CBD Oil Relief

I was prescribed CBD oil in September of 2023 in hopes that I might find some relief for the paralytic spasms which have occurred nightly for the past 15 or so years.

The dosage I was prescribed was THC:CBD = 1:30 mg/ml.  The volume taken was ramped up over a period of time until a final dosage 1.5 milliliters twice daily was achieved.  The suggested dosing was 1.5 ml in the morning and 1.5 ml an hour or so before bedtime.

This regime worked reasonably well but since spasms occurred mostly at night, I was told by the CBD oil physician that I could "play around with it".  I decided to shift 0.5 ml from the morning to the evening making the dosing 1.0 ml in the morning and 2.0 ml before bedtime, thereby keeping the 3.0 ml volume initially prescribed.

I might have tried increasing the volume, but at $30/30 ml bottle, the cost would begin to add up.  As I use 3.0 ml/day, a 30 ml bottle lasts me ten days.  That adds up to 3 bottles per month or $90/month, or $1080.00 per year.  A hefty chunk of change for anyone on a fixed income.  Increasing my dosage would impact my bank account, yet what price for relief of physical and mental anguish?

My private insurance plan does not cover medically prescribed CBD oil.  I understand that the Federal Government does allow it as a tax deduction.  I will submit receipts at tax time when I've accumulated sufficient numbers to make it worthwhile.

I was skeptical anything would offer relief.  Baclofen which is supposed to calm spasms seemed to have no effect on me.  Oh, I'm certain it had some action, but it didn't make my life any better.  Once when I tried to ween myself off the seemingly inactive drug, I found that my legs, when spread apart, wanted to pull in together.  It had some relief on tightness but as for painful annoying, repetitive leg spasms - a leg which would contract and lift off the bed up to 12 inches then release and slam back down onto the mattress, over and over for hours on end, it did nothing.

After so many years of painful, annoying leg spasms, what was the result of adding CBD oil?  It has made a great difference yet it is not by any means a magic potion.  Spasms have lessened to a great degree and those that I experience are much milder.  Then again, every week or two, the original spasms return for a night to remind me that they still exist.  Though not 100% effective, I'm delighted that the CBD oil works as well as it does.

The question now is - why isn't this prescribed to all paraplegics as the first-line drug for those who experience paralytic spams?  While all injuries differ, it should be offered to determine the level of effectiveness in each person and in each medical situation.  To me, the oil's taste reminds me of when as a child, I might chew on a piece of straw or a blade of grass.  It has that sort of flavour.

I take the oil using a 1ml syringe however some sort of gelatin pills filled with oil are available.  Type of delivery probably depends on the volume of oil that you are prescribed.

The amount of THC, the active component of cannabis, is so low in the product that I was prescribed, that there is no psychotropic effect.  No, I don't get a buzz.

Has my life improved?  Sure.  But I still get spasms.  It's like someone punches you in the gut 100 times a night and then relief is offered.  You are now punched in the gut only 50 times a night and with somewhat less force.  Life still may suck, but I'll take whatever relief I can get, thank you.

*   *   *

Schrödinger’s Cat Develops a Tic

I can no longer remember the year I became paralyzed; the year I went to bed with a severe backache, then awakened to the realization my legs no longer worked. I tried so hard to forget. It must be some twenty years now.

 

After the hospital stay, the disbelief, the mourning and finally the acceptance, I truly tried to make the best of my life’s awful turn. I re-qualified for my profession and finished my career.

 

I joined a gym to strengthen my abilities. It helped but the gym began to change out old equipment for new whose configuration now prevented my access. I left with a torn tendon in each shoulder which the osteopathic surgeon claims he cannot repair. A painful nightly reminder when I attempt to sleep with my arms under my pillow.

 

Circumstances favoured my move back to my hometown. Previous posts outline my search for a family doctor. Four doctors in five years to be precise. Does no one remain in family practice for long? The profession has a revolving door.

 

Sent for a colonoscopy, I was already on the gurney with a line in my arm when the clinic declined to continue; they discovered I had cardiac fibrillation. That was news to me. Numerous tests followed that summer. Beta-blocker increased; blood thinner added. I was sent home.

 

Covid followed but I dodged that viral bullet.

 

April 6-7, 2022: Massive excruciatingly painful spasms for two full nights. My right leg repeatedly tried to tear itself from my hip joint. I screamed in the night. Doctors yawned and sent me home for rest. I no longer had the tautness, the stability to climb into our family vehicle. Additional independence was lost and has not returned. I’m now housebound.

 

I had the foresight to sign onto our local disability transport provider prior to April 2022. A ride can be booked no earlier than one week prior to its requirement, however, when I try, I usually find no rides are available. They are booked up. I have only used them for medical appointments. To date I’ve not missed any appointment but only because I sat on a wait-list praying for cancellations, begged, or agreed to arrive two hours prior to and/or get picked up four hours post appointment. Bring a book.

 

Childhood friends have died, moved or have problems of their own. This loner can no longer get out to meet new people. It’s a quiet existence. Solitude, which isn’t too bad for a healthy introvert, but not for one who’s a cripple. 

 

So much of what I want to do I find too high, too low, too far, too late, too soon, too, too, too... Help when offered usually comes with a caveat: later. Need usually leaves before later ever arrives. My ability shackled by disability at first taunts, then destroys my self-worth. (see tale of two ceilings)

 

I love my wife dearly. Thirty-eight years of marriage, yet loneliness persists. All men desirous of physical intimacy with the opposite sex. Most men long for more than they receive. We men are sexual creatures; it’s not a conspiracy but a biological imperative; I won’t apologize. Thirty-eight years of marriage and I estimate all intimacy ended within the first seven years. I can only recall about seven such intimate encounters in those early years and perhaps only two remain vividly in my mind. Aside from post-injury sciatic pain, my injury is from my knees and below. I otherwise still function normally. Yet I will not ask for what is not offered and I won’t take what is not freely given. Touching now involves bumping into each other while passing in the hallway; an apology follows. We have become housemates. I never expected a celibate marriage.

 

To paraphrase Henry David Thoreau, Most men live their lives in quiet desperation. Yes David, I know.

 

That intimacy issue aside, my wife and I have taken separate bedrooms for no other than reason than the sequelae to my injury. Nightly spasms cause one leg or the other to repeatedly kick, often for hours. Turning over in bed is challenging, often a necessitating grasp of the mattress edge, headboard or end-table for leverage. Insomnia is a frequent intruder. Sleep comes only after spasms subside; remaining asleep is the challenge. In the early morning, pre-dawn hours, I have no recourse but to turn to my books, laptop or ughh, that dreadful late-night programming on sell-evision to occupy my mind when sleep evades.

 

Tic -an idiosyncratic and habitual feature of a person's behaviour.

 

And that’s where the tic comes in. Years ago—I don’t recall precisely when, I heard someone hurl the most foul language at me. I then realized I was alone in the room. That tic grew over the years. I need no reason to lash out at myself with the most obscene, filthy language. Immersed in some task, I suddenly, spontaneously, hear that familiar voice break the silence as it berates me. I tell it to shut up but it doesn’t listen. I turn over in bed at night and curse myself mid-roll. When dawn arrives I wake and sit up, then immediately curse myself. This is not normal behaviour. That tic is now entrenched. Permanent.

 

 

 

Is my current existence like that of Schrödinger’s cat? Do I now exist between two states, neither dead nor alive—or in both states simultaneously. Am I suspended in my own state of superposition waiting for some event to initiate a collapse to one outcome or the other? Life requires energy input; death total energy loss. I can never be whole again so death is destined to be the eventual outcome. I curse myself. Schrödinger’s cat has developed a tic.

 

Nothing more can be done to alleviate my varied physical pains. I told my doctor that I’m in a poor state of mind; he smiled at me. Should I seek out some “professional” about my declining mental attitude? No, I can’t imagine any able-bodied psychiatrist being able to blow a ray of sunshine up my pant-leg. Relentless pain and spasms for twenty years have worn me down—they’ve broken me. They’ve won.

