Sunday, 26 June 2016

Expoding Airbag vs "Atomic" Paralytic Spasm

Exploding Airbag vs "Atomic" Paralytic Spasm:  Which is Faster?
(I think my spasm would win the race...)

A spasm so explosive, they occur with no warning as the affected limb reaches its maximum contraction and then attempts to painfully contract further.  A contraction so sudden, so violent and so extreme that your own body attempts to tear the limb from the joint.  If my foot was caught or restricted. by some object, I fear that bones may break. If not held down, my knee attempts to hit me in the nose!

I feel my "Atomic" spasms are so violently explosives that they explode faster than an automotive airbag on collision!

They can happen at anytime, however, they are all but guaranteed to occur most nights. On "better" nights (if anything about this affliction could be considered "better") they run their course, whether for an hour, or more likely for hours, then subside to let me sleep.

The last few nights were particularly bad.  Friday night I fell asleep around 11:30 pm only to be awakened at 2:00 am with spasms that tried to launch me from bed.  Fell back asleep sometime around 6:00 am and then tried to face the day at 8:00 am.  Four and a half hours total sleep.

Next night, Saturday, I try to go to bed at 11:00 pm with spasms already in full explosive glory.  Painful, explosive, rhythmic, contractions, one followed by another, over and over until after 3:00 am.  At least that is when I last checked the clock.  Up at 9:00 am so I finally got a solid six hours total of sleep.

My overall impression is that my body's increasing stiffness, tightens the muscles more on my left side which pulls on my hip which in turn tugs on the sciatic nerve (resulting in sciatic nerve pain in the hip and foot) and this tightness irritates the sciatic nerve triggering the spasms.  Pressure, stretching, massaging, drugs (Baclofen, muscle relaxants, analgesics) seem to have little if any effect on relieving  the spasms.

I am taking a total of 30 mg of the antispasmodic drug Baclofen, 3 times daily.  While I haven't independently verified this, my understanding is that this is about the maximum oral dose before unwanted side effects may start showing up.

 10 mg of Baclofen, 3 times daily = 90 mg/day

I wonder if my body has somehow become resistant to the action of Baclofen as I cannot imagine spasms being even worse if not on this drug.  In fact it has never had much of an affect on what I consider to be a spasm; the unintentional, rhythmic contraction of the affected limb.

Once, when I tried to slowly ween myself off of Baclofen, I found that the jerking spasms remained about the same in frequency and intensity.  What did increase is is an overall stiffness.  My body felt much more rigid and my legs wanted to "scissor" or cross.

When I tried Botox to loosen my Achilles' tendons, the administering doctor rattled off an alternative definition of 'spasticity'.  So, I wonder if the medical and 'common' definition of spasms are one and the same?

I have felt much stiffer in recent months and wonder if oral Baclofen no longer has the expected affect on my spasticity?  What would be the answer?  Increase the dosage?

I understand there is the 'Baclofen Pump' is a surgical option where a reservoir and pump is implanted to deliver liquid Baclofen via a tube directly to the spinal column.  I find this a rather distasteful option -I have to investigate this further.  Is this invasive procedure really the only remaining option?

I have no idea what torment tonight will bring.

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Friday, 24 June 2016

Permobil M300 Still Broken.....Kind Of...

No Confidence in this Piece of Junk! 
Well, I got my Permobil M300 back today, exactly 2 full weeks after it was sent for repairs.  If you recall from my previous post, my Permobil once gain failed to back up and only turned in circles.

Last time it was the power control unit and so I suspected it was the same problem in a defective new unit.  However, last time the problem was displayed on my joystick hand control indicator as a sequence of flashing lights.  No coded message this time around.

Repair person came to my home and examined the chair to confirm the problem, then measured the electrical output from the recently replaced power control/distribution unit.  It seemed the controller was not the problem, rather one of the motor's internal brakes seemed to stick or not release properly.  Off to the shop it went.

Permobil M300 Clunker is still broken

So, after a week I call the shop for an update.  I'm told they will have a Permobil representative come down (?) or consult with them (this was unclear) on the following Monday.

Monday came yet I received no update;  I have patience so I wait.  Wednesday I call again and leave message on voicemail - nothing, Thursday I call again and leave message.  Employee calls to inform me that the Service Coordinator has had a personal issue to deal with and will call Friday.  Motion Specialties has always treated me well as had the Service Coordinator so I understand.  They will call on Friday.

Today, Friday arrives and my favourite service tech shows up at my door.  He has delivered my chair.

Good news and bad.

