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.
A resource for all
A person living with advanced MS may have extremely limited mobility, may be more susceptible to infection, and have difficulty managing symptoms such as pain, impaired speech, cognitive deficits, eating and swallowing difficulties, and/or bladder or bowel incontinence. A person who is newly diagnosed may also have some of these same symptoms, but it would be expected that these symptoms might improve over time in those with relapsing MS. For a person with advanced or progressive MS, the symptoms may slowly get worse over time and create complications.
Here is a list of the top 50 symptoms of multiple sclerosis, many of which can affect both newly diagnosed people and those who have lived with the disease for many years. You will find links to more articles related to specific symptoms highlighted in the list. Additional articles will be added over time.
Because advanced MS is a very important topic for which there is little information, I’d like to create a resource that provides information on specific topics appropriate for patients with more advanced MS and their caregivers. Here are some examples:
- When Should You Consider Nursing Home Care?
- Living With Advanced MS: Respiratory Care
- Lung Volume Recruitment and MS
Additional topics I plan to cover include palliative care, financial planning, end of life discussions, mobility equipment, home adaptations, wound care, and more.
What topics would you like covered? What would you like to know about living with more advanced MS or progressive MS? Please leave your suggestions in the comments below.
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Lisa Emrich is a patient advocate, accomplished speaker, author of the award-winning blog Brass and Ivory: Life with MS and RA, and founder of the Carnival of MS Bloggers. Lisa uses her experience to educate patients, raise disease awareness, encourage self-advocacy, and support patient-centered research. Lisa frequently works with non-profit organizations and has brought the patient voice to health care conferences and meetings worldwide. Follow Lisa on Facebook, Twitter, and Pinterest.