 

Am I suicidal? No. When that angry voice that shouts obscene expletives at you and you realize that you and the voice are one and the same, well, you also realize you can never outrun that voice. You are inseparable. Your tic would follow you into the hereafter and lambaste you there as well. If already dead, can one commit suicide in the hereafter to take you away to some further plane or realm? And yet I believe that voice would still tag along.

 

I have no children. I have no relatives (that I have met). My wife and I celebrate holidays across the dining room table from each other. Table for two. I am also an only child; I have no siblings. Growing up in the country, friends, peers, were at a distance. You either make friends with yourself or an enemy; I have always teetered on that knife-edge. I have access to four rooms in our house, two of which are the kitchen and bathroom; I try not to spend more time in the latter two than necessary. Housebound. Isolated. It’s not living. It’s a bleak, depressing existence. What is there that I can look forward to? I can enumerate all the joys experienced in my lifetime on the digits of both hands and feet. My worst fear is that I’ll live as long as my parents. Pain and that damn voice torment me without restraint.

 

And so it goes...

*   *   *

Feelin' Awful

 

Prisoner of Life

You are a combatant captured by the enemy during a war.  Your captors believe you possess valuable information they wish to extract.  What does your foreseeable future hold?

 Solitary Confinement:

Him: You are thrown into a cell; solitary confinement.  No contact with the outside world.

Me: As of April 2022, I can no longer step into our car.  I now rely on the unreliable public disability transport if I wish to leave my house.  I have done so 14 times in the last 19 months--all for medical appointments.  My world is what I can see from my windows.

Sensory Deprivation:

Him: You are deprived of everything but concrete walls and steel bars.  Your memories are your only source of entertainment.  Perhaps a Red Cross worker might be allowed to see you for an instance.

Me: I'm not so bad off, but I don't watch television; I don't play video games or board or card games.  While I have books and music, one cannot read or listen endlessly.  Friends have dies, moved or have problems of their own.  Contact is rare.

Physical Assaults:

Him: You are removed from your cell and beaten so bad it leaves you black and blue, swollen with joint and muscles sprained.  Perhaps they might pull out your fingernails or drill holes into your teeth in order to play with your nerves.  Fun and games...

Me: In April 2022, I experienced spasms so severe that I felt each contraction was attempting to tear my leg from my hip.  Spasms so explosive that I screamed on each "detonation".  The leg was so sprained that I could place no weight upon it.  Lesser spasms now continue nightly.  I have sciatic hip/nerve pain which I've described to the doctor as "the devil hammering a hot nail into my hip with each heartbeat".  I've prayed for my heart to stop.  Add to that the torn tendons I have in each shoulder for which the Osteopathic doctor said nothing [at my age] could be done to repair the damage.  Broke a tooth while confined.  Cannot get to my dentist and even if I could, could I now get onto the examination bench?

Sleep Deprivation:

Him: You are intentionally kept awake by your captors.  They shake you awake every time your eyes close.  They may blast loud music at you day and night; they may flood your cell with blinding light.  Your mind plays games with you when you haven't slept properly for long periods.

Me: Nightly spasms: Every night one leg or the other will begin to repeatedly bounce.  It starts with an indescribable creepy feeling for which there is no comparison in non-paraplegic life; you want to jump out of your own skin, but of course you can't jump.  You have no escape.  Every 15 to 20 seconds, the spasms lift one leg from the bed, then slam it back down.  Over, and over, and over... They can last for an hour or two but have lasted for 8 continuous hours on one occasion.  You cannot sleep with the devil lifting and slamming you leg upon the bed for hours at a time.

Electrical Shocks:

Him: You're taken from your cell, restrained and electrodes placed upon your private parts or elsewhere.  Jolts of electricity are sent through your body.

Me: Without notice an "electrical shock" hits some point from the groin downwards.  They certainly feel just like electrical shocks.  There are two manifestations: Pinpoint shocks just as if someone jabbed you with a straight needle; wave shocks similar to what you would feel if you touched a live 120V wire.  Pinpoints can occur anywhere from the groin downward.  Wave shocks are usually in the ball or the arch of the foot.  The repeat but usually fade out after a minute.

Unrelenting Discomfort:

Him: In your unheated cell, you suffer endlessly with the unrelenting cold that permeates you bones.

Me: I have unrelenting burning from my knees downward--neurogenic pain on which drugs have little or no effect.  Cold or heat, its permanence cannot be ignored.  Your mind constantly reminds you of the discomfort from which you cannot escape.

Me: Discomfort in my incapacity to use muscles as an ambulatory person would.  Muscles deteriorate, tendons shorten, contractures between layers of tissues occur.  Your body fights you.

Granted, my situation may not compare directly to that of the tortured soldier, but I believe there are significant parallels. 

I've come to the realization that there is not much else that can be done about my situation, fewer still in the medical profession who would care to try.

End for the captive soldier's situation might come about in two ways: He may be liberated from his torturers by an advancing army or an armistice between the combatants; or his captors may just kill him outright.  Either way your torment ends [except perhaps for PTSD, etc.].

For myself, I've given up hope on any sort of medical resolution.  There's nothing on the medical horizon that would liberate me from this pain and anguish.  My only other option would be some sort of miraculous biblical intervention but I'm not counting on it.

Perhaps Artificial Intelligence (AI), still in its nascent

They May Listen, But Do They Hear?

 Listening and hearing are different!

Are you listening to the words spill from my mouth while dreaming about this upcoming weekend?  Did you understand?  Did my words have any impact?  Do you sense my desperation?  Will you follow up with pertinent questions or offer valid suggestions?  Did the impact of my words move you towards finding a resolution to my dilemma?

In the previous post I wrote about my two new doctors that I have yet to meet and their "Miss-Two-Hats" clinical assistant go between.  A pleasant person to be sure, but my words, my frustration, my desperation, simply had no impact.

I reiterated my various pains:

• Neuogenic nerve pain - burning from the knees to the toes
• Sciatic hip pain - hurts on a good day; on a bad day if feels as if the devil is hammering a hot nail into my hip with every heartbeat.  I curse my heart for beating.
• Torn tendons in both shoulders; at my age, told to learn to live with the pain.
• Painful contractures in several fingers of both hands plus the beginnings of arthritis in my thumb.  Met with a plastic surgeon last spring but still unresolved.  Does the doctor no longer relay results? Is it up to the patient to chase the doctor?
• Painful leg spasms that last for hours, preventing sleep 
• Mental anguish of recently being housebound (unresolved)
  

I tried to relay my desperation; and no, I don't want narcotics.  I'm looking for some degree of relief.  I'm looking for a path forward.

I explained "Miss Two Hats" that I have no children and I have no relatives, but that I have significant pain and anxiety.  I told her that my worst fear is that I live in this state for as long as my parents lived--my mom to her mid-eighties, my dad to ninety-three.  As of April of 2022, I've become house-bound--dependent on public disability transport as I no longer able to get into our family vehicle; that issue also left unresolved by my "revolving door" of doctors in the medical community.  Life sucks!!

I followed that revelation by telling her that I've lost all faith in the Canadian medical system.

You'd think that either one of those verbal "bomb-shells" would elicit some words of understanding, perhaps sympathy (though I'm not looking for sympathy).  You'd think she might defend the medical system in which she is a participant in some capacity.  Yet it appears that my frustration, my desperation made no impact. 

She politely listened but did not hear--immediately concluding our phone conversation by saying she will follow-up (CBD oil efficacy) in the near future.  Goodbye.

I guess I had hoped in vain for suggestions as to how to proceed, how to resolve, lessen or at least manage the discomfort that envelopes my life.

*   *   *

Changing Hats

The preceding posts outline my current frustration with our medical system--how I'm on my fourth doctor in five years and my immediate problems remain unresolved.  I still want to add to the absurdity I experienced with the current medical clinic.

