When is it time to get a wheelchair?

Many people with Myalgic Encephalomyelitis or “Chronic Fatigue Syndrome” find that too much physical activity can make their condition worse. Sometimes permanently.

Pacing, resting, and using equipment like wheelchairs and scooters can be important tools in helping yourself. How do you know when the time has come?

Stories and ideas on this page from the wonderful members of #MEAction Living With ME Support Group. Artwork on this page by Elizabeth D’Angelo.

Hydragena’s Question

I feel like a fool asking this question. I have things I want to do with my son (like taking him to the zoo) but there is just no way I could walk that much. I feel like a wheelchair would greatly reduce my fatigue and allow me to be more present, but I’m not sure if I’m just giving into the disease. I’m afraid I’m not “disabled enough” for a doctor to say I need a power wheelchair. I’m embarrassed by the fact that I have to ask this question:

How do you know if you need a wheelchair?

Kylie Hughes

After months of hoping I would feel good enough to leave the house, I knew I had to do something. I just bought an electric smart chair this week. I found it on Facebook and got an excellent price.

I was embarrassed and afraid I would embarrass my kids (ages: 18, 17, 16, 15, 12, & 11). The wheelchair didn’t bother my them. They thought it was cool and were excited that I could do more. I hate ME, and I hate what it has done to me, but I have to suck it up and not worry about what others think.

Cosmo

I love my electric wheelchair! I got a KD smart chair. The ability to be outside and moving has been really valuable for me. My connection with nature has always been healing, but I used to push myself too much.

Now I feel like I’m moving forward. Literally. I enjoy daily rides in the summer and, as much as I can, through winter. I took it on vacation recently and I was able to be out more than I would otherwise.

Since I started pacing and using a wheelchair, my mental state is better, I am able to soak up nature, and I’m starting to be able to take short (2-5 minute) walks.

Kimberly Gilbert

In the beginning, I resisted. But with my symptoms, if I overdo it, I lose the ability to walk by myself, and I often look like I’m intoxicated because of my poor coordination. First I purchased a cane, then a walker, and eventually a wheelchair.

I have found that a wheelchair helps me and people no longer look at me as if I were drunk. A wheelchair is just a tool, and a useful one at that. I too am obese, but I don’t care what people think: if I need my wheelchair to help me get through any event, I use it.

Lily

If you are asking the question, you need one 🙂 It can be a great tool to help you avoid crashes and keep from worsening your condition. I’ve met lots of folks with ME who regret waiting too long to get one. I use a walker and a mobility scooter and I love them.

If you live in the US, you may also wish to check out: How to Get a Wheelchair or Scooter Through Insurance or How to Pay for a Wheelchair or Scooter Without Insurance.

Pat

If a wheelchair improves your quality of life, use one. I’ve used a wheelchair, a walker and walking poles at different times. I always carry a folding stick as I can’t walk very far now and it’s amazing how much farther I can go using it.

It’s so hard to gauge what is too much activity when you feel you can do it. You have to listen to your body. I found that if I overdid it, I’d become so exhausted that I couldn’t relax enough to sleep. By trial and error, I learned to do less than I thought I could do. Now I have less crashes.

Di Kirk

I try to think of it like any other aid. We wear glasses if our ability to see is diminished or hearing aides if our ability to hear is not great.

For people with ME, not only is our ability to walk lessened, but the payback from walking too far will make us more ill. Doctors have many erroneous ideas about ME. The idea that a wheelchair is “giving in” or “de-conditioning” is one of these erroneous ideas.

Debbie

I never realized how self-punishing (and, yes, ableist) I was until I resisted using a wheelchair.

I use it whenever I have to stand for more than ten minutes. I can walk too but it’s uncomfortable, makes me sicker, and means I have to go home as soon as I get to the place that I’m going.

When I stand up to go to the bathroom from my wheelchair, my friends will jokingly say, “It’s a miracle.” I feel like I’m helping to educate people that illnesses and mobility exist on a spectrum. If people can learn that a disabled person can need a wheelchair only some of the time, then perhaps we are a bit closer to accepting nuance and variation in illness.

