Solutions to improve everyday mobility and enable increased activity
For many MDA families living with neuromuscular disease, there are few challenges more persistent and more taxing on a daily basis than those related to basic mobility. While each person’s level of physical activity is relative to his or her specific diagnosis — as well as the corresponding exercise parameters established ahead of time by his or her care team — mobility issues affect the entire MDA community in some way or another.
|Etac Patient Transfer Turner|
“What can often make this issue even more challenging,” adds Cleveland-based physical therapist and assistive technology practitioner Cindy Dougher, “is that when you’re looking at the different [adapted-activity] products for help with any form of mobility, the decisions people make often come down to how expensive so many things are.”
Dougher, who works closely with MDA families through the Northeast Ohio MDA Office as well as the MDA Clinic at MetroHealth Medical Center, admits that, in addition to cost concerns, the process for obtaining prescriptions and insurance coverage or reimbursement for some large items, like power wheelchairs, sometimes can be pretty complicated. So she advises anyone with questions about such bigger purchases to contact their local MDA clinic team and work with experts there to better understand the available options based on their specific needs and situation.
But since combating the mobility challenges associated with neuromuscular disease often requires more than one single solution, Dougher also encourages her MDA clients to find and obtain on their own other readily available products to aid adapted activity.
“I think in general one of the biggest problems faced by individuals living with a form of neuromuscular disease, for instance, is that they often have tremendous difficulty just trying to transfer from one position to another — whether it’s in and out of their bed, in and out of the shower, or in and out of their car.”
To facilitate efficient and safe transfer between seated positions in a home setting, Dougher recommends a product like the Etac Patient Transfer Turner. Intended for individuals who can adequately bear weight with support, the Transfer Turner provides a comfortable and steady means of transferring for both the individual being transferred and his or her caregiver; the product’s ergonomic design allows the caregiver to serve as a counterweight to the individual. For individuals with more limited upper-body strength, the Rand-Scot EasyPivot Patient Lift is a good alternative.
When a person’s diagnosis affords him or her a bit more independent mobility, the Upeasy Seat Assist from Uplift Technologies Inc. is another option to help transfer from a seated to a standing position. Powered by hydro-pneumatic gas springs — no electricity is required for this model — this portable solution can lift up to 70 percent of a person’s body weight (up to 220 pounds) as he or she begins to stand.
|Upeasy Seat Assist|
“Both transfer turners and seat assists make getting from a seated position to a standing position much easier, and with less energy expenditure, so it helps reserve energy for other activities and also makes the user in some cases less dependent on a caregiver for basic mobility needs,” Dougher notes.
For car transfer, Dougher suggests any form of a swivel car seat cushion that stays fixed to the seat but allows for 360-degree rotation to help the user easily pivot in place and swing his or her legs into or out of the car from a seated position.
As an added tip for car travel, Dougher advises wheelchair users to keep a portable or suitcase ramp handy to help ensure, or at least improve, access opportunities when visiting locations outside the home. For example, Amramp’s Portable Ramps, which range in size from 2 to 12 feet, can be easily folded and carried by built-in handles to tote and store as needed. Having smartly conserved precious energy in other ways, with the help of products like those mentioned here, Dougher says, you don’t want to unnecessarily limit your mobility options later based on what may or may not be available at an unfamiliar location — “that’s why having a good ramp makes sense.”
In other words, be proactive about being active.
Additional Adapted-Activity Solutions that Help Maximize Mobility
Meywalker’s walking aids are available in a few different models to best suit users’ needs based on their disability, height and other factors. Unlike a standard walker, Meywalkers use a person’s own weight, via a spring-suspension seat, to provide support and balance and to enable a more natural gait.
How much: Inquire for details
This 11.5-pound portable exercise “bike” without wheels can be used for both upper- and lower-body pedaling. Resistance can be adjusted manually to tailor activity levels to an individual’s care team-approved exercise parameters and needs. A display screen tracks time, reps, calories burned and more.
How much: $49.90
This assistive robotic arm affixes to the frame of a power wheelchair and can be integrated with the chair’s own controls and power source to help users with limited or no upper-body ability to touch, grasp and move objects. Made from carbon fiber, the Jaco arm is both extremely durable and lightweight.
How much: Inquire for details
Note: The products mentioned in this article are not endorsed by MDA. When choosing any assistive technology equipment, be sure to do your research and consult with your MDA clinic team, as well as an assistive technology professional (ATP).
Evan Noetzel is an editor for Quest.