Scooters, Walkers, and Canes Should Trump Ego

Ed Tobias avatar

by Ed Tobias |

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Ponesimod, telemedicine

I’ve used an electric scooter for nearly 20 years. At first, I only used it when I knew I’d be walking a lot. Now, it’s every day. I used a cane for several years before the scooter. I resisted using both, however, and I’ll bet that many of you who are reading this are putting up your own stiff fight right now.

I’ve tried to sell the benefits of mobility aids in my columns, but the other day, I read a Facebook post by a young man (anyone under 30 is young to me) named Dan Moore. Dan makes a better argument than I ever could, and he’s given me permission to share his post. If you’re on the fence about using a mobility aid, please read this:

“I was diagnosed at 25 in March 2014. My first flares were aggressive and left me with spasticity, foot drop, and problems with balance and coordination. Within a month of my diagnosis, I was on Tysabri and Ampyra, but the damage had been done and I did not seem to improve.

“My biggest fear was needing a wheelchair, but needing a cane was a horrible thought, too. So I didn’t use them, and I felt like I was keeping my mobility and Independence.

“I wasn’t. I was being a stubborn dumbass. I was falling. I was staying home whenever I could. I was waiting for a miracle cure and I was wasting my life. I was going to PT two or three times per week, but that’s a drop in the bucket compared to how much less active I became due to my equipment-and-activity-avoidance.

“By the time I broke down and started using a cane, I probably should have been using a walker. By the time I broke down and started using a walker, I had already broken my elbow. And by the time I had broken my elbow, I had been in the Lemtrada club for two weeks. They couldn’t operate on me to fix my elbow due to my blood counts. For five months. I just hobbled around with a broken arm.

“I’m now 9 months post round 2, and I’m waiting excitedly for a TiLite manual wheelchair I was fitted for last week.

“Has Lemtrada failed me? Absolutely not. I haven’t had any new symptoms. My mobility has declined sharply, but it is likely that it’s a result of deconditioning and damage done at the outset of my disease.

“When my wheelchair comes, I’ll be able to travel miles on the sidewalk with my friends. I’ll be able to go to restaurants, to concerts, and to work without feeling afraid of running out of energy or falling.

“When I get home at night, I’ll have energy that I didn’t waste on trying to limp everywhere. I can use that energy to do squats, leg lifts, heel slides, and clamshells. I can use that energy to get my legs strong enough to walk again somedayā€”safely.

“If you fall and break a knee, you’ll be in a wheelchair anyway, but you won’t be able to do many of those exercises. My point is this: please, listen to your body and your healthcare team. Don’t make the mistake of being too stubborn for a wheelchair, walker, cane, or brace.

“Just get moving and stay moving by whatever means necessary!”

OK, my friends. Now, what’s keeping you from using a mobility aid?

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 Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Matt avatar

Matt

Thank you for sharing this, it strikes me to my core.

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Caroline Borduin avatar

Caroline Borduin

I've used a walker for a few years now and it was a blow to my dignity. Encountering people in the community I had worked with when I was strong and able was tough at first. I'm 57 and my peers are agile and healthy and active, enjoying their empty nests. I'm a crumpled woman with a walker!

But I persevere. I run my errands and do my work with a smile and a quip. I'm super slow and at times really tired, but I am still living. To be honest - I still care about appearances, although my feelings are much tempered. I try to dress well and make sure my hair looks neat.

But mostly I remain engaged with my community - doing the things I still can do and much enjoy. The friendships and love I feel for people keeps my life meaningful.

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Ed Tobias avatar

Ed Tobias

I, also, try to look my best.

If someone holds a door for me, when I'm using my canes, I warn them "You may be holding that until (fill in the next season)."

It's all about the attitude!

Ed

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Sandy avatar

Sandy

Thank you for sharing. Please share with the many MS groups on FB. We discuss these very topics all the time.

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Ed Tobias avatar

Ed Tobias

Hi Sandy,

I belong to a lot of the MS groups on FB but I don't usually post my own items unless it's in response to something that someone else has posted. But, feel free to post it yourself. :-)

Ed

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Lisa Caudill avatar

Lisa Caudill

Ha! I just ordered an electric wheelchair. I've had PPMS since Dec. 2012. I've started to see some progression and am tired of staying home for fear of falling in public. It's been hard to face, but now that I have, I'm actually excited about getting my mobility back. Great article.

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Ed Tobias avatar

Ed Tobias

Good for you, Lisa.

The next thing you know you'll be traveling. My scooters have allowed me to travel all over the world. You can do the same with your chair.

Ed

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Rosie avatar

Rosie

Oh, this nasty mirror. ...no hiding here!I will definately rethink my resistance.

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Ed Tobias avatar

Ed Tobias

I'll be watching, Rosie. When you look in that mirror think of me looking back!