If you have to wonder about a wheelchair, it means you can benefit from it. It takes some getting used too, but its absolutely worth it to get to spend a bit more time in the world with those you love. Rock that wheelchair at the zoo!!

This illness takes so much from us. Let’s do whatever we can to make our lives better. Let’s be ME wheelchair revolutionaries and use them unapologetically whenever the f##k we want or need.

Lucy Owen

Accepting that we need a wheelchair or mobility scooter is a big step in coming to terms with our disability. Once we take that step, it opens up our world a bit. We can start doing things, just in a different way then how we did when well.

I have an electric mobility scooter, which is perfect for days out and for days when I need to walk further than I know I can. It’s not great on a rough surface or up hills so I’ve often needed my husband to push too whilst we’ve been out.

I bought a second-hand manual wheelchair this week and have just been out in it for the first time. It was a whole new experience!! I didn’t like not being in charge of it, and felt my husband was pushing me too close to other people. The wheels are quite thin too so every bump and ridge was felt. It was much harder for my husband too as he had to push the whole time. A mobility scooter is definitely better.

Debbie Clark Seely

I always felt really guilty and ashamed of using an electric scooter at Walmart (back when I could still go there) but then after watching a video from The Frey Life, I realized that it is totally OK for me to chose to conserve my energy. I get Post Exertional Malaise after any kind of walking.

Part of my shame is because I am obese, and people make all kinds of assumptions about me being too fat to walk, but I am to the point now that I just don’t give a care. I plan to buy a wheelchair because I have had gout in both feet on several occasions. Having a wheelchair would be a huge blessing!

Buffie Rogers LaRocca

I think there is such a weird view of wheelchairs in America: If you can walk at all, you shouldn’t use one at all! I recently rented a wheelchair at both at an aquarium and a zoo, and had the best day with my family for the first time in years. I’m a fan of the part-time user!

Cara Henderson

This is one of my biggest regrets. If I could go back to my teens and twenties, I’d use a wheelchair without question. Back then, I was too worried about feeling and looking like an ill person (as if that’s a negative!), so I was stuck indoors instead of getting out.

I should have said: “A wheelchair will not make me more ill. It will help my health stay where it is. It will help brighten my mood as I love being out of doors so much.” However, I just couldn’t. I had no idea of how ill I would soon become, as I knew of no one else with severe ME.

Now I am severely bedbound. My electric wheelchair is in the spare room, barely used, as it was too late when I bought it. I know I should have been in a wheelchair every single time I left the house. That way, I could have *enjoyed* being out whilst conserving energy.

That said, I believe in recovery and as soon as I am able, my hubby can put the chair in the back of the car and off we’ll go, to any place at all! I will soak up every moment! 💛💛💛

Learn More

Not sure if you have ME? Take a look: How Do I Know if I Have ME?

Facebook Group: Beyond the Ramp – Getting Out With ME

One way to tell if a wheelchair might help you is to practice a technique called “Pacing with a Heart Rate Monitor.” If walking causes your heart rate to go above your anaerobic threshold, this could be a sign that you are overexerting yourself by walking: How to Practice Pacing

While many people with other illness benefit from exercise, people with ME can actually be damaged by physical activity. Stay safe out there: What Should I Do When Someone Tells Me to Exercise or Be More Physically Active?

Facebook Group: Beyond the Ramp – Getting Out With ME

But wait! There’s more! A wheelchair can be a great tool for avoiding crashes and improving your quality of life. There are many other tools that can also help: How To Save Spoons

Artist: Elizabeth D’Angelo

How Getting a Wheelchair for My Chronic Illness Changed My Life

Health and wellness touch each of us differently. This is one person’s story.

“You’re too stubborn to end up in a wheelchair.”

That’s what an expert physiotherapist in my condition, Ehlers-Danlos syndrome (EDS), told me when I was in my early 20s.

