mobility aids

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    Young people and Mobility Aids

    Have to use my cane again. I feel extremely self-conscious right now, because I’m young and don’t “look sick” 😷 how do any of you spoonies 🥄 who use mobility aids cope? At least it’s got cute stickers on it ;) #MobilityAids #FunctionalNeurologicalDisorder #SpoonieFashion

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    Accepting an electric wheelchair

    I recently purchased a Golden Technologies Literider Envy green power chair. Since I use various mobility aids (been using the walker pretty often), so it has been getting very hard to get around large places with just a walker. I attended an air show that involved a ton of walking, so my dad had me take my power chair. At first, I was embarrassed because I viewed wheelchairs are for those who are paralyzed, but when I saw ambulatory users my embarrassment was gone and I received compliments on my new chair. It helps me get around with less pain, less fatigue and my symptoms were not as bad. I can say that I accept my new mobility aid because it is a tool to help me get around. And I can enjoy events without paying the price later.

    #Disability #Wheelchair #polyarthralgia #Fibromyalgia #AmbulatoryWheelchairUser #HypermobilitySyndrome #dynamicallydisabled #MobilityAids #Acceptance

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    I am soooo sick and tired of apologizing…

    It was pointed out to me yesterday in this way…. Mom, stop apologizing to people for THEIR bad behavior. Let me explain a bit.

    Yesterday, I was having a very difficult morning with pain and numbness and burning in my spine and lower body. I was just trying to walk/function a bit in my home with my rollator and cane as I always try, if I can. Quickly, I was losing the ability to feel my spine and lower body as the numbness can be quite severe and it becomes all I can feel. I can’t put it in pretty words, it’s not pretty. I was losing control of bodily functions and could not feel it at all (again!). I told you, it’s not pretty. Of course, I was in the privacy of my own home. I can deal with that but it still ticks me off.

    Then, it came time to get to the hospital and have my brain mri already scheduled. I wanted to go in the manual wheelchair, I couldn’t walk anymore. My daughter drives me, ok, here we go, done ✅.

    Now, we stop at a local store here in town, a small store, the only one in my town. This time, I’m going in too. I’m tired of not being able to go into any store to get anything for myself because my ability to walk on my rollator can be suddenly, excruciatingly painful and numbing on very short notice. Of course I cannot walk up and down most isles like a typical healthy person but I have fought for the ability to keep my limbs working for a very long time now along with a tiny bit of independence. I think most people would, however; I’ve learned now that I have days and weeks that the rollator is just not sufficient and a wheelchair has to be used. Like yesterday, to the hospital and the local store.

    Here we are, in this store and I soon realize that yes, there’s several isles that I cannot go down at all because they have carts here and there and excess boxes of products they are trying to stock, the isles are very thin. That’s not my main problem though. More and more customers are filling up this store and I’m in this wheelchair fighting to use my one ☝️ better arm and strengthen the other too. I’m in an isle picking something for myself (yay😂. I feel like a big girl for a moment). My daughter’s nearby pushing a cart for me and gathering things I cannot get to.

    Little by little I found that I was in the way, of many, it seemed. I found myself apologizing over and over AGAIN, to anyone and everyone who appeared to be inconvenienced by my sheer existence in a wheelchair. Regardless if I was in the isle first, I was still apologizing. Because they can walk much faster with their carts they are trying to make noises and give me looks to get out of their way faster. I cannot maneuver this chair in these tiny isles around every dang thing piled in the store fast enough to suit the lady in front trying to push past where there’s clearly not enough room. The lady trying to come in behind me could see that I couldn’t back up to please her and I couldn’t go any further to the side to please the people coming toward me. I could NOT physically get out of everyone’s way fast enough. It happened several times during this visit. I don’t know how many people I apologized to but after a bit it kind of starts to make a person feel like they are a burden to the public. To the community they call home, their fellow neighbors. I apparently don’t have the right to go into a store and buy something for myself because the mobility equipment might make someone else have to wait a few seconds longer than they wanted.

    Out speaks my daughter, a few times, but this time louder and with solid, stern, tone of voice. “Mom, you don’t have to apologize to people because of their own bad behavior”! I realized it then. She has told me on more than one occasion, that I apologize to strangers all of the time because they show they are being inconvenienced for a few seconds/minutes of their time.

    I want to say that I’m sick and tired of apologizing for my existence. My body is controlling my life. I don’t care anymore if your inconvenienced. Turn around and go the other way. Keep your snarly comments and moans and groans to yourself and go the other way. If you cannot do that, try a little human kindness. Have a little patience, a little respect for other human beings. ALL human beings deserve a little respect and kindness. It shouldn’t matter that some of us cannot walk like you. I picked a few things for myself in a local store. It felt really good 😊 👍🏼!!! I needed that. I was not in the wrong because I’m still fighting for what’s left of my limbs, my life. I’M NOT SORRY!!!

    #Undiagnosed #MightyTogether #ChronicPain #MobilityAids

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    Wellness Wednesday: Exercising With Limited Mobility To Manage Type 2 Diabetes

    My friend and colleague, Corinna, recently wrote an article about using exercise to manage type 2 diabetes for individuals with limited mobility.

    Take a few minutes to read her article,
    “Exercising With Limited Mobility to Manage Type 2 Diabetes”

    type2diabetes.com/living/limited-mobility-exercise

    ❓For those with limited mobility, what types of movement that you currently do?

    ❓What advice would you give to others managing diabetes with limited mobility?

