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Mobility Aids with Multiple Sclerosis: my story of confusing people as a 40 year old with PPMS

@progressivepam
Mobility Aids with Multiple Sclerosis: my story of confusing people as a 40 year old with PPMS

I must confuse a lot of people.

I'm a 40-something year old lady that's (hopefully) well dressed, and yet I use an arsenal of equipment to get around: forearm crutches,  rollator, scooters and power chair. Here's what I imagine people must be asking themselves:

Why is she parking in a disabled spot? Blasting her punk rock from her car, is she supposed to be parking there?

Why would a 40ish year old be struggling to walk with a rollator?

Why is she using a scooter? Is there something wrong with her legs or is she just lazy? (Someone did recently ask me this!)

People are naturally curious. And perhaps some are simply checking out the mobility aids that I'm using. I try to find the aids that are beautiful and look less medical. I think the brand Cool Crutches offers a great selection of colorful crutches (I have a rainbow one and a star one!), and Rollz has very well designed rollators.  I do get a lot of questions from people especially on my Rollz that converts to a transport chair. There's no reason that mobility aids have to be ugly, there's definitely a market out there of people who want nicer looking things. It's also very frustrating that they usually come with a higher price tag.

It's possible that some are questioning my disability, but it's not my job to ease their confusion or satisfy their curiosity. I am perfectly okay with people being a source of confusion. Heck, I'm also confused as to why I'm like this.  But I refuse to let the possibility of unwelcomed attention to keep me from enjoying my life.

Awareness about multiple sclerosis is important, awareness of how many people rely on mobility aids and accessibility is equally important to me. By being out in the community and using my gear to get around without embarrassment I hope may encourage others to do the same.  By using mobility aids in public I hope helps to normalize it to others and let them know we are out there and want to participate in everyday things.  I feel in a small way I'm being an advocate for people that need to see others like them living their lives, and also the importance of accessibility to others who are able bodied.  And it lets others know that disabled people exist and want to do all the things, even the ones blasting punk rock.

I must confuse a lot of people, and that's totally okay with me.

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About the author

@progressivepam

Pam was diagnosed with primary progressive MS in 2020 at age 40.  She lives in the SF Bay Area with her family, and enjoys sailing with Sail MS (sailing for people with MS), and the Bay Area Association of Disabled Sailors.