An appointment was made for what I believed would be a "meet & greet" initial session where the doctor and I superficially get to know each other, review current medications, discuss immediate concerns, etc., etc.

I was welcomed by a pleasant young woman who I assumed was a clinical assistant with some medical qualification. We began by discussing all the issues, as above, at some length.  I began to wonder when she would finish and bring me over to meet my new doctor.  It then dawned on me that this interview was my welcome to the new clinic.  I would not meet the doctor.

During my interview with this clinical assistant, I raised the issues of my neurogenic pain and spasms--both severely impacting the simple joy of living.  She suggested I try CBD oil (cannabis derived oil which has no euphoric, psycho-active properties).  Desperate for relief, I agreed.

 

 

Days later, I received a phone call regarding the CBD oil trial.  The young lady who questioned me identified herself but it didn't register at the time.  I now suspect it was the same woman who I interviewed me at the meet and greet.  We had gone over all that previously.  If it was her, she should have already known my answers; if not her, then the information I relayed should be in my file.  She then told me that in order to qualify I would have to be interviewed by Doctor so-and-so either in person or by a video conference.  Because of my current mobility difficulties, I chose the video conference.

Now, I'm not a fan of Microsoft's Windows operating system--they should have stopped at Windows-7 (I use Linux).  However, I have a laptop with Windows-12 or something like that.  Though I check all the parameters to the best of my ability, some permission was not set so when the allotted time arrived, I couldn't connect.  I phoned and apologized--now leaving the face-to-face interview with Dr. so-and-so as the remaining option.  I make the appointment.

I bolt on my footrest and make an appointment with disability transport.  I arrive at the clinic expecting to meet Dr. so-and-so but instead am once again greeted by the young lady who interviewed me at the initial meet-and-greet in place of my new doctor--and the person who suggested the CBD oil in the first place (most likely the same who had initially phoned me).

So I'm re-interviewed with the same questions when 1) at the initial meet-and-greet she suggested I try CBD oil; 2) she most likely interviewed me days later by phone, and now 3) I meet her again and not Dr. so-and-so face to face.

I have to wonder, why all this interrogation?  Are they making sure my story holds?  What story--that my legs burn and dance each night for hours on end?  This is not a psycho-active drug.  I can't abuse this or re-sell it as some dope peddler on the black market.

And so I have yet to meet my new family physician and I have yet to meet the cannabinoid doctor.  My only connection to this clinic has been through this clinical assistant, resident, or whatever.  She takes off the family physician hat and puts on the cannabis CBD oil hat.  I have to wonder if she has any other hats in her wardrobe.

I guess you have to show up bleeding or have some appendage dangling before an MD will grant you a face-to-face interview.

My how healthcare has changed

My Faith Shaken in Canadian Medicine -So What Now?

Oh how I miss those days when your family physician, with his little black medical bag, came to your house when you were sick.  A doctor that got to know his patients and often looking after them throughout their lives.

These days there's a waiting list to even find a doctor accepting new patients.  I've had four doctors in about 5 years.  Family physicians are considered to be standing on the lowest rung of the medical ladder.  Higher pay and prestige lie further up.  Can't fault anyone who wishes to improve themselves but the revolving door reality leaves much to be desired for our healthcare system.

My shaken faith:

• When in my twenties, four doctors, five if you count an allergist, failed to diagnose my sporadic bouts of rapid heartbeat, profuse sweating, weak and shaky legs, tunnel vision, disorientation and asthma.  I believed I was about to experience an heart attack whenever a spontaneous episode would occur.  I was sedated with Ativan or Valium and given a asthmatic "puffer" for my breathing.  Now I was just sleepy or dopey when episodes occurred.  It wasn't until I read a newspaper article of others experiencing the same symptoms that I could put a name to my symptoms: Panic Attacks.  No doctor had used that term for my symptoms.  A family member gave me some Anafranil (Cloprolamine) and said "take this, it settles my stomach".  I had no stomach problems but at that point I was borderline suicidal and didn't care if I took someone else's prescription.  After only a day, it was as dramatic as the curtains being drawn open to let bright sunshine in on a dark and dusty room.  Symptoms were gone and I could discard the inhaler.  I remained on the Anafranil for several years; a chemical imbalance in my physiology I suspect.  My doctor at that time told me, "we know a lot more about that now."  Too late to have helped me.

• In mid-2000 I experienced a severe debilitating backache.  I had to hold onto walls as I inched from one place to another.  I left work and came home to crawl into bed.  I wanted to take a shower, but couldn't lift my leg up over the tub.  Oh how I wish I could have and prevented my infection.  I had yet to find another doctor, my most recent physician having left for more fertile ground.  I went to a walk-in clinic where I was prescribed a muscle relaxant, then went back to bed (no urine culture, which might have offered a better outcome).  How many days went by I cannot recall.  I woke up one morning and my legs would not move.  Taken by ambulance to the hospital, an MRI revealed I had a spinal cord abscess caused by the bacterium Staphylococcus aureus. Surgery followed and I came out of the ordeal as a paraplegic.  I can only speculate whether my outcome would have been different if I had my family doctor at that time.

• While in the hospital, recovering from my spinal infection, I lost hearing in one ear.  At least two doctors, one twice looked into my ear canal with the otolaryngoscope but couldn't seen anything amiss.  So that was that!  I couldn't hear but nothing was wrong.  Once discharged I saturated some cotton with hydrogen peroxide and stuffed it into my ear.  I removed so much "black junk" from my ear canal which doctors couldn't detect.  I could hear again.  My ear had picked up some sort of infection from some hospital fomite (inanimate vector) such as a pillow.

• The most recent episode which continued to shake my faith in the Canadian medical system is described in the three previous posts.  In April of 2022, I experienced severe spasms in my right leg which sprained to to such a degree that it would no longer support me in standing or transferring or more importantly, in stepping into our family vehicle as I had been doing for the previous fifteen years or so.

1. Doctor No. 1, who I found after a year's search after having moved back to my hometown.  He told me all I needed was rest - which was what I had been doing all winter up til this April episode.  I went home and rested.  I did recover to some degree but not to what I had pre-April, 2022.  The strength, stability and tautness did not return allowing me to get into our family vehicle.  My limited independence is now all but non-existent.  I have to rely on disability transport.
2. Doctor No. 2: Doctor No. 1 left after about a year and a half with no one taking over his practice.  He had left me with a years worth of repeat prescriptions which was about the time it took to find another doctor.  At the "meet-and-greet", I explained my April episode to the new physician.  He ordered an EMG [meaningless without a baseline to compare it to - a before and after to see what changed] and an MRI [something specific diagnosis in mind or just grasping?]  The EMG was scheduled for early the following year (2023) and just about that time I received and e-mail informing me that he was leaving his practice; he was handing his practice over to another doctor.  [The EMG result confirmed that I was a paraplegic and nothing more.  Waste of my time and the taxpayer's money.
   
3. Doctor No. 3: At the meet-and-greet, I was interviewed by, I assume, was a clinical assistant - prior to meeting the doctor, or so I thought.  No, that was it.  I've not met my new family physician yet though I've been to his office twice.  I did hear from him though,  When the previously ordered MRI result came in he phoned me with the result.  I had previously heard from the Osteopath? or Neurologist? or their clinical assistant? who gave me a summary of the MRI results:  I needed immediate surgery for a bone spur which was causing my spasms and I could continue to take my Gabapentin [nerve pain] and Baclofen [anti-spasmodic].  Huh, did you not read my chart to see that I'm a paraplegic and am on those two prescriptions for life [or miraculous biblical intervention].  Were they misreading my original injury for a new problem?  I discussed this with Doctor No. 3 by phone and he patiently listened but I don't recall him challenging my assumption.

 

And so after hanging up I'm left wondering: Do I really have a bone spur causing additional problems.  Do I need surgery?  Was I misdiagnosed?  Will I ever meet my new family physician or will all diagnoses and results be offered by phone?

