For so many AMN and ALD patients, their disease symptoms are directly impacted when illness strikes. Adrenal insufficiencies like Addison’s Disease and Hypothyroidism often accompany AMN/ALD diagnoses, which compounds their condition and impacts their ability to fight off infections, regulate their body temperatures, and maintain consciousness (in Mark’s case.)
As a former caregiver and wife to a man with AMN, I learned all kinds of fun-to-say scientific terms, conditions, and diagnoses and how those all impacted AMN/ALD. Sometimes it was very interesting and fun reading material, but at the same time, do I really need such a robust understanding of the urethra?! 😐 I mean, I don’t intend to moonlight as a Urologist…but anyway.
I observed enough of Mark’s illnesses to recognize – and predict – when things were about to go awry. His temperature would be normal, but his skin would be slightly reddened and he’d be mildly hypotensive. (I can take blood pressure now…that’s a plus.) The spasticity in his legs would increase while flexibility decreased…etc. But the confusion…that was always the key, especially if his temperature was normal.
March 5, 2019…Visiting with Mark today! He feels good (he’s at a rehab hospital to regain some strength back.) There is no timeline on his return home (or if he’ll be able to anytime soon.) We were trying to play the Connect 4 game, which was difficult for him to play. So we were tried other things, and he was really struggling. He has no fever, doesn’t appear to be tired, but his cognitive impairments are increasing. I’m not sure if he can even see anything much less commit/process a task. Again, this is what Cerebral #Adrenomyeloneuropathy looks like. It is our new normal, and boy is it rough. I wouldn’t wish cognitive impairments on anyone. For now, he remembers us, but I dread what it will look like in the coming months.
Nine times in Mark’s last year of life, he had Urosepsis, which is caused by unresolved/worsening Urinary Tract Infections. One of the worst AMN/ALD symptoms is urinary complications. We would encourage drinking water all day to help Mark stay hydrated and not give bacteria time to colonize, but there’s only so much water one can stand. And also…sometimes you just need a rum and coke!
When Mark had infections, they would spread quickly and quietly (usually within hours.) Additionally, we were never “sure” if he had an ongoing infection because Addison’s Disease and Hypothyroidism symptoms sometimes mirror warning signs of growing danger – and well, that doesn’t help.
With each infection, more memory loss and cognitive disfunction would emerge, presenting us with new mobility challenges and maneuverability performing small tasks like brushing teeth and holding meal utensils. These occurrences landed Mark in a rehabilitation setting after hospitalizations for several weeks at a time. Talk about boredom for everyone involved. And for Mark, even more frustration he couldn’t express because his brain wouldn’t let him.
In the quote above (taken from Facebook) you’ll note we tried to play Connect Four, but were unsuccessful. So we asked him to do different things to keep his mind and hands busy. Sometimes that worked, but several rounds of infections in the months prior taught us a piece of his brain would never recover, and we’d need to make adjustments or accommodations to account for that. This was the easy part for us, as you can almost always improve processes to complete tasks. For him, though, I am sure he struggled more with his declining independence.
To those who are providing care to Cerebral AMN/ALD patients, I know you embody patience, but even more will be necessary if you’re seeing disease progression. I found changing up tactics and approaches to complete tasks eased my personal frustrations with this relentless disease. New ways and tools to put on shirts, bathroom routines, eating, etc.
Actually, being willing to shift up routines really, REALLY helped. Especially as the disease progresses, because there will always be new baselines. I used to be a very deadline-driven person. Far too reactive, actually. And that’s not a trait you want to employ when caregiving, because emotions can run high! I know not everyone has the ability to shift routines, and adjusting is hard, but if you’re open to the realization that things will (and must) change, you’ll find it easier to prepare for and make those changes when the time comes.
And you will do it together. For now, I see you friends.
Have an experience you’d like to share? Leave a comment below. 🙂