Columns The MS Wire - A Column by Ed Tobias A Road Trip From Florida to Maryland With No Bladder Incontinence A Road Trip From Florida to Maryland With No Bladder Incontinence by Ed Tobias | June 3, 2022 Share this article: Share article via email Copy article link After two days — 16 hours of it spent on the road — and 1,104 miles, I hadn’t had a single accident. My bladder control meds must’ve worked. The semiannual trip my wife and I take between Florida’s southwest coast and the suburbs of Washington, D.C. is never easy, particularly because we travel with a cat and a dog. Getting in and out of hotels with two pets, pet food, and cat litter is tough for most folks. Add the fact that I usually use my scooter to get to our room, my wife has back problems, and neither of us is a spring chicken, and it makes the trip especially daunting. But the toughest part for me is playing rest stop roulette. The clean places with easy access never seem to be in the right place at the right time when I gotta go. Finally close to home! (Photo by Laura Tobias) Traveling with an unstable companion My MS bladder can be a roller-coaster ride, and I’ll bet it’s the same for you. Sometimes it’s urgent, sometimes it’s frequent, and sometimes it’s both. Sometimes it’s better behaved than other times. My general on-the-road pattern is to have no urges for several hours, but then, when I decide I’d better stop and go, I have to go before I get to the place to go. The same is true when I’m checking in at a hotel. During this trip, however, my urgency was under control. Recommended Reading May 18, 2022 by Mary Chapman Newly diagnosed with MS: 12 questions to ask your doctor What changed? There are several possible explanations for my success. I’ve cut way back on caffeine, which is a bladder irritant. Even my morning coffee, with rare exceptions, is decaf. On the morning of a drive like this, I skip my coffee entirely, drinking only water during the day. I’ve changed my bladder medication from oxybutynin ER to Myrbetriq (mirabegron). Since doing that, I’ve been able to sleep through the night, getting up to eight hours on most nights without a bathroom run. Myrbetriq is expensive, but it seems to be doing the job. It also may be the result of Lemtrada (alemtuzumab) treatments. Both my bladder and bowel problems seem to have improved after being treated with Lemtrada. Also, after much searching, I’ve found incontinence underwear I feel confident in. The company LivDry also sells insertable pads for extra protection. Usually, this insert absorbs whatever accident I might have. So I’m able to remove it in the men’s room, toss it in the trash, and replace it without having to take off my shoes and pants, which would be necessary if I needed to change the protective underwear itself. (Sorry if I’m oversharing.) There are many similar products, of course, but this works best for me. Yet on this trip, there was little or nothing to absorb. What was the key? The mind matters I think a lot of my bladder troubles while traveling have been psychological. A 2015 study published in BMC Urology concluded that there was “a positive correlation between perceived stress levels and urinary incontinence symptoms.” And this sort of trip has always been stressful for me. So adding an extra layer of absorbency to my incontinence underwear gave my mind the stress relief it needed. Combining that with the results of my new bladder medication, Lemtrada, and a no-caffeine diet kept this boy dry. Oh, and there were no accidents for Freddie the cat or Toby the dog, either. I have no idea why. You’re invited to visit my personal blog at www.themswire.com. Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Ed Tobias People say to write what you know and Ed Tobias knows about MS. He's lived with the illness since 1980, when he was 32 years old. Ed's a retired, award-winning broadcast journalist and his column combines his four decades of MS experiences with news and comments about the latest in the MS community. In addition to writing his column, Ed is one of the patient moderators on the MS News Today Facebook, Twitter, and Instagram sites. He’s also the author of “The Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.” Ed and his wife split their time between the Washington, D.C. suburbs and Florida’s Gulf Coast, trying to follow the sun. Tags bladder control, travel, treatment Comments Cynthia MacFarlane Not oversharing ... Thanks for sharing helpful information . Appreciate your openness Reply Ed Tobias Hi Cynthia, I'm glad this was useful. We've all been there and we all need to share and help each other. Thanks for your note. Ed Reply John McCann Hi Ed, Great article. This is the bane of my life so good to hear the tips and to know I am not the only one ! Have a great weekend Cheers, John Reply Ed Tobias Hi John, Thanks for your note. You're far from the only one, as you can tell from reading some of the other comments here. We're all like "pees" in a pod. Ed Reply James Solved the problem. I bought a motorhome. Reply Ed Tobias Good thinking, James. My wife would love to do that but, with both of us having mobility problems and being in our mid-70s, doing the hookup work an RV requires would be impossible for us. Ed Reply Lisa A Cunningham Hi Ed, I have been on Myrbetriq for a year now and it has been a game-changer. I am able to sleep through the night and have more control through the day. Like you said, it is expensive but worth every penny. I enjoy reading your