At the time Doctor No.2 ordered the EMG and MRI he also sent me to a plastic surgeon regarding my finger contractures and to an orthopedic surgeon for torn tendons in my shoulders.  The plastic surgeon injected one finger with cortisone and ordered additional x-rays and ultrasounds.  After a half a year or more, I have not heard back from their clinic. nor my new family physician regarding the results - prognosis or possible treatment.

As for the torn tendons in my shoulders, I was examined by the Orthopedic surgeon and his assistants and told there was nothing they could do for me.  I asked therefore if I should just learn to live with the pain?  The doctor then asked me my age.  I told him.  He just smiled at me.  The only way I could interpret his countenance was that I was close to death anyways, so why bother...

The summer of 2023 has for me been the summer of medical tests.  Yet no issue has been resolved and there is nothing more on the horizon.  I guess it's up to me to raise my fists and beat on their doors to do more to find out what ails me.

I won't even get into how the Canadian medical system hastened my dad's death.  I've relayed it elsewhere in this blog.

*   *   *

What Happened -Part 3

 A summation of the previous four posts:

Ever since my spinal cord injury some fifteen years ago, I was able to climb into our family van from my wheelchair for transportation to wherever I needed to go.  In fact I last did so in the last week of March of 2022 when I visited my out-of-town dentist.

Then, on April 6th & 7th of the following week, I experienced excruciatingly painful, explosive spasms which lasted all night till dawn with only a slight reprieve during the day before they resumed again the following night.

The spasms were so intense and devastating that I could no longer place my weight upon the leg for support during transferring.  I could lift my left leg upright and hold it taught; the right leg would sag and bounce when trying to do the same.

Here lies my frustration with the Canadian medical system:

I am now on my fourth family physician in five years.  I left my previous physician when I moved back to my home town.  Family physicians accepting new patients are rare in Ontario Canada - with some wait lists as long as five years.

Doctor No. 1 (2019-Summer 2022): Though some distance from home, I found a doctor accepting new patients.  I was with this doctor in April 2022 when my debilitating spasm event occurred.   He told my all I needed was rest but ordered an ultrasound to humour me.  I showed no abnormalities and the leg slowly did recover but not to pre-April capabilities.  I tried but could not raise my left leg while balanced on the wobbly right leg, high enough to step into the van.

Just when I was about to approach him again, I received a letter in the mail telling me he was closing his practice as there was no candidate willing to take it on.  I left my name with the clinic should events change and then the search was on again.

Doctor No. 2: (January 2022-May 2023) I received a call from the clinic that a new physician had arrived and was accepting patients.  I immediately signed up and shortly thereafter went to the meet-&-greet.  I explained my spasm event to the doctor during our initial meeting.  He ordered an EMG and an MRI [along with other tests unrelated to my spasms - trigger fingers, shoulder pain from torn tendon, etc.]  Whether do to the demand or Covid backlog, the tests were scheduled into the following year.  In May of 2023, some four months after establishing his practice, he decided to leave [for personal reasons].  There was another doctor at the same building but not with the same clinic who was willing to accept Doctor No. 2's patients.

Doctor No. 3 (June 2023-?): So I go to my third meet-&-greet for my fourth doctor in almost five years.  But I don't meet the doctor; I meet who I presume was a medical clinician for the doctor.  They listen to my gripes and take my notes [which will be scanned into their black hole, never to see the light of day again.  They suggest I meet with another doctor in the same office who manages pain.  When the time came to meet this pain doctor No.4, I meet with the same clinician.  So I have yet to meet my new doctor(s).

Results ordered by Doctor No. 3 began to come into his office. Negative results are not called but I finally did hear the voice of Doctor No. 3 when he called regarding the MRI. The hospital's neurology or orthopedic doctor's clinician had already contacted me regarding the MRI results, telling me that a bone "spur" was causing my spasms and that I needed immediate surgery. They continued by telling me that I should keep taking the bacolfen for spasms and gabapentin for nerve pain. That left me wondering if I really had a "spur" or whether they were misreading my original injury as something new. When Doctor No. 3 called, I explained my reasoning to him which he took in and didn't challenge.

The more I think about it, the more confused I become.  Was there something new and abnormal in that MRI?

I guess it's up to me to make another appointment and pound on the good doctor's door [or his clinician's] for I still am housebound and unable to get into your family vehicle.  Something suddenly happened to me in April of 2022 which robbed me of my ability to get into our family vehicle; the problem remains.  Though not solved, it appears Doctor No. 3 had dismissed my medical complaint and it's up to me to continue to raise a stink.  (Oh, you were serious about that issue?)

I remain housebound, having been off my property some thirteen times in the last seventeen months (since April 2022 to present) and all for medical or related appointments.  All trips were by public disability transit.

And so it goes....

Disability Transportation

 As mentioned in the previous post, since my massive spasm episode in April of 2022, I suddenly lost the ability to step into our family van for trips away from home.

As such, I have been off my property only 13 times in the last 17 months, as of September 1, 2023, and all trips were by the local disability transport, and all were for medical, or related (pharmacy flu/Covid) appointments.

I have not left my home for entertainment, to shop, meet friends or to enjoy a meal at a restaurant.  Nada! 

Local disability vehicle

There lies another problem.  Perhaps it's the staffing shortage - the employment lethargy which appears to have resulted from Covid.  People no longer wish to return to work after the pandemic viral slowdown or downsizing.  Perhaps it's the manner of the job.  Their paycheck perhaps not compensating sufficiently for their stressful work.

Though not highly skilled work, it does demand a compassionate, tolerant, flexible and even-tempered worker, whether a driver or dispatcher.  Clients may miss scheduled rides with routes and timetables constantly juggled and readjusted.  Clients can be in pain, can be surly, exhibit anger and frustration; they may require special attention, etc., etc.  How do the hire and retain competent staff?

The earliest the local company allows me to book a ride is seven days in advance.  I had a MRI scheduled in a year's time and was unconcerned about getting a ride to the hospital.  Perhaps I would have recovered sufficiently to be able to again step into our family vehicle.  So the week finally approached and in the early morning of the seventh day before my MRI, I attempted to book a ride to the hospital.  No luck.  All booked up. Many clients have booked "permanent" rides such as those who have perpetually ongoing trips to dialysis clinics for weekly treatments.  Others have full-time jobs and have booked up daily trips into work and home again.  The slots are quickly filled up.

One bus driver told me that city hall has cut funding for disability transport even though the "boomers" are getting older and living longer with age related issues.  Perhaps the city councilors have no relatives needing assistance - or have no compassion.  Can funding really not be found?

Well, I did get a ride to my MRI by constantly selecting an earlier time period for ride to the hospital.  I found a slot two-hours before my appointment.  I would read a book while I wait.

Another time I was placed on a "wait list" to see if someone cancelled their trip in a time-slot closer to what I needed.  No one did.  One is faced with having to cancel long-standing appointments or to hire a private taxi at a substantially higher cost, to get one to where they have to be.  This adds significantly to one's stress.

At present, I have no alternative.  I'm grateful the service exists but it's inadequate.  I choose not to use it for frivolous trips - to shop or for entertainment, hopefully leaving the service for those who truly need it for medical concerns.

Frustration: What Happened to Me?

 Part Two:  What Happened?  Some Improvement.

In the previous post I wrote about the massive spasms I endured on the nights of April 6th & 7th, 2022.  So devastating that the night-long spasms attempted to tear my right leg from its hip joint.  My left the leg was so sprained from the repeated contractions that it would collapse beneath me if I placed any weight upon it--particularly if I tried to swivel upon it, suggesting the piriformis muscle may have been involved.

Though I could step into our family vehicle the week before, I could no longer do so a week later--or now months later.  Winter lethargy could not account for it as I had been able to step into our vehicle for the last 15 years or so.  Old age too does not descend from the heavens to land upon one in a weeks time.

