Assistive technology options for people with advanced multiple sclerosis
Assistive and adaptive technology can have a major impact on quality of life for people with advanced multiple sclerosis (MS) and can help them maintain independence at home.
Some simple and innovative options for adaptive equipment were presented by Elaine Castelluccio, PT, MPT, MSCS, during the third day of the 39th Consortium of MS Centers Annual Meeting in Phoenix, which ran through May 31.
Castelluccio, the director of post-acute transitional care at Burke Rehabilitation Hospital in White Plains, N.Y., says clinicians should tailor adaptive equipment to what matters most to their patients.
“Changes in functional ability are the most common and disabling consequences of MS, and it’s multifactorial … with all the symptoms that can happen and are in a vicious cycle, one building upon the other,” Castelluccio says. “And then, as we age with MS, we can also experience more physical and more psychosocial impairments that further limit our mobility and our ability to get out, our ability to complete self-care activities. And now all of that is decreasing our quality of life, which we know depression and suicidal ideation is is very common with people with advanced disease.”
In addition, Castelluccio says decreased mobility can exacerbate chronic conditions, such as respiratory issues, pressure wounds or urinary tract infections (UTI), which can in turn lead to even more mobility limitations. Respiratory impairments can be especially debilitating by making it difficult for people to effectively communicate or breath, taxing the muscles and causing fatigue.
“So, as the day progresses, I’m even weaker with my respiratory muscles. I may project my voice lower and have to take more breaths in between speaking to you because my breathing muscles and my postural muscles are also fatigued,” Castelluccio says.
Items with assistive technology can help. Assistive technology can be any piece of equipment that’s bought commercially or custom-built to help restore mobility and independence. It can be as simple as a 50-cent pencil grip, which allows somebody to hold a pencil, to a prompting device for individuals with cognitive deficits to remember to eat or to take their medications to an expensive smart home environmental control unit.
For those with mobility issues, there are also a variety of ankle-foot orthoses (AFO), knee-foot orthoses or other braces, walkers and canes available. But Castelluccio implores psychical or rehabilitation therapists to try trekking poles or two canes with their patients before rolling walkers because they keep patients in a more upright walking posture.
“Because what do we do when we walk? We swing our arms bilaterally. And if I just use a cane, it slows down what our normal reciprocal walking feels like to our muscle memory, and our brain still has muscle memory. So, trekking poles allows for bilateral arm swing, keeps us extended,” Castelluccio says.
Functional electrical stimulation devices may also be a good option for people who have trouble lifting the weight of a traditional AFO.
But ultimately, the best device is the one the patient will use regularly, and sometimes those are simple things like a tray that clips onto the top of a walker to carry items, a scoop plate to scoop food onto a fork or spoon, weighted utensils for people with tremors or gooseneck-straw drink aides, which can increase dignity and help prevent UTIs and constipation.
There are also access solutions, including portable suitcase ramps and small door threshold ramps.
Additionally, assistive technology can be found in the bathroom. People who don’t want to or are unable to install permanent grab bars in their bathroom tub can purchase grab bar systems that clamp onto the side of the tub to provide support, and some shower chairs can be customized. Slide boards can also be helpful for transfers, but Castelluccio says there are over 30 kinds of slide boards, so it’s important for a therapist to let patients try different kinds.
If a patient isn’t ready for a power wheelchair and struggles with fatigue, a wheelchair power-assist device might be a good compromise.
“There’s so many different options out there for power chairs where they can recline, they can tilt, they can elevate. So, I can reach tall cabinet in my kitchen to get a dish out,” Castelluccio says, although she notes add-on options must be medically justified when ordering through insurance, which can be a challenge.
Another opportunity to incorporate assistive technology is to help with speech and swallowing.
“When you have articulation problems, or when you have low volume or dysarthria where your words sound garbled, people try and finish your sentences for you, or people assume that you’re drunk, or people assume that there’s something cognitively wrong with you, when, in fact ,you have speech impairments that need to be addressed,” Castelluccio says.
For the severely impaired, there are augmentative communication devices or voice amplifiers for when someone’s voice becomes fatigued.
“So, you might ask yourself, ‘Does this patient have difficulty expressing their wants, needs or thoughts? Does my patient have difficulty having their basic needs met because they can’t verbalize it? Do they become frustrated or give up on attempting to communicate, or does this person understand more than they’re able to tell me? I know that they can, but they’re struggling to tell me,’” Castelluccio says. Then, they should have a speech assessment.”
Lastly, Castelluccio says more patients are now embracing smart home technology for use as assistive technology.
“It doesn’t seem as disabling to have automated your house,” she says. “But what a sense of independence and dignity you’re giving somebody. It’s not about being lazy, being able to activate and automate your thermostat and your TV and your blinds. It’s about giving somebody the dignity to independently control their own home.”
