Manual Wheelchair Frustrations

My #%$@* Frustrations

In Dealing With A Health Care Company

While in hospital an electric wheelchair was chosen for me by the facility. The chair served me well and continues to do so but with my increasing mobility I had a desire to get out into society on my own schedule and not have to rely on handicapped transit . Handicapped transit has also served me well but trips have to be booked 24 hours in advance and the small pickup time window must be strictly adhered to. As I am now able to stand, step and transfer, family and health care professionals suggested I look into getting a manual chair to complement the electric one. With the manual chair I could transfer to our private car and come and go as I please for outings which would be both physically and mentally rewarding.

As ADP (Assisted Devices Program) helped defray the full cost of my electric chair, I was not entitled to funding for the manual chair.
It is my understanding that a second chair (backup) is a luxury.
The total cost of this chair was my responsibility.

With the assistance of my Occupational Therapist, a suitable chair was chosen and an order was placed with a major health care franchise. The Occupational Therapist pre-warned me that each health care company offers its own difficulties when dealing with them.
I was about to find out how true this was.


On August 29th of 2007 an order was placed with the company and I was informed the delivery time would be about 2 weeks. The wheelchair would be “on trial" for me to determine if the arrangement of components suited my needs.

Below is the timetable that I ended up being subjected to.
See if you, the reader, feel this time frame and business practice is acceptable.

As a quick summary, the promised 2 weeks turned into 4 months at which time the wrong chair with the wrong seat by the wrong manufacturer was delivered. It took almost another 7 months to get the proper seating requested from day one, and to get the proper backrest. Within days, I received a phone call from the company suggesting they could send a driver around to pick up my cheque (payment in full). Now that’s $6300 for two bicycle tires, a seat, some metal tubes and plastic footrests. Wow! I really didn’t expect that price. Each item must be individually inspected and blessed by the Minister of Health.

August 29th, 2007
-Wheelchair Ordered
-Requested Quickie 2 (Order says EZ Ride)
-2 weeks delivery time stated (later changed to November 5th due to “special order” size/weight issues.
-requested simple cloth/cushion back (cheap) as not primary chair
-car transport and backup only. Discouraged - talked into rigid back
-J2 Deep Seat Cushion Ordered.

January 25th, 2008
-Wheelchair delivered. (Wrong Wheelchair delivered - Maple Leaf Brand)
-Correct chair Quickie 2 however is on the delivery form.
-Not a Quickie 2 Wheelchair but rather a Maple Leaf Brand!!
-Wrong Seat Cushion delivered. (correct make on invoice)

February 19th, 2008
-Correct Wheelchair delivered (Quickie 2)
-Wrong seat cushion once again delivered (correct make on invoice)
-No instruction/parts/user manual comes with chair.

April 9th, 2008
-New seat cushion delivered
-second delivery of wrong make and model of seat cushion. (correct make on invoice).
-Rigid back not comfortable - requested J2 Plus cushion on advice from OT.
-one wheelchair tire not holding pressure . Technician delivering back has no idea what correct pressure should be.

April 11th, 2008
-Seat cushion delivered - third delivery of wrong make and model of seat cushion. (correct make on invoice)
-Change back support to J2 Plus
-Plastic stiffener added to prevent cushion from “folding or drooping’ when seated.
-Wheelchair tire still won’t hold pressure.
-Technician takes chair with him to add back support brackets. Brings back chair with leaky tire inflated but unsure of pressure.

April 14th, 2008
-Correct seat cushion finally delivered on 4th attempt.

June 25th, 2008
-Matrix Elite Back delivered
-Tire continues to leak pressure

August 29th, 2008
Bill-invoice arrives for chair (Dated August 2nd)

September 4th, 2008
Supplier's Accounts Department calls asking if they can send a driver over to pick up the full payment. (like I have $6300 at home or have managed to submit, have approved and been reimbursed that amount from my insurance provider.)

One Year almost to the day to receive my basic manual wheelchair after initially being informed that it would take 2 weeks to assemble!!! Is this competence??

Now in this day and age of e-mails, faxes, phones, couriers and overnight shipping, why does it take months to get any particular part? Do they have to write a letter, sent by boat to China to have some child labourer hammer out a wheel when any particular order is submitted?

Read about my insurance woes in the next post.

Frustrations

Frustrations!!!

With reduced physiotherapy hours due to summer vacations a pregnancy leaves you'd think there would less problems encountered.

Walking with the leg braces last week I managed 6 repetitions of the hospital hallway on Tuesday. The longest length I've covered to date at one time. There were no ill effects from the walk.
Wednesday I walked 3 lengths and notice after two that something is not quite right. Arrive home to find both feet bloody with massive blisters on both arches. What's the difference???
With 5 days rest the right foot is still weeps fluid. No walking this week.

Dealing With Bureaucracy

Dealing With Bureaucracy

(Government Woes, Amongst Others)

When I first arrived back home from the hospital, my head was still reeling from coming to terms with this life altering injury. I arrived home to a mass of paperwork which had been demanded to be filled out and returned. Hardly able to comprehend what was before me, I dutifully filled out the forms & applications and sent them off. Now they were coming back to haunt me.

My intention was always to recover best I could and return to work. As such I had no intention of collecting my meagre pension at this time if I could avoid it. Nevertheless, I sent in the requested forms to my Private Pension Plan and to the Government of Canada Pension Plan with a cover letter explaining my intentions.

No I find out that my Private Insurance Carrier who pays my Long Term Disability (LTD) had at some time previous, reduced my LTD with the assumption that I am collecting monies from my pension plans. Why do they automatically assume that?? To avoid paying out I imagine.

