Wheelchair

September 17, 2024
Living with a progressive autoimmune condition is BORING. Boring because if you’re not working, all you do is sit at home and if you are working, you have to be careful how much time you take off for appointments and treatment plans.
First, I was a CNA/ medication aide working in the skilled nursing and memory unit section. When I could no longer lift 200+ lbs, I moved to the memory unit/ assisted living section, which was less heavy lifting as the residents were pretty much independent. -At that point, it wasn’t that bad and I was still searching for a definitive diagnosis. In 2014/2015, I was diagnosed with just degenerative discs and sacroiliac joint problems. So, no big deal— it was just back pain right? At one point, it was Fibromyalgia, then that flopped. I didn’t really have any symptoms of that, yet one doc still diagnosed me with it. Very briefly, afterwards, I was diagnosed with MS. That flopped too. It didn’t make sense either. Then, they said that I’m drug-seeking or crazy. So I quit looking for a diagnosis because I felt like I could keep going, until 2020. I had a major surgery, went back to work. 2020 came around and I knew I was feeling worse. I *still* felt like I could keep going.

In 2022, I moved to doing a desk job. That felt pretty good. I was happy and didn’t feel bad at all. I loved the group of maintenance men that I worked with. When something didn’t work out, those guys informed me and they were vocal about concerns or anything like that. I had their respect (I hope) and they had mine. -In May of 2022, I was officially diagnosed with Bechterew’s Disease (aka Spondylitis), a progressive fusion of joints beginning in the spine and moving to fuse what’s called peripheral joints like hips, hands, knees and shoulders. This year, my hands began bothering me, aching. My previous rheumatologist who has since retired had me on infusions for about a year and a half, from May 2022 until October/ November 2023. In December 2023, the new rheumatologist thought it was too much and we moved to injections that I give myself. -Ever since March, things have been going wacky. I woke up one day in March with fever-like aches and chills without the actual fever. The first noticeable change came from a blood test in March where my liver enzyme levels were through the roof (some liver damage). Normal liver numbers are supposed to be somewhere between 25 and 44 and mine were 109. 300 to 600 is when you apparently become jaundice, but they didn’t get that high, thank goodness. The second sign that something was wrong was decreased movement in ligaments and joints. Sitting down or bending anything was next impossible and very little sleep. I went through this pain until about early June and spent those weeks on 80 different medications and steroids trying to get that inflammation down. Fever-like chills and body aches eventually went away. I would wear thick socks, two pairs of leggings and a hoodie during that time. In May, when I spoke to my rheumatologist, she said, "Honey, had you felt like this in years prior?"
"No, I’ve never even had a cold this bad."
She said, "Honey, you’re going through your first major relapse/flare."

For two whole months, from March to May, I had no idea what was going on. I quit my job on May 13th after Cody and I had discussed it. In June, I started to feel okay again after all the medications and injections. My liver was reacting to my flare 🔥 and trying to give me a sign. That was the first clue. All that time, I blamed the injections for the elevated liver enzymes, because one side effect is liver issues. Turns out, I had a GI problem causing this flare and symptoms and couldn’t eat anything solid but noodles with only broth and crackers. We avoided tubes and surgery, thank goodness. When something major happens in your body, your liver can decide to react and freak out. This might not happen to everybody— this was just my unique case. In late July or early August, after all the inflammation died down, my legs became really weak and somewhat tingly/numb. After joint inflammation comes muscle weakness apparently, like an after-effect. I fell about two or three times. I couldn’t hide my gait anymore and I’d rather have my cane than worry about what others think. I found it difficult to walk longer distances than before, so I swallowed my pride, started to use my cane more often and ordered a custom-fitted wheelchair for those longer distances. This is fitted to my dimensions. I went to a place in Missouri and it took a whole hour to measure. Out of desperation, I bought a semi-custom wheelchair back in late May. It gave me some freedom. And recently, I finally got out of this house for an outing that was longer than an hour. I had not gotten out of the house much since March, except for appointments. On Sunday, September 15th, I went to a museum and got lunch with my wonderful husband, using that wheelchair. We were there for about two or three hours. Walking for that long would’ve been impossible ever since all this started this year. It used to be that every once in a while, as I was driving, that my foot would be so weak that it would slip off the accelerator. That only happened a very few times. Lately, after the inflammation dissipated, the muscle weakness and numbness has been more persistent, so I’m getting portable hand controls that will attach to the pedals of my truck soon and I can attach them to any vehicle that I drive. But as of lately, I’m feeling great. After months of noodles and broth soup and crackers, I’m eating normally. I don’t know how long the muscle weakness/ numbness will last, but I’m not dwelling on it. The main focus is going to PT, dealing with treatment and going to appointments. It’s the little things that are worth more than the big things. When you look back, you’ll realise that those little things were actually the big things.

