A Simple Twist of Fate

Although I am not much of a Dylan fan - I could never get past his mediocre voice - my partner Alisa is, and this is one of her favorite songs. And it applies brutally to what has happened to her, which is that she was formally diagnosed with #ALS in January 2022, after a series of doctor visits.

So this blog is going to turn into a a bit of an #ALS journal for a while, although not necessarily exclusively. We have a CaringBridge site set up so I'll not duplicate much of that.

One thing that didn't make it on the CB site was my initial email to family and friends, which I do want to reproduce here as a record of how things went early on.

I'm going to go back a little bit for those who haven't been part of the process early on. We noticed some speech and swallowing difficulties in the late spring early summer last year. We didn't think too much about it (but should have of course), thinking it was due to some sores in her mouth (as opposed to the cause of those sores) until about mid summer, when she started to see her PCP (who unfortunately said she was "80%" sure it was nothing). But we still insisted on seeing a neurologist eventually, but were not able to get an appointment until the end of Nov. After his initial exam, he suggested strongly that it was either ALS or Myasthenia Gravis, while acknowledging there was uncertainty until running more tests. We were shocked and upset, and felt he did not handle the interaction well at all, which was confirmed by a neurologist friend who was outraged by the way he handled it, and with the tentative conclusion based on very little information.

That is when we decided to go to Boston, and when the connections began to happen. Aside from the neurologist friend, which was Alisa's sister Nancy's best friend, one of Alisa's childhood friends was a neurologist in California. And Alisa's brother Michael was good friends with a doctor who was very close with one of the top ALS neurologists in the country at Brigham and Women's Hospital. Through that connection we were able to get through to Dr. Amato even though he was out of the office, and get an appointment in early January. It got pushed to Jan 13 due to a scheduling mix up, and we were able to dwell in some uncertainty through the holidays that maybe it could be something else. At the 1/13 appt with Amato further testing was done with nerve conduction and EMG testing with sonogram. It was confirmed that she has ALS. That is when we became truly devastated.

Dr. Amato said that he could treat her there, but recommended the Healy Center for ALS clinic at Mass General as a better place with complete care and research. He said it was run by one of the world's leading ALS doctors and researchers, Merit Cudkowicz. More connections followed this referral, as Michael knew someone else that was close to the Assistant Director at Healy, who proceeded to contact Merit. Turns out Merit was partially trained by the aforementioned best friend of Nancy, Mia, who also got in touch with Merit. And of course the referral from Dr Amato must have carried quite a bit of weight, as the Healy Center contacted us on our way home on 1/13, and said we would be seen first thing Tues after the MLK holiday. When we went in, the first thing Merit said was, “apparently you know some people!”

We met with probably 5 members of their team during that morning. Merit, the NP that will be Alisa’s direct contact, PT, speech/language pathologist, respiratory therapist/breathing test, genetic testing, and blood work, EKG. We felt that we got some relatively good news during that visit. First was that the form of ALS that Alisa has, which involves upper motor neurons more than lower, tends to be slower progressing. Second was that Merit was optimistic that a couple of existing drugs, as well as a trial drug or two would provide a significant slowing of symptom onset and life extension. Third was that she is in the early stages, which is good on its own, but also makes for a better trial candidate. Also she is physically strong, has excellent breathing capacity and has a strong support system.

One downside overlay to this has been the absolute shit show hellscape of the insurance system in this country. There has been resistance at every step, with seemingly endless adminstrivia and advocacy and “transfer papers” just to see the medical practitioners that we want to, and get the drugs she needs. This is not news to anyone of course, but experiencing it first hand is eye-opening and exhausting, like we don’t have enough to deal with. Alisa’s daughter Rebecca has spent at least 8 hours on the phone this week trying to just get authorization for the medication. Finally due to her fierce determination and strong advocacy we were able to obtain both meds yesterday.

Another positive is that we have been connected with a place called Compassionate Care ALS out of Falmouth in Eastern Mass. When we sent a web request for information, the director contacted us within hours and we spoke to him very soon after, which provided some much needed help and perspective. Not only that, he zoomed in to assist Alisa with telling her kids. The place seems unique and really great and they provide a range of services, and have a close working relationship with the Healy Center (and he was yet another person that contacted Merit prior to our appointment).

I have heard from you all your offers of support, and they mean more than anything. That is one thing that consistently gets the tears flowing for both of us. Alisa feels it and is truly appreciative. There will be plenty of opportunities for support to be provided, and we are trying to figure out an infrastructure to manage it.

A lot has happened since this, and I am not going to attempt to document it all as I said. But Alisa has shied away from putting down some of the more difficult aspects of what we have been going through as a way to shield her daughter from pain.

One of my first images/metaphors that came to mind once I learned what we were in for (affects everyone differently, different timelines for everyone, no predicting timeline) was that I felt we were moving down a dark passage with a monster chasing us, never knowing how fast it was going to chase us, or what lay ahead, only knowing that it would eventually catch us and force us against the wall of death.

The other thing that occurred to me is that having ALS is essentially like torture. You are signed up against your will for a process that will slowly and inexorably take everything in your life away from you, other than your most devoted family and friends. Your body will slowly but surely betray you, you will lose the ability to walk, talk, eat and care for yourself. That is the summary, but the whole of the losses is simply incalculable. And you know that it only ends one way. One of the worst things about it that I did not know about is something called fasciculations. These are the twitches that the muscles make as the signals from the nerves become scrambled and start to die. So even if you can have moments where you possibly, just possibly forget for a brief second that you have this horrific disease, here come the muscle twitches to remind you that this disease never stops its horrific progression.

I have a friend Ron, who lost a friend to ALS, and this friend apparently documented his decline on a blog or website. I couldn't bring myself to read it shortly after diagnosis, but perhaps I'll go to it soon, now close to 10 months out.

I'm going to publish this and try to keep things moving, but I am notoriously bad at being consistent with publishing, partially because I don't think about it, and partially because I end up writing too much when I do.

I want to be clear that the support we have received from friends and family has been amazing and heartwarming. Can't imagine being without it, and I have heard from other caregivers about their feelings of isolation.

OK push publish button.