the motor is unplugged and then reconnected, the system appears to reset itself and the chair runs again....for a while.

So this is what I do now.  Every time the Permobil powerchair acts up, I have my wife unplug the 'Molex' plug to that motor -wait a few seconds and then plug it back in.  Just like turning a desk-top computer off and on again to reboot it.

The plugs are located under the plastic housing at the rear of the powerchair which is held on by two thumb-screws.  In anticipation of this being an ongoing problem, I have left the back housing off permanently.

The photo above shows the Permobil M300 with the rear housing removed.  The yellow arrows point to the three 'Molex' plug-in connectors.  One for each motor (Left and Right) and the central one which powers the controller [box in photo] itself (& joystick connection on the controller also).  Whenever my chair fails, I unplug the connector (right in this photo), wait a few seconds and plug it back in.  From this pattern, I suspect it is the controller which is the problem however it has been replaced (new) and my service tech even tried another from the shop with the identical problem reoccurring.  I do not believe it is the cable itself that shorts out or fails as simply wiggling it about does not solve the problem -it has to be physically unplugged and re-plugged.

As mentioned in previous posts, the Permobil fails when trying to reverse from a stand-still.  The chair is not under any additional load and it has always been on flat tile flooring or a low-pyle carpet.

So, for anyone else experiencing similar problems, try this and see if it works for you -temporarily as it may be.

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Wednesday, 19 July 2017

Paralytic Spasms

 The short video above best illustrates what I have to contend with each night when my paralytic spasms begin.  The jerking leg movements you see in the video are spontaneous and I have little control over them.  They 'trigger' every six seconds to every twelve to fifteen seconds and usually last one or two hours although the longest episode I experienced was eight hours.
My leg is jumping on its own - I am not assisting the movement!

Paralytic Spasms -they are almost as devastating as the paralysis itself. (but then there is also the nerugenic burning pain, sciatic pain and the stiffness too!)  How do you wish to be tortured?  Which agony will come to the forefront today?

I am on the maximum oral dose of Baclofen, however, I find it does acts more on tightness does little to reduce the spontaneous repeated contraction of muscles.  'Drip, drip, drip of neurotransmitter?  Does the injury prevent some signal which would allow the neurotransmitter to dissipate and therefor not accumulate until the 'neurotransmitter bucket' is full and now overflowing? Drip, spasm, drip, spasm, drip, spasm...

Devastating as they are, I don't wish to have some doctor insert a tube into my spine connected to a liquid Baclofen pump to shoot this drug directly into my spinal column. My opinion on the doctors I've encountered can be found elsewhere in this blog.

While I can get spasms any time of the day, they usually do not last long in the daytime.  It is only at night when they come on in full force with the leg becoming increasingly "creepy feeling" and then the contractions begin.

I don't believe it is because at night I'm reclined in bed with my feet up.  I may lay down during the day to read a book or such with no spasms at all.  Night time seems to be the common denominator in this puzzling formula.  Does one's physiology change so much at night and if so, what physiological product produce (or is lacking) triggers these unbearable contractions?  What is the exact mechanism by which Baclofen is supposed to work?  (another blog post?)

So you can see how devastating they can be.  I can show you the jerking motion but I can't give you a real sense of the 'creepy inflated burning tingling' sensation that ramps up when the spasms are about to start and last until they peter out.

Just as a moderate example:  If my leg jumps, say, once every 10 seconds, over three hours it would have jumped 1080 times.  Just try to sleep with some demon grabbing your leg and yanking on it all night long!  The above video shows the motion while I'm on my back.  On my stomach, the motion lifts my heel to the ceiling.

On rare occasions, putting pressure on the foot by placing it on a flat surface and pressing down on it may help.  Most times it just has to run its course -and hope you remain somewhat sane at the end!

I had previously wondered why my pain and spasms were so bad when my injury (infection around the T5 - T7 location) did not seem so severe.  While I still cannot walk unsupported, I have proprioception, sensation and can slightly wiggle some toes on either foot.  Then it occurred to me.  Perhaps my pain and spasms are so bad because my injury was not so severe.  If someone has a partial severing (crushing, intrusion, etc) of the spinal column, those fibers no longer connect and cannot transmit. Perhaps my spinal column is intact but due to the bacterial toxins and enzymes, the pathway is modified but the signals can get through.  I only know my own level of pain and sensation and no one else so how can anyone realistically judge another person's severity of sensation?  Perhaps what I feel as severe, someone else thinks is moderate or vice versa.  Curious...

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Tuesday, 18 July 2017

Accessible & Affordable Healthcare –A few thoughts on Ours and Theirs

As a Canadian, I have been watching with fascination the Trump administration’s ongoing attempts to repeal and replace the ‘Affordable Care Act’, or as Trump prefers to call it “that disastrous Obamacare.”