DON’T IGNORE YOUR HEALTH. When something feels off, keep persisting.
#AnkylosingSpondylitis @chronicallyoffline #Wheelchair

Why does the word “wheelchair” still evoke sadness? Why do so many people instinctively react as if it’s a defeat rather than a tool for independence?

I used to think this way too—until I met Jake. Jake was in his early twenties when an accident left him paralyzed from the waist down. He told me about the first time a doctor mentioned a wheelchair to him. It wasn’t framed as a means of mobility; it was framed as a loss. “You’ll need a wheelchair now,” the doctor had said, with an unmistakable air of pity. But what no one prepared him for was how much that chair would give back to him.

For months, he refused to use it, convinced that doing so meant surrendering. He struggled through pain, limiting his own movement just to avoid accepting what he thought was a sign of weakness. But then, one day, exhausted and frustrated, he gave in. The moment he sat in his wheelchair, he realized how much he had been denying himself. He could move freely again. He could go out without fearing exhaustion, navigate spaces without pain, and regain a sense of control over his life. What had once seemed like a symbol of confinement had, in reality, been his key to liberation.

This made me question: Why do we see wheelchairs as a tragedy instead of an adaptation? Could it be because we, as a society, have made the world so inaccessible that we project our own fears onto those who use them? The sadness we feel when someone we love needs a wheelchair—does it come from the device itself, or from knowing the barriers they will now face?

Think about it. Imagine navigating a city where every door is just a little too narrow, every curb a little too high, and every “accessible” space comes with a catch. Many places still lack proper accessibility, making even simple daily tasks—like using the restroom or catching public transport—a challenge. Instead of ensuring true inclusivity, society often places the burden on wheelchair users to adapt, rather than improving the world around them.

But here’s the truth: The limitation isn’t the wheelchair. It’s the mindset we’ve been conditioned to accept.

The next time you see someone in a wheelchair, don’t feel sorry for them. Instead, ask yourself—how can we change the world so that they don’t have to struggle for basic accessibility? Because true freedom isn’t about walking—it’s about moving through life without barriers.

#Wheelchair

I'm looking for the perfect electric wheelchair for my wife's grandmother, who is in her 90s. Despite her age and challenges like osteoporosis, she still dreams of stepping outside and enjoying the world. Even a short stroll in the nearby park has become difficult. I believe that mobility should never be a shackle for our elders, and I'm determined to find a wheelchair that offers safety, comfort, and true freedom. Below is a detailed guide that highlights the key factors I'm considering:

1. Brake System

Reliable and Safe Braking Function

To ensure my grandmother can stop immediately in an emergency, most modern electric wheelchairs now feature a "raise-hand brake" design. This means that when she lifts her hand, the system automatically engages the brakes, preventing the wheelchair from moving unexpectedly.

Real-Life Scenario:

Imagine her shopping at a supermarket or navigating a narrow corridor—there might be moments when she needs to halt quickly to avoid obstacles or crowds. A responsive and easy-to-use braking system can greatly reduce the risk of falls or collisions, providing her with enhanced safety during daily outings.

