Monday, 31 August 2009

State of Affairs at Three Years Post Injury

So where have I gotten to three years post injury?

On some hazy day in April of 2006 I woke to discover my legs would not move. Major surgery weeks later after antibiotic therapy was initiated but seen not to be effective on it's own. Six Months over three different hospitals. Could not sit up at all - would flop over at the waist like a rag doll. Lifted from bed and chair with sling and hoist. No movement below lower chest, no pain (after initial surgical incisions) Catheterized. Left rehab hospital in about that state with only the slightest movement returning to my legs - which I decided not to share with hospital staff because of a disinterested if not negative attitude. Two doctors dryly stated that I would never walk again.

Returned home at the end of October of 2006 in about that state. Hospital bed in the living room, hoist, etc. Community health care sent me an in-home physiotherapist who assessed me and felt some flicker of movement stating "we can work with this". In January of 2007 I suddenly realized that I sat up with some abdominal control while reaching for something. As the inflammation continued to recede, the mobility slowly increased but the amount of neurgenic leg pain increased with it. The bad came along with the good. Post injury, through this period, I had massive spasms where one leg or the other would begin jerking uncontrollably, one or the other (never both at once, hmmmm?) and the would be violent and last sometimes for hours.
Started physiotherapy 4 times per week at my local community hospital (hospital number four). After a few months one gym session was replaced with pool therapy.
Got fed up with bowel treatments and catheter bags after the first year and got rid of them. Those functions have returned to near normal.

Continuing physiotherapy over the next few years, strengthening whatever muscles had returned under my command. During this time I was fitted for long braces (KAFO) which had a locking hinge at the knee. Put them on and wobbled in the parallel bars further strength and balance. Progressed to braces below the knee (AFO), with a limited hinge at the ankle. Each progression took about a year (a year from exercises on a mat to a sit-to-stand frame, another year to progress to walking with long braces, another year to walking with the short ankle braces, to now walking distances with braces and walker.)

Paralysis is only some 50% of the problem. The other major problem continues to be the intense and constant neurogenic leg pain (pins & needles/burning). The spinal nerves are permanently damaged and are continuously sending the signal that something is wrong and to stop it - only it can't be stopped.
Drugs have little or no effect on this particular type of pain.
Spasms have reduced to a few mild ones, usually late evening and not lasting for very long.

BoTox therapy could not be felt internally in any way but did improve my gait as the stride seemed to be longer and better controlled - that is, foot went right where I wished to place it rather than perhaps drift a bit or pull in to center. BoTox may have lost it's effectiveness about 3 weeks prior to my 4 month post-injection assessment and probable repeat injection.

In spite of the intense core exercises I still feel as if My middle is wrapped in a large Theraband (elastic band). Muscles are very tight and don't want to give at all. Doesn't hinder any motion or breathing but feels uncomfortable.

Muscular control has returned to much of my legs but the dorsiflection (lifting my foot off of the ground with heel in contact with the floor - or cannot tap my foot on the floor as I can push down but not pull up)

Post injury the muscles or back were altered such that I developed an intense sciatic nerve pain which manifested itself as an intense pain in the left seat/butt/hip joint area, making it hard to sit for any length of time. Turning on my side or back doesn't help much as even each pulse of circulating blood causes the spot to throb. The pain often manifests itself in the left heel at the same time. The most recent core exercises seem to have helped with this pain as it feels less intense, and occurs less frequently. Some days good, some not so much but can't correlate the change with 'post-exercise' fatigue, length of time sitting, weather, barometric pressure etc.

So in summery, I went from a catheterized rag-doll stuck in one position to now where I can turn to sleep in any position on my bed, dress myself and leave home for appointments without assistance. While my neurogenic leg pain remains intense and very distracting, other symptoms have improved immensly and I can walk with a fairly normal gait with the assistance of a walker. Distances are limited but are improving week to week. Transfering to a car or van is no problem as I can stand and swivel into the seat and lift my own legs into the car under their own muscle strength and control (no transfer board). Lyrica medication does not seem help the nerve pain much, if at all but one of the side effects is weight gain and I believe that side effect may be manifesting itself on me, which is problematic as I'm a big guy anyways.

