Tech Perspectives: Multiple Sclerosis
Inconsistency & Unpredictability Makes MS Intervention a Challenge
NERVE CELLS: ISTOCKPHOTO.COM/MAKSIME
Varied in presentation and frustrating in its inconsistency of symptoms, multiple sclerosis (MS) is challenging to the people living with it and the professionals trying to provide successful technology interventions. MS can impact a number of bodily functions and systems — not always in ways easily seen or understood — and is infamous for its lack of predictability.
Choosing the best assistive technology for MS clients is similarly challenging. Jay Doherty, OTR, ATP/SMS, Director, Clinical Education, Quantum Rehab, gives his perspectives on how complex rehab technology can support active, independent and healthy living for people with MS. — Editor
Q: What symptoms of MS most often impact a client’s seating and mobility?
Jay Doherty: With MS, there is an extensive list of symptoms that may be seen. When it comes to mobility equipment, we are likely to see more motor and coordination involvement. The symptoms can range from changes in muscle tone to coordination and/or balance challenges, general or very specific muscle weakness, and endurance limitations. Changes in sensation and vision can also occur.
MS affects the body a great deal and it is very difficult to predict what senses or motoric involvement the team may see. When we are talking about a disease like MS, if an individual has been dealing with it for a long time, we may see orthopaedic changes over time, as well. For someone that has postural challenges as a result of the motor, sensory and neurological issues, they will likely need seating supports to minimize the risk of orthopaedic deformities and secondary medical complications and provide support for functional [goals].
Q: Chronic pain is a common MS presentation. How can chronic pain impact how the client uses and reacts to his/her wheelchair? For instance, can pain impact the amount of time spent in the wheelchair?
JD: Pain absolutely will impact the amount of time that an individual will spend in their wheelchair. Pain or discomfort is one of the top reasons people with MS report spending limited time in their wheelchair, even when being out of their wheelchair renders them dependent.
To address this issue, the ability to change their position when they need to, where they need to and as often as they need to can be facilitated by power tilt and recline to increase the length of time that a consumer who has MS can remain in the wheelchair. I find it useful to let the person know that if they tilt and recline before they start to feel pain, it will help alleviate the pain they are experiencing, or at least lessen the pain. Once the pain starts, it is often difficult to get rid of it.
Q: MS can also have cognitive effects on clients, including emotional changes, difficulties with memory, difficulty focusing and paying attention, and difficulty processing information. How do those difficulties impact the equipment choices that a clinician or ATP could make? When working with and communicating with someone with MS, how can a clinician or ATP compensate for any cognitive impacts?
JD: These cognitive factors can influence the person’s ability to remain compliant with using the equipment or understanding how to use the equipment. In addition, these cognitive challenges can also prevent the individual from understanding why they need the equipment or limit their ability to report what is really happening in their life.
These factors make it more difficult for the team to address the issues the individual is facing. I find that a way to accommodate for these types of cognitive issues is to have family or caregivers attend the appointments with the individual. Ensuring that the team documents the process, the requirements and proper ways to use the equipment can help alleviate some of the memory or cognitive issues the individual may encounter.
The documentation also should be signed off by the individual and/or the care attendant/family member attending the appointment to serve as documentation that the entire team agrees on the recommendations and how to proceed.
Q: MS is also well known for causing chronic fatigue. Can wheelchair seating and/or positioning help at all to compensate for fatigue or to help clients to deal with fatigue? Can other types of CRT (e.g., alternative driving controls) help?
JD: Wheelchair seating and positioning is absolutely a benefit for these individuals who are experiencing chronic fatigue. The seating often provides external support that is necessary to decrease fatigue. In addition, power positioning can significantly assist with decreasing fatigue by allowing the individual to sit in a tilted or reclined position. Gravity provides the support they need to remain positioned, using less strength and endurance to remain in a functional position.
Alternative drive controls can assist with decreasing fatigue with this group. The alternative drive control can be placed in a location where a certain body part has better endurance for driving the power wheelchair. Programming the electronics can change the way the joystick functions and can offer special functions through other types of input devices. This change in programming can determine how the joystick or other device functions, and can be optimized in order to influence how the chair drives for the individual.
Q: Working with and living with MS can be frustrating because its symptoms aren’t consistent — they ebb and flow in severity. How can an ATP or clinician anticipate and choose technology to deal with such inconsistent symptoms and prognosis?
JD: The important thing to keep in mind with MS is that expandable electronics offer the flexibility to continue to meet the needs of the individual, even if they change due to progression of the disease.
Unfortunately, there is no way to predict or prevent the changes that are going to happen with MS. Therefore, the expandable electronics, along with adaptable seating, are very important with this group of individuals.
The other problem that teams run into is that each person will change at a different speed/pace. This makes the disease very difficult to predict. The trick is to provide equipment that is adaptable to individuals. We can also try to look at the history of the disease progression and use that to predict how the disease may progress. This is not an exact science, but history can help with prediction.
This article originally appeared in the May 2018 issue of Mobility Management.