Columns The MS Wire - A Column by Ed Tobias ‘Easy Rider’ Dreams? Say Yes to the Motorcycle ‘Easy Rider’ Dreams? Say Yes to the Motorcycle by Ed Tobias | August 8, 2017 Share this article: Share article via email Copy article link Reading some social media posts the other day, I found myself humming a line from a late 1960s Arlo Guthrie song: “I don’t want a pickle. Just want to ride on my motor-sickle.” I didn’t think it was possible for someone with MS to ride a “motor-sickle.” It appears I was wrong, because it looks as if a reasonable number of us MS folks are doing just that. Shannon Sorensen’s Harley Shannon Sorensen is one of them. She posted on the “We’re Not Drunk, We Have MS” Facebook group: “My advice is have fun!! Be smart, take breaks, let the rest of your group know that you’re fine with (or not!) them maybe going ahead and you catching up if you need to, be open and honest with them!” Karen Hall is another. She emailed me: “I love the idea of riding, am very impressed with riders, but MS has tried to slap me stupid so I would stop riding.Ā And that is why I ride my beautiful Can Am.” The Can-Am Spyder is a three-wheeler. Karen says the three-wheel configuration allows her to compensate for her MS balance problems. Al Montella’s ride is a 2001 Harley-Davidson Road King. Al Montella with his Harley “When I’m feeling good I ride…I sometimes plan it when I’m having a good day and I’m stress free ill just get on and enjoy the breez.. i’m sure to take beverages to keep me hydrated and wear a helmet that has air vents built in..this also helps to keep me cool. It’s not about giving up what you love it’s just knowing your limits, you may not be able to ride as far as you used to but at the end of the day your riding and you’re enjoying yourself and doing what you love.” Hints if you’re planning to ride Denise Sellers has this advice: Make sure everyone in your group knows about your medical issues. Denise Sellers (left) at the Sturgis motorcycle rally Ask them to help watch for signs that indicate something is off. Don’t push yourself just because they are pushing. Make sure you take frequent breaks to walk around, sitting for that long can cause all kinds of issues. Make sure to drink a lot of water and eat! Take snacks, you have to feed your brain and keep hydrated!!! You don’t want to get dehydrated or hungry on the road bc it causes confusion… for me. And it happens fast, without you even realizing it. Make sure to wear sunblock, keep something cool on you all the time. I wear bandanas soaked in water and have cooling towels with me all the time. It’s super easy to get overheated on the bike just from the heat of the road!! MAKE SURE THE VENTS ARE OPEN ON YOUR HELMET!! Helps keep your head cool, I’ve been known to get my hair wet also. If so take a small ice chest with you for cold drinks and to keep other cooling towels, bandana’s and those cooling things that go around your neck. Don’t forget your meds and make sure to take them on time. Listen to your body. Modifying your bike for MS I wondered how I’d be able to shift the gears if I tried to ride a motorcycle. Because that’s usually done by raising or lowering a metal shift lever by flexing a foot up or down, that could be a real problem for me, since my left foot can’t do that. But I’ve discovered there’s an electric shifter that uses buttons on the left handlebar, so foot-shifting isn’t needed. And there are other modifications that can be made to make a bike “disabled accessible.” Is it for you? At 69-years-old, I’m not sure that I’m going to hop on a motorcycle, unless it’s as a passenger. It’s nice to know, however, there are MSers who can, and do, ride. And, who knows what may happen down the road? I try to never say never. *** Note:Ā Multiple Sclerosis News TodayĀ 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 ofĀ Multiple Sclerosis News TodayĀ or its parent company, BioNews Services, 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. Heās also the author of āThe Multiple Sclerosis Toolbox: Hints and Tips for Living with M.S.ā Ed and his wife split their time between the Washington, D.C. suburbs and Floridaās Gulf Coast, trying to follow the sun. Tags safety, tips Comments Paul Yabsley I have MS and ride a Z900. I don't do long rides but get a lot of satisfaction from still being able to do thing, have adventures. I don't push it. I ride to my limts and enjoy. Reply Ed Tobias Hi Paul, That's great. Enjoy every minute of it. Ed Reply Sylvia I just bought myself an electric bicycle and use it to ride just about everywhere I go. I can be on my bike for an hour without having to come home and go to bed. It makes me feel normal! Reply Ed Tobias Hi Sylvia, I've been thinking about doing the same thing. That's more my speed than a motorcycle. Ed Reply Jane I believe song is by Woody Guthrie, not Arlo. Reply Ed Tobias Nope, it's by Arlo. You can hear him sing it if you click on the link on the song title. (I know a little about the Guthrie family. I went to high school with Joady Guthrie, Woody's other son who was in my class, and Nora Guthrie, his daughter who was a year behind me). :-) Ed Reply Steve Larson I just took delivery of a Harley Fat Boy Deluxe with a sidecar. No balance issues now and I can take my wife, dog, or grandchildren along. Highly recommend it for an escape. Reply Christine McCarthy I am so happy for you and your family. We bought our first Harley in our late fifties....I have the MS and was more than happy to be the passenger... Five years ago my husband died from a brain tumor ā our memories our Harley....priceless. I rested a few days a week and we rode every possible chance we had.....SO Enjoy every minute....your are still blessed...so ride, ride, ride...pace, pace ???????????? Reply Dale Rayder I am in the process of converting my 93 fatboy into a trike one way or another i am going to ride Reply Christine McCarthy ???go for it....??