My ALS Adventure – May 2019


May 15 – to my family

May 10 – The antibiotics and probiotics I’ve been taking for the last couple of weeks to get rid of c. diff. kept my guts in turmoil. I’ve also been much more tired. I’ll know in a few days if that was coincidence and if the bug is gone at last. 

Meanwhile, I also got an eye infection and I’m taking antibiotic eye drops. It made reading for more than a short time impractical so I’ve been napping as the hospice nurse recommended and watching movies. My eye is getting better and I’ve been able to read today.

Movies leave me feeling unproductive but reading does not. More interesting is why being unproductive feels negative. I am driven to be busy, doing work. My parents’ example I assume. 

Now my lunch has had long enough to settle so I’ll go for a nap. 

May 11 – I’ve been avoiding saying “I hope” my situation will improve after I stop taking meds. Hoping would make my happiness dependent on circumstances, which, if they did not confirm to my hope, would make me disappointed. 

For a little while I let myself think “it would be nice if” but that’s creating the same problem. I remember the monk who made a three year solitary retreat and when asked how it went said – “I wasted the entire time in hopes and fears”.

I call this “My ALS Adventure” because adventures present situations I could not have expected and I can learn from them. This is a rich learning experience. 

Maybe a life spent learning was what I meant when as a teenager I decided wisdom was my life goal. 

What I’ve learned recently is that equanimity is not enough. I don’t worry about the future. I accept my changing situation. But persistent extreme tiredness dulls my awareness. 

Today, though, my guts are not in such turmoil, Dan, Megan, Sarah and Eleanor are coming and it is sunny. 

May 12 – sleep is restorative. Tired as I am these days I sometimes lose focus on the present and look forward to my next sleep.  

But a new thing has been happening recently. It now takes me a couple of hours to recover from a night of sleep. Felicity helped me adjust the BIPAP head band so all the air definitely blows up my nose and my blood oxygen saturation remains ok. It’s just an aspect of the latest stage.  

May 14 – I watched the film about Stephen Hawking last night. It implies will power kept him alive so long with ALS. As Felicity said, if will power could do it, I’d be healthy. His brain must have been different in at least one more way in addition to high intellect. 

The actor did a good job portraying his loss of function but because I’ve experienced it, I saw so much detail that was wrong. He couldn’t escape from the fact that his muscles really all worked. 

My overall impression is that Hawking and his wife didn’t handle it well. She kept him alive longer than she could deal with and he remained selfish. They behaved according to concepts of how English people should deal with adversity, not as humans who love each other. She left him in the end for a kind and healthy man. 

I think the c diff is gone but my guts have not entirely stabilized. The chorus of “Jumping Jack Flash” keeps sounding in my head — “it’s a gas, gas, gas”.  

My increased weakness did not result from the c diff. ALS is progressing at a steady rate of decline punctuated by rapid spells.

What I have at last recognized is that although I am not worrying about dying or feeling angry about my condition, I do have to keep adjusting. What I could still do just yesterday I can no longer do today. I must keep figuring out the practical implications of these changes. 

I think the process is a bit different for Felicity and me. She experiences more grief as well as thinking about the practical challenges. I also grieve, of course, but I have more sensory data to explore, which is interesting. 

May 16 – when I’m walking and my legs tremble it’s good to notice that to avoid falling. What’s not helpful is to replay emotional responses to that change, to make a judgment about what is simply a fact. 

I’m working to notice where the positive response to sensations ends and the story telling begins. 

May 16 – to my family

I thought you’d like to know that I feel much better today. I have no idea why. I just mowed the entire area around the pond. Quite a lot of the grass was three feet high so I went slowly. It took an hour and a half. I feel good  I will try to nap now because I’ve been doing that every afternoon.

May 22 – to my family

My guts never felt completely better after the 14 days of Vancomycin so we went back to my terrific family doctor today. 

She says it’s quite common for clostridium difficile to survive the first campaign so I’m now on a month long regime of Vancomycin, initially four times a day then less frequent. If that doesn’t work there is at least one more step we can take. 