My family doctor at that time told me it was nothing serious and that I should just rest, though I had rested all winter.  To humour me, he sent me for an ultrasound which, as I suspected, showed no abnormality.  

While strength in that leg did slowly return over the next couple of months, my flexibility and in particular my stability did not return to the pre-April 2022 event level.  That inability became compounded by self-doubt to such a degree that I fear making more attempts to get into our vehicle, proving that I cannot.

Just when I was about to once more contact my doctor, I received a letter in the mail stating that he was leaving his practice and there was no candidate available willing to take over his practice.  He was kind enough to provide me with a year full of prescription renewals prior to leaving.  I had this doctor for less than a year and a half.  I left a request with the family group practice that if a new doctor joined their clinic and accepted new patients, to please contact me.

It was almost a year later that I received a call from the clinic that they had a new doctor,  I went to the "meet-and-greet" and repeated my "April" story.  The doctor booked me for several tests, some related to my "April" episode.  This was at the tail end of Covid and with backlogs or usual long waits, the tests would be the following year.

I had been scheduled for an EMG test (Electromyography) to detect nerve, muscle and related signal transmission problems.  I wondered what this test was supposed to show for, as far as I know, there was no baseline taken after my initial injury which resulted in paralysis.  One would have to compare the "after" to the "before" to see what had changed which may account for my recent problems.  The Neurologist looked at the results and in essence told me that I was a paraplegic.  Oh, so that's why my legs haven't worked for the last fifteen years or so.  Thanks, that explains it!

 I was also booked for an MRI (Magnetic Resonance Imaging).  I can only speculate as to why he ordered this expensive test.  Did he have something in mind or was it just a shot in the dark.  My layman's reasoning had me thinking that a problem at this level would remain or worsen but not slowly improve (though not to my original ability).

The results from tests ordered by this doctor had yet to come in when I received an e-mail this time informing me that my doctor of about five months was leaving his practice.  I had met him only once at the "meet-and-greet" session when he placed these orders (though I did meet him before his departure to go over the EMG results.  He concurred with my observation, that there was no baseline to which the new results could be compared.  The test told him nothing,

However, this time around, another doctor was prepared to pick up his practice.  I received an invitation for my third meet-and-greet session for my third of four doctors in less than five years.  In fact, I didn't meet the doctor but was interview by his clinical assistant.  So much for cultivating a rapport with your family physician.  Find any doctor accepting new patients and hope they remain long enough to see them twice.

Well, finally I received a phone call from what I gathered was another clinical assistant with the MRI results.  I was told I had a bone-spur which was causing all my spasms and that I should be booked for immediate surgery.  I was told to keep taking my baclofen (spasms) and gabapentin (nerve pain).  Keep taking them??  Did they not read my intake notes stating I was a paraplegic and would be on these two medications for life (unless something better was developed).  A bone spur?  Bull-sh*t!

My new family physician, (4th in 5 yrs) also phoned me with the results.  I had yet to meet him but he spoke at a moderate pace and most of all, he listened.  I told him my doubts regarding the MRI interpretation.  Was the MRI doctor (neurologist?) misreading the healing of my original spinal injury for some new problem or did I actually have a bone spur?  My new family doctor did not act on the MRI results forwarded to him leaving me to believe that I was correct,  The MRI was misread.  No bone spur; no operation.  At least that's what I currently understand.

That's how things now stand.  I've not recovered to pre-April 2022 levels of strength, stability and confidence.  My family doctor had not ordered any follow-up tests or procedures to get to the bottom of what really happened that April and what, if anything can be done to improve my ability.  He's made a stab at it and with negative results; I suspect he's willing to drop it unless I demand more.  I suppose it's up to the patient these days to keep returning and pounding away at the clinic door, demanding new tests in order to answer "what the hell happened to me."  ["Oh, you still want me to diagnose your problem?"]

The bottom line is this:  For the last fifteen years, previous to April 2022, I was able to roll up to and step into our family vehicle.  My wife would drive me to wherever I (or we) wanted to go.  After April 2022, I could no longer step into our vehicle.  As such I am dependent on local disability transport which comes with its own set of problems.  The result is that I have been out of my house (off the property) only twelve (12) times in the last 16 months (over a year and a half) and all the trips have been for medical appointments.

In my home I have access to four rooms: my bed room, living room, kitchen and bathroom.  I try to minimize the time I spend in the last two.

Quality of life has taken another tremendous hit.  More on this to follow.

 

Setback: Okay, what happened?

Part 1: Okay, what the heck happened to me?

Covid was waning and life was beginning to return to normal.  I had been vaccinated--twice, and never did catch the virus.

I had broken a tooth which necessitated a trip to my out-of-town dentist on March 31, 2022.  So I transfer to my manual wheelchair and roll up to our van.  I open the door, grab the hand-hold on the frame, haul my leg in first followed by my bottom.  I close the door; wife folds up the chair and places it in back, and we're off.

My dentist of some 30 years is accommodating.  I roll up to her bench and step over to it so that the repairs can commence.  It's the reverse going home.  Simple, no?

Less than a week later on the night of April 6th, 2022, I suddenly get such severe spasms that I think the devil is trying to dis-articulate my femur from my hip socket.  I scream not only from each unexpected explosive action that tries to take my right leg further than what is anatomically possible, but also the resulting pain.

Again, and again, and again - every 15 to 20 seconds or so the excruciating contraction repeats.  A contraction so strong that I cannot push my right knee down with both hands and all my might to straighten my leg until the spasm releases.

My wife hears my cries from another room. - I swear at God, the devil or to any other entity who might listen--that I can blame--that I can plead for sympathy, for relief.  Nothing...

This goes on until dawn.  I'm exhausted.  I get up and have coffee for what else can I do?  Dawn seems to have brought some relief.

April 7, 2022:  The nuclear spasms return in earnest the following night.  Explode, scream, release, swear, then repeat til dawn.

You've heard of suicide by cop, have you not?  I was trying suicide by God. I swore and insulted God in the most vile manner--even inventing new words for I had used up my most filthy vocabulary -words which would make a long-shore-man blush, and still found them insufficient to get my anger, my desperation, my helplessness, my hopelessness across.  Perhaps in his anger he would take me, but to where?  I was already in hell.  How much worse could it get?  Would four flaming horsemen of the acropolis apocalypse ride their steeds up my ass or would I just have to clean Hitler's latrine for eternity.  End it, please!!!

April 8, 2022: There was no repeat of the previous two nights.  Oh, I still get spasms nightly but they are gentler--like trying to kick the ceiling light fixture from where it had been installed.  Those destroy me as well, but they take longer - like trying to blow your brains out using a hair-dryer.

The result was that my right leg was absolutely sprained.  I could no longer raise it of the ground.  While my left leg raised straight in front of me could stay rigid and taut, the right leg was sore, sprained and would bounce when I attempted to raise it.

I could not put weight on that leg to transfer to my bed, or to the toilet or to any other surface.  It would collapse beneath me.  I had to slide across, drag myself over or devise some other means to change surfaces.

My doctor offered sympathy but no possible explanation for my episode.  He told me to go home and rest.  Go home and rest!! Well doctor, that's what I had been doing all winter long.  Winter lethargy doesn't materialize in one week--between March 31 and April 6.  Old age too does not drop out of the sky overnight.  My doctor sent me for an ultrasound to humour me.  It showed no abnormalities as I suspected.  He was off the hook.

Well, the leg did improve to some degree but I could no longer raise it high enough to step into our van.  I would lift my leg up and immediately fall back into my wheelchair.  Had more damage been done than I (and the good doctor) realized?  Had I just lost my confidence?  What?

More to follow in the next post.

Still Alive

 Still alive but distracted by life.  May post again soon when the spirit permits.

Y.

A Tale of Two Ceilings

Ceilings torment me.  I can recall the day that the doctors entered my hospital room and coldly announced that I'd never walk again.  After they departed, I was left alone with my thoughts.  Laying on my back I found myself staring at the ceiling.  So as to not dwell on the depressing news, I started counting the random perforations in the ceiling tiles.  When I lost count, I'd start again, and again....  That little act of insanity was keeping me sane.

