Living with MS: One Family’s Solution to Enjoying Life Events Again
Dave was diagnosed with multiple sclerosis in 1999 and for the first few years, he was able to go about his everyday life without the use of any assistive devices. When his symptoms began to progress in 2005, he went from using a cane to a wheelchair within a span of five years. Wheel:Life chatted with Dave and his wife, Maureen, on the struggles they experienced due to his MS and the solutions they were able to find in order to continue enjoying life events, such as their children’s graduations and weddings.
Tell me about some of the battles you faced while out and about after your multiple sclerosis began progressing.
Maureen: It got to a point where Dave was not able to get his wheelchair into a men’s restroom. We needed family restrooms because I had to help him transfer onto the toilet, but often, we can’t even use those because they only have one grab bar, and Dave needs two — one on either side of his wheelchair so that he can pivot transfer.
Dave: Up until about five years ago, I could still transfer in the ADA compliant restrooms, but my legs became so weak that I couldn’t transfer onto the toilet with a stand transfer, so I had to do the side transfer. Unfortunately, all ADA compliant bathrooms are not set up to be able to do that. I’ve also lost the use of my hands, so I can’t really use the transfer board by myself. We needed a family restroom where Maureen could at least help me if I struggled to do a side transfer, but they’re pretty difficult to find.
How did not being able to use public restrooms affect your social life?
Dave: At the end of the day, our ability to get out was constrained to a two-hour time limit. I could have used Pull-Ups, but I was never confident they would do the job, so I limited myself to about two hours. I wouldn’t get myself into a position where I needed a bathroom. We had to pass on events that were longer than two hours. Then, our son was getting married and our daughter was graduating, so we knew we were going to have events that required me to be away from a bathroom for an extended period of time. That’s when we decided to transfer to a condom catheter to allow me to go to the bathroom without going into a bathroom. Initially, they all had small bags that attached around the shinbone, and they only handled about 500 milliliters of fluid, so I still had to get myself into a bathroom setting of some sort to empty the bag. In essence, it still required a family bathroom. I didn’t have to transfer, but because I couldn’t use my hands, I needed Maureen to be able to go in with me to empty the bag.
I went to a rehabilitation center for four years, and there were all these guys there with visible bags, and it always made me a little uncomfortable. When talking to those guys, they expressed being uncomfortable, too, because everybody and their brother could see that bag of urine. It kind of picks at your dignity. So, with these events coming up, we figured we’d just get a bigger bag and put it down beneath me. If there was a tube hanging out and urine in there, I’m a big boy, I can handle it. But, I have to admit, I never wanted to put myself through that. I think I was pretty sensitive to that.
Maureen: Also, if he wanted to wear shorts, he wasn’t able to do that because he didn’t want the leg bag to be visible.
Did you end up finding a more discreet solution?
Dave: Maureen, God bless her, did some research and found STYLEDWEL BAG-INS®, the bag that you put the urinary bag in. You hang it on your wheelchair, and nobody has any idea what’s going on. 98% of the population just thinks it’s any other bag that you carry something in. The only issue is that it still requires the tube to come out of the zipper, and urinary bag tubes are clear. The general population could still see the tube, so we wanted to find a way to hide it. Maureen came up with two things. She figured out to cut a hole in my left pocket, so the tube that’s attached to me goes through my pocket, and nobody sees it.
Maureen: Also, I purchased some wide black ribbon from a craft store and sewed a cover for the urinary tube. This method has been a home run and has allowed us to have a social life again, and most recently, to enjoy our son’s wedding!
Dave: I have another family member with MS and we went to see him last summer. At the end of the trip, I said, “Hey, did you even notice that I’ve got this thing?” and he said, “No!” So, most people have no idea what’s going on. It’s just a black tube that goes out of my pocket and it intermingles with some other tubes that are around the wheelchair and the bag. It’s very camouflaged and discreet.
Maureen: I researched a lot of urinary bags online and a lot of them are pretty obvious where you hang it behind the chair or down in front of you. The one from STYLEDWEL looked the least like a urinary bag. It’s black and made out of fabric that looks like any other kind of backpack or bag to carry personal items in. That’s why I liked it.
Other than the fact that it’s discreet, what else do you like about BAG-INS®?
Maureen: It has a zipper on the top and bottom where you can easily take the bag in and out. There’s a bar inside that you run through the urinary bag that adds a lot of support. You don’t have to worry about the urinary bag getting too heavy and breaking because it’s made of a really solid construction. There’s a zipper at the bottom that makes it easy to empty while you’re away from home. There’s also a velcro cover you can lift to see the level of urine. It’s just really easy to use. It doesn’t require any training or anything like that. It’s very functional.
How has BAG-INS® affected your ability to travel?
Dave: Right now, we’ve got a 12-hour circumference around Atlanta that we’ll drive to. We usually do it in two days, six hours at a time. We’re also going to get on an airplane this coming June. We will use the bag, which is huge because getting into an airplane bathroom would be a nonstarter. It’ll be critical for us on this trip; having this setup will be huge in allowing me to travel on an airplane.
“It is our passion to support consumers in areas of medical care which are overlooked, dismissed, and neglected. Stigmas associated with medical devices can be as debilitating as the condition requiring the device. STYLEDWEL is proud to continue to offer consumers discretionary, quality products made deliberately to address concerns and support a positive lifestyle.”
-Mary Marshall, Founder and CEO, STYLEDWEL
Betsy Bailey has a diverse background including experience in marketing research at American Express, business operations and client relations with 601am, travel and culinary writing with VegDining, and playing volleyball professionally overseas.
Betsy is excited to get back into writing, something she’s adored since childhood, and thoroughly enjoys the process of getting to know her interviewees. On top of her work with Wheel:Life, she also teaches students learning English as a second language, speaks French fluently, and travels any chance she gets!