So, I'm walking ever increacing distances but nerve pain remains the most distracting symptom.

Friday, 28 August 2009

End Of OHIP Funded Physiotherapy

Today was the final day of my 16 weeks of OHIP (Ontario Hospital Insurance Program) funded physiotherapy.

Took the walker around the hospital hallways for an extended walk. Seemed a bit more sluggish since one week ago. Stride not as long or as smooth. May be that the nerves have regenerated and another course of BoTox is warranted. Due to be assessed in early September.

Now its up to me to keep up the exercises and walking schedule and/or find a private physiotherapist in the community who might take over and suggest other exercises, procedures, therapies, or whatever, that might help advance my recovery.

Starting back to work in September - will certainly cut down on available time.

***As an afterthought, I finished my physio routine as below
  • arrive and stretch out at parallel bars to loosen muscles, tendons and joints which seem to contract overnight much more than pre-injury. Walk up and down a number of times.
  • walk with the walker in a longer hallway outside of physio. About 60 meters up & down each rep. Do two to three reps usually, as time allows, but now near the end of my sessions the walk was taken right out of the department taking various twists and turns while on different floor surfaces (terrazzo, carpet, tile etc.)
  • return to physio to do various bench exercises currently focusing on the body core and it's contribution to stability and walking. On all fours raising one arm straight out then alternating with the other. On all fours again but now kicking one leg straight out the back, then alternating with the other. On my back pressing a rubber ball with my right hand into my left thigh, then reversing sides, left hand into right thigh - strengthens obliques. With large diameter ball (~1.5') under my heels, I pull my heels in and roll the ball towards me then out again, repeating. Then with the same ball under the back side of my knees, I bridge, lifting my back up off the mat with just my shoulders touching. A final exercise is seated, then lifting a weighted ball (~3/4' dia) from my lower right side slowly in an arc up to my upper left side, while twisting but keeping my back straight. Then reverse.
All exercises are done in 3 sets of 10 repetitions.

A final exercise is done on the NKO (?) bench which is simply a seated bench where each leg can lift weights up in a gentle kicking motion (quads) or adjusted to fight the weights when pulling back (hamstrings) - again 3 reps of 10 though I continue on until my therapist finds time to take me off. If any time remains (about 1 hour & 30 minutes at this point), I return to the parallel bars.

So those are the excercises I perfomed on my last weeks of therapy.

Thursday, 27 August 2009

This & That-More Bitching!

Pain - still trying to decide if the Lyrica has any appreciable effect on my nerve pain at the dose I'm taking. Thought there may have been a slight reduction at first but most of the time it's still intense enough to divert my attention to the pain every few minutes. Hard to put it out of my mind. No noticeable side effects at this dose, except perhaps occasionally blurred vision. May just be fatigue.

Insurance - my insurance company responded to my submission of the $1G+ bill for the joystick with their usual confusing statement.

  • "The estimate for this expense is approved. Please remember that the actual amount payable is subject to plan coverage limits and deductible that are applicable. To be eligible for payment, the expense must be incurred while covered under the plan. We will assess the claim when we receive a receipt showing the expense is paid in full."
Okay, what does that mean. The expense is approved, but how much of it will be reimbursed is unknown. * Again, the expense has to be paid in full before they will consider reimbursing whatever amount they decide to reimburse you with. Hardly leaves me reassured or confident when dealing with such a significant amount. Again, as with my manual chair, what disabled person has such money floating around to pay in full prior to the insurance company's reimbursment? One of the reasons I pay continuous premiums to the company is so that major out of pocket expenses are covered when needed and so it doesn't drain my finances at that time.
If I have fire insurance for my house and it burns down, do I have to rebuild it with my own money and then submit it to the insurance company to see what portion they'll reimburse after my rebuilt house is paid in full??? Of course it is all how the policy is written but it is clearly designed to discourage eligible people in need from collecting on the policy. The CEOs need their bonuses and the greedy disabled are siphoning off funds!