Bad News First:  The problem was evident at the shop but somehow corrected itself (sticky brake released?) and they were unable to reproduce the problem after trying various test runs.

Permobil in U.S.  were indifferent, unhelpful!

Service technician tells me that they contacted Permobil Service Specialists in their U.S. Tennessee plant and they were anything but helpful.  The needed the coded sequence of lights to diagnose the problem, however, as I previously mentioned, there was no coded sequence of lights.  If there was, the problem would be evident to our own service technicians without having to place an international call.  My service technicians impression was that Permobil U.S. also did not care about problems which occur after the sale is made.

So I now have my Permobil M300 powerchair back however some hidden problem remains with no way of telling when it may again repair.  That leaves me with little confidence in using this chair.

If it should happen again, I suppose the motor would have to be exchanged for a new one, assuming it happens while it is still under warranty.

Good News:  If there is any good news associated with my disastrous Permobil M300, it is that there is no charge at this time.  Stay tuned...

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Friday, 17 June 2016

Permobil M300 In The Shop Yet Again...

For the fourth time this year my Permobil M300 is again in the repair shop, inoperable!..

My Permobil M300 "clunker" is in the shop for repairs, for the fourth time in five and one half  months.

Just before New Years of 2016, my Permobil's right motor died and had to be replaced.  It was finally replaced in January at the cost of $1137.99 Cnd.

Two weeks after my right motor was replaced, my Permobil's left motor died and had to be replaced at the cost of another $1137.99 Cnd.

In late March the Electronic Power Unit which controls the motors failed and had to be replaced at a cost of $650.00 Cnd.

(The above are only the most recent problems with my Permobil M300!!)

On each occasion the chair had to be taken to the shop for diagnosis and repair leaving me dependent on my manual wheelchair.  On each occasion the chair remained in the shop between one to two weeks waiting for parts to be shipped from Permobil's U.S. regional supplier in Tennessee.  When shipping the replacement Power Control Unit, the customs declaration  papers were not filled out properly by Permobil U.S. and the part was returned to the company further delaying my repair.  It appears that Permobil has only one small office in Aurora Ontario which attempts to serve the entire country.  From my experience, it appears as if they are solely a sales office and stock no replacement parts.

So now, in the first week of June, 2016, my Permobil powerchair once again lost power on one side, allowing the chair to struggle while only turning circles.  I pull up to my desk and work for a while, then when I go to back up, I don't go straight, but turn.   Again, one motor is working while the other struggles.

The repair person comes to my home and disassembles the chair.  Is it the new motor that is bad?  Does the electronic brake not release?  Is the new Electronic Power Control Unit that is bad?  And the repair person notices an additional power control unit which is generally only added when the chair has a secondary motor such as a tilting seat.  This chair has never had one, leaving him confused.  Of to the shop it goes.

Now, after 1 full week has passed I call my repair shop and am informed that a Permobil representative will be coming down to have a look at my Permobil M300 and that they hope to have more information for me on Monday, June 20th.

So, yet another sunny summer weekend about to start which I will spend indoors as my patio doors to my backyard deck are barely wide enough for my power chair to squeeze through.  My manual chair has canted (angled) wheels making the chair too wide to get through this newly renovated exit.

In summary, it appears as if my Wheelchair Repair Shop is baffled by the cause of my latest breakdown.  I continue to have utmost confidence in Motion Specialties as they have always responded to my problems quickly and professionally.  The same cannot be said about my Permobil M300 wheelchair or my experience with their salesperson.

I am hoping it is a problem with one of the recently replaced components as they should be under some sort of warranty after only months of use.  I do not need another expense!!  Everything has bee replaced on this Permobil M300 except for the Joystick, frame and 3 of 4 castor wheels.

If the malfunctioning part is under warranty, I suspect I still have to pay for the service call as it is not Motion Specialties fault that I own a piece of Permobil junk that fails monthly!

Since January, 5 1/2 months have passed.  In that time I have had to spend $3250.00 Cnd on repairing the Permobil M300 powerchair and of those 5 1/2 months, the Permobil has been in the repair shop for over 1 month waiting for parts to be shipped from the United States.

Since my retirement last fall, this chair has been used exclusively indoors between 3 rooms!  Hardly strenuous terrain!

My Permobil M300 Powerchair is more disabled than I am!!!

Stay tuned: Updates to follow.
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Wednesday, 8 June 2016

4:15 am: Bouncing in Bed

Not as exciting as one's mind may conjure from the title's description.

4:15 am and something is not right.  I feel a rocking motion but I'm not dreaming about sailing on the ocean.  Spasms!