So I slowly recovered and made progress but never recovered the ability to walk.  I could still stand if braced and supported, but that ability only goes so far.  I remain a prisoner of my wheelchair.

In the subsequent years I accomplished a great number of tasks which I was told I would be beyond my ability.  Still so many more were out of reach for my world was now within a "bubble" where I could independently go only so far left or right, forward and back and up or down.  As a proudly independent person, that loss was the most devastating of all.

Having moved to a new house several years ago, I decided to redecorate.  While I did paint the walls and most of the ceiling, I wasn't able to get close to the light fixture with the paint-roller (on an extender).  No matter, I would get it when the light fixture was exchanged for another.

My friends and family always offer help but it is on their timetable.  I'm impatient and want to accomplish tasks immediately when I see them calling out for service.  "We'll do that later," "not now," or "leave that for another time" annoys me for I found out long ago that if something is out of sight, it is also out of mind.  Another time may never come.  Repeated pleas for help often are deferred and chores remain undone.

I am too proud to beg; repeated requests become "badgering"; I have never ordered anyone to do anything, and so I remain quietly frustrated with my own lack of ability to complete tasks which were so easy to accomplish a number of years ago.  I now wait and wait for charitable service when that someone's mind remembers and the their body is willing.

So now I lay in my new room--freshly painted some three years ago, and stare at a different ceiling.  There was no time allowed for me to finish painting the small area beneath the previous light fixture.  "We'll do that later."  I was grateful that my friend exchanged one light for another--his dirty hand-print on the white ceiling reminds me daily of the help he extended.

 

 Arrows point to hand print smudge and beige halo around light fixture.

Nightly, I look at that beige halo on a white ceiling which encircles my light and find it a reminder of my inability to accomplish so many of even the most simplest tasks.  I doubt it will ever be painted in my lifetime.  How can such a small thing be so devastatingly depressing?

*   *   *

CPAP Cleaners - Marketing 101

 

While sleep disorders such as sleep apnea are not a "disability", but rather a condition or an affliction, or what have you--I thought I'd add my two-cents worth regarding the unnecessary hefty expense ($$$) of a CPAP cleaner on your wallet or the generosity of your insurance plan.  As of late, several brands have been forcefully marketed via television commercials.

Marketing 101: Increasing Sales: Make people afraid of something, then sell them an item or service which you insist will alleviate their fears.  This sales technique also works well in politics.

As a former microbiology laboratory technologist, I watched fellow Canadian William Shatner hawk a CPAP cleaner on television.  A good money-making opportunity is never lost on competitors and imitators.  Soon rivals began to promote their version of the expensive and unnecessary item.

What is a CPAP?  It stands for Continuous Positive Airway Pressure and is a device which supplies air under increased pressure, theoretically keeping organs of the throat from collapsing and blocking the airway.  When this occurs, the person may stop breathing for a number of seconds leading to oxygen derivation which, as you can imagine, may have serious consequences.  By gently blowing air down the nose and windpipe, most commonly via a mask which the user wears, the airway is kept open and theoretically results in a healthier and more restful sleep.  Surgery is another remedy but understandably it is less popular than strapping on a CPAP mask at night.

 Why do I claim it is unnecessary?  Think about it logically.  What is the source of the air the CPAP uses to blow down your windpipe?  It uses the same household air which you breath all day long before donning your mask.  Most CPAP units, if not all, have a pre-filter which cleans the dust, pollen and other particulates fro the air prior to sending it through a hose to the mask under the increased pressure.  While this is not a HEPA (High-Efficiency Particulate Air) filter which would filter out bacteria and viruses, it serves to make the air somewhat cleaner than that which you breath daily.

Most CPAP cleaners have a water reservoir which when filled with sterile distilled water, moistens the air so as to not dry out the users upper respiratory tract during operation.  Water condensate may be present in the hose after use, however, this vapor condensate is a poor medium to nourish the small amount of non-pathogenic environmental bacteria which may have made it pas the filter.  Remember, these are the same environmental bacteria which you encounter in you home on a daily basis, regardless of the amount of cleaning and scrubbing you perform.

When I first watched the television commercial for a leading brand of cleaner, I almost doubled-over in laughter watching the dramatization of a fellow vigorously shoving some sort of pipe-cleaner repeatedly down the hose in an attempt to scrub it clean.  I swear he appeared to be raising a sweat as his elbow pumped repeatedly like a piston in a revving engine.  If your CPAP tub is so soiled--if your CPAP tub is filled with fecal coliforms, then perhaps you're strapping the mask over the wrong orifice and you should re-read your manual!

"If your CPAP tube is so soiled--if your CPAP tube is filled with fecal coliforms, then perhaps you're strapping the mask over the wrong orifice..."

As a microbiologist, I cultured the entire inside length of several CPAP tubes* after weekly use and found very low numbers of common environmental "dust" bacteria such as several Bacillus species as well as Staphylococcus epidermidis and related non-pathogenic Staph species.  The face mask proved to have similar non-invasive common skin bacteria such as Corynebacterium species and Streptococcus viridans.  Unless severely immunocompromised, these should not be a cause for concern for the user.  Those are the same bacteria you commonly find in your home and in your nose and on your face.

However, some diseases such as Cystic Fibrosis result in the colonization of more hardy bacteria such as mucoid strains of Pseudomonas aeruginosa or coliforms such as Klebsiella pneumoniae.  If afflicted with CF and a CPAP is recommended by your physician, more frequent and thorough cleaning of the unit may be warranted.  Again, the commercial cleaners will probably not be up to the task.  Link: CPAP information for those with Cystic Fibrosis.

How to Clean your CPAP Hose & Mask:

Submerse the hose in a bowl full of soapy water and allow the solution to touch all surfaces as it runs through the interior.  The same soapy solution (dish detergent, or better yet, a hypoallergenic skin wash) can be applied with a damp washcloth to the face mask nightly before use or even once a week if your ambition so dictates.  Rinse all with clean water afterwards.

Too hard to periodically rinse with a soapy solution?  The leading CPAP cleaning unit sells for $399 dollars Canadian ($295 U.S.).  However, the drain on your wallet doesn't end there.  It is recommended that every six months, the user replace the Cartridge Filter Kit which retails for $40 Cnd.

So, how does the CPAP cleaner claim to clean the CPAP unit?  It exposes the surgacesto what it calls "activated oxygen" which is in fact, ozone.  While ozone does have antibacterial properties, the FDA claims commercial CPAP cleaners cannot achieve the level of ozone necessary to effectively kill the bacteria.

Apart from not being effective,, the odour of ozone may be retained by the hose/mask and must be flushed from the unit by those who find it offensive.

Other manufacturers use ultra-violet light (U.V.) as a source of sterilization.  U.V. light may be adequate for surface sterilization, however, it has poor penetrating properties and organisms must be exposed to the source for an appropriate length of time to be bactericidal.

In their own words, the FDA reported that devices claiming to clean, disinfect or sanitize CPAP devices or accessories (such as masks, tubing, headgear) using ozone gas or U.V. light are not legally marketed for this use by the FDA in the U.S. According the the FDA, it is unknown if these CPAP cleaners are safe and effective.

I am not a doctor and am not recommending any particular action.  It is up to the user to decide what they are willing to do or to spend in order to feel safe.  I simply wish to share my microbiological experience with CPAP units.

Any commercial broadcast on TV, seen in print or found on the internet, can be broken down and explained in ten words: "Send me your money and your life will be better."

*I no longer have possession of my study and won't further bore the reader with recalled specifics.

*   *   *

Chair Etiquette

Where were you raised?  Pick-up after yourself.  Put it back when you're done!  All common pleas from frustrated parents, particularly exasperated mothers.  By the time you reach adulthood you should have learned a few lessons--neatness and orderliness among them.

