Scheduling, attending and making the most of follow-up visits at your MDA clinic can make the difference between living with ALS and giving in to it.
But oftentimes, people aren’t sure exactly what to expect out of follow-up visits.
It’s a mistake, doctors say, to assume that the only purpose of these visits is to allow the physician to monitor disease progression or record statistics.
To what end?
ALS — like illnesses such as heart disease, lung disease and diabetes — is chronic, and physicians often can give medication or provide care to manage it, notes neurologist Steven Ringel, director of the MDA/ALS Center at the University of Colorado in Denver.“
Much of what we do in medicine is maintenance, not curing,” Ringel explains. “The overall goal is to maximize the quality of life.”
Of course, making the best of life with ALS requires dealing with the symptoms that come with it. To that end, physicians address not only physical symptoms, but psychosocial issues such as depression and the nature of support the individual has at home and in the community.
Many symptoms can be well-managed, “and this helps people do the things they love for as long as they can and want,” says neurologist Merit Cudkowicz, director of the MDA/ALS Center at Massachusetts General Hospital in Charlestown.
Sleep disturbance, pain, cramps, spasticity and difficulty with mobility are just some of the symptoms that can be addressed in a clinic visit, Cudkowicz notes. “We also discuss research updates and offer new treatment trials, if available. The field of ALS research is moving fast, and clinic visits are an opportunity to discuss these new advances and continue to offer hope.”
One further point to consider: Follow-up visits provide important education to physicians, other professionals and students, particularly those just coming into the field. These visits give them the opportunity to see how this little-known disease progresses and what the needs are at different time points.
A matter of timing
The time between diagnosis and the first follow-up visit with an ALS specialist varies depending on the clinic, the physician and the specific needs of the individual. This also is true of the intervals between subsequent follow-up visits.
“This has to be customized,” says neurologist Hiroshi Mitsumoto, director of the Eleanor and Lou Gehrig MDA/ALS Research Center at Columbia University in New York. “It should not be simply routine, ‘every patient, three months.’ It’s dependent on the needs of each person.”
Mitsumoto says the average duration between visits may eventually “settle in” at three months, but scheduling always should be based on needs and medical status.
Likewise, Ringel says he prefers not to be “locked in” to a set one, two or three months when it comes to scheduling that first return visit.
If I have a very anxious patient, I’ll see them for their first follow-up in a few weeks. If I have someone who’s less anxious and pretty calm about it, who understands it and maybe just wanted a second opinion, I’ll usually ask them, ‘when do you think it would be a good time to see me again?’ and then decide together.”
Ringel says it helps to get a series of “data points,” or measurements, particularly in the beginning, in order to determine the rate at which the disease is progressing. “So usually three months is the longest I’ll recommend for a follow-up, but in cases where there’s little to go on, I frequently recommend sooner — especially for the very first visit.”
Keep in mind it’s not always necessary to wait for the next appointment to discuss questions or concerns. Many physicians will address these issues by phone or e-mail between clinic visits.
What to expect
Neurologist David Chad, Director of the MDA/ALS Center at the University of Massachusetts in Worcester, describes the follow-up visit as “a time of fairly intense activity for the patient, caregiver and family.”
These visits often include time spent with a multidisciplinary health care team that can include nurses, neurologists, pulmonologists, physical and/or occupational therapists, nutritionists, speech-language pathologists, social workers and others who evaluate the individual and develop a strategy to manage symptoms in the most effective way possible.
The person with ALS should expect to address several layers of concern at each visit, says Chad, such as:
- How am I doing? How is my breathing status, and is it time to consider noninvasive ventilation? Is it time to consider symptom-control medications or assistive equipment?
- Is there news about a clinical study for which I might be eligible?
- What’s new in the world of ALS care and research?
Follow-up visits also are a time to learn what to anticipate in the future. This might include discussing such things as ventilatory options, feeding tubes, mobility issues and whether the individual’s house can accommodate a wheelchair or other equipment when it becomes necessary.
Ringel notes that providing an understanding of what may happen down the road allows people time “to adjust and cope.”
A group effort
It’s extremely helpful for family caregivers to attend follow-up clinic visits with their loved ones. ALS affects the entire family, so the more education and understanding everyone has about the disease, the better. Open communication can help ensure that everyone’s needs are met.
In fact, one of the roles of the physician, says Ringel, is understanding who’s filling certain caregiver roles, how they’re doing with it and what, if anything, they want or need to address. This helps ease fears and uncertainty and makes daily living with ALS easier on both the individual with ALS and caregivers.
Cudkowicz suggests the caregiver “ask questions, advocate for the patient, share what’s working in the home (and what’s not), and address concerns and fears.”
Chad confirms that this type of support is crucial. “The caregiver/family member is an integral member of the care team, joining the nurses, doctors and therapists, and working collaboratively to achieve the best possible symptom management.”
Making the most
With so much to gain, making the most of follow-up visits is key.
It’s always a good idea to write down ahead of time the things you want to talk about. Ringel suggests keeping a notebook for that purpose.
In addition, Cudkowicz suggests bringing along a list of medications, and contacting the clinic in advance if you want to schedule an appointment with a particular specialist. She also recommends bringing in any equipment for which you want instruction, or that you want the team to evaluate.
Make sure the ALS team coordinates with your family doctor or any other health care professionals you see on a regular basis. In many cases, the ALS physician will notify your other doctors in writing of the ALS diagnosis; if they don’t do it automatically, make a specific request. MDA health care service coordinators often can facilitate this process.
Says Mitsumoto, “Together we provide some kind of hope, whatever kind of hope we can. We’re making a team — physicians and patients — working together to solve a prob-lem. If everyone feels that way, it can only result in success.”