It is my personal belief that healthcare is a human right and not a frivolous luxury.  It is non-negotiable.   I also believe most Canadian citizens feel blessed to have universal healthcare coverage.   I have heard it described by some as healthcare “free” for our citizens.  It is not free – we pay for it dearly and hold it just as dear.  Others call it “Socialized Medicine”, then recoil, shudder and brush the term off themselves as if they had walked through a dense spider’s web.

We’re a democracy!  We don’t need any of that red socialism!  We’re proud capitalists!  You keep that pinko socialism in your own country!

But where does that term ‘socialism’ come from?  It is derived from the word ‘social’ (Society).  The dictionary defines the word ‘Social’ in several ways –here are a few.

  • of or relating to human society, the interaction of the individual and the group, or the welfare of human beings as members of society.
  • tending to form cooperative and interdependent relationships with others.
  • living in more or less organized communities.

America already had social institutions.   Nationally or Federally the American Military is a social institution.  All citizens pay for this service through their taxes and in return the country as a whole is protected by its military.  On the State level, State Militias may exist paid for by its citizen’s tax dollars

While private schools are commonplace for those who wish to opt out of local residential schools paid by one and all through their local taxes

Your local fire department is another social service.  Can you imagine the chaos if it were not?  Imagine if your neighbour’s house catches on fire and he’s not home to call his fire department.  Yes, I said “his” fire department.  If your town did not wish to have a social service of a common fire department, each homeowner would be free to sign up with one of the competing fire extinguishing services available in town.  You better have the number of your neighbour’s fire department as your own will only extinguish you house if on fire.

Socialism is simply working together for a common good – a common necessity.

I wish I had noted the name of the Republican spokesperson that stood before an interviewer and said “no American wants to have socialized medicine.”  I have to wonder if the parents of a gravely sick child would accept socialized medicine to save their child or would rather let their child die a fiercely proud red, white and blue American without that “pinko” taint on him/her.

Don’t get me wrong.  I too feel there is too much government involvement in my life.  The big wheels of bureaucracy burn far too much fuel and need way more grease for the meagre work accomplished.  However, the collection and administration of healthcare funds is not one of them if done proficiently.  Federal taxes collected could then be distributed to States according to population, age, specific needs.  Feds act as a ‘not-for-profit’  insurance agency however individual States know best how to distribute the funds as needed.

Why is the American Affordable Care Act faltering?  Why do costs rise so drastically?  Because it is administered by the Insurance companies.  While the government is responsible to the American citizens, the insurance companies are responsible only to their stockholders.  Capitalism at its bestIf people use the service (ACA) then there is a greater pay-out and less profit for the stockholders!  It is always about the money.

I fail to see any resolution of this issue if the Insurance Companies are left in control of the administration.  Liberal Democrats wish to see better and more extensive coverage.  It seems that Conservative Republicans wish for total independence; pay for it yourself or suffer.  And that same polarization – that divide is also seen within the Republican Party itself.  Moderate versus those staunchly conservative.  Eight years in opposition yet they have no well thought out replacement plan to offer.

It puzzles me.  So many Republicans appear to represent the “evangelicals” – from the “Bible belt”.  “Help thy neighbour, etc, etc.”

Take the U.S. Marine’s slogan of “No man left behind”.  Every warrior is my brother and all will be done to save you or recover your remains.  But the same sentiment does not seem to apply for the average American citizen.  Can’t pay for your healthcare, predisposing medical issue, etc?  -You're left behind -second class citizen…

The whole idea behind socialized medicine is that we all look out for each other.  We all pay into the system whether sick or healthy and by doing so we all look after our ‘brothers and sisters’.  So I don’t need it now, but I will age and will no doubt need it as the future nears.  And who among us can predict when an accident will occur.  I will gladly pay so that my neighbour or their child doesn't have to suffer.

Is our Canadian system perfect?  Not by a long shot but nobody wishes it repealed and replaced.  It needs to be tweaked when necessary.  It will always remain a work in progress.  I remain forever grateful it was there for me when I acquired an infection and became a paraplegic.  Six month stay in the hospital and I received no bill for their extensive services.  My fellow Canadians looked out for me and after I recovered I returned to work.  The taxes from my paycheck will look out for someone else.

America has a socialized military, elementary education, fire departments, police departments, utilities and so forth.  I find it surprising that Americans draw the line at socialized healthcare.  It simply astounds me...

Money for expanding the military and building walls, but not so much for looking after ailing citizens.  Go figure!

Although I have healthcare, don't shoot me for my opinion.  Just my point of view.
I do wish the best for my American neighbours whatever system of healthcare that may be.

By the way, I’m married to an American citizen.  

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