Category Archives: Assistive Devices

Power Wheelchairs for PMA

Power Wheelchairs for PMA

Let me start out by stating that since PMA like its other variants of Motor Neuron Disease can have diverse symptoms, progressions and outcomes, choosing power wheelchairs for PMA sufferers can be quite challenging. It is, however, very important to choose the right one since its owner is likely, at some point, to be spending a great deal of time in one!

Types of Power Wheelchair

There is a dizzying array of types and sizes of power wheelchairs (PWC). There are also many different features and add-ons that can add a great deal of function and utility to your device and make you more mobile, active, and above all, comfortable. Although I will be approaching the subject from my own perspective as a PMA sufferer with mostly lower limb involvement, there will be much information relevant to pALS (person with ALS) in general. In a single post, we cannot hope to cover the entire gamut of power wheelchairs for PMA. We will however try to cover the most salient features and options most likely. Before choosing the optimum power wheelchair for your particular situation, you will need to consider all of the following

Indoor/Outdoor

It is unfortunate but there really is no ‘one size fits all’ solution when looking for the best PWC for your own situation. We will list the most obvious and relevant features and options. The first and perhaps most important factor in your selection should be deciding where you will spend most of your time.:

  • Indoor – If you will be spending a lot of time indoors, size and weight will be important considerations. Also types of flooring,  size of corridors and door frames need to be taken into account. If you have to make a lot of modifications to accommodate your wheelchair, it obviously adds to the cost.  
  • Outdoor – This covers a lot of ground (sic). Think about whether you will mostly stick to sidewalks and pavement and do not expect to have to navigate high curbs and uneven surfaces. If you will be ‘off-roading’ even a moderate amount, many of your choices will not be suited for this. Most power wheelchairs, for example, will not be able to climb obstacles higher than 3 inches and will perform poorly in rain, snow, on grass or gravel or climbing anything more than moderate inclines.

Drive Type – Battery type – Speed

These are three important considerations that are not often discussed with the Occupational Therapists or Mobility device suppliers but they are important factors that you should consider:

  • Drive Type – There are two main options here:
    • Rear-wheel drive where the power is sent to the rear wheels. Usually, the rear wheels are large and the front ones smaller. Since power is on the rear wheels, you can often mount higher curbs by backing up them. Although there may be anti-tip wheels at the rear, only four wheels are in constant contact with the ground.
    • Mid-wheel Drive usually means having small wheels or casters front and rear and larger drive wheels towards the centre. This usually means a much smaller turning circle and a smoother ride. This is offset by the inability to mount high curbs because the drive wheels are easily lifted off the ground by those front and rear.
    • Hybrid/Four-Wheel Drive – Although they are neither cheap nor wide-spread, it is possible to find this type of drive system where either all four wheels can be powered simultaneously or where the front wheels will be supplied power to assist in mounting higher curbs than possible with the other two types.
  • Battery Type Although there may be others, there  are usually two main types of batteries available for power assistive devices:
    • Lead Acid The most common and less expensive option for all but travel chairs. They can be either wet or dry (gel). Most manufacturers only use the latter type since they require no maintenance and cannot spill. Many airlines and common carriers will not transport the wet type.
    • Lithium-Ion These are both lighter and more compact but they do not generally last as long and are much more expensive. They are only typically used in travel chairs. Although generally approved for airline travel, the battery must usually be removed and carried with the passenger and is limited in the allowed capacity. Many power wheelchair suppliers offer an ‘airline-approved’ lithium battery as an option.
  • Speed If you intend to use your wheelchair mostly indoors, the maximum speed will not likely be a major concern. Outdoors is another matter entirely. The typical top speed of most power wheelchairs is 3.5 -4 mph (5 – 6.5 kph). Some, however, are rated for up to 10 mph (15kph) or more. This will only make a difference if you are planning to travel longer distances.  To travel 5 miles at 4 mph would take 1 hour 15 minutes. At 10 mph, it would only take 30 minutes, a significant improvement.

Wheels & Tyres

Do not underestimate the difference that the size and type of wheel can make to the overall wheelchair experience. Wheel size will make a huge difference in the ride comfort and climbing ability of your wheelchair. The bigger, the better!  As a general rule, the size of the front wheel will determine the size of curb or other obstacle that you can climb. The usual range of size for the drive wheels is between 8 and 14 inches. The forward and rear wheels are usually between 6 and 8 inches. As a general rule, you will be able to climb half the diameter of the front wheel.  There are 3 widely available types of tyre: Solid rubber or composite, foam-filled and pneumatic (air-filled). Solid rubber is the hardest and pneumatic the softest with foam-filled somewhere in between.

Size & Weight

Once again, these are qualities often overlooked by Occupational Therapists and equipment suppliers. And yet, they are critical to your use and enjoyment of your device. As mentioned above, the length and turning circle of your chair will determine how well you can navigate your home without colliding with walls, furniture cupboards, etc. If you have ramps for entry into your home or you wish to transport the chair, both the overall size and weight will be important factors.

Functions

There are simply too many to list in this article but the major functions that may be material to your present and future needs are:  Seat recline, seat tilt, leg elevation,  seat elevation, sit-to-stand. Of course, each additional feature adds to the cost but you should be aware that it is usually cheaper to have them included than to add them later. In addition, many insurances, health providers, etc. will not fund additions but may cover the initial cost if added when new. Remember that most will only cover a new chair every 5 years or so, so you must predict your future needs as well as your current ones.

Add-ons

Once again, these may not be covered by your funding source and can often be negotiated for a reduced price or even thrown in free at the time of purchase. They include, amongst others, cup holder, phone holder, cane holder, front, rear or side pockets, or baskets, travel covers, oxygen tank holders and much, much more. The one add-on that I consider indispensable is the swing-away controller which allow the chair much closer to tables and counters.

