a little ALD

MAPLEWOODSTOCK 2022!!! Thank you Jill for the photo — and for being you!!!!

This morning I asked Dan a question – “Did you find walking around this weekend challenging?”

“What do you mean?”

That was not the answer I’d hoped for. We spend this weekend enjoying one of our community’s favorite annual-except-when-there-is-a-global-pandemic events – MAPLEWOODSTOCK. It’s been three years since we’ve been able to attend this weekend full of live music and food and vendors. It was a picture-perfect weekend weather-wize and wonderful to see so many old friends and neighbors, but the whole time I was there I felt like I needed to be aware — aware of where the closest porta potties were and how I was going to manage getting around.

To me, crowds = confusion, and crowds with blankets and coolers and lawn chairs is a full-blown obstacle course. Add a bladder that is always in need of attention, I was up and down from my lawn chair countless times and then needed to wandered through the maze of frolicking folks trying to watch my feet, not bump into anyone or trip over anything.

People were sweet. Assuming I was just another middle-aged lady who had enjoyed one to many High Noons, they helped to guide me while saying things like, “Don’t forget to drink a little water”. But I wasn’t drunk. I wasn’t high. I was just dealing with a little ALD.

When Jack was first diagnosed with ALD, it was determined that he got the gene from me. I was told that unless I was planning to have more children, I wouldn’t need to worry much about my health — ALD is an x-linked disease — I was “just a carrier”. As the years moved forward and I learned more about ALD (and the medical community caught up to reality), it became clear that it is more complicated for women than “just being a carrier”. Women with ALD often do develop symptoms. VERY different than the symptoms associated with the childhood, cerebral phenotype that Jack faced, but symptoms that can affect your life in a variety of ways. Bladder/bowel issues are common for most women with ALD past a certain age and mobility issues are also common. Balance and neuropathy are the culprits.

When asked about my symptoms, I usually answer, “Mild. A few embarrassing bladder stories under my belt and more falls then a typical 52-year-old women, but nothing too significant”.  That is true. My symptoms while at times embarrassing, do not impact my quality of life (much). I try to not focus on the negative or on the what ifs (if Dan is reading this, he’s laughing right now – he may argue about this point). I’ve learned to adapt to my symptoms — I wear flat shoes, keep an eye on my feet when they are moving and always know where the closest bathroom is.

Mostly I don’t worry about my ALD, but this weekend I felt like ALD was ruining my fun.

Jack and I left MAPLEWOODSTOCK early, sharing with our friends that it was better if we left before it got dark, “It’s hard for Jack to maneuver through crowds in the dark”. THAT wasn’t a lie, but there was more to our early departure. I was worried. I was worried that I might get trapped in the maze of coolers and lawn chairs if I couldn’t see exactly where my feet were landing. I was worried that trying to guide Jack out of the chaos in the dark could be more than I could handle. I was worried that I might not get to the porty potty station on time if my bladder gave me one of my “you have exactly three minutes until I will release” moments. 

None of this is the end of the world. I’m not complaining as much as I’m sharing my frustration. AND I’m wondering if anyone else can relate.

Love, Jess

2 thoughts on “a little ALD

  1. Jess, I can TOTALLY relate on all counts. I always have to know where the closest bathroom is, (and accidents happen more than I’d like) I always have to keep eyes on my feet (my husband still doesn’t get why I might miss seeing things around me because I’m watching the ground below me!), and I am hyper aware of how often I look like I’ve had too much to drink while I’m walking around in the middle of the day (or morning for that matter!). You’re right, I tell myself and others it doesn’t impact my life “much”, but we definitely deal with a “little ALD” every day in some way and it can “ruin our fun” or impact our lives more than we like to admit. And like I tell my husband, I never know when legs or feet may decide to just not follow my brain’s directions 😬😊always an adventure for sure!

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