EDS is a connective tissue disorder that affects pretty much every part of my body. The most challenging aspect of having it is that my body is constantly getting injured. My joints can sublux and my muscles can pull, spasm, or tear hundreds of times a week. I’ve lived with EDS since I was 9 years old.

There was a time when I spent a lot of time pondering the question, What is disability? I considered my friends with visible, more traditionally understood disabilities to be “Real Disabled People.”

I couldn’t bring myself to identify as a disabled person, when — from the outside — my body could otherwise pass as healthy. I viewed my health as constantly changing, and I’d only ever thought of disabilities as something that was fixed and unchangeable. I was ill, not disabled, and using a wheelchair was only something that “Real Disabled People” could do, I told myself.

From the years pretending there was nothing wrong with me to the time I’ve spent pushing through the pain, most of my life with EDS has been a story of denial.

During my teenage years and early 20s, I couldn’t accept the realities of my ill health. The consequences of my lack of self-compassion were months on end spent in bed — unable to function as a result of pushing my body too hard to try and keep up with my “normal” healthy peers.

Pushing myself to be ‘fine’

The first time I ever used a wheelchair was at an airport. I’d never even considered using a wheelchair before, but I’d dislocated my knee before going on holiday and needed assistance to get through the terminal.

It was an amazing energy- and pain-saving experience. I didn’t think about it as something more significant than getting me through the airport, but it was an important first step in teaching me how a chair could change my life.

If I’m being honest, I always felt like I could outsmart my body — even after living with multiple chronic conditions for nearly 20 years.

I thought that if I just tried as hard as I could and pushed through, I’d be fine — or even get better.

Assistive devices, mostly crutches, were for acute injuries, and every medical professional I saw told me that if I worked hard enough, then I’d be “fine” — eventually.

I wasn’t.

I’d crash for days, weeks, or even months from pushing myself too far. And too far for me is often what healthy people would consider lazy. Over the years, my health declined further, and it felt impossible to get out of bed. Walking more than a few steps caused me such severe pain and fatigue that I might cry within a minute of leaving my flat. But I didn’t know what to do about it.

During the worst times — when I felt like I didn’t have the energy to exist — my mom would show up with my grandma’s old wheelchair, just to make me get out of bed.

I’d plonk down and she’d take me to look at shops or just get some fresh air. I started using it more and more on social occasions when I had someone to push me, and it gave me the opportunity to leave my bed and have some semblance of a life.

Then last year, I got my dream job. That meant I had to figure out how to go from doing next to nothing to leaving the house to work for a few hours from an office. My social life also picked up, and I craved independence. But, yet again, my body was struggling to keep up.

Feeling fabulous in my power chair

Through education and exposure to other people online, I learned that my view of wheelchairs and disability as a whole was wildly misinformed, thanks to the limited portrayals of disability I saw in the news and popular culture growing up.

I started to identify as disabled (yes, invisible disabilities are a thing!) and realized that “trying hard enough” to keep going wasn’t exactly a fair fight against my body. With all the will in the world, I couldn’t fix my connective tissue.

It was time to get a power chair.

Finding the right one for me was important. After shopping around, I found a whizzy chair that’s incredibly comfortable and makes me feel fabulous. It only took a few hours of usage for my power chair to feel like a part of me. Six months later, I still get tears in my eyes when I think about how much I love it.

I went to a supermarket for the first time in five years. I can go outside without it being the only activity I do that week. I can be around people without being terrified of ending up in a hospital room. My power chair has given me a freedom I can’t remember ever having.

For people with disabilities, a lot of conversations around wheelchairs are about how they bring freedom — and they really do. My chair has changed my life.

But it’s also important to recognize that in the beginning, a wheelchair can feel like a burden. For me, coming to terms with using a wheelchair was a process that took a number of years. The transition from being able to walk around (albeit with pain) to being regularly isolated at home was one of grief and relearning.

When I was younger, the idea of being “stuck” in a wheelchair was terrifying, because I connected it to losing more of my ability to walk. Once that ability was gone and my chair gave me freedom instead, I viewed it completely differently.

My thoughts on the liberty of using a wheelchair is counter to the pity wheelchair users often get from people. Young people who “look fine” but use a chair experience this pity a lot.