While enjoying a cup of morning coffee under this morning's sunrise, a good friend dropped by to join my on the patio.  Pulling a chair from under the patio table, he planted himself firmly before enlightening me to the recent events which had transpired in his semi-quarantined life.

Our chit-chat slowly tapered off until exhausted.  Screech...the chair pushed back and turned askew as my dear friend rose to continue his day.  And there the chair remained--where his posterior had deposited it--nowhere near the table from whence it came.

I was reminded of the daily battles I fought with lunch-room chairs at my workplace before my retirement.

The fact that I was disabled could not have escaped others present--imbibing on their morning cup of java or chowing down on the meager cafeteria offerings.

As a group from one department or another rose in unison to return to their daily travail--their chairs pushed out in a row askew--facing this way or that, some further some nearer.  Deposited like mines in the channel, they sat in wait of my attempt to sail my wheelchair through the course their recent occupants had laid.

My colleagues were no better.  They stood likewise and with nary a look back at what was preventing my motorized butt from keeping up.  They just danced they're serpentine do-si-do dance, weaving in an around the chairs as they made for the dance-hall exit.

As I approached each abandoned chair I had to stop, reach out with both hands to lift and shove the chrome and fabric monstrosities from my path and return them one by one to the table to which they belonged.  With order in my universe thus restored they could now be photographed for display in an Amazon sales ad and I could be on my way.

People, when you finish your lunch, don't leave your mess on the table for others to deal with.  Deposit it in the refuse receptacle provided.  Mothers using the drop-down baby change tables in public washrooms--return the table to the folded upright position so that it does not block by entry to the washroom.  Unless disabled, don't park in disabled parking spots (laziness is not a valid disability!)  And please people, put your chair back from where you got it even if there are no disabled persons in your workplace.  It is just common courtesy and do your mother proud.

*   *   *

Lost & Found

About one year after receiving the Quantum Edge power wheelchair, I can say that I'm quite pleased with the model.  It is certainly a vast improvement over the disastrous Permobil M300 which was in-operational more often than not.

Plastic!  I am no fan of plastic.  Oh, it's a fine product but is used in the wrong place--as a wrong material, perhaps 90% of the time.  Why?  Because it is cheap--yet the savings are not pass onto the consumer but are hoarded by the manufacturer and/or vendor.  Overall, plastic is less durable over time, immediately more fragile and subject to ultra-violet (sunlight) deterioration than comparable light-weight metals--just to name a few properties.

Wheelchair manufacturers use plastic over light-weight metals now more than ever citing cost and weight as justification.  I believe profit is the only motivating factor.

Several months ago, I pulled up to my bedside with the intent to transfer.  As the power-chair approached, the left front caster arm grazed the metal bed frame which just happened to be at the appropriate height to pop the plastic cap to the caster pillar like a bottle-opener to a bottle cap.  Off it flew.  I could hear it pop but I could not tell to where it flew.

So I retrieve a mop and sweep under the bed.  Nothing.  I check the other side of the room--perhaps it rolled in the opposite direction.  Nope.  Under the book case?  Nada.  Ah-ha! I won't get fooled.  It had to have flung back into the wheelchair itself.  I retrieve a flashlight and prod all the nooks and crannies with a narrow ruler.  I can't pick the power-chair up and shake it out.  It doesn't appear to be on the chair or foot rest.  I'm perplexed!

That plastic cap had been attached to the caster pillar or post by friction.  The cap is manufactured with a lip, perhaps one-sixty-fourth of an inch smaller than the diameter of the pillar or post onto which it fits.  The assembler places the cap onto the pillar and with a slap of a closed fist or rubber mallet, drives the cap home.  The trouble is that an equal and opposite force just as easily removes the cap as there are no threads or set-screws to secure it to where it has been placed.

After weeks of scratching my head and wondering where the plastic cap had  gone, I gave up.  Perhaps it now resides with Jimmy Hoffa as the concrete foundation of a high-rise or with Amelia Earhart someplace off the coast of the Howland Islands.  Maybe its with the Amber Room and other lost Nazi plunder.  A black hole may have momentarily opened up in my bedroom and drawn the cap into its singularity, never to be seen again.  But life goes on as house-dust, saw-dust, garden leaves and other life's refuse gathers in the cup to keep the caster's retaining nut company the same as the lint which must accumulate in a vagrant's navel.  The "spontaneous breaking of symmetry" as a quantum physicist may note.  I hate that the left side looks different than the right even more than having use forceps, a vacuum or whatever, to keep the dust and detritus from accumulating.

Now this 2-inch diameter plastic cap might have been manufactured with a thimble-full of molten recycled plastic costing one-one hundredth of a penny for material and labour -- plus shipping and handling, for of course we all know from endless commercials that shipping and handling are extra.  Yet I'm certain should I order a replacement, I would be charged perhaps $25.00 for the opportunity to lose it a second time.

So what happened to that cap?  Over the next few months I would find a curious and unidentifiable dark gray-coloured piece of plastic here or there in my travels.  On four largely separate times, the chair suddenly jolted to a stop with a chair icon flashing on my controller--twice forward twice backward.  I still didn't clue in.  Then I found the major segment which comprised the top of the cap--well chewed as if a salivating puppy had found a new play-toy.

The cap had in fact flown back into some dark crevice in the chair and resided there for some time until through bumps and jostles it worked its was down to some hidden [from me] but exposed drive-gear mechanism where it would be periodically fed to the grinding teeth.

So now the chair grins back at me like some boxer who has lost a tooth.  It mocks me in knowing I was outsmarted by a wheelchair...

Just a few of the pieces of the cap left like bread-crumbs leading me to the answer of what happened to my caster cap.

One can see that the cap which covers the top of the caster is missing on the caster pillar seen at the right of this photo.  It covers a large retaining nut which holds the post around which the caster swivels.  Not just for aesthetics, the cap keeps foreign materials and moisture from the nut so the swiveling action is not impeded.

*   *   *  

Government Scrimping on Wheelchair Seating

When I acquired my latest power wheelchair, the Quantum Q6, I requested a seat cushion, a GeoMatrix model which I had once used on a loner chair (while my Permobil was yet again nonoperational) and had found it fairly comfortable.  The cost of the wheelchair and seating combination was partially subsidized by the government's Assistive Devices Program (ADP).

I also purchased a second seat cushion identical to the one I had been using on the Permobil, a Prism Supreme II.  As the government subsidizes only one seat cushion per applicant, I paid for this one fully with my own funds.

I had found that a periodic change of seating contributes to comfort.  Regardless of the cushion's design or quality, prolonged sitting will inevitably result in discomfort.  One cushion may be superior to another in certain situations  

When I received the cushions I noticed my vendor only supplied one seat cover per cushion whereas when I received my seat cushions for my previous two chairs, they always came with a replacement seat cover.  Asking my vendor about this, they replied that the Assistive Devices Program no longer supplies a second seat cover for the seat cushion provided.  "Why?" I asked.  My vendor shrugged and told me the obvious, "In order to save money."  Unless the wheelchair user claims to be incontinent, which I am not, an alternate seat cover is not provided.

Through ADP, I previously received two seat covers per seat cushion so that the used cover could be swapped out for a fresh cover when the other is sent to the laundry.

From my vendor, I now understand that each cushion comes with only one seat cover.  So when the users seat cover becomes soiled for whatever reason (perspiration, spills, and yes, even accidents), one must transfer to some other surface and remain off the wheelchair for however long it takes for the soiled cover to be laundered.  (What if you do your own laundry at a laundromat?)

What a chintzy way of saving money!

Does one have to prove they urinate or defecate on their seats in order to get a second seat cover to use while the other is laundered.  Do you have to have an "accident" on command, or would a note from your healthcare provider suffice?

I suspect that even the most penurious, down & out homeless person has a second pair of britches they could put on while the first pair take a spin in a laundromat or rainwater barrel.