*I've previously received a statement from this insurance company which read something like 'the item is covered 100% for the usual and customary coverage in your area'
-translating this bafflegab, it says something like 'of the charge you submitted, we may cover only about 10% of the expense but we cover 100% of that 10%.....Huh????

So, the joystick is covered but how much is unknown until I submit an invoice saying it is "Paid In Full". So, after inquiries, I have no idea of how much I am on the hook for. Sure doesn't give me the "piece of mind" the insurance companies try to sell you with all their excessive TV ads!

Return to Work - Finally, almost exactly one year to the day I started looking into returning to work, I have a return date set for September 8th. This year long process required;
  • mounds of paperwork filled out - filed or to retract other forms filled previously
  • doctor's assessment and approval ($120.00)
  • 2 hour in home interview which covered topics such as how many rooms I had in my home and what did I have for pets (what the *&$%# does this have to do with my returning to a job I still held?)
  • Bean counters and number crunchers at the Insurance Firm ruled that since I want to return to work, they no longer considered me disabled and came up with the date of April 3rd for me to get back to work for on that date my disability pay would cease. It did and I've been coasting on savings and family charity ever since.
  • had an 'on-site' ergonomic assessment including photographs and measurements. Although my problem is that I can't yet walk independantly, the morons recommend that I need an ergonomic computer keyboard. Don't use one at home, my hands/arms are fine, why?
  • Improper informatiion from my regulating college meant I had to take a refresher course to return to a profession I've been in for 30 years. Crammed a $350 36 week course into just under 5 weeks.
  • Dealt with some unhelpful people at my regulating college to regain my 'practicing status'
  • Interview with Human Resources, Occupational Health (2) & Department Director regarding various matters including safety measures. (how to get me out if the department burns down)
All that has taken a full year. Now I just have to get reaquainted with the specific procedures that may have changed since I was there three years ago.

Thursday, 13 August 2009

If It's Medical....MARK IT UP!!!!$$$$$$$

$$$$$$$~If It's Medical....
MARK IT UP!!!!~$$$$$$$

My electric wheelchair's charge is running low so as is my routine, I plug it in at night so it will get a full charge in some 8 to 10 hours. However, next morning the indicator shows only a partial charge. Investigating, I plug in the chair once more and notice the fault light come on the remote charging unit and it promptly shuts down. I call the company (different supplier than my manual chair) and describe my problem to a pleasant customer service lady in the service department. Soon thereafter I get a return call from the actual service technician and I describe the problem to him once again, in greater detail. Told me he would be right over.....and he was.

I had dealt with this service person before and have found this young fellow very pleasant, polite, helpful and knowledgeable. A real treat to find someone who bends over backwards to be helpful, is polite and exudes competence!

That said, I was shocked to find out that the problem lies not with the charging unit but in the small, almost palm sized controller with the joystick attached. The charging plug is located on this unit and the circuitry regulates the charging of the batteries. The shock (no pun intended) was not that this electrical controller was at fault but rather that the replacement price for a new unit is $1120.00. Now, for over a grand, I can buy a completely loaded laptop computer, a audiophile stereo component or perhaps some lackey to physically carry me around for a couple of weeks.

The joystick control & charging unit that is priced at $1120.00

Anyways, the usual scenario follows - a call is placed to my private health care insurance carrier and after the usual 'phone tag' , the customer service person doesn't know much. On hold while consulting supervisors. Returns to phone but still unresolved. Instructed to send in an extended health claims form, a copy of the original doctor's prescription for the chair and a copy of the repair invoice. That done, I wait, knowing that it has taken about 3 weeks for them to reply in the past. I'm not getting my hopes up, also from past experience.

My beef is with the industry and the inflated prices because this is technically a 'medical' item and that every supplier has $$$$ in their eyes thinking that all will be covered by some insurance (and they want their take) or that you've had some huge legal settlement (and they want their take),

The repair technician has bent over backwards to help and may have a few tricks up his sleeve.
In the meantime, I'll be waiting patiently for the insurance companies ruling.

More on this as it unfolds....