But here’s the thing: We don’t need your pity.

I spent so long being made to believe by medical professionals that if I used a chair, I’d have failed or given up in some way. But the opposite is true.

My power chair is a recognition that I don’t need to force myself through an extreme level of pain for the smallest things. I deserve the chance to truly live. And I’m happy to be doing so in my wheelchair.

Natasha Lipman is a chronic illness and disability blogger from London. She’s also a Global Changemaker, Rhize Emerging Catalyst, and Virgin Media Pioneer. You can find her on Instagram, Twitter and her blog.

How to Determine if You Need Wheelchair Assistance

If you suffer from chronic pain or have a debilitating injury or illness, it is possible that you may eventually find yourself in need of wheelchair assistance. However, it can be difficult to know when that time actually comes. There are several signs that may let you know that now is the time to begin using a wheelchair, even if it’s only on occasion. Below you will find a few things to take into consideration when making your decision.

The first thing to consider is how much you struggle on a day-to-day basis. If you find it difficult to get around, whether in your home or when out in public, then using a wheelchair may be the answer to your problems. There is no reason to suffer and cause yourself more pain and strife when the use of a wheelchair, even on a part-time basis, could relieve your pain and exhaustion. If it has become difficult for you to complete even basic everyday tasks without pain or extreme fatigue, wheelchair assistance may be inevitable.

Another thing to take into consideration is how much you are missing out on because of your condition. If you have begun avoiding social interactions or family gatherings because it is too exhausting or painful physically, wheelchair assistance could essentially give you your life back. By using a wheelchair you may be able to attend events and visit loved ones on a regular basis again. In this way, a wheelchair can offer you freedom, rather than confine you as you may have previously thought.

If you were quite active before your illness or injury, a wheelchair can potentially give you the ability to enjoy activities that you did in the past. Whether your interest was in sports, hiking, fishing, or simply enjoying a long, leisurely stroll, there is a wheelchair out there that was designed with that activity in mind. Activities that you may see as virtually impossible for you right now can potentially be in your reach once again with wheelchair assistance.

While it can be difficult to feel as if you are giving up or admitting defeat, a wheelchair can offer much needed assistance and can protect you from injury in more ways than one. If you have begun to feel weak and exhausted more frequently, you are putting yourself at risk of a dangerous fall or another serious accident. Allowing yourself the time to rest by using a wheelchair off and on throughout the day may be all that you need to do to keep yourself safe.

Finally, if you just aren’t sure if it’s time to invest in a wheelchair, speak with your doctor. They will be able to assess your situation and determine if a wheelchair can provide much needed assistance, or if you can continue on the path that you have been on. Using a wheelchair doesn’t necessarily have to be a permanent solution, but it can certainly be helpful in more difficult times. Consider the information above to determine if you should begin to rely on wheelchair assistance in your own life.

MS and the Decision to Use a Wheelchair: Is It Time?

If you have multiple sclerosis (MS), chances are you’ve considered the possibility that someday you might need to use a wheelchair — a thought that may fill you with dread, or at least some apprehension. After all, wheelchairs are sometimes viewed as a last resort for people who have tried, but abandoned, other mobility aids, signifying an advanced degree of disease progression.

In reality, there are many different ways to use a wheelchair, just as there are different wheelchair options to choose from. And while it’s true that needing to use a wheelchair may indicate that the multiple sclerosis has progressed to a certain point, you may be surprised at the improvement it can bring to your quality of life.

But before you decide to use a wheelchair, you’ll need to consider your strengths and limitations, what you hope to gain from using the chair, and how it would fit into your daily life.

Intermittent vs. Full-Time Wheelchair Use

Most people with MS start using a wheelchair — either a manual chair or a powered scooter — just for certain activities outside the home rather than for full-time use, according to Nancy Lowenstein, an occupational therapist and clinical associate professor at the College of Health and Rehabilitation Sciences at Boston University in Massachusetts.