 

Even those television commercials hawking some product or another shout "But wait!  We'll even throw in this travel pouch to contain your widget, a thirty-dollar value, for free!!!"

There is nothing special about these cloth sacs which should warrant a premium price and therefore what savings could be realized in denying the disabled a second cover?

I'm unaware of other's experiences with seat cushion covers, but my seat covers, two at that, quickly show wear and tear simply form daily usage.  Seams separate, material shreds and zipper's snag.

Something of which I was unaware - ADP does subsidized the replacement of a seat cushion every two years (as opposed to five for wheelchairs).  How long this will continue is uncertain as my vendor revealed that they had heard the government's Assistive Devices Program may be terminated.  I wonder if this is the ultimate cost saving measure?  Would the program be replaced by another, or would the disabled be left high and dry to fend for themselves?  Who among us, even if employed, can afford a $10,00+ power chair every five years or so?  And which wheelchair vendor and repair facility could stay in business if the disabled are no longer able to obtain the mobility devices they need?

I have not confirmed these rumours with ADP itself.

Blake Medical's GeoMatrix seat consists honeycombed gel sheets of select densities.  While the gel itself doesn't breath, the pockets do offer some ventilation particularly when shifting.  A third gel cushion may be inserted for extra weight-bearing capability.  One thing I've noticed is that the gel "pockets" slump forward when going down a steep ramp and offers a sensation that one is sliding off the seat.

My GeoMatrix seat cushion was priced at $621.00 Canadian.

The seat cushion I bought outright (with my own funds) was the Prism Supreme II.  It consists of various density foam blocks, stacked and contoured.

My Prism Supreme II was priced at $459.99 Canadian.

I can buy a full-size living room sofa for the same price.  Somebody must be making a huge profit on these simple items.

I suspect that each cushion has been individually inspected, sat upon and blessed by the Minister of Heath and the prices charged support his/her six-figure salary.

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New Power Wheelchair - My Third

Anyone who has stumbled upon my blog may know of the troubles I encountered with my second powerchair--a Permobil.  Problems with that powerchair began almost immediately after taking posession of it, and continued to where virtually all parts of the chair had been replaced, at least once--well before I was eligible for government support in purchasing a replacement.

Since that time I've heard from numerous owners of a Permobil with similar issues and frustrations.  My personal advice is to stay away from this flawed brand!

My first chair was a Quantum, which ran well for seven years, with only one motor (under warranty) and the joy-stick needing replacement in that time period (not including normal wear on the tires.)  It was repossessed by the ADP government agency on my receipt of the Permobil (something to do with the tilt-seat which I really didn't need in the first place).

The Permobil was a nice looking chair and I was assured by the vendor that it was reliable.  I regretted the choice early on.  The curly-cue sides rails do not permit hanging side pockets for personal items such as keys, etc.  The only plus-side to the design of the Permobil I found was that the motors can be disengaged at the front, by the user, rather than at the rear.  This may be useful if you have some use of your limbs, as I have, to maneuver yourself to a more advantageous location during a breakdown.

A sympathetic friend found a used Quantum 300 powerchair which he offered for my permanent use.  This workhorse freed me from the Permobil nightmare and it continues to work to this day (I did replace both motors after one failed).

On July 12, 2018: having met eligibility for a replacement powerchair, I contacted an Assisted Device Program (ADP) representative at a major local hospital, requesting assessment for a new wheelchair.  I received by e-mail a Microsoft Excel form to fill out with my pertinent information, which then was returned.  This I did and then waited.

August 10, 2018: Not knowing how long these things may take, I waited patiently.  Not having received an update on my submitted request after a month, I again contacted the ADP representative.  She claimed not to have received my e-mailed Excel document.  I suppose I should have asked for a receipt on submission.  I found the original document in my "sent" folder and re-sent the same form which they now received.  (my e-mailed document did not "bounce back".  They must have lost it,)

September 18, 2018: I met with this ADP representative in my home where she assessed my needs and took measurements of my freebie Quantum.  She filed my request with the government agency and we waited for approval.

Late March, 2019: Almost a half-year after my request was filed, I was approved for a new powerchair

April 2, 2019: The initial chair recommended by the ADP agent would simply not meet my requirements.  The vendor who delivered the demonstrator model quickly assessed my situation and proposed another Quantum model.

May 19, 2019: The vendor I had selected delivered a Quantum Q6 model which I found much more to liking and suitable to my needs.  The vendor placed an order with the manufacturer to construct a Q6 to my specifications.

June 11, 2019: The invoice for my Quantum Q6 bears this date and has a listing of the components specifically requested, including seating.

August 22, 2019:  I took possession of the new Quantum Q6.

I found this Quantum model an improvement over my old freebie Quantum, particularly the suspension.  I find it climbs over obstacles much more smoothly.  The demonstrator came with similar curly-cue side-arms.  My model has the more common square frame side supports which Pride (Quantum) supplied with small side bags on each side.

I am keeping my freebie Quantum as I never want to be without motorized wheels again.  Those who have read this blog know I spent the summer of 2017 powerless as I waited another vendor to try twice to resolve my loss of power issues.

I changed vendors as I found the first vendor's office staff somewhat complacent regarding my urgency.  Vendors can only move as fast as the manufacturers offer cooperation.  I don't see why in this age of faxes, e-mails and overnight courier shipping, it takes two weeks to a month to obtain a wheelchair part.  This is in addition to the week's wait before a technician can diagnose the problem and another week for an appointment for the installation of the part.

Enough text.  Here are some photos of the Quantum Q6:

Front View: I requested a foot-rest which folds up underneath the chair.  I can stand and do so frequently during the day.  Also, because I have some use of my legs, I simply lift them up and drive to where I'm going around the house and my property.  The foot-rest would only be employed if I was to travel by a public disability service (taxi or bus).

 

Right Side View: The tubular arm supports form a square frame and you can see a small bag hanging from the middle strut of the arm-rest.  I find this useful for keys, pen; small personal items.

 

Rear View: The rear caster support bar is clean and compact.  Reflectors on the casters.  Motor disengagement toggles are at the rear as in all Quantum models I'm familiar with.  Cables from the controller unit to the motors are exposed and I worry that I may back into something and snag them.  (I'm capable of doing the impossible.)

 

Left Side: Identical to the right side with another small pocket on the sidebar.

 

A photo of the foot support lowered. It is nice, compact and has smooth surfaces so when I stand up and brace against it there is no sharp pressure against my legs.  One problem (arrow) is that the covers to the nuts securing the casters is simply pressure-fitted. My bed frame is at the precise height that it acts as a "bottle opener" and the cap flung off probably as easily as it was punched on.  The cap disappeared into the dark recess of my room, never to be seen again.  Sweeping under the bed with a mop did not recover the cap.  Nor was it thrown back into the nooks and crannies of the chair.  That cap seems to be gone forever.  One of those mysteries like where is Jimmy Hoffa, or Amelia Earhart.

 

One problem I had (with every chair that I owned) was that because I have the ability to stand, I brace against the chair to do so.  The seat pan of every chair is a metal plate about an eighth (or five-sixteenth?) thick.  Even though it is rounded over, the pressure of bracing against it produces cutting discomfort.  My solution was to obtain a thick-walled hose such as that used for washer drainage, easily obtained at a local hardware store such as Home Depot.  The hose is slit using a box cutter or other such item (careful!) and it is slid over the sharp edge.

Here the hose bumper can be seen in place (arrow), protecting the backs of my legs--particularly if in shorts--from the discomfort of bracing.

With warmer weather arriving (the battery won't freeze) I've placed the old Quantum in my garage and hope to use it exclusively outdoors.  I'll transfer from one chair to the other outside and in that way will keep the new one clean if I pull weeds, saw wood or paint.

I still have the Permobil at another site and am not sure what to do with it.  It is a useless "paper-weight" containing many new parts.  In that sense it is too new to scrap but I have no confidence in its continued operation.  Perhaps I can make a nice flower planter out of it.

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