ALS is a complex disease that requires a significant number of specialists who support their patients. Because of this, there have been numerous ALS centers of excellence created across the United States to offer a unique and all-encompassing medical support team. The term usually associated with this type of care is multidisciplinary or Interdisciplinary both of those mean that you get care from various specialists within the same office space and visits. In the state of Washington there are three of these ALS centers of excellence that I know about one is run by the veterans administration out of American lake VA hospital the second is a care center run by Kaiser Permanente out of Tacoma as well and there’s a larger ALS center of excellence in Seattle as well.

Every three months I go for what’s called a clinic day. We arrive around 9:00 or 10:00 AM and we see groups of specialists every half hour to hour throughout the day until 3:00 PM. I have a nurse coordinator who schedules all of my visits as well as being my single point of contact to interact with all other members of the team. I send her messages and ask questions and she pushes that to the correct specialist who then provides answers and input. The team that I see includes the following specialists:

ALS psychiatrist ALS neurologist ALS nurse coordinator General social worker Dietitian Speech and language pathologist Occupational therapist

Physical therapist Recreation therapist Respiratory therapist And Pulmonologist Paralyzed veterans of America case coordinator ALS Association of America coordinator Mental health therapist Lab and other support personnel

Usually the first specialist that I see is the respiratory therapist.  There are a wide range of breathing related tests that helped to measure how well muscles related to your breathing are working. Here are examples of some of those tests:

• Forced vital capacity (FVC): A spirometer measures how quickly a person can exhale air from their lungs. FVC is the most common test used to monitor ALS patients. 
• Slow vital capacity (SVC): A spirometer measures the volume of air exhaled after a full, relaxed breath. 
• Forced expiratory volume in 1 second (FEV1): Measures the amount of air exhaled in the first second of a forced exhalation. 
• Forced expiratory flow (FEF): Measures the speed of exhalation during the middle of a forced exhalation. 
• Peak expiratory flow (PEF): Measures the maximum flow rate of exhalation after a full inspiration. 
• Maximum inspiratory pressure (MIP): Measures the strength of the muscles used for inspiration. 
• Overnight oximetry: A sensor worn on the finger during sleep measures the amount of oxygen in the blood and checks for breathing changes. 
• Arterial blood gas (ABG): A blood sample measures the amount of oxygen and carbon dioxide in the blood. 
• Sleep study: Measures breathing, oxygen levels, leg movement, and sleep cycles while sleeping.

The respiratory therapist and associated pulmonologist discuss breathing related assistive devices like the bipap machine that assists with both breathing in and breathing out. This is similar to a cpap machine that people with sleep apnea used to help them sleep and maintain their airway but a bipap uses dual pressure one for inhale and a separate pressure for exhale. One of the difficulties with ALS is that it is hard for a person to exhale carbon dioxide which can build up in the lungs.

Typically I see the psychiatrist and ALS neurologist together and they assess my overall progression performing many tests related to movement and strength. The psychiatrist asked lots of questions about my mood and difficulties in performing tasks and how that affects my mental health. The ALS neurologist perform some quantitative measurements on different muscle groups so that we can evaluate progression.

The ALS nurse coordinator keeps all of the other specialists on track and brings them to the room where I sit and wait for the each to show up. She also schedules all of the appointments and is my single point of contact for any requests to the other members of the team. This approach works very well because she can ask questions or find out who’s the right person to send my inquiries to and they get back to me directly.

The social worker is kind of like a general health advocate for me as an ALS patient within their purview. She’s very knowledgeable on all of the various aspects of working with the veterans administration and external ALS support groups as well. In addition she is always looking out for and supplying input to the other specialists for example she had me perform an anxiety and depression questionnaire to see if that was something that I might need assistance with and provided the input so that I could get a mental health counselor.

The dietician that I see asks all the right questions about what my daily food intake looks like, how I’m doing managing my blood sugar levels and diabetes as well as providing information about resources that I might need in the future. One of these significant discussions that we have had recently and have to take action on is the surgical installation of a feeding tube and how nutrition and hydration works with that system.

The speech therapist and I don’t do much together yet. In the future ALS will start to affect the muscles in the face neck and throat which will make it difficult to communicate verbally. For now all that the speech therapist does is check my muscle responses in my mouth tongue and throat area. One resource that I have used through the speech therapist is a system called voice banking. This is where you record your voice and an artificial intelligence synthesizer creates a voice that can say most words and that would be used later on with an input device like a keyboard or eye tracking software system. Hopefully it is many years before I need to use this system but I have my voice captured now while it is still strong.

The occupational therapist, physical therapist, and recreation therapist usually come as a group to meet me. During our hour long session we discuss how I am physically moving around in my environment at home and if there are equipment needs that I require to make moving around easier. The occupational therapist in particular is the one who helps with mechanical devices that assist in moving and transportation. Resources provided through this group include reach and handlebars mounted in the bathroom, wheelchairs both electric and manual as well as the electric scooter I am currently using outside the house. The physical therapist provide similar support but the tools and resources she brings to the table include walkers, canes and other individual pieces of gear that help with mobility. I had never heard of a recreation therapist, but his job is to figure out what other tools might be available to help me do things that I want to do inside and outside of the home. For example I’ve always been a green thumb kind of person who enjoys planting and doing yard work. The recreational therapists has resources that will allow me to do some of these things easier while in a wheelchair and we will be working to procure those tool soon.

One significant member of the team who provides an immeasurable amount of support is the paralyzed veterans of America coordinator. This group acts as my advocate and representative to the veterans administration on the veteran benefits side. During the clinic day I see several individuals who all take individual notes and add that to my growing health record. The PVA coordinator looks at those records along with asking me questions during the day to see if there are any significant changes that would warrant an update or request for enhanced financial benefits that are offered by the veterans administration. During our first visit which was only a few weeks after my original diagnosis the PVA coordinator filed all of the paperwork required and followed up with any support documentation to the veterans administration benefits team. This is a huge relief and very beneficial support because they know all of the INS and outs and the right language and forms and process to use to get results desired. It took less than a month to get my medical condition documented and a 100% total and permanent disability rating approved through the VA.

Mental health is just as important as physical health and needs to be addressed especially if you are designated as a terminally ill individual. The social worker began the process of asking me questions about mental health including depression and anxiety. While I had not originally thought this was something I needed help with it was pointed out to me that if you are terminally ill and don’t have a little bit of depression and anxiety you are probably in denial. So with a little bit of questions and evaluation I have been officially diagnosed with anxiety and depression and have since sought mental health support. One of the very cool resources that I have discovered is the ability to do virtual caretaking appointments that allow me to see specialists without having to go to their location. So as an example I see mental health counselor once a month and we talk about relevant coping mechanisms and strategies as well as being able to see the pulmonologist and talk about how to use the bipap machine and get used to that device. These appointments are easy to do on my phone or tablet and they actually have a VA remote medical app that you download and install. It is super convenient and makes it more comfortable especially for mental health discussions.

So that above is what is my experience through the American lake VA hospital and the ALS center of excellence hosted there. Anyone dealing with ALS needs to have a significant amount of support behind them, i could not fathom doing all of these types of support appointments by yourself and through a non interdisciplinary medical team approach. I am so thankful for all of these specialists and their ongoing support.