Life With SMA: Mobility, Caregivers, Intimacy & Independence

Описание: This video answers the questions people ask us all the time—but don’t always know how to ask.

We’re sharing what life with Spinal Muscular Atrophy (SMA) actually looks like for us as a couple: mobility, caregivers, independence, intimacy, daily routines, and everything in between. This isn’t a medical explainer or an inspirational story. It’s our real life, explained honestly.

We talk about what Conor’s mobility is like, how caregiving actually works in our home, the ways we maintain independence, how intimacy fits into a life with disability, and how communication makes all of it possible.

In this video, we answer questions like:

What Conor’s mobility looks like day to day
What are some of our shared hobbies and interests
Do you have an emergency planning and evacuation
Do you have pets or service animals
How does Conor maintain autonomy/independence
What does intimacy look like for us
What was growing up with SMA like
What does a typical day actually look like

If you’re living with SMA, in an inter-abled relationship, or just trying to understand life with disability beyond assumptions, we hope this video helps.

💬 What’s one question you’ve always been curious about but weren’t sure how to ask?

Check out our related video where we talk about our expectations when it came to intimacy and the reality of being intimate when you are disabled:    • Living Together as an Interabled Couple | ...  

00:36 – What is your mobility like?
01:02 – What daily care tasks do you need help with?
03:30 – What hobbies or interests do we have in common?
04:52 – What does traveling look like for us?
09:07 – What does cooking together look like?
10:56 – What does nighttime care look like?
11:59 – How do mornings usually work?
12:58 – How do we plan for emergencies or safety issues?
16:36 - Do you have service animals or pets?
18:04 – How does Conor exercise automony and independence in his daily life?
20:32 – What do people misunderstand most about caregiving?
23:02 - What does intimacy look like in your relationship?
24:00 – What advice would you give other interabled couples?
25:32 - What was it like growing up with SMA?
27:55 - What is your day-to-day routine like together?

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