Sunday, August 16, 2009

Support Group - Strength and Knowledge in numbers

I am very fortunate to be able to attend a local ALS support group, supported by the Greater Bay Area ALSA chapter, located in Northern California. Each month, anyone from the area is welcome to share a cookie, their story, and learn firsthand about how to cope with ALS. More importantly, in my opinion, is that for just a few minutes, attendees know without a doubt, that however hideous this disease is, one does not have to fight alone....there are others on this same journey.

I am always impressed by our group leader Eileen Nevitt's ability to secure top flight speakers. A few months ago, Dallas A. Forshew, R.N., BSN Manager, Clinical Research (ALS) at the Forbes Norris ALS/MDA Clinic gave a presentation on the ABC's of ALS. We were fortunate that she allowed us to film her presentation, which can be found on the chapter's YouTube channel.

Yesterday, Margie Petrakis, RRT, RN and one of the outstanding Regional Care Managers in Northern California, gave an informative and comprehensive presentation on respiratory care and equipment for ALS patients. 90 minutes passed quickly as she discussed the physical mechanics of breathing, what happens to patients with ALS, and the various options to manage symptions, available to patients to maintain good quality of life.

Maintaining respiratory health is important, regardless of an ALS diagnosis! While especially important for ALS patients, some of the very basic things we can ALL do keep breathing easily are:
  • NO smoking!
  • Early detection and treatment of everyday illness - don't let a "little cold" grow up!
  • flu/pneumonia vaccines
  • avoid infection - steer clear of favorite germy hotspots like crowds, public transportation, doctor's offices, sick people, magazines, grocery carts, kindergarten classes, etc. and, if you must venture into these places, take precautions like paper masks, hand sanitizers, disinfecting wipes.
  • Wash your hands!

Respiratory Care for an ALS patient breaks down to three major components: Testing, Treating symptoms, and Follow-up (clinic and home care).

Testing determines how efficiently your respiratory system is operating and gives clinicians the necessary data to make appropriate recommendations for your individual circumstance. In addition, you and your primary caregiver are the most reliable source for what is "normal" for you. You know your body best. In order to determine the best possible solution for you, it is critical to participate and partner with your medical team. If you experience any of the following symptoms, please share them with your clinician, as they could indicate the need for additional testing and/or solutions to keep you running your best.

  • Excessive daytime fatigue
  • Trouble thinking or concentrating
  • Morning headaches
  • Not feeling refreshed in the morning
  • Frequent awakenings at night (known/unknown reasons, unusual sleep patterns, nightmares, night sweats, respiratory complaints)
Once you and your physician have agreed on a solution, COMPLIANCE is critical. will probably take some time to get used to the new routine. Margie shared some helpful tips.
  • Choose an interface (mask/nasal apparatus) you think you can live with - there are many to choose from. Some vendors offer special 30 day trial programs.
  • Whatever interface your choose, make sure it fits properly (not too loose and not too tight) and that it doesn't leak into your eyes. An RT (Respiratory Therapist) can help guide you to finding the interface that is "just right" for you.
  • If the vendor doesnt respond, contact your physician immediately and request a change of vendors early!
  • Be persistent and keep trying. It may take a couple of tries to find the right solution.
  • Keep a positive attitude and work with your caregiver to make the necessary routine adjustments.
  • Enjoy the benefits of better breathing!

    Each of us received a copy of "ALS Respiratory Decisions" A Guide for Persons with ALS and their families, produced and distributed by the Jim "Catfish" Hunter Chapter of the ALS Association. This concise and informative guide was written by Connie Paladenech, RRT, RCP with Sue Humphries, LMSW. I found this guide to be well written and as with all information written regarding ALS, is designed to provide some basic information. It should help guide the conversation with your professional health care team and is not, in any way, a replacement for sound medical advice. To find an ALS chapter providing services in your area, please visit the National ALSA website.

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