Notes From PALS

This is an important blog post, one which I will begin with a plea for forgiveness from all those who may find themselves quoted here without attribution. It is intentional that I leave names out. We have a story to be told, but it is not the story of one of us, it is the story of all of us. I am sorry if you disagree or if I have broken any presumed code of silence. As far as I know, PALS don't do omertà, at least not all that well from what I've seen so far. It is also a long entry, written not by my hand, but by the hands of many.

I am not the only person on the planet with ALS; there's lots of us. We talk to each other, mostly via Facebook but many in person. We visit one another, members of a special club which one of my friends described as the kind of club "people are dying to get out of." We ask about symptoms, share information about treatments, distribute news about research and new drug developments, topics ranging from mundane to meaningful, silly to sublime, rude to reflective. Often, most often, we simply commiserate, supporting one another through one of the most difficult voyages anyone can imagine.

Those postings, those thoughts and feelings from other PALS, strike me on a regular basis, hitting hard, forcing me to recognize that what I deal with is common to us all, a shared experience. I wanted to share some of that experience with you, so I grabbed the first six postings I could find on an ALS group, just so you could see. Some of these postings speak for themselves, with others I will add a note or two. Each of them is a story on it's own, a story not just for me but for hundreds, even thousands, of PALS.

"I am suffering with dry scalp. Any body else? What can be done for this?" There were many responses to this post, mostly focused on what to do. The most powerful was "Wow I was wondering about all that. Could it be all the drugs?" You see, while ALS itself is essentially untreatable, there are any number of other conditions that come along with losing your muscles, things like muscle cramps, dietary insufficiency, respiratory insufficiency, DVT, wheelchair rash, swelling, and on and on. So some of us get lots of drugs, and these drugs all have side effects.

"For those of you who believe in the power of prayer please join me in unity of faith for the healing of our good friend (name withheld). He has been hospitalized since Saturday critically ill with bilateral pneumonia. Nothing is impossible with God." We see this every day, not just for one of us but often for more. This disease ends in a slow, creeping hospital bed bound death. That is just our reality.

"Welcome (name withheld) to the group. His family has FALS and he has the SOD1 gene. He hasn’t been totally diagnosed yet but knows what’s coming down. I will say it again. I hate FALS." In response, "Thank you, (name withheld). I have been through this a few times with relatives the last 30 years. Unfortunately, I know exactly what to expect." The course of disease for PALS, the prognosis, is entirely predictable. How much worse must it be to know that you are more likely to get it thanks to a family gene?

Regarding one of the PALS in one of our groups... "He has purposely gone off food and water has he not?" And in response..."Yes.  I've seen other people take the same path. All I really know is that he is at hospice. I spent a week with my father-in-law at the hospital and then hospice. I talked to the nurses, they really know what they're doing and they are compassionate. It's amazing how well they are able to check into a patient's status. I do not know what the various procedures are for ALS patient end game. "

"I feel like I'm going downhill very quickly. Upper body all weakening, breathing very shallow . Eating well in small sessions but decreased urine again. It seems I'm drinking fluids but apparently not enough. Was in ED last week for IV fluids and sodium was low. That's been better. I signed up for hospice this week. Have waffled on feeding tube, but had decided early on to let things take their course. I hope my decision doesn't lead to a lot of distress as I let things go. I'm probably over reacting and will be on this earth a lot longer. Good or bad." As PALS we face heart-wrenching decisions like this every day, decisions not only about how we live, but how we die.

And finally, this... "If you are newly diagnosed with ALS please as hard as it is try not to pay attention to the death. Internet is a great tool to educate yourself. However you can be mislead. Just know there is great support. Try not to focus on the negative and live life strong. Never give up!"

ALS is a terrible disease. With its terror it brings out bravery, humour, pathos, fear, love, hate, anger and any other emotion you could care to name. It makes the small seem large and the large seem small. It forces us to focus on living, not on dying. We will live for years, some of us. We will live out our days, some of us. We will all die, in only a moment. The dying is easy; the living is hard.