Last night I had to wait for the creepy, buzzing, sparkling electrical feeling, above and beyond the constant burning sensation, in my bouncing, spasming right leg to subsided before I could fall asleep.

Now at 4:15 am I am awakened by my spasming left leg.  It is no use.  I can't get back to sleep; put the coffee on.

Right leg becomes "creepy" where it feels as if it inflates and a swarm of bees with extended stingers bounce around the hollow interior of my calf.  The sensation may also feel like the leg is filled with hot bubbling soda water with bubbles bursting as the touch the interior surface of the skin.  Or perhaps those Christmas sparklers which erupt in sparks when lit, each burning spark hitting the inside of my calf.  Then there are the rhythmic contractions; the pumping spasms - contract and relax, contract and relax, contract and relax - for up to six hours at a time.  Spasm may originate in the thigh but the calf is where the torment ultimately presents itself.

Left leg differs from right as the injury is not symmetrical. It seems as if the back gets tight and contracts tugging (stretching) on, or perhaps compressing the sciatic nerve.  These spasms can be of the simple variety as in contracting and relaxing or they can now be of the "atomic" variety where the leg contracts quickly and violently, trying to go past the range of motion that the joint was designed to offer.  These spasms may be so explosive and violent that they rival the speed at which an automobile air-bag would deploy as they try to disjoint your limb from its socket!  They can lift you up and even throw you from bed.

An interesting observation is that left and right never occur simultaneously (ie only one side spasms at a time).  There may be a momentary crossover when they change sides, but they really only happen on one side at a time.  Some sort of neurological pathway property??

Things aren't suppose to change so late post injury.  It was only last year, the ninth year post injury, that spasms woke me up.  They would run their course in the late evening and be done with until the following night.  Now they often wake me, extending their torment until dawn.

So too with the "atomic" spasms -the ones that try to disjoint you.  They started only in the ninth year (March) and have continued since.  Why so late when nothing else in my routine has changed?

So, running on about 4+ hours of sleep today.  Spasms can occur anytime, but they come with a vengeful force every nightfall.  I wonder what tonight will bring?

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Thursday, 2 June 2016

If My Foot is Itchy.....I Just Scratch My Butt for Relief!!

...Absolutely true!..

My spinal cord injury was not due to some physical trauma such a crushing or shearing motion.  Mine was damaged by infection: by Staphycoccus aureus bacteria which somehow got into my body and evaded my immune system's attempt to destroy them.  Once they took up residence on my spinal cord, they began living on the interstitial nutrients and they "crapped" out a variety of enzymes whose purpose is to further break down their surroundings for further nutrients (food) and to destroy or evade the body's immune response which tries to destroy the bacteria.

These enzymes have left my spinal cord physically intact for the most part, however the enzymes have fused some of the cord transmitting fibers or elements together resulting in electrical shorts or 'cross-talk'..

To simplify, if the spinal cord consists of transmitting fibers or elements, say lettered A to Z, which conduct the brain's commands to the lower body and relay sensory (and other) signals back up to the brain, some of mine have short-circuited.  Where A should continue along as A, B as B, C as C and so forth to Z, mine have been stripped of the electrically insulating myelin sheath and have fused back together in some other order. 'A' may now connect to C and D connect to F, G & H, while E may no longer connect to anything.  In my case 'Butt' is connected to 'Foot'.

It would be something like pouring some solvent over a bundle of wires (or perhaps burning the covering).  The plastic insulation surrounding the transmitting wires would melt and drip away exposing the metal core.  Metal transmitting cores can now touch one or more adjacent metal cores thereby short-circuiting the spinal cord transmission system.  This is what has happened to me.

The intact bundle of electrical conductors at top represent an intact spinal cord; a bundle of transmitting fibers or elements.  An injury resulting in the total severing of a spinal cord might be represented by the end of the top bundle where the conductors are sheared off exposing the ends and any signal transmission ends.

My injury is more like the bundle at the bottom where a solvent or overheating has stripped the insulation from the conducting fibers resulting in short-circuits.  Conductors are for the most part intact but the transmitting surfaces touch each other and 'cross-talk' or short-circuiting jumbles and scatters the signals. Commands may not reach the proper site for activation and feedback sensations such as pressure, temperature and proprioception may send back erroneous or confused information.

And so it is true.  When I scratch my butt (left cheek), I feel it in the arch of my left foot.  In fact I feel the scratch in both places; in the arch of my foot and at the site on my butt where I am scratching.  The signals somehow merge and a new pathway now exists.  Weird!!

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