posts. I was diagnosed 30 years and your posts are most relevant. Lisa Reply Ed Tobias Hi Lisa, Thanks for your comments and I'm glad you like what I write. Also glad you can sleep through the night. I love getting 6-8 straight hours almost every night, now. BTW, now that I've filled my deductible my Medicare Part D mail order pharmacy charges me only $120 for 90 days. $1.33 a pill is well worth it to me. Ed Reply Jan I also have an MS bladder. We haven’t made trips as long as yours, but on short trips, my husband knows that my urgent call is “Mcpotty!” These seem to be the cleanest stops. Reply Ed Tobias Hi Jan, My wife and I agree with you. With the exception of SOME of the state-run rest stops along I-95, Mcpotty is our place to go. Ed Reply Penny-Marie Wright I used to use Depends & it was a pain when I was out & had to use a mall or store washroom. Entailed taking shoes & pants off to change them. Now I use extra-heavy pads so I can change them as needed without all the hassle. Makes me feel a lot happier about it. Reply Dori Rocco I have also added AZO Go Less over the counter to my Myrbetriq. It's made a huge difference. Worth a try! Reply Ed Tobias Thanks for sharing that tip, Dori. Ed Reply Maria Mead Thanks for sharing! Myrbetriq has been a wonder-drug for me. It stopped working well on one trip and I thought its effects were waning, but it turned out I had a bladder infection. Very few emergencies/ urgencies since I've been on the medicatiion, now for about six months. I hope that the price comes down, but its been worth every penny for me, and no side effects! Reply BELINDA K LOVE I also take Myrbetriq because of severe incontinence. The last time I refilled my rx (1 wk ago), I paid $798. co-pay for 90 days. My husband and I are more fortunate than most, but paying this amount for only ONE of my rx's, and also being on Ocrevus, it is a bit much for us. Yes, I have tried numerous other incontinence rx's that have not been nearly as successful. Prices are ridiculous on prescriptions! Reply Ed Tobias Hi Belinda, Thanks for your note. I'm on Medicare and with my Part D plan, after the annual deductible is met, my cost is only $120 for a 90 day supply. $798 is just crazy. Ed Reply Peter Novak Thanks for your article, Mr. Tobias. I'm glad the meds have helped you. But, $400 for 30 days is absolutely ridiculous! Looks like I'll just have to continue to get up during the night.... Reply Ed Tobias Hi Peter, Yes, it's a ridiculous cost. I'm fortunate that, once my deductible is satisfied, my Medicare Part D plan brings the cost of a 90 day supply down to $120. That works out to $1.33 a day, which is certainly reasonable. Ed Reply Tom Anderson Hello Ed. Congratulations on your bladder success! You describe well the ability to last hours in a car ride (for example), only to have that success erased as soon as you get out of the car (stand up) and urgency takes over. I am going to try mybetriq, mainly to see if it helps me at night to get better sleep. Just a side note to others reading this, in contrast to your insistence for an instant change of a wet "device". At the risk of sharing too much, I use a diaper. Tried Oxibutynin and didn't like the constant feeling it gave me. The point- A wet diaper will not kill you and does not need to be changed until you can safely slip it off and put it in a plastic bag and toss it (several hours 2-5). Urine will not hurt you. You can touch it. It can touch you. Mine does not smell and I am not "unique". A "Depends" for men can hold me two typical releases. I do not drink loads of liquid when I know ahead of time a bathroom may not be easily accessible. in the relative near future. Bladder issues are one of the easiest difficulties to deal with with MS. No need to stress if you are protected. It's your own secret. You have MS; being "normal" again is probably not gonna happen. :-) Reply Ed Tobias Hi Tom, Thanks for sharing all of that. Yes, this is also my normal. But, after living with MS 40+ years, it's certainly not my "new" normal. :-) Ed Reply Peggy Not over share with us! My issues same. My MS bladder same. Understanding all this. Use Always underwear and the pads extra when going to Dr. Use Mybertrrig and Ocrevus treatment. Still limit all liquid intake. I don't travel anywhere but Dr as in power wheelchair Reply Ed Tobias Hi Peggy, Thanks for sharing all of that. We do what we need to do. Ed Reply Maria Mead I agree, these prices are ridiculous! I luckily have an insurance plan that pays for more of my share of the cost. However, it looks like one of the patents may expire by the end of this year, so don't give up on checking to see if Myrbetriq is covered yet, Also, Astellas, the manufacturer, does have a Patient Assistance Plan for people who qualify. Always worth checking to see if you qualify and/ or looking to see if the patent has expired and if it is made in a generic form yet. Apparently they have made over 1 Billion dollars on this med, so they can afford to give some away! Reply Ed Tobias Hi Maria - Thanks for sharing those tips with the group. I'm also fortunate that, after my annual deductible has been met, my Medicare Part D plan only charges me $120 for a 90 day supply. I just checked and the patent on Myrbetriq expires Oct. 1, 2036. Since I'm about to turn 74 I expect I'll be long gone before there's a generic, so I'm glad Medicare covers most of my cost. Ed Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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