“You might get a scooter because fatigue is a big issue, and you know you can’t propel yourself in a manual chair very far,” says Lowenstein. A manual chair requires “strength and endurance to propel it yourself, if you are going to be independent.”

But a manual chair may be a good choice, Lowenstein notes, if you plan to use it mainly for outings with friends or family, such as going to restaurants, museums, or sporting events. In these situations, you’ll always have the option to have someone push you, as well as help you in and out of cars or public transportation.

Manual wheelchairs also have the benefit of being easily stowed in cars. While most mobility scooters can be taken apart and stored in the trunk, this tends to be more cumbersome than collapsing a manual chair, says Lowenstein.

Insurance Coverage and Planning for Future Needs

Even if you think you need a wheelchair only for occasional use now, you may end up using it regularly at some point in the future. That’s why a key consideration in any wheelchair purchase should be your insurance coverage, says Janet Curran Brooks, a senior lecturer in the department of occupational therapy at Tufts University in Medford, Massachusetts.

If your insurance has limits on the number of mobility devices it covers within a certain span of years, “Then you need to work with your physician or physical or occupational therapist to try to predict the trajectory of your condition,” says Dr. Brooks.

This may be an especially important factor if you’re debating getting either a scooter or a motorized wheelchair. If the MS is progressing relatively quickly, says Lowenstein, then a motorized wheelchair may be a better choice than a scooter, since using a scooter successfully requires core body strength that you may not have in a few years.

Are You Ready for a Wheelchair?

There are a few ways someone with MS might start using a wheelchair: as an optional tool to help conserve strength and reduce fatigue, as a necessary tool for day-to-day mobility, or as an aid to help reduce the risk of falling.

“One of the things we ask clients to identify is what really matters to them,” says Brooks. Some people, she notes, “value being upright, walking, using a walking device. And that’s where their energy may go.”

“Somebody else,” Brooks says, “might decide, ‘What I do when I get there is what matters most to me. I don’t care how I get there.’”

The choice to expend energy on walking with devices, or to reduce fatigue by using a wheelchair, says Brooks, is “highly individualistic, and a therapist or a physician should never tell someone what they should do” — unless you’re frequently falling while using standing devices, in which case, she says, “the choice may be taken out of your hands.”

Denial Can Lead to Delay

One person who put off using a wheelchair for as long as possible is Nicole Lemelle, a New Orleans resident who was diagnosed with MS at age 26 in 2000, and started using a wheelchair in 2010.

At first, Lemelle used a cane to help her walk when she felt tired. “As my fatigue grew, part-time use changed to full-time. At that point I should have been using a wheelchair,” she says. “I was in denial, and I put myself in a lot of dangerous situations because of my balance issues and weak leg strength.”

Robert Shuman, a resident of Marblehead, Massachusetts, who was diagnosed with MS at age 35 in 1982, used a wheelchair on occasion for about 20 years before starting to use it regularly 10 years ago. He says that “denial and pride” delayed his decision to use it full time.

“I thought walking around with a walker somehow looked better than being in a wheelchair,” says Shuman. “Now, I realize I looked like an upside-down ‘L,’ sort of bent over.” He wishes now, he says, that he’d listened to his physical therapist and made the change sooner.

With the Right Device, the World Opens Up

For Mitch Sturgeon, a resident of Portland, Maine, who was diagnosed with primary-progressive MS in 2001 at age 38, it took seeing a TV ad for a fancy all-terrain wheelchair to consider using a chair full time, rather than the scooter he was using a lot at the time.

After trying out the all-terrain wheelchair, Sturgeon says, he asked the company rep, “’Do I really need a wheelchair yet?’” He was shocked when the rep replied that he might need a chair with more therapeutic features — essentially, that he was overdue for a wheelchair.

Sturgeon quickly learned to appreciate using a wheelchair. “Even though a new mobility device like a wheelchair marks a progression in the disease,” he says, “as soon as you adopt it, the world opens up to you again.”

Finding the Right Wheelchair

To decide whether a manual wheelchair, a motorized wheelchair, or a motorized scooter is the best choice for you, you’