Show Notes:
Ally doesn’t just talk about living with multiple disabilities; she shows you the ingenious tools and mindset shifts that make it possible to live a full life.

Living with multiple disabilities presents unique challenges, but it doesn’t mean that life is limited. In this inspiring and practical episode of Water Prairie Chronicles, Tonya sits down with Ally Pack-Adair to explore how she expertly navigates life with cortical visual impairment (CVI), mitochondrial disease, autism, ADHD, and chronic illnesses.

Ally shares her invaluable insights and the ingenious tools and strategies she uses daily to maintain her independence and well-being. From adaptive technology for everyday tasks and sensory regulation tools to the power of music therapy and creative outlets, you’ll discover a wealth of practical advice and a truly empowering perspective.

Learn about:

• Managing complex healthcare needs and daily living activities.
• The role of home health support and self-management tools like medical planners and bullet journals.
• Exploring the world of adaptive technology for vision, motor skills, and sensory needs.
• Ally’s favorite fidget tools and sensory strategies for managing stress and sensory sensitivities.
• Adapting hobbies like arts and crafts and LEGO building for greater accessibility.
• The incredible benefits of music therapy for mental well-being.
• Coping mechanisms for fatigue and the fluctuating intensity of chronic conditions.

This conversation is a must-watch for individuals with disabilities, their families, their caregivers, and anyone seeking a deeper understanding of resilience and resourceful living.

Resources Mentioned in this Episode:

• EaZy Hold Grips: https://eazyhold.com/
• Abilities Expo: https://www.abilities.com/
• The Melodic Caring Project: https://melodiccaring.org/

#MultipleDisabilities #AdaptiveLiving #ChronicIllness

Connect with Ally:

• 👉Instagram: @advocatingwithally

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👉 Support our podcast and help us share more incredible stories by making a donation at Buy Me A Coffee. Your contribution makes a significant impact in bringing these stories to light. Thank you for your support!

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Music Used:

“LazyDay” by Audionautix is licensed under a Creative Commons Attribution 4.0 license. https://creativecommons.org/licenses/by/4.0/

Artist: http://audionautix.com/

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Episode #124: What’s it Like Living with Multiple Disabilities?

Ally doesn’t just talk about living with multiple disabilities; she shows you the ingenious tools and mindset shifts that make it possible to live a full life.

(Recorded January 27, 2025)

Full Transcript of Interview:

Tonya: What if living with multiple disabilities wasn’t about limitations, but about ingenious solutions?

Welcome to Water Prairie, a podcast for parents of children with disabilities. I’m your host, Tonya Wallam, and I’m glad you’re here.

In this episode, Ally Pack-Adair returns to share her strategies for not just managing, but truly thriving while navigating life with multiple disabilities.

Ally, Welcome back to Water Prairie.

Ally: Thank you.

So listeners, if you’ve been with us the last couple of weeks, you’ve already met Ally. A couple of weeks ago, we talked about CVI and how that can, can impact your life.

Last week we talked about Ally’s role as an ambassador with, with MDA. Today we’re going to jump into how you can live well with multiple disabilities, and Ally is a pro at this. So she’s gonna give us all of her expert tips today.

And, um, so let, let’s just jump into it. Ally, how do you manage the complexities of living with multiple disabilities?

I have a cortical visual impairment, a type of mitochondrial disease, autism, ADHD, and a lot of chronic illnesses. The list is pretty long. Managing my health day to day can be. Well, different day to day.

I have a home health nurse that works roughly 40 hours a week here. She’s here four to five days a week usually. And for me, she takes care of, um, what’s known as ADLs, activities of daily living, and. Just any of my healthcare needs. I have a feeding tube and a colostomy. She mainly helps me with my feeding tube. I can take care of the colostomy myself.

She’ll help me with my meals. Any of the oral meals that I’m able to eat and my medications, but for the things that I’m able to do, I have a medical planner where I keep track of my doctor’s appointments. Any symptoms I’m tracking. Phone numbers for my specialists and DME companies,

um, notes for doctors, all of those sorts of things. I have a bullet journal separately where I track more symptoms. I use different strategies outside of medications to take care of myself, some of which my home health nurse assists with, such as microwaveable stuffed animals from the Warmies brand. I have one right here.

