ALS in the Time of COVID

Deb and her father, Dick Murphy, at a recent ALS fundraiser.

There is a 2007 film, “Love in the Time of Cholera” by Colombian Nobel author Marquez that inspired this blog title; but, since I could not find a free-streaming version, and I am cheap, I make no claims as to the parallels between what I will write and the film (or the book from which it was derived).

It is Sunday morning. Our church has moved to streaming without physical services, so I used the time to get some groceries, and I have a few observations:

• People are reacting to COVID like it is a Boston blizzard, stripping the store shelves of certain items (particularly frozen and canned) to prepare for a short period of isolation (also toilet paper and bottled water, so maybe the parallels to cholera hold).

• We are in the early "shock" phase of this crisis unfolding (hopefully temporarily) with high social distrust: butchers, fish-mongers, and cashiers are cheerful; fellow shoppers walk with eyes down, moving quickly, grabbing and running. Our hoarding behavior will cause strange effects in supply levels as inventories move from stores to basements. https://sloanreview.mit.edu/article/the-bullwhip-effect-in-supply-chains

• Public restrooms are going offline in some places (a problem for me): plan ahead.

Abbey and her fiancé, Ted Day, during their visit to Boston last weekend.

Why am I bringing up COVID on a site about our relationship with ALS? Well, first, because our world has changed. Anne is home from college permanently (good for us), and her summer research job at the Mount Holyoke lab is now up in the air. (She cannot believe how quiet it is here.) Second, our planned week together in London and Paris that was to begin this morning is off the table. Third, we are looking forward to an undisrupted wedding in July! Fourth, we had our last social time with friends in our kitchen last Sunday night; and, since that time, we are all more cautious about sitting and chatting in with friends. I am not saying any of this is bad or wrong. It is not, and we understand. Deb and I are both over 55, so we are considered higher risk. Visits with Deb's parents have been suspended indefinitely.

Anne prior to having her freedom from us revoked temporarily...

Deb is a social creature, and ALS is already taking some of that fuel from her daily life. At our last visit to the team at MGH-Healey two weeks ago, her lung capacity was unchanged (an exciting and extremely good sign); yet the ability to hold long conversations well into the day is compromised, encouraging us within the family to fill in longer sentences. I know that, with more time in this pandemic and at this rate, we will see less of people; and that is not the way we want to spend precious and present time. (Can we ever travel to see each other? Should friends and family members use public forms of transportation to see us?).

Some thoughts and requests:

• Stay in touch.

• Schedule a Face-Time. It need only be short, but it will mean a lot even to wave and share a smile.

• Send something funny in a text or email or news about one of your kids or how you are doing.

• Recognizing everyone’s current level of apprehension, schedule time when warmer days allow for an outdoor visit.

• Wash your hands (and sing "Happy Birthday" twice to get to 20 seconds). Don't use up all your hand sanitizer in the first week.

• Tom Brady will make a decision so that we can all exhale. I miss March Madness.

• Deb shared that people in Italy are coming out on their balconies and singing, encouraging others to join along. Try it somewhere.

ALS will move forward, hopefully slowly as it has. The COVID pandemic will likely run for much longer than the way in which current social behavior is adapting, so those are two curves of differing duration we need to manage. The risk in ALS is not currently an immunity challenge but could eventually be pneumonia under compromised breathing capacity, and that risk (and COVID, absent a vaccine) may progress in parallel. We are gaining experience with the physical isolation that occurs as a neuromuscular enemy like ALS claims new territory (eating out is less fun). What we don’t want is the added social isolation of COVID, and so I encourage your creativity. NewsHour, an evening staple of ours, is really not helpful right now. The only good television we have found is watching old Netflix series (like Bloodline) and movies (except for the one with which I opened the blog, because I have not seen it...). Pop microwave popcorn (it takes up less room in the pantry) and skip the LaCroix (for the same and opposite reason) and rediscover public water. Beer might work. Guard against the depression of social isolation. Be proactive in your relationships.

Paul, posing as a polar bear.

We started this site last Fall so that we would not be alone and isolated at this time and you all could be with us in this present journey, and I hope this quick missive is helpful to let everyone know that we are still in the fight, holding the advancing army at bay, and eager for any news from all of you, accessing the means that you find most within your comfort zone. I also write just to write, because each time I or one of our kids does, Deb gets a burst of news and contact.

If we cannot be together, let's hold together. I said in one of my first posts that hugs were welcomed and restorative. We are searching for how to replace them. We love you all.