I’m to take the probiotics forever more, which is unappealing because they are pretty disruptive in their own right. 

So I suggest you avoid getting c diff!

The good news is the obvious truth that didn’t occur to me — c diff is preventing me from getting enough nutrition from my food. That’s why I’m so extra exhausted. 

So it’s very possible I’ll have more energy again.  That would be good — I want to do more mowing.  I’d like to finish the floor in the summer kitchen, too, but eradicating c diff won’t make that possible.  Mowing would be blessing enough. 

Chronic exhaustion takes a toll. I’m still having no trouble maintaining equanimity and I’m not depressed. I feel happy when there’s a stimulus. But most of the time I feel neither happy nor unhappy, just very, very tired. 

Paradoxically, I feel more tired when I wake up after a night’s sleep or an afternoon nap. That is presumably because even with the BIPAP I breathe more shallowly when sleeping.

Another obvious thing I’ve realized is how lucky I am that I was already 73 when my ALS started and I’d been retired for 14 years. I’d had an adventurous business career, enjoyed most of it and learned a lot. I’d had an adventurous retirement in which I also learned much that is important. And most importantly, I’ve had an amazing partner for more than half a century and we raised children who I could not love and admire more. 

Who wouldn’t feel content after all that!  It is so different for those stricken with ALS or anything similar when they are younger. 

May 31 – to my family

I’m still taking antibiotics and my stomach bug and eye infection continue to get better. It’s taking a long time because ALS weakens the body’s ability to recover. 

I can get from my chair and bed to the toilet but I can’t walk much further so we’ve been thinking about a wheelchair. It needs to be powered because I won’t be able to propel myself when my arms are only a little weaker, and Felicity couldn’t push me over the lawn to the car. 

How to transport it?  Before ALS I could easily have adapted the van. Not now. So we’ll have to buy a customized vehicle. Or could we just rent one?  How often will I leave our house and why?  To doctors? The hospice doctor will come here. There’s no need to go back to John’s Hopkins because they can’t do anything for me. 

It would be nice to be able to go outside but many wheelchairs would be unable to handle the somewhat uneven terrain. It would be nice to go places with Felicity. We haven’t done that recently. 

Good things about ALS are that there is no pain, no cognitive loss and it progresses slowly enough that one can adapt. But the exhaustion that comes with it is a severe handicap and there is less and less one can do over time anyway. 

It’s a great opportunity to recognize the true nature of reality but one’s energy to make that possible fades. 

May 31 – great news!  Felicity’s huge amount of research has paid off. The ALS Society will lend us a power wheelchair that will fit through our back door and which can get around the yard. It will cost us nothing and be here in two weeks. 

She got lots of conflicting advice along the way. Medicare would cover the cost but the approval process could take six months. Medicare would not help while I can still walk at all. The only chairs that would work in the yard are not covered by Medicare and cost $30,000 or more. Medicare will not cover a wheelchair at all now I’m registered with Hospice. And so on and so on.  We still don’t know what’s possible with Medicare but it no longer matters. 

I’m so blessed to have a loving partner who is a great problem solver 🙂

3 comments on “My ALS Adventure – May 2019

  1. Martin –

    Your posts are a gift to us all. Thank You!

    Your latest prompted this memory:

    “In his teachings on suffering, the Buddha made clear that some kind of humiliation awaits us all. This is the truth he felt could be apprehended by those with ‘litle dust in their eyes’. No matter what we do, he taught, we cannot sustain our illusion of self-sufficiency. We are all subject to decay, old age, death, to disappointment, loss, and disease. We are all engaged in a futile struggle to maintain ourselves in our own image. The crisis in our lives inevitably reveal how impossible our attempts to control our destines really are”

    Dr. Mark Epstein
    Thoughts without a Thinker

  2. Martin, you are truly telling your ALS story and we are so lucky to hear it from you! Glad that the wheelchair is coming soon and that you don’t seem to be caught in the fractured healthcare system. Hurray!

    Sending much love and hope to see you over the summer.

  3. Thank you for keeping us up to date with your journey. You are inspiring to me and, I suspect, to many.

    Best,
    Richard

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