This is my dinosaur. It’s lavender scented. I like aromatherapy with my essential oil diffuser. Sometimes that helps with nausea and migraines.

I have a weighted lap pad that I’ll put over my legs at night. My home health nurse or my mom actually does it. Because sometimes it’s too heavy for me to position correctly, but that helps with muscle pain and dystonia.

Ice packs are something else I use, but then I also like. I rely on adaptive technology a lot. I think that’s something that’s important for people with multiple disabilities, depending on the disability you have. And that relates to my visual impairments, my neuromuscular disease and autism. There’s different adaptive technology for all of that. And I can elaborate on that more if you would like.

Why don’t you share a few of the things that you’re using?

So specific to my neuromuscular disease, the mitochondrial disease, I have recently bought Adaptive scissors. I can grab them if you would like me to show them to you. They’re right here.

Because my mitochondrial disease is progressive. I’ve been having a hard time lately using regular scissors, and I enjoy arts and crafts, so I’ve been adapting arts and crafts as my hobbies. I can still do it, and these scissors are something I can hold better and still do something I enjoy doing.

Um. I, I have adaptive nail clippers because regular sized ones, I don’t have the fine motor skills to use them.

Adaptive silverware, which I haven’t needed yet. I’ve really bought it knowing that I’ll need it in the future.

Grips on my toothbrush, it’s from my brand called Easy Hold Grips. I highly recommend those for anyone without fine motor, without fully developed fine motor or gross motor skills. It’s one of my favorite tools. There’s so many things like that on my phone. Um, instead of a pop socket, I have this phone loop.

It’s a mainstream product. Um, so it doesn’t have what those people call the disability tax, and you can just hold it like this. It, I don’t drop my phone as easily when I’m holding it like that. I have the essential oil diffuser and air purifier in my room are Alexa enabled, so I can use them with my Amazon Echo as well as the tower fan in my room.

They’re all things that have helped me, um, neuromuscular disease wise. Being autistic. I have, fidget toys. A lot of people call them fidget tools, so they aren’t seen as toys. Around my room pretty much all over the place. They’re in my nightstand on my floor, in a cabinet over there on the kitchen table, on the coffee table, pretty much anywhere.

What is your favorite fidget?

Um, well I don’t have a favorite right here, but this one’s helpful. It’s like one of these mesh marble ones. I keep them in my feeding tube backpack, actually for going out and about. There’s one right here, and to pop it in there because that backpack goes pretty much everywhere with me.

I have Bluetooth noise canceling headphones and an Alexa enabled light bulb in my fan, which that’s really neuromuscular disease specific and autism specific. Um, so I can control the lighting for my sensory needs.

It is really just adapting my environment to make it the best it can be for me.

Sounds like you’ve, you’ve really been able to do some research and find some good tools.

Yes.

You have a few in here that I’ve not seen before. So, um, on your silverware, is it a weighted silverware that you’re using? How has that been adapted?

It’s not. It’s 3D printed. So it’s regular silverware and it has 3D printed grip type things that you stick your hands through. I don’t, I don’t know what brand it is. It’s a small business. I bought it from the Abilities Expo, which is a resource in itself. Honestly, if it’s great for people with multiple disabilities to visit, um.

People with mobility disabilities specifically.

And they travel around the country.

Yes. If anyone hasn’t heard of it, it’s just a big expo for people with disabilities to go to. I was able to visit them in September and receive all of these free resources. I bought that Adaptive Silverware kit, which. I also came with an adaptive key opener, stylus, and something else that I don’t remember and climb an adaptive, um, rock climbing wall, which is something I’ve never been able to do. It was such a great experience.

So did they do it with an extra harness where they’re lifting you or like helping you with the strength of it?

No. It’s a seat. So you sit in a seat on the side of a rock climbing wall and you can pull yourself up with a lever.

Oh, cool.

So you’re along the side of a rock climbing wall, but like you have the.

If there’s like a bar you can pull up on for people with less hand strength or there’s just like one you can pull on, or if you can’t sit in that seat, they can strap people’s wheelchairs in. They have harnesses for amputees. Or then they just let you climb. If you’re able to climb yourself.

