Wheelchairs, Walkers, Canes & More : Practical Advice On Choosing Mobility Aids
Guide:
This post will outline some of the various classes of mobility aids and provide guidance on how they can be most helpful as well as considerations to make when choosing a product. Where good models can be difficult to find or where I have personal experience, I may also provide unsponsored product names.
If you still feel uncomfortable using mobility aids please see my last post: "Mobility Aids For MECFS."
This post will not cover many details getting insurance to pay for your mobility aid as that is much better covered by this thorough and amazing resource from How To Get On:
https://howtogeton.wordpress.com/2017/03/08/how-to-document-medical-equipment/
But some good tips include:
-Shop for cheaper mobility aids on the used marketplace and save insurance requests for expensive items.
-Ask the seller of your mobility aid for assistance with insurance requests as they are often well-informed of the policies
-Consider renting before you buy, especially if you need an aid for a specific event only.
-For venues such as grocery stores, malls, theme parks, airports, zoos and similar free mobility aids may be available at request.
-Mobility aids are one of the easier medical fundraisers to organize. Because of their fixed cost and easy demonstration of benefit, people are often more willing to give. There are also charities that specialize in providing mobility aids not covered by insurance.
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Canes & Walkers
While canes do not provide much support, they are a cheap and easy mobility aid to use. They may also help signal your disability when out in public, which can help those who need to frequently sit down or young people who walk very slowly.
Walkers are ideal for providing seating and stability when out in public. They are a great safety mechanism to ensure you are able to stop when you need to, especially models that allow for you to sit and be pushed.
Considerations:
Seat Canes: Canes with seats attached are a great option for pwME over a standard cane. While slightly heavier, they allow you the ability to quickly sit down and rest at any point during a walk.
Walker Wheelchair Combos: There are a number of walkers that can double as wheelchairs for someone else to push you. I believe these are ideal for MECFS patients as it serve as an important backup in case you crash midtrip and are unable to get home otherwise.
Rollators: Nowadays, when most people say walkers, they mean rollator. Modern rollators do not require lifting to move, have larger wheels, and are foldable. Folding in multiple directions, ability to sit and be pushed, and adjustable height are key features to seek.
Forearm crutches: Like canes, additional weight in exchange for stability. May be recommended to those with connective tissue disorders.
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Mobility Scooters
Mobility scooters are ideal for allowing mild to moderate patients to have the freedom healthy people have to walk to nearby places or go on long outings in places like parks and zoos. However, it should be noted that this is a smaller use case than wheelchairs which can be used both outside and inside.
Considerations:
Ultra Lightweight: Low support seats, often uncomfortable but highly transportable.
Lightweight: A good balance of comfort and transportability. Look for models that disassemble.
Standard: Most easily obtainable. Offers a better variety of terrain than electric wheelchairs. Generally, with older batteries, thus heavier without a range increase.
Heavy duty: These bridge the line between mobility scooters and vehicles and travel on almost all surfaces. Very difficult to transport.
Battery: For all models, be aware that lead acid batteries are very finicky and can be very expensive to replace. If considering a used model, make sure to check the status of the batteries and the cost to replace them.
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Manual Wheelchairs
Wheelchairs are often underutilized by pwME due to the fact that ambulatory wheelchair use is stigmatized. If you are considering between wheelchairs and other mobility aids I urge you to make the decision based on your personal needs, not the opinions of others. I believe all moderate and severe pwME can benefit strongly from wheelchairs.
Considerations:
Folding: Essential if you want to be able to transport your chair easily in cars and taxis. I recommend also getting a chair with easily removable wheels for easier transport. Removable footrests are another very helpful feature.
Manual: Lightweight. Ideal for those who do not travel alone. It does not greatly reduce the amount of effort to travel distances unless you have someone to push. However, it may be effective at increasing distance travelable for those with orthostatic intolerance.
Fixed Frame: These chairs are considerably more expensive but may be more comfortable for long periods of use and are generally more lightweight. I would only recommend them to some less severe patients who self-propel and use their chair daily or who want to use electric assist.
Electric Assist: These add-on devices are lightweight additions to your manual wheelchair that convert it into an electric mobility scooter or wheelchair. They are ideal for pwME who want to have both a lightweight mobility scooter for outside the house and a manual wheelchair inside.
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5.) Electric Wheelchairs
Lightweight Folding: Ideal for patients who want something comparable to a manual chair but need electric assistance. Lithium-ion batteries makes these models transportable and with good range. May not offer enough support for more severe patients.
