ALS Management – Ending Isolation

July, 2021

Astute readers will recall my earlier harrangues over the lack of professional case management in dealing with this wretched disease. Thankfully help on the way came courtesy the ALS Association Golden West Chapter which has case managers available to us pALS. Unbeknownst to me, my initial need for a case manager coincided with a temporary staffing shortage which impacted my fair region. Once the staffing shortage was resolved, COVID hit, and case manager home visits were suspended. Bummer.

I met my new case manager, Julie, at the Stanford Neuromuscular Clinic during one of our marathon appointments. She reached out subsequently and we kept in touch over email during the great sheltering. We finally got together at our home recently and I was blown away by her depth of knowledge and experience gained from twenty plus years of experience in working with pALS and the pALS care ecosystem.

Before getting into the tasks an ALSA case manager performs, I asked Julie what has changed in the years she has been working with pALS. She talked a lot about the reduced isolation of pALS due to the growth of support groups and the increasing benefits of technology. In person support groups exist all around the greater Bay Area, the state, and nationally. There are also a number of online and Facebook groups devoted to ALS. All sorts of useful and, particularly on some of the online sites, less than useful, information can be found. As opposed to the solely informational sites, the support sites all seem to have a social aspect available to users, although they tend not to be optimized for eye trackers like me.

The impact of technology can’t be overestimated. The three major life enhancements for us pALS are mobility, breathing, and communication. Although the first two have undoubtedly experienced significant improvements, it is the third enhancement of communication that has reduced the isolation of pALS. Eye tracking, the use of the eyes to operate a device, opened up outside contact. From telling doctors their condition to asking for a glass of water, pALS can now more actively participate in the world. Although eye tracking can be extremely frustrating to use at times (it took all afternoon to write this paragraph), it is a lot better than nothing.

Eye tracking is just the beginning. Research into direct mind melds with communication equipment is in the prototype stage. Because the prototypes involve surgically implanting circuitry in your brain, I don’t expect to see these devices at Costco anytime soon.

Enter COVID and the need for technology to be the mother of invention. I talked about in person support groups. Not surprisingly, these shut down with the great sheltering only to open up again on Zoom. Now that folks can consider in person meet ups again, Zoom may allow participation in those meet ups by homebound pALS like me. Hopefully I will have the good sense to attend a group once they go hybrid.

All of these new communication innovations have helped to break pALS out of our isolation and back into the world, albeit virtually. Although looking for a cure is critical, it’s these advances in communications that are making life just a little more bearable for us pALS. They have definitely made this blog possible, although you shouldn’t hold that against them.

See you next time.