The One Thing to Always Bring to the ALS Clinic

The One Thing to Always Bring to the ALS Clinic

Dagmar Living Well
Last week I spent a few 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 seven years 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 who 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.

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 and a positive attitude. You’ll find the visit much more rewarding and the time well spent.

***

Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ALS.

6 comments

  1. Michelle says:

    My husband was diagnosed over a year ago, and we have been attending a multi-disciplinary support clinic every 10 weeks or so since that time. While it is emotionally draining preparing to go, going, and returning home afterwards, we agree that it absolutely is worth it and that our team provides positive, constructive advice about how to live with this ever-changing condition. I couldn’t agree more that an open mind is a must-bring to the experience. I’d add a few more must-brings, though: we carry with us courage, humor, and especially HOPE. And we don’t just bring them to clinic. We carry them with us wherever we go. Sometimes it’s harder than others to pull them out, but they are our talismans for moving forward however we can, whatever it takes.

  2. johanne landry says:

    Thank you Dagmar. That is what I bring each time I go to the clinic. Positive attitude and an open mind. Thanks for writing so well.

  3. Leslee Smith says:

    Thanks so much for the post. We have a 200 mile drive to the nearest ALS support clinic and I have heard people here question why go so far when we can get those services here? Well, you answered the question for me. If the services are organized and one-stop, why would I not take advantage of such help? I would bring my open mind and good attitude, but I’m sure they would help with that, too!

  4. christine comodo says:

    My husband has been diagnosed 15 months ago and we go to the ALS clinic about 100 miles away. I read that you were given breathing and flex exercises. I wonder why my husband was never given this advice. I will certainly question them on our next visit. Thank you for sharing.

    • Dagmar Munn says:

      Christine – – Always feel free to ask questions when visiting your ALS Clinic. The clinic is not only to take measurements and track your husband’s ALS, but also to provide you both 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! 🙂

Leave a Comment

Your email address will not be published. Required fields are marked *