2. Stability Design

Balanced Center of Gravity and Anti-Tip Features

A good electric wheelchair should have a well-designed center of gravity. Look for models that include anti-tip wheels, which help maintain balance during turns or on uneven surfaces, preventing the wheelchair from tipping over.

Real-Life Scenario:

While out and about, my grandmother could encounter various conditions—gentle slopes, uneven pavements, or even the tight spaces inside her home. A robust stability design with anti-tip features would let her move confidently, knowing that the wheelchair will remain steady and safe under different circumstances.

3. Portability and Weight

Overall Weight

For someone who may need to move frequently or use public transportation, a lightweight wheelchair is crucial. A lighter design makes it easier to maneuver both at home and while on the go. I'm particularly interested in carbon fiber models, as they tend to be lighter and offer enhanced strength.

Folding Functionality

Check whether the wheelchair can be easily disassembled and folded. A well-engineered folding mechanism ensures that the chair is simple to store when not in use and more convenient to transport in a vehicle.

Real-Life Scenario:

Imagine my grandmother visiting friends or attending a hospital appointment. She may need to board a bus or store the wheelchair in a compact space. A design that emphasizes portability and a lightweight structure will greatly boost her independence and make her outings more enjoyable and stress-free.

4. Battery and Charging

Battery Type

Electric wheelchairs typically use either lead-acid or lithium batteries. Lithium batteries are usually lighter and more durable, making them a better choice for long-term use and for users who move around frequently—ideal for someone like my grandmother.

Charging Time and Endurance

It's important to consider how long the battery takes to charge and the distance it can cover on a single charge. A shorter charging time reduces downtime, ensuring the wheelchair is ready when needed, while a strong endurance performance guarantees that she can complete her daily outings without worry.

Real-Life Scenario:

If my grandmother plans to be out for an entire day, the ideal wheelchair should support her journey on a full charge. Features like quick charging or backup power options are essential to prevent unexpected battery depletion, ensuring that her travel experience remains safe and uninterrupted.

Summary

When selecting an electric wheelchair for my grandmother, I'm focusing on these key factors:

Brake System: Look for a model with a "raise-hand to brake" feature for quick and reliable stopping in emergencies.

Stability Design: Ensure the wheelchair has a balanced center of gravity and anti-tip wheels to maintain stability in various conditions.

Portability and Weight: Choose a lightweight, easily foldable model—especially one made with durable materials like carbon fiber—for effortless maneuverability and storage.

Battery and Charging: Opt for a wheelchair with a lightweight, durable lithium battery, and pay attention to both the charging time and the overall endurance, to support longer trips.

By carefully considering these aspects and envisioning real-life scenarios, I hope to choose a wheelchair that not only ensures my grandmother's safety but also enhances her quality of life by allowing her to experience the beauty of the world with confidence. I'm eager to hear any model recommendations or further advice from the community as I continue my research.

I hope this guide resonates with others who are also seeking the best for their loved ones!#Wheelchair

As has been stressed over and over since introduction of the #ADA, access accommodations needn’t be expensive — they only take a willingness to do them. #Accessibility #Wheelchair #Disability #MultipleSclerosis

wheelieoutthere.blogspot.com/2025/02/it-aint-pretty-but-it-s...

Hi, I have #CRPS in my legs and it's spreading. I also have a bunch of other medical conditions like #EhlersDanlosSyndrome and #PosturalOrthostaticTachycardiaSyndrome and so on. So my current question is this: does anyone in a similar situation have advice on where to get soft clothes that won't aggravate the CRPS or require a lot of maneuvering of my joints which causes problems because of the EDS? Also I'm an ambulatory #Wheelchair user, so I'm seated or lying down a lot of the day.

Then there's the fluffy factor. I'm fluffy (sounds better than other adjectives, or phrases like plus size) and that adds a layer of difficulty in finding clothes. I have some of Torrid's super soft stuff, but the seams still bother me. I've found a seller on Amazon that has bamboo viscose sleep and kinda lounge wear.

