Wheelchair Users – What Price Independence?

Wheelchairs are like shoes. One size does not fit all. A customised chair makes a lot of difference to the person using it. My first made-to-measure aluminium chair was a folding Japanese-made Max Pleasure Synergy that costs RM5,700 in 2007. I enjoyed a great deal of independence from it. The small footprint made it very maneuvreable. My posture improved tremendously; I was no longer slouching. For the first time in two decades, I actually looked good in a wheelchair.

Unfortunately, the crossbrace fractured after just three years of moderate use. The crossbrace is the X-shaped mechanism that allows the chair to be folded. I have also had the same issue with the crossbraces of two other steel wheelchairs that I used previously. Both were standard off-the-shelf wheelchairs. They were heavy, difficult to push and fitted me badly.

A custom-made wheelchair takes many aspects of the user’s body and needs into account. The width, depth and height of seat from floor all make a difference; so are the sizes of the rear wheels and front casters. One can choose either a folding or rigid chair. A folding chair takes up less space when folded and is easy to store in the car boot. It is also heavier because of the crossbrace. The rigid chair is lighter because it does not have a crossbrace. The rigid wheelchair has less flex of the frame thereby translating to more energy efficient propulsion.

The current wheelchair that I am using is the Tilite ZRA Series 2. This is a rigid wheelchair with its main frame constructed from aerospace-grade titanium tubes. Titanium has better strength-to-weight ratio compared to other materials used for making wheelchairs. It also does not rust and corrode. That makes it durable, an important factor for something that I am totally dependent on for my mobility.

This wheelchair is also twice as expensive. The costliest part is the titanium frame, followed by the rear wheels, shipping and then the cushion. Friends, non-disabled people and wheelchair users as well, asked me why I was willing to cough up so much for a few titanium tubes on wheels when I could have bought another aluminium chair for only half of what I paid or the Tilite ZRA.

In getting a wheelchair, especially for long-term users, the decision cannot be based solely on cost comparison alone. There are other factors to consider like durability and functionality of the wheelchair. The most important factor to consider, however, is the implication from pushing a heavy wheelchair ten or twenty years down the road. The repetitive actions of propelling the wheelchair has been proven to wear out the shoulders in the long run.

An injured shoulder will rob me of my mobility and independence. Should that happen, I may have to depend on someone to help me with my activites of daily living for a period of time pre and post-surgery. The question is do I scrimp on cheaper wheelchairs now and suffer the consequences in the later years or do I take preventive measures now to preserve whatever functions I still have for as long as possible?

For me, the answer is simple: An ounce of prevention is better than a pound of cure. The RM13,000 I paid for the Tilite ZRA Series 2 and cushion is a necessary expenditure albeit a steep one. It is justifiable nonetheless. I am already living with a host of spinal cord injury-related health issues, many I could not have prevented even if I had wanted to. My shoulders I can. This wheelchair is the gift to myself for sustaining a better quality of life in the long term. In that sense, it is worth every sen I paid for it.

Tilite ZRA Series 2 Backrest Mount Replacement Parts

The Tilite ZRA Series 2 ultralight weight rigid titanium wheelchair has performed better than I had anticipated except for the backrest mount that began to creak a few days I started using it. Wuan tightened all the screws that could be tightened but it continued to creak every time I shifted my weight or leaned back.

Tilite ZR and ZRA Series 2 backrest mount replacement parts
Tilite ZR and ZRA Series 2 backrest mount replacement parts.

The locking stud on the left kept coming loose and had to be tightened several times. The threadless pin for the folding mechanism also slid out a few times and had to be hammered back into place. There is significant play to the entire backrest. The back locking mechanism is difficult to engage and disengage.

Many, if not all, of Tilite ZRA Series 2 users are facing this issue. The hardware that came with the wheelchair is an updated version but the problem persisted. Tilite has since redesigned the entire mechanism and been sending them out to users requesting for a replacement.

I requested for a replacement on end-February through Scott Pellett, the owner of Bike-On, the retailer in the USA where I got the Tilite ZRA from. It was a simple no-question-asked process. All I needed to provide was the serial number of the wheelchair. It was delivered via UPS this afternoon.

Now, I need to wait for Wuan, my personal wheelchair mechanic, to swap the parts. One quirk about the wrenches for the bolts and nuts that Tilite uses. They are all in inches while the commonly available wrenches in Malaysia are in metric. A 7/16″ open end wrench is needed for this task.

There is a hardware shop near the Pudu wet market that carries wrenches in inches. This was where Wuan got the 3/8″ open end wrench needed to reposition the levers of the Uni-Lock wheel locks. I hope they have the 7/16″ as well.

Lezyne Pressure Drive M

At the Disability Equality Training (DET) workshop last year, two foreign participants had problems with the wheels of their wheelchairs. One had a puncture while the other was running on under-inflated tyres. We had a difficult time looking for a replacement for the punctured tube.

Wheelchair shops in the Klang Valley that I called up to enquire did not stock 24″ x 1″ inner tubes. Fortunately, the organiser found one and averted a crisis. The spare wheelchair that he was using was a very poor fit. His independence and mobility would have been severely restricted if he had to use that wheelchair for the entire two weeks at the training.

My Tilite ZRA Series 2 wheelchair also runs on 24″ x 1″ tyres and tubes. Bicycle shops do not usually carry these sizes. It would take at least two weeks for replacement parts to arrive from the USA. With the problems the two participants faced in mind, I ordered extra tyres, inner tubes and spokes when I ordered the wheelchair just to be sure I would not be caught without spares.

Although the Schwalbe Marathon Plus Evolution tyres are puncture resistant, I carry a spare inner tube together with a set of Allen Keys whenever I go out for those just-in-case moments. One of the other few things missing from this kit is a pump that is small enough to fit into my wheelchair pouch. I looked around in online bicycle stores and Ebay and found one that I liked.

Lezyne Pressure Drive
Lezyne Pressure Drive.

The Lezyne Pressure Drive M is a sleek looking hand pump that is not only tiny but can inflate up to 120 psi. That is just the pressure I need for the tyres. Before ReallyBites came back from the United Kingdom, I got her to buy one for me from Rotec Cycles, an Ebay shop based there. She passed the pump to me when we met up last Friday. I have not had the opportunity to put it through its paces yet but I like that it felt solid in my hand.