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Making the Most of Your ALS Multidisciplinary Clinic Visit

Peggy O’Connor, RN, BSN, Director of Care Services, ALS United Greater Chicago

ALS affects many aspects of health and function, and research clearly demonstrates the benefit of multidisciplinary care. Those who receive multidisciplinary care enjoy a better quality of life and improved longevity. The frequency of clinic visits may vary depending on the rate of symptom progression, but the average appointment interval is every three months. ALS United Greater Chicago supports this level of care by awarding grants to hospital systems to help offset the cost of seeing several providers in one trip.  This ‘one-stop-shop’ approach can significantly save your time and energy.

While these visits are extremely helpful, they can feel long and tedious. It takes time for multiple assessments and the formulation of the plan of care for each discipline. The discussion often centers around changes in strength or function, and there is the unwelcome anticipation of having a therapist or doctor quantitatively confirm the progression of weakness. Here are a few strategies for making the most of these important appointments and ensuring a positive experience.


Remember that you are an active – and the most important – member of your care team. The specialists in clinic want to support you in living your life to the fullest and doing so safely. In order to do this, they need you to share what your goals and priorities are. What things do you enjoy doing that are becoming more difficult? What areas of function are most challenging for you? Take some time before your appointment to give some thought to what is most important to you, and what you want to get out of the visit. Coming to clinic with a list of your questions and needs will help you get the most personalized guidance and support.


Clinic appointments are your primary point of contact with your care team. There is a great deal of information that is conveyed in these meetings – new equipment to be ordered, further testing, medication changes, and follow up therapy appointments. It is a good idea to have another set of eyes and ears with you. Your support person can take notes while you focus on interacting with the team. They can also help you remember things that you wanted to talk about but may forget to bring up. As ALS progresses to affect nutrition and breathing, your clinic team will have in-depth discussions about your wishes concerning things like a feeding tube and tracheotomy. Having your healthcare power of attorney accompany you to these clinic visits can help ensure that they fully understand and support your medical decisions and priorities if at some point you are unable to express your wishes.


Sometimes important issues come up between scheduled clinic appointments. Discuss with your team how best to communicate between visits. Many offices encourage messaging through the medical system care portal. If you have hand weakness that makes this a difficult way to communicate, ask about the best way to reach your team by phone or identify someone to be your proxy in communicating through the portal. Conversely, if you have trouble speaking, work with your team on making sure there is documentation in your file that messaging through the portal is preferred over phone calls.  


Every effort is made by the clinic team to be efficient with the time you spend in multidisciplinary clinic. However, seeing multiple providers will naturally take a minimum of 90 minutes, and usually a few hours. Even with the best planning there can be gaps between providers. Have something to read, play a game on your phone, or take the time to visit with your support person. Bring something to drink to stay hydrated. If your visit is scheduled during your usual mealtime, try to eat something before the visit and feel free to bring a snack or supplement. Ask about the accessibility of the bathroom at your clinic and plan for assistance with transfers as needed.


Clinic visit days can be physically and emotionally exhausting for both the person with ALS and the caregiver. Spending several hours talking about ALS can take a lot out of you. When possible, plan a relaxing evening on clinic visit days to allow yourself some time to absorb all the information that was presented, or to take your mind off of heavy discussion. A relaxing evening will look different for everyone, so think about what works best for you. You might enjoy distracting yourself with a lighthearted movie, spending some quiet time with people you care about, or enjoying some of your favorite music and comfort food. Give yourself some space to process the day in whatever way feels best for you.


In later stages of ALS when endurance and mobility are severely impacted, coming to clinic may become a significant burden. If this happens, discuss with your doctor the option of a virtual visit. It may also be time to transition to more home-based care with support from palliative care or hospice. The team will remain available virtually for support, as will your ALS United Care Services Coordinator.

Peggy O’Connor, RN, BSN, Director of Care Services, ALS United Greater Chicag

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