Tag Archives: ALD Alliance

ALD Stinks

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Let’s just say it out loud.

ALD stinks.

Not just in the big, life-altering, soul-stretching ways, but also in the very real, very human, very messy, very smelly, very unglamorous ways.

Yes… I’m talking about poop.

If you love someone with ALD — or live with it yourself — you have a poop story. Actually, you probably have many. Stories that make you cringe. The kind you never imagined would become part of your arsenal of cocktail-party stories.

But last month at the ALD Alliance conference, something amazing happened.

At dinner one night, a few of us started sharing our poop stories. The stories continued the next day around the conference and then when we went for drinks and ax throwing (ALD Alliance knows how to plan a fantastic event;-)).

As we shared our stories, instead of embarrassment… there was laughter. Real, deep, can’t-catch-your-breath laughter. The kind that only happens when you’re with people who get it. No explaining. No apologizing. In fact, we were all kind of trying to one up each other.

Telling these stories is not just about telling these stories. Telling these stories allows us to own them. Allows us to stop hiding and appreciate that there should NOT be shame in battling things we can’t control. Finding community that is there to listen and who understands is a gift. AND if we can laugh together, then it’s more than finding glitter in a pile of shit –- it’s proving that we are stronger than our symptoms.

I won’t share any of Jack’s or my personal stories here, but let’s just say that Jack has left gifts at such remarkable places as The Boboli Gardens in Florence and in the parking lot at SPAC following a wonderful Dead and Co show AND I travel everywhere I go with a roll of toilet paper. My family knows when I say the words, “I need to go”, it doesn’t mean let’s make a stop at the rest area five miles ahead. 

As we were trying to come up with the next topic for ALD Connect’s Structured Mental Health call, I thought, let’s dive in and share some poop stories. It may provide people some great advice and treatments AND I know it will also provide us all with a safe space to share AND to laugh together.

Our friends Ken and Christie of ALD No Limits – who each may or not have some stories themselves – are talking about doing a poop episode on their podcast. Can’t wait to hear that one, but for now we will do it a little more privately. The call will not be taped so ALD folks – think of your best I cant’ believe this actually happened story and come join the fun.

The call In the Bowels of ALD is Thursday, April 16th at 7 pm EST. 

Let’s take the shame out of things we can’t control and let’s turn embarrassment into laughter.

I’ve said it before and I’ll say it again — ALD — shitty disease/great people!!!!!!!!!

Love, Jess

AND I know that many of you non-ALD folks have stories of your own … after all, everyone poops. I think the world would be a little better if we all shared that sometimes our bodies have minds of their own.

It’s not easy bein’ BLUE

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It’s not that easy bein’ green
Having to spend each day
The color of the leaves
When I think it could be nicer
Bein’ red or yellow or gold
Or something much more colorful like that

Kermit the Frog

It’s not easy being BLUE either.

ALD makes a lot of people in our community blue. It’s a disease that effects 1/17,000 people worldwide and causes symptoms including adrenal insufficiency, loss of vision and hearing, learning disabilities, seizures, loss of speech, fatigue, bladder and bowel issues, loss of mobility, and if not treated early (** and without a certain amount of luck) can lead to death.

While there’s so much to make us all blue, there is reason for our community to celebrate.  ALD is a disease that has made some HUGE strides in the last few decades – improved treatments, new treatments, and newborn screening. The momentum is has started and we can’t let it slow down.

A year ago, my friend – and ALD warrior, Janis Sherwood, – had a magical idea. We always discuss possible ways of how the ALD community can better spread the word about our disease. Blue being the color connected to leukodystrophy awareness, Janis’s plan was — ALD Makes Me Blue. She wanted to turn our ALD blues into ALD BLUE — Dye our hair BLUE, paint our nails BLUE, wear BLUE, paint our whole darn bodies BLUE. She wanted our community to turn BLUE and then pass it on, like a dare. 

Janis didn’t stop there with her plan. She wanted to have a way for the public to learn more about ALD and even make a small (or HUGE) donation to one of the many ALD organizations.

ALD organizations connected. A website was created. ALDMMB got itself onto social media. Some sore of fancy filter was put on Instagram: https://www.instagram.com/ar/538958721328767/

Today is the day!!!

February is Rare Disease Month and it’s time to turn the world BLUE!! Our family is going to start our month of BLUE and we want you – our duct tape – to do the same. Make yourself BLUE and don’t forget to take a photo and post it on Facebook and/or Instagram and TAG friends!!! 

Please take a peek at the site, learn more about ALD, be BLUE, and make a donation.

CLICK HERE — ALD MAKES ME BLUE

GO BLUE!!!

Love, Jess