As you’re dealing with these different disabilities, ’cause they’re gonna come and go in intensity, I would assume some, some of them are gonna be consistent day to day and some of them are gonna be changing on you. How do you keep your physical and mental wellbeing strong?

With my neuromuscular disease, there’s really no treatments or cures. There’s only preventative things.

I’ve been in therapy, um, in physical therapy on and off, which is something I need to start up again, but physical therapy is something that’s helped me just to retain my muscle strength so I don’t lose any of it.

What about your, your mental wellbeing?

Music therapy is something that’s helped me.

I am on palliative care. I live in Arizona, and so here palliative care is under the same organization as hospice. And so hospice provides free in home music therapy, but I also do, um, virtual music therapy through a nonprofit called the Melodic Caring Project. The Melodic Caring Project is a free organization providing music therapy to like children, teens and young adults, mostly with chronic or life-threatening illnesses.

Cancer. Um, on once a week there’s a group music therapy sessions. It’s one of my favorite things. I really love them. We do music listening, song analysis, art to music activities, private concerts. Um, sometimes we’ll just talk to each other. We, we have one-on-one music therapy sessions, live stream concerts.

And, um, song requests, and that’s pretty much what it is, but it’s one of the best things.

Listeners, we’ll add the link to any of these resources that she’s listing, that we have access to so that you can, can look into that if that’s something that would help you or your child too.

Yeah, I absolutely love them.

In our day in a life segment this time, what are some of the strategies that you use to cope with stress or fatigue?

Well, I use music a lot to cope with stress, being autistic, fidget toys and the likes. I do enjoy arts and crafts. Coloring is a big one for me.

I like adult coloring books, which is ironic because with CVI I struggle with it and it takes me a long time to complete one page. So I’ll often have to come back to the same page, but I find it relaxing. I like to listen to audio books at the same time as doing coloring books.

Do you use, um, any type of magnification when you’re doing the adult coloring books?

I don’t, but I probably should.

Have you ever tried any of the online coloring apps?

I have. It just doesn’t feel the same.

I know. It’s, it’s you, you don’t get the same, the same feel of it. You’re right.

I’m a big fan of Legos. I really like all of the hands-on stuff. Now, Legos aren’t the most accessible thing, but I’ll separate.

I’ll have to do one bag at a time, which I don’t understand why people dump out all the bags at once, um, and then separate them by color and by piece before even diving in, and that’s the only way I’ve been able to do it. It takes me longer than the average person, but I still find it fun and relaxing.

You were talking about fidget toys earlier, uh, or fidget tools. Do you like the ones that are more like a metal type weight or do you like a different texture?

So I have an entire, I have two carts full of them. Two of the rolling three-tiered carts from Michael’s are filled with them, and that’s been the best way I’ve found to organize them so far.

I am not super picky. There’s certainly ones I don’t like. I think the types made out of plastic are my favorite. Tangle toys, if you’ve ever heard of those seem to be my favorite ones.

And for arts and crafts. Now, you mentioned the adult coloring books. What other types of crafts? ’cause you have scissors, so you’re not using that on a coloring book what type is your favorite?

I like making collages out of magazines or there’s all these different books. I think they’re called Cut Up and collage books actually. And they have pictures in them. You simply cut the pictures out and you can make collages out of them. It’s super fun. I do enjoy embroidery.

It’s harder for me. Um, it takes me a very long time. The patterns, like if you’ve ever opened an embroidery kit, they come with paper patterns and I look at those with magnification on my phone. And I have to have someone else thread the needle for me, but then the rest of it I do myself, and it just takes me longer than the average person.

So holding the needle’s not a problem for you then?

No.

Before we go, what’s the best way that our parents can get in touch with you if they have a question?

You can contact me on Instagram at advocating with Ally.

Thank you for joining me again, I appreciate you bringing three weeks worth of high value for us.

Thank you so much for having me.

I’ve enjoyed my conversations with Ally over the last few episodes and hope you have as well. If you found her insights valuable, please subscribe so you don’t miss out on future Water Prairie posts. Next week we’ll be meeting with the author of the book, Smile and Succeed for Teens, so be sure to join us then for tips on how to help your child prepare for the future.