    Share your experiences in the comments 👇🏾

    #Diabetes #DiabetesType2 #prediabetes #GestationalDiabetes #ChronicIllness #Lifestyle #exercising #wellness #physicalactivity #MobilityAids #Support #SupportGroups #MightyTogether

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    Oh… #Photophobia

    This past month my #Photophobia has been horrendous. It’s been so bad that I can’t even go outside most days even if it is cloudy because it is too bright for my eyes to handle. This leads to #Migrane I’m already #LegallyBlind / #functionallyblind / #VisuallyImpaired so… now I have too keep my eyes completely shut which just makes things harder. Thankful for my #MobilityAids This has lead to a #Depression episode and of course my #Anxiety has been troubling a bit too. Mainly my #Trich has gotten out of hand because of the anxiety. But, good things are coming as I did have a tint evaluation for specialized glasses for the #Photophobia now we just play the waiting game and hope I can somehow obtain enough money for the second specialized pair that I can use for daily tasks once I find out the cost!

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    Using A Mobility Aid At A Young Age (and how I'm gaining confidence in using mine)

    When I was diagnosed with FND last year. I hadn't experienced too many symptoms that impared my mobility. I had wanted to get a cane mainly for my chronic leg pain, fatigue and occasional leg weakness. After quite a few months I finally got a cane, that was previously my dad's. And as my mobility issues progressed to things, like tremors and a gait dysfunction it became more and more apparent just how often I'd need to use my cane.
    And although I was grateful to have an aid I needed for a year, I couldn't help but feel the internalized ableism. "What if I don't actually need this" " I could probably go with out this, even if my symptoms will flare after" . Since I'm a teenager, I was afraid people would say I'm "too young " to use a cane.
    All of these had prevented me from using my cane until month after I got it. And I had done a few things to ease my anxiety. So without further ado, here are my tips for gaining confidence in your aid

    1. Follow #BabeWithAMobilityAid

    This tag, which can be found on both Instagram and TikTok is full of beautiful and confident people showing of their mobility aids, and being proud of them.

    2. Fake it till you make it

    This tip, I got from @The.annegirl on Instagram. Her advice, is to fake your confidence in public while using your aid. Eventually you'll realize you aren't faking it anymore.

    3. Decorate your aids

    I personally have found that decorating my cane, has made it so that it feels much more personal and less medicalized, therefore destigmatizing it for me.

    4. Name your aid

    I know this sounds silly, but it personally really helped me. (My cane is named Sally btw)

    5. Take a photoshoot with your aid.

    Taking cute photos of myself always makes me feel more confident. So if I do the same thing while holding my cane I find that the cane makes me feel MORE confident.

    I still deal with anxiety when using my cane, and I be lying if I said I never left it at home, when I needed it. But these tips, have helped me SO much. And I hope they help you too
    ×○×○

    #FND #FunctionalNeurologicalDisorder #ChronicIllness #hiddendisability #MobilityAids

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    Severe Muscle Wasting/Atrophy in Legs-caused by Extreme Chronic Pain limiting mobility. #ChronicPain #ChronicIllness #MobilityAids #Undiagnosed

    I don’t recognize my body anymore. The extreme muscle loss in my legs have dramatically increased the pain in my legs. They continue to get worse and worse awaiting proper tests and diagnosis for the many neurological issues I’m struggling with.

    My mid-spine down is trying to paralyze me permanently and I fight it hard on the days that I can. I’m able to manage 15-20 mins max on my feet for any and all chores/exercises I push for on a giving day. I cannot do it at all without my walker. Many days I cannot do it at all. I push until I cannot endure 1 more minute of pain/burning and numbing in my spine/hips/butt/groin/legs/feet.

    I’M SCARED I’M GOING TO LOSE MY LEGS!

    I do have Degenerative Disc Disease and Fibromyalgia for well over 30 years. I also have Failed Back Surgery Syndrome from spine fusion and other spine surgeries, and what APPEARS to be extreme damage caused by surgical error of the wires inplanted in my spine stimulator and not found for 6 years.

    All of these past issues are delaying every single accurate diagnosis which keeps the doors closed-to proper treatments, medications, equipment, and assistance with the insurance company.

    How much longer can I wait? I’ve nothing left of my legs at all. I was a very active gardener my entire life. I never had a weight problem at all, didn’t have any excess body fat on my legs or anything, just muscle. I kept in good shape, fit!

    Now, I am struggling hard with my body shrinking to nothing because I cannot stand on my feet to cook proper meals and nutrition on any kind of regular basis.

    I’m wasting away!

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    Which mobility aid should I get?

    So... I need to get a mobility aid as my legs are weak and unsteady. I want to get some kind of crutches or rollater. I'm trying to figure out which one's the best for my situation. I have weakness in my hands also which complicates things. I don't want to use wheelchair as I can still walk and don't want my legs to atrophy. Any advice? #MobilityAids #FunctionalNeurologicalDisorder

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    What small things could restaurants do to better accommodate your disability?

    I live with bilateral vestibular loss and oscillopsia which means my disability manifests in unstable walking/mobility as well as near-constant bouncing vision.

    To be honest, eating in most restaurants is really taxing for me. Whether it’s because of the flooring patterns (a nightmare with bouncing vision) or due to how tightly spaced the tables are together. (Have I fallen in a restaurant and even on top of another eatery patron before because the tables were too close together? YOU BETCHA.)

    So I’m curious, what small things could restaurants do to make dining out a better, more accessible experience for people with disabilities?

    #Disability #Wheelchair #Spoonie #EhlersDanlosSyndrome #Migraine #MobilityAids #Accessibility #ChronicPain