- Suggestion...put a comfortable passenger seat...if your looking for company once in a while??????? Reply Daniel Danny here, I am an old Chopper guy, have bought and sold a few, converting and fixing up along the way, bought my first one, when I was 17, .....43 now, and haven't been without since, a little over a year ago, when I was diagnosed....... So scared for my family, I sold everything, mistake,!!!!!!! had some really rare, cool, 70s parts, now I have nothing to show for...... But I have Faith, and something cool will come of it!!!!! So keep the faith, and ride on!!! Reply Charles de Young I was diagnosed with P.P.M.S. last February and am a life long biker, I can't stand not working and sometimes feel trapped, I started thinking I want to do a cross country motorcycle trip before my legs give out completely. As I researched doing this I ran across long Haul Paul who raises money for M.S. by riding his bike for a cure, he has M.S. and has covered 2 million miles now. I am inspired to go ahead with my dream and just do my trip. I will have to use a smaller bike and am trying to narrow down which bike I am going to buy. Low seat is my biggest concern. Reply Derek I was diagnosed with PPMS a year ago as well. Knew something wasn't right for over 10 years. Glad I didn't know because it plays on your mind as I'm sure you all know. Before I found out though I was lucky enough to spend 5 summers touring the U.S. for 2-3 weeks at a time on a Harley Road King. One of those bucket list dreams I had since a kid. 'I had the Easy Rider poster hanging in my room as a 15 year old' I have since sold the Harley 'too heavy' and bought a little Kawasaki W650. Miss my old girl but at least I'm still getting out for the odd day ride if it's not to hot. Hang in there everyone, a cure is coming. Derek Reply Sindi Brelsford I've had RRMS for 15 years, which caused blindness in my left eye due to Optic Neuritis 4 times back to back. I've been in remission for 12 years now. I learned to ride at 47 years old. I'm now 51 and my MS reared its ugly head 2 weeks ago. I've been in denial that it's back,but my balance and my gate are tale tell signs it's back. I won't get to see the MS DR until June. That's my fault, I stopped all meds and visits for the last 10 years. I was convinced after the first 2 years of the 12, I didn't have MS. The Dr's were wrong. ā¹ I was wrong and stupid. As a rider, I am NOT ready to give it up. Reading these blogs above has given me back hope that I can continue to ride. I'm smiling again ? Thank you ? Reply Ed Tobias Hi Sindi, I'm sorry that the beast is back but I'm glad that you found my Easy Rider column. I found a saying, a while ago, that fits my attitude and it looks as if it's also going to fit yours: Life isn't about hiding from the story, it's about learning to dance in the rain. In your case I guess it should be ride in the rain. Keep smiling. Ed Reply Max I have RRMS as well. Take it from me, DON'T STOP THE MEDS! My biggest problem besides, balance, pain and incontinence has been fatigue. I started a couple months ago on Provigil which has been great at giving me energy. I'm on Gilenya for the MS. Reply Andrea Woodvine My main problem with MS is that it affects my legs a little,some days more than others. But I got myself a maxiscooter, which you only use your feet on when you stop, and a well vented "jet" helmet with sun visor, and that makes the days enjoyable, in fact, to the point of being easier to handle than a car. MS doesn't necessarily mean giving up 2 wheels, just making some adaptions to the bike or your life. Reply Max Really good to find this web site. After 50 years of riding I gave it up under pressure from 'loved ones'. Like the singer Paul Thorn says 'I don't like have the folks I love'. So I'm riding again even with my battle with MS. I'm seriously modifying a Suzuki Bandit 1200 to make it easier to get on and lower so I can get my feet down quickly. The shifter linkage has been giving me headaches so the electronic shifter will save a lot of effort. I've even switched to a solo saddle so in the event that I met a lady who likes fat, bald crippled, penniless, ugly, old men I won't be tempted to give her a ride. Reply Ed Tobias Good for you, Max. Rock on! Ed Reply Michael Just be aware that Honda's DCT bikes are essentially automatics, no clutch. I don't need it yet... 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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