1 Thing to Always Bring to the ALS Clinic

 

Like many ALS patients, every few months I spend several hours visiting with my medical team at the ALS Clinic. Usually, I leave feeling a bit tired from all the testing and chatter, but I always leave satisfied I’ve learned something new and helpful. You’d think that since I’ve been attending these clinics for eleven years now, that the benefits for me would decline. But it’s quite the opposite! In fact, I always learn the most when I make sure I bring along one important thing.

What is an ALS Clinic?

The concept of a multidisciplinary clinic for ALS patients took hold in the 1990s following research that linked extended patient survival time with regular attendance. Specific standards of excellence were then established by the ALS Association with certification for clinics that met these standards.

Basically, an ALS Clinic is one-stop medical care. In my case, in a span of three hours, I see my neurologist, speech therapist, physical therapist, respiratory therapist, dietitian, and sometimes more. And the best part is that I stay in the same room while they all come to me!

Skeptics exist

In spite of the positive evidence, I know of ALS patients and their caregivers who pooh-pooh going to a clinic. “They don’t do anything,” or “They don’t tell me anything new,” I hear them say. In my view, their negative opinion is because they neglected to bring along my “one important thing” to their appointment.

I’ll be the first to admit that having ALS is confusing. For example, progression is to be avoided while maintaining is the goal. And it’s easy to become bitter and negative when living with a disease that has no known cause or cure. Many patients would rather criticize slow research, hint at conspiracy theories, or pass along unproven alternative treatments. But even though I know the doctors and staff at the clinics can’t “fix” me, I know they can offer a wealth of knowledge and advice toward maintaining my quality of life.

Only IF I bring an open mind and positive attitude to every visit

I listen and ask questions such as, “What do you suggest I do to maintain where I am at right now?”

When given breathing exercises or told to flex and extend my ankles every day, I go home and do it. I don’t do the exercises for three days, quit, and later blame the therapist. I add the recommended exercises to my daily to-do list and check them off when completed.

When told to begin using a rollator or to wear ankle braces, I accepted the advice. Not as one more signal of my decline, but as a positive coping strategy. I keep my mind open and my attitude positive.

Always feel free to ask questions when visiting your ALS Clinic. The clinic is not only to take measurements and track your ALS but to also provide you with information and resources to aide in day-to-day living. Be sure to bring along a list of your questions and write down everything so you can follow up at home. Despite my own speaking/voice issues, I still find a way to pepper my ALS clinic staff with lots of questions!

Is a future visit to an ALS Clinic or medical provider written into your appointment calendar? If so, be sure to bring along an open mind, a positive attitude, and ask questions. You’ll find the visit much more rewarding and the time well spent.

*********

A version of this post first appeared as my column on the ALS News Today website.

Photo by Sun Lingyan on Unsplash

Dagmar Munn
ALS and Wellness Blogger

“It is more powerful to speak up than to silently resent.”

The Client Courtship Coach