So, to recover the amount of LTD they are withholding, I would have to contact each of these pension plans and obtain letters from them stating that I am not, nor have I ever (post injury) received any money from them.

Now I send off letters to each requesting from them letters confirming I have not received pay-outs.

My Private Pension Plan:

• My Private Pension Plan sends me back a form letter acknowledging I have applied and stating that I am currently receiving free accrual of pension monies. No mention that I am not collecting income from them.
  
• I write back again explaining in detail what I need from their office and once again get the same form letter.
• A phone call clarifies the situation and I finally do get a letter stating that I am not collecting pension money from my private plan.

The Government Pension Office:

• First letter goes unanswered
• Second letter goes unanswered (is the phone the only acceptable form of communication these days? - they do supply a mailing address)
  
• phone their offices and play the dreaded "your call is very important to us" phone tag game. Get disconnected and start again. Finally get through to a 'slow talker'. I ask him if he would send me such a letter? No! I ask him if his records show that I am or have collected money from the Canada Pension Plan. He answers "No". Then can he send me a letter stating that fact? He answers "No". "Why", I ask. "Because BY LAW we are not allowed to do that." "By law you are not allowed to write a letter to the fact that I am not collecting Pension Money?" from the government "That's right" -MORON!
  

My government at work on my behalf. Do they take courses on how to be difficult??
In the end he referred my request to a supervisor who did send a letter stating that my application is being processed. I hoped that "Being Processed" would be taken as not yet completed therefore not receiving benefits. In the end my Private Insurance Carrier accepted these letters and reinstated my full LTD benefits and sent me a cheque for the amount withheld. What a run around!!

The government stated on their forms that it could take up to 8 weeks to get a ruling on eligibility on receiving the Canada Pension. I finally got a phone call 4 months after applying and discussed with the representative my situation. I formally declined the pension as my intent was to return to work. My file would remain open for three months after which it would be closed and I'd have to re-apply.

Incompetence and paper pushing bureaucracy must have become an art form - or perhaps it's me who's a moron!

In addition:
My doctor charges $120 for filling out each of the forms - 2 Pension Plans and one Return to Work form. He gives me receipts to submit to my insurance company so that he can be reimbursed. I send them off to my private carrier and they only honour the 'return to work' form as it was at their request. Not sure where to send the others. Nobody acknowledges that they cover such an expense. So I guess the remaining two are out of my pocket. $240 to fill out applications for services I never wanted. Luckily my doctor was generous and forgave the other two.

Progress?... Really?

Progress??....Really???

Everyone has been telling me that I'm making progress. Physo patients who I don't know have even stopped to chat and told me how they've seen me improve. Then why don't I feel it???
Things will never be the same but I don't see any 'light at the end of the tunnel' where I feel that some degree of normalcy and joy of living returns. Eighteen months ago I was catheterized and hauled in and out of my chair with a hoist and now I move about from bed to chair to washroom under my own power.

So why was I more optimistic about the future when I first started the journey to recovery than now?

Constant pain varying from moderate to intense is continuous - relief comes only when passing out asleep.

1. Nerve Pain continues - from just below the knees to the toes. A pain which is a cross between intense burning or an intense tingling (needles & pins). No relief from any medication (Nortriptyline & Gabapentin). So intense at time than it is difficult to concentrate on any task as my mind is constantly being drawn back to the pain.
2. Sciatic Nerve Pain - Muscle imbalance has left one side of my abdominal/pelvic/back muscles weaker than the other side causing one side (hip) to be pulled out of alignment resulting in intense sciatic nerve pain. Doctor could offer nothing for relief & a year of physiotherapy has not helped this condition.
   

Have to wonder how long before I'm driven mad by the pain???

Spasms: an involuntary rhythmic contraction and release of the muscles, particularly the legs but extends into the back. Spasms have lessened in severity & duration over time but still can start up on either leg and be extremely annoying. Muscle contraction can be mild to extremely violent. A condition I shall have to live with.

Mobility: Continue to improve. It seems to me that 50% of my mobility problem was a direct cause of the spinal cord abscess and the other 50% was caused by muscle/ligament etc. deterioration from a half year+ lying in bed. Even now, some two years later, the amount of walking I can do is for the most part dictated by the time I spend in the physiotherapy department. After warm up and putting the braces on, there is only about a half hour of actual walking time available. A half hour once or twice a week is insufficient for recovery!!!

In the last few months walking has become more fluid and I'm able to stand more upright although the tight muscles/ligaments in the lower back refuse to loosen up and can cause a rather intense dull pain after standing erect for some time. The muscle weakness that is causing my sciatic nerve hip pain also shows up as I sway and collapse more to my left side with each step I take. I am starting to take the large and bulky leg braces home with me to add some additional time walking, however, neither our home's interior nor backyard etc. offer much room for a proper effort.

I have had one AFO (Ankle Foot Orthotic) made which I'm starting to use as my knee gets stronger and no longer buckles or hyper-extends as I put weight on it unsupported. It's my hope that in the somewhat near future I can get an AFO for the other leg and that I'll be able to replace my bulky KAFO (Knee Ankle Foot Orthotic) with the AFOs and have a more normal walking gait.

I am riddled with frustrations and overwhelmed with anxiety. Have to get back to work in order to continue my extended health care benefits including the drug plan and physiotherapy, yet the constant pain and discomfort make it difficult to concentrate.

Walking the Hospital hallway with KAFO (Knee Ankle Foot Orthotic) Braces and Walker
(3-5 repetitions of hallway length 2-3 times per week)

* * *

Citizens Too Self Important To Care

While some drivers may honestly not see handicapped zones and inadvertently park in one, from my observations, most are too rushed, self important people who just don't care. Sad!