Price

It will not surprise you to learn that prices are all over the map. The wheelchair specified for me by the O.T. and mobility supplier had a list price of $38,000+ CAD. The one that I subsequently purchased was $4.600 CAD and had most of the features and functions that I believed that I needed. In the case of the former, the provincial health insurance and our private insurance agreed to cover approximately $18,000 leaving us $20,000 out of pocket. It definitely pays to shop around though. I picked up a brand new travel power-wheelchair for just $1,300 when the exact same model normally retails for around $3,000 

Where to Get help

All of this may seem, at first, to be completely overwhelming (not to mention) expensive if this is your first try at finding the right power wheelchairs for PMA. If the cost is a major issue, try the ALS loan closet. In addition, Kijiji and Craigslist have many available.  Just be aware that some can be adjusted to meet your needs and some cannot. It will not help to get it cheaper if it does not do the job. By all means, consult an Occupational Therapist but always be aware that they may not have much experience with or knowledge of ALS or your particular variant of it and may steer you in the wrong direction.

Air Compression Leg Massager with Heat

Air Compression Leg Massager with Heat

I only discovered these air compression leg massager units very recently. Poor blood circulation resulting in swelling and cold feet and legs has been one of the worse symptoms of PMA for me. In the past couple of years, I have tried just about everything from heated socks, heated insoles, hot water bottles, electric blanket, lambswool slippers, etc. Of all the things I have tried, this air compression therapy device has been, without a doubt the most successful.

Quinear Leg Massager with heat

What causes Swelling (edema) and Cold Feet?

Most of us learn about muscles in biology at school. However, most of us never learn how muscle activity helps to move blood around our bodies. Even my own neurologist was apparently unaware of the severity of these problems for many Motor Neuron Disease sufferers. In fact, he ordered a Doppler (Ultrasound) test of my legs to check for abnormalities other than PMA that might account for it. Lately, I have seen numerous posts from pALS and cALS regarding swelling and lack of temperature control.  On further research, I have learned that blood circulation is a major factor in controlling body temperature. Again, most of us are aware that the heart is the major organ that pumps blood. However, in the extremities, there is often not enough blood pressure to recirculate the blood. Normal muscle movement activity then serves to supplement the heart’s efforts. When this fails, blood pools in the feet and lower legs resulting in swelling, discoloration and lack of heat control.

How Does Air Compression Help?

Most of us have had some type of massage at some point in our lives. Indeed, it was prescribed for me by both my GP and my neurologist. However, getting to the RMT office (especially in winter), dressing, undressing, getting on and off the massage table all counterbalanced the positive effects of the treatments themselves. After 4 sessions, I gave up.

Just 20 minutes of sitting with my legs in the air compression leg massager is enough to leave me with benefits for the balance of the day.

air-compression-therapy-device

Where Can I find one?

Although I had never heard of these devices before, it turns out that they are widely available. They are available with differing sizes, functions and can come with or without the heat function. Prices in Canada range from $90 – $300. The ones I purchased were $159 CAD and have three massage cycles, three levels of compression and two levels of optional heat.

Quinear-Leg-MassagerAs you have probably surmised by now. I am a great fan of this product. I only wish that I had found it earlier. Of course, your own mileage may vary but my own problems of swelling or cold feet are now largely a thing of the past. 

Swimming with PMA

Swimming with PMA

Many things, including swimming with PMA, have to be done differently when one has Motor Neuron Disease. I consider myself extremely fortunate that we have the financial wherewithal to afford the equipment that makes otherwise herculean or impossible tasks doable for those of us with physical limitations. Last year, we had a pool lift installed at a cost of around $7,500. Because we had trouble finding workmen to do the actual install, it was not up and running until late in the season and I was still able to use the handrail to enter the pool. As a result, I only used the lift a couple of times and the weather and water were both warm.

The Pool Lift

If you have PMA, PLS, ALS, or any other MND and own a pool, or are thinking about getting one this might give you some ideas of the pros and cons. Quite apart from the expense, you have to consider how well you are able to get in and out of the lift. Since I still have good upper body strength and function, this is less on an issue for me than it might be for others. However, I still have to position my power wheelchair just right to make the transition to the lift chair.

We purchased the Aqua Creek Admiral model 

swimming with pma

It was supplied and installed by a local Mobility Specialist but we needed the concrete pool deck to be prepared by drilling holes, setting anchor bolts and leveling the base plate. This was the difficult part since it was a relatively small job and few local handymen were willing to tackle it. Luckily, the company who was doing some other landscape work (making the back yard more accessible for my wheelchair), agreed to do it. The unit is pretty heavy (160lbs+) and, in our case at least, has to be removed before winterising the pool, since the winter safety cover cannot be installed with it in place.

Taking the Plunge

This year, we were able to get the pool opened up relatively early and eagerly awaited the time when we could take a dip without freezing our (insert your own word here) off. Yesterday was that day. The sun was shining and the water temperature was at 21/70 degrees. I know that to many of you this might seem on the cool side but prior to PMA, I would dive in at 18/65 degrees, so I thought that this would not be a problem!

As you can see, I was in for a somewhat rude awakening!  In the past, I would have considered the temperature just fine, since I would simply dive in and the shock would last only a couple of seconds. This time was different, being slowly lowered with no control and not able to jump off the seat until it was completely submerged was like a version of the Chinese Water Torture. Once in the water and swimming, everything was fine. Even though I have almost no function in my legs, swimming is both cooling, relaxing and a chance to exercise my legs gently. In spite of the video above, I do highly recommend it.

You can find my solution to other daily challenges here!