Transcript

How Do You Decide to use an Assistive Device?

Amy Gurowitz:
I've been thinking a lot lately about the decision to use an assitive device. Its so hard, and I know you both know this, when you have MS because what you're starting with at the beginning of the day is not necessarily what you end up with. Symptoms sort of wash over you, and you're experiencing different things at different times. So, it makes it hard to step back and really have a clear look at things. What's your experience with choosing to use an assitive device?

Lisa Emerich:
Amy, the first time I used an assistive device it wasn't a cane - it was a strap that I hooked up onto my french horn so that I could find a way to hold the weight of the horn not with my arm, but using the strap. It looked kind of funny, but it worked, and it helped me get through a period of time where I needed help doing what I wanted to do, which was to continue playing french horn.

Marc Stecker:
I have progressive disease, so I've been having to deal with a string of assitive devices, ever since about two years into my diagnosis. First up was an ankle brace, which really helped my foot drop and was invisible to the outside world. About a year after needing the ankle brace it became apparent that I really need a cane, because I was having a lot of trouble getting around. By the time I needed the wheelchair, my world had really shrunk to the size of my apartment. Once I had it and really took it out for a ride and realized that all of a sudden my world was a world again it was a real godsend.

Lisa:
The first time I used a cane it wasn't my own cane - I borrowed it from my boyfriends mother. My boyfriend and I were going to a concert at the Kennedy Center, and I was having trouble with weakness in the legs and walking distances. I since have bought my own cane, and I was very thankful to have it this last spring when I made a trip to Switzerland and it helped me get through a longer day and I could enjoy it more.

Amy:
I was commuting to New York City and found that my foot drop was really getting in the way of my effective commuting and I found myself kissing the pavement a little more often than one might prefer. And I guess after I came home with my tenth skinned knee, my husband suggested that I consider a walking stick, which is what I prefer to call it. I tightened up and though, oh gosh, this isn't who I am, I cant be using this. I cant face the world being someone who uses a walking stick. And so when I became dizzy, which was one of my main symptoms, a couple years later, it became increasingly evident that this was something I needed to consider.

Marc:
Its incredible how alike we are in our emotions and our feelings about using assistive devices even though we have different flavors of MS and different levels of disability. One thing that the wheelchair has done for me is allow me to pursue photography again, which I was not able to do for quite a long time after my diagnosis because my right side became paralyzed and I was unable to hold a camera to my eye. Now that I have a wheelchair, I mount the camera to the arm of my wheelchair and the camera has a flip out viewscreen so I can look down and see what I'm framing and operate the camera that way. And that has really been important for me because photography is a passion, and that has allowed me to pursue that again which I had really really been missing.

Lisa:
It sounds like what we've been talking about is independence, and whether its finding independence and maintaining mobility by using a walking stick or a cane, or getting wheels and being able to get around the city, like you do Marc. You know, its really fun hearing your stories, and I'm glad that we've been able to have this time to talk about these important issues. I think its good for us, its good for others, and I hope that the discussion continues online and maybe even offline in our communities.

Marc:
One thing that I did realize through the use of all of these assistive devices is that you cant let the assistive device define you, you have to define the device. In other words, you're not a cane - the cane is part of you. And I'm not a guy in a wheelchair, I'm a guy 'comma' in a wheelchair. The person comes first.

Amy:
Marc, Lisa, thank you so much for sharing your stories with me. They are truly inspiring, and they give me an opportunity to look at my use of assistive devices differently, and I really appreciate that. Thanks so much for joining.