Flying With A Motorized Wheelchair: An Interview

Traveling with a disability can be difficult at times, but traveling with a motorized wheelchair presents special challenges. I learned more about those challenges when I accompanied my good friend Karen on a trip last summer.

Karen lives with primary progressive multiple sclerosis (PPMS) and uses a motorized wheelchair to get around. She was headed to an MS event in Chicago to discuss an upcoming MS medication, and I accompanied her to provide assistance in the airports and to ensure safety in the hotel.

This was my first time traveling with such complex equipment and the experience was truly eye-opening as there was nothing simple about the process. I’ve asked Karen to share what she has learned about flying with a motorized wheelchair as she travels the country as a patient advocate.

Lisa: Karen, how long have you lived with MS and what kind of wheelchair do you use?

Karen: I was diagnosed with MS in February 1996, but distinctly remember symptoms in August 1994. My wheelchair is a Permobil M300 with the capability to recline, tilt, and raise up. It weighs 345 pounds, has headlights and taillights, and can go about 6 miles per hour. I use the chair because of bilateral weakness of my lower extremities and extremely poor balance, which combined seriously limit my ability to walk. The wheelchair gives me freedom and allows me to maintain my independence.

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Traveling By Air With A Motorized Wheelchair

What is Advanced Multiple Sclerosis?

Rosalind Kalb of the National MS Society stated at the Consortium of MS Centers conference in June 2016 that there is no clear definition of what constitutes advanced MS. The term is used quite broadly. It may be used to describe the person with MS who is dependent upon others for assistance with personal care and daily activities, who is rarely able to leave the home, and who cannot be left alone for extended periods of time. However, the term advanced MS may also refer to a person who has more progressive disability, symptoms that interfere with activities of daily living, or safety issues that require adaptations to maintain independence and mobility.

Advanced MS does not mean 'home-bound'

My dear friend, Karen, is a person living with primary progressive MS for over 20 years who arguably has “advanced MS” but who is fiercely independent and able to stay engaged in the community with the help of specialty equipment and accommodations. She uses a rather large 350-pound electric chair, drives her own van with hand controls, and until recently was employed full time in a medical office.

Karen traveled to Chicago this summer and I accompanied her as a caregiver to be available to help manage luggage and extra equipment, make sure that she could get in and out of bed safely, and to give her the peace of mind that if anything went awry she would not have to face it alone. I’m sure that I helped Karen tremendously but one thing I learned from watching her interact with others on this trip was that a smile, patience, and clear communication had the power to overcome many hurdles that arose along the way.

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What Is Advanced MS?

Respiratory Dysfunction in Advanced Multiple Sclerosis

What respiratory problems are common in advanced MS?
A common symptom of MS is muscle weakness which may affect the muscles that control breathing. Muscle weakness can make breathing difficult and shallow breathing may contribute to pneumonia. Muscle weakness can also affect swallowing which may lead to aspiration pneumonia. It’s important to remember that patients with MS may have difficulty fighting infection caused by bacteria or viruses.

What are early signs of respiratory muscle weakness?
Symptoms may be subtle such as shortness of breath or a gradual increase in coughing when the person with advanced MS eats or drinks fluids. Increased coughing or total obstruction of the airway may occur when eating solids. Medications that cause drowsiness may affect a person’s ability to control swallowing as well. Or symptoms might emerge when the muscles that control breathing are under increased pressure, such as when you may be standing in chest-high water.

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Living with Advanced MS: Respiratory Care

We Need Better Language to Discuss Advanced MS

Occasionally, readers submit questions regarding “late stage” or “end stage” MS.  People want to know about “stage 4” MS, advanced MS or MS at the end of life.  These questions are often difficult to answer, not just because of the sensitive nature of the subject, but due to the use of nonstandard terminology.

What are the types of MS?

Almost two decades ago, the National MS Society asked specialists in MS patient care and research to help develop a common language to use when discussing disease categories and characteristics.  Four types of MS were defined as relapsing-remitting MS (RRMS), secondary progressive MS (SPMS), primary progressive MS (PPMS), and primary relapsing MS (PRMS).

What are the stages of MS?

One way to view this question is to consider a person’s experience living with MS.  The first stage may include the recognition of unexplained symptoms which initially send a person to the doctor looking for answers, followed by the diagnosis itself.  The second stage might encompass a person’s experience in learning to live with the disease, while adapting to the challenges MS places in the road.  The next stage could be evidenced as the patient accumulates moderate disability.

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What is "Stage 4" MS?