Tilt-in-space: These chairs are necessary for patients with severe POTs or who need to remain horizontal the majority of the time. They are great for waiting rooms as well. Make sure that the model you choose lies completely flat if necessary.
Brands: Tilt-in-space electric wheelchairs are quite expensive. The primary brands are Quickie and Perimobile. Because of the high cost and customization needs this is a good place to seek insurance coverage. Many dealers of both new and refurbished chairs can help you with insurance.
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6.) Stretcher / Hoists / Hospital Beds
For very severe ME patients, stretcher transport may be the only viable form of mobility. Owning your own stretcher can in this way be a mobility aid and allow patients to be moved to another room, briefly taken outside, or even bathed.
Stretchers / Gurneys: Smaller stretchers are ideal for transporting patients and may be the only viable option in smaller homes. Larger gurneys may work as both transport and daybeds and offer more comfort. Unless you have multiple people to assist, electric-assist or hydrolytic assist will be necessary for level adjustments.
Hoists: While hoists are often the preferred method of moving immobile patients, make sure to consider the orthostatic tolerance of patients with ME who may need specialized slings to remain as horizontal as possible. Many hoists can also be used in bathrooms. Hoists can also be used to assist a caregiver in turning and manipulating patients.
Slide Sheets: Are a low cost very effective way of moving bedbound patients. A slippery sheet is slid under the patient and can then be used to slide them from one level surface to another or to reposition the patient in bed. May be used in conjunction with transfer boards.
Hospital Bed: A hospital bed is highly recommended for severe and very severe patients. Key features include the ability to raise head and legs. Adjustable height is helpful for caregiver comfort. How To Get On's article also covers acquiring a hospital bed.
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Bathroom Aids
Commodes & Bedpans: These aids can save a great deal of energy by reducing travel distance and time out of bed. See my post "We Need To Talk About Sh*t" for detailed guidance. Tilt in space commodes are also often used as shower chairs!
Shower Trolleys: These stretchers are fully waterproof and can be used to roll a patient into the bathroom and bathe them. If you are considering buying a stretcher for use around the home, this may be a good option.
Bath Lifts: A great option for those with orthostatic intolerance or who use baths as a method of pain control.
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Product Recommendations
These selections are based on the ideal match between the product and the needs of pwME, not the best value for money. So, rather than these items specifically take this as recommended features, I would advise you to try to obtain in whatever product you can access.
Unpowered:
Ta-da Cane $179
Karma Ergo Lite Delux Self-Propel $1102 (Similar products start at $300)
Rollz-Motion $1850
Powered:
Gilani Power Rollator Aluminum Walking Frame with Corded Remote Control-The STELLAR
$2790
Gilani Engineering Lightweight Folding Electric Wheelchair Unique Adjustable Backrest - FALCON Wheelchair
$2890
RioMobility Firefly 2.5 $5,500 (similar products start at $1,000)
Perimobile Corpus M300
$5000-10,000 (price varies based on features; used models start at around $3500)
Unconventional / Lesser Known Mobility Aid Options
-Alinker
-Electric-Asssist Trycicyles
-Beach Wheelchairs
-IMove Transfer Commode and Over Toilet Wheelchair
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Choosing a Mobility Aid can be a daunting task and one that people with Myalgic Encephalomyelitis aka MECFS must put a lot of thought and effort into. This guide aims to provide a bit of the knowledge I have gleaned through my past 4 years using a variety of Mobility Aids.
The goal of mobility aids for pwME is to decrease Post Exertional Malaise PEM by lessening exertion required to get around. Remember that because crashes are how ME/CFS progresses, using a mobility aid to prevent crashes is as much a need as chemotherapy is to a cancer patient.
You are directly preventing the progression of your underlying disease pathology by remembering to Stop Rest Pace and preventing further mitochondrial dysfunction brought on by PEM.
For more guidance on building confidence in using mobility aids see my last post: Mobility Aids for MECFS; If you think you need one you do.
I also want to acknowledge the privilege involved in accessing mobility aids for pwME. Insurance cover for mobility aids can be extraordinarily difficult to obtain for those with fluctuating disability and invisible illness. Thus mobility aids that have some of the highest potential for improving quality of life of any intervention are often unavailable to those who most need them.
I highly encourage those with chronic illness who need a mobility aid to be open to asking for one through crowdfunding or similar. It is an incredibly reasonable request and one that society should respect. If you are privileged, please donate to these fundraisers and consider giving away any old equipment you do not use to those who need it (there are dedicated Facebook groups for this purpose!)
Everyone who needs a mobility aid deserves one. I hope this guide will help you choose the right aid for you and encourage you to fight to obtain the tools you need to protect your health.
