June 11, 2010

FYI: ALS and Communication

Maddy asked me this in my last post, and I realized that most of you probably don't know this either:
Hey Chris.. in terms of getting the nurses kinda trained like you said in your last post... why don't they send you ones knowledgable in ALS? Or is there no such thing?


ALS is considered an "Orphan Disease" because there are supposedly too few people who have it to make "Fiscal Sense" for Pharmaceutical companies to be interested in researching a treatment or cure. the only ones doing so are the few ALS-specialized clinics (of which Emory Hospital is one), The MDA & ALS Association, and ALS-TDI -- a non-profit "guerrilla research lab" focused on ALS. We have to make do treating it with separate medications by the symptom.

Likewise, there are few nurses who have experience dealing with ALS specifically. However, in terms of care-giving, ALS shares many external symptoms with other diseases like Muscular Dystrophy or Spinal Cord Injury patients. We need someone experienced with the Vent and Tracheostomy care (which is fairly common), some light physical therapy and the ability to adjust her position.

However, we also need someone with the skill to be able to communicate with Mel (which is not common at all). The communication is the make-or-break with these nurses, and it's not a skill that can be taught to many of them. It's easy for her to communicate during the day, when she can type out words on the computer with her head-switch. But at night, it's not feasible to use, so we have to "run the alphabet" using a method similar to this video:

We run the letters, Melissa stops us when we get to the one she wants, and we keep a running tally of them. Remember that she is effectively paralyzed below the neck, so we have to rely on head shakes, blinks and facial expressions as signals. I have become fairly skilled at word/phrase prediction with her (kind of like the predictive text messenger programs on your phone) and can guess fairly accurately what she's trying to say most of the time, given just a few letters. Most of the nurses don't have trouble running the actual letters of the alphabet (and I DO sadly have to use that word "MOST"), but it's more difficult reading Melissa's signals at night, because of two factors:
1) She is lying down in bed, which makes it harder for her to signal, and
2) She has Ambien and Muscle Relaxers in her system to help her sleep. This makes her a bit groggy and makes her facial expressions less obvious, making it harder to read the signals.

When you get down to it, there is very little that needs to be said in her nighttime routine, but each thing is vital to her being comfortable and able to rest. Communicating needs like "Move legs up", "shift arms forward" or "Roll me over" are most of the messages. It may seem simple, but imagine that every time you needed to do these things at night, you had to flag down another person and spell it out to them, letter by letter, in what amounts to Morse Code.

For Melissa, even getting someone's attention can even be difficult at night. We have an alarm set on the Vent that beeps if she coughs, and she uses this to call us over or wake me up. But sometimes she can't set off that alarm because of the muscle relaxers, and the only way she has to get attention is to breathe quickly. The vent itself is very quiet, but there's a small click when it changes from inhaling to exhaling and slightly more "wind" noise when it's pushing the air into her lungs. The nurses have to learn to listen for this change in breathing, but when they're not there, I've actually learned to wake up most times when this happens. (Imagine that, a white boy who has a sense of rhythm!)

So I hope this helps Maddy, and let me open the floor here for anyone else:

Is there anyone who has a question about ALS or Melissa's condition specifically?

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