Ed

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Mer avatar

Mer

I have been using a cane for a few years. I have been doing PT for a a month. There are exercises I do several times a day, and I go to the gym three times a week. Am i getting better? Probably not. But at least Iā€™m trying.

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Ed Tobias avatar

Ed Tobias

I just got back from exercising, Mer. I do upper body stuff on the universal gym and also ride the bike for 5 - 15 minutes, depending on my mood. It's good for my body and for my mind.

PT + the gym is great. Keep it up!

Ed

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Kathy Allen avatar

Kathy Allen

HERE! HERE! It is so hard to accept using a mobility aide! But I went on a trip to New York & used a disability scooter & have never looked back! I realized then that there were things that I had stopped doing! It was easier to begin using the disability scooter for the first time in a 'strange' place where no one knew me, silly eh?
I repeat my story of using a disability scooter on a holiday & emphasizing how I realized that I had stopped 'doing things' to as many people as I can!! I feel so lucky to have it and a lift for it in my vehicle! I've had it 10 years!!

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Mary Thompson avatar

Mary Thompson

Kathy, start calling it a mobility scooter! Take away the DISability!

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Dale walters avatar

Dale walters

I've used a cane then a walker for just a few years. Wasn't a huge deal against my pride. I think the worst thing I had to swallow was installing the handicap license plates on my vehicle. Didn't last long after I saw I didn't have to deal with putting that hanger on my mirror.

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Patricia Lorenzo avatar

Patricia Lorenzo

I can relate. Iā€™ve fallen several times & have avoided & hated using walkers & canes. I try to do balance & mobility exercises & aquatic classes weekly. Iā€™ve had hip replacement & shoulder fracture due to last serious fall. I walk with a limp. Thank you for reminding me that itā€™s ok & inevitability unavoidable. Youā€™ve inspired me not to dread the unavoidable

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Mary T Wagner avatar

Mary T Wagner

I resisted using a cane as well, but the good thing is that it alerts those around you that you have a problem and as a result, many people offer to help, open doors, or just clear a pathway for me. Without it, they tend to think I am impaired by substances and avoid me.

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Mary Thompson avatar

Mary Thompson

So, I've had MS for eleventy-seven years. There was only Betaseron. It took a bad fall and a caring sister to get my first cane. I named him (all my mobility devices are male) Frazier Cane after the TV character Frazier Crane. Things deteriorated, so I got a walker...named him Jerry Jeff, after the country singer Jerry Jeff Walker. I am now SPMS and use a scooter most of the time. It was harder to come up with a name for him, but I settled on Scooty Puff Junior after a miniature spaceship in the cartoon Futurama. The point is over the years, and plenty of falls, my logic overcame vanity. I've learned to love them all.

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Tim avatar

Tim

I purchased an ATTO folding mobility scooter (in addition to the large home one she has) for my wife at Christmas. This scooter is literally out of this world regards its abilities. Because it folds up and even comes apart it enables my daughter to be able to take my wife out without further assistance and when they are out my wife retains her independence. It can also be lugged along the ground like a suitcase and folds up to just a little larger than a carry on. It is also rated safe for air travel. Because it folds up so small we can take it into restaurants and fold it up and it can stay discretely under say the table. It is expensive but the joy it has given her is worth it. The only ā€œdownsideā€ has been that I am continually demonstrating it to curious passers by. For fun I stuck a transformers badge on the back which gets a lot of laughs. I do not have any association with the company but feel that if it has helped her so much it would be worthwhile sharing.

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Darlene Feigen avatar

Darlene Feigen

I totally understand everything that is being said. I was officially diagnosed end of 2016 I donā€™t have any mobility issues, but I do battle extreme fatigue and bouts of chronic pain due to cervical spasms. I like to be very active and walking a lot at letā€™s say Expos, Fair tend to wear me out. Iā€™m only 49 and donā€™t think I really need a wheelchair or big electric scooter. There has to be some in between people like me.

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Ed Tobias avatar

Ed Tobias

Hi Darlene,

There is an in between. There are some small scooters that you can fold up and throw in the back of your car, or in the trunk. I have one that only weighs 35 pounds. Keep it i the car and take it out only when you're going to do a lot of walking.

Ed

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Mer avatar

Mer

I know there are neurologists that want you to keep walking if your able, which I am. My brother kept walking until he kept falling, he was a progressive. I donā€™t care that my walking is unsteady or ugly, but Iā€™m still doing it.

Reply
Ed Tobias avatar

Ed Tobias

Hi Mer,

Well, I try to have it both ways. I began using a cane to help me avoid tripping but it didn't keep me from walking. I still try to walk a little with my two canes, but I really do need a scooter to allow me to save energy and move a lot faster. It doesn't make sense for me to drag myself somewhere and be too tired to do anything when I get there.

Be careful when you walk.

Ed

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