This has been a rather busy week for me. It has been filled with appointment after appointment. That is life with ALS. It really does require a village to keep me comfortable and living. Since there is no cure or effective treatment for me , it becomes an exercise of symptom management. I am sure that the majority of my fellow pALS are going to be familiar with what I discuss today. But there may be some who are not getting the same experience. Especially, maybe my readers around the world.
Medical care for people with ALS is complex and specialized. You do not just go to your family doctor and expect to tackle this. I mean, I guess you could but holy crap, that would be rough ! Here in the states, we have specialty ALS clinics. Mine is run by the University of Texas in San Antonio. These clinics are typically located in the larger metropolitan areas of the country. People often travel long distances to attend them.
So what makes them different and what is the benefit? I can’t speak on every clinic out there, but I believe they are basically similar to mine. ALS is an ever progressing , constantly changing disease that is different from one person to the next. It requires a high level of care from a diverse group of disciplines. The clinic offers the patient the opportunity to see different medical professional in one single visit. What makes it special is that each of them is experienced in treating pALS. That is extremely important ! You wouldn’t take your Ferrari to Cooter’s Garage down the road , right? We have unique needs that need to be met. Unfortunately, we cannot be treated like your everyday patient.
The disciplines who attend my clinic are as follows: dietitian/nutritionist, speech therapist, respiratory therapist, occupational therapist, physical therapist, durable medical equipment representative , social worker, ALS Association representative and the Dr who specializes in ALS. The VA clinic that I attend includes a palliative care doctor as well. Can you imagine having to make each of these appointments and keep track of all the info? These professionals are versed in the challenges that are presented by ALS. Most practitioners have little to no experience with ALS.
Over the years of my diagnosis, I have learned that the medical community is sorely lacking knowledge specific to handling pALS. Even in the emergency room setting, you will be hard pressed to find a knowledgeable member of the medical staff. It is not their fault. It is the nature of the disease. They simply do not deal with it on a consistent basis. Therefore, it is imperative that we are educated on our own needs and have a carer who can advocate for us if the need arises. I have heard many stories of folks who were treated in the wrong manner and who suffered damage as a result. It is not a bad idea to keep your neurologists contact info close by at all times.
Back to clinic. The way mine is run is a little different than what most of you are used to. A typical day at clinic goes like this. Check in then proceed to the conference room to have lunch which is provided by the ALS Association. There we are able to meet other families attending. After lunch, we head back to the clinic where we gather in a waiting area. This is where our clinic differs. Rather than sitting in a room and having each team member visit with you, we are allowed to commingle and visit with the other families as the team members come and grab you when it is your turn to see them. I think it is a good experience to be able to interact with others who are facing the same battle. While it can be intimidating for the newly diagnosed to see people in various stages of progression, I feel that it offers a great opportunity to learn from each other and hopefully answer some questions. The day lasts for about 4 hours and can be tiresome but it is well worth it.
Most of this is familiar to ALS families. If you are not attending a clinic similar to this, I urge you to seek one out. If you are a friend or a relative of a pALS, join them one day. I think it would be a neat experience for you. If you don’t have a clinic where you are , why not discuss it with your care provider and see if you can start one up?