The TMI bit: bras are unbearable for my ribs and my skin, but going without is not a great look when you've got fluffy breasts, too, if you know what I mean. And most of the underwear I've tried is terrible, digging in to my groin and causing abrasions that get infected.

Please advise, DM or reply I don't care which. I'm really frustrated with the whole thing.
Thanks!

My powerchair is coming today! I can’t believe this moment has come in my life. The moment where I can no longer walk long distances…which was a joy for me. I used to walk up to 6 miles a day. Now I’ll be rolling those 6 miles.
I understand that it’s strange to be excited to have a powerchair because who wants to end up in one?

But one has to understand that I’m not excited about the chair itself, I’m excited to be able to leave the house (by myself) and go places without the fear of feeling too weak or in too much pain to get back home.

I’ve done that before…I was in a mall which I had walked to and once I got there I had some sort of episode resembling a focal seizure and I couldn’t walk home. I was confused/afraid and found a pay phone with a phone book (I don’t have service on my mobile) to call a Taxi.
That scared me and that was years ago!

I’ve known maybe even since a teenager that eventually I’m not going to be able to walk long distances. I have consistently felt my body weakening…not aging as people would know it, but weakening…and honestly to not truly have all the answers to why that is scares me.
But I hope my new found freedom will distract me from the daily pain I feel where I can focus on my photography.
Take care Mighty Friends…

I'm just so amazed by how lovely and helpful people are when I go grocery shopping. Most places have trolleys that clip onto my wheelchair so I can get all I need, unfortunately some people like to leave normal trolleys there and it's very difficult to get them out.

However, on the positive side, a man helped me to get some things I needed, people always moved out of the way when they could, and I moved out of their way also, obviously, and when I used self checkout, one of the staff helped me put everything back in the trolley.

It's just simple things like that, that make my day so much less hassle and I still leave feeling proud of myself and independent
#Fibromyalgia #ambulatory #Wheelchair #ChronicIllness

I am 34 years old with a PhD in Biomedical Engineering. I have MD and use a motorized wheelchair. There have been multiple issues in common with every flight I have been on. The airplane seat height was a significant challenge as I have muscle contractures and transfers are difficult, often requiring 2 to 3 people to lift me. Lavatory access was impossible and no alternatives were offered. The time required to board and for airline staff to load/unload my wheelchair in the cargo hold was also substantial.

During my time in academia, I was severely limited by distance when attending scientific research conferences. The longest distance I traveled by plane was New Mexico to Seattle on a nonstop flight with Southwest airline lasting 3 hours. Once the plane landed, the staff brought my chair to the boarding gate after what seemed like an hour of anxiously awaiting an opportunity to get to the airport bathroom. My wheelchair had to be manually pushed all the way from the bottom of the plane to my location. Keep in mind power wheelchairs can weigh 300+ pounds and cost $30,000+. Somehow my wheelchair technician back in New Mexico helped us reset the wheelchair.

On a spontaneous weekend trip to Los Angeles, I flew on a smaller United jet. Unlike the Southwest crew allowing me to load/unload directly from my wheelchair, United brought out what they termed an “aisle chair“ which looked to me like a chair for a 10 year old weighing 50 pounds. I was 21+ years old and about 200 pounds! In order to keep me secure in this tiny chair, I was strapped down head to toe which I have to admit made me extremely anxious and a bit claustrophobic (à la straight jacket). After going through this process again to exit the plane, I found out my joystick was broken off the armrest of my chair. The staff found two screws and somehow reattached the pieces. I then once again motored quickly to the nearest airport bathroom.

The bottom line from these stories (like so many others involving people who use motorized wheelchairs) is that is an exhausting and demoralizing experience. I haven’t traveled by plane since 2012 because of these issues and my disease progression. This means that I have to get someone to drive me out of state to attend any disability summit, research symposium, or visit my new nephew (a 20 hour drive!). Why do people with motorized wheelchairs have to be forced into avoiding flying altogether because they are afraid of injury or wheelchair damage? Airline companies must do better!

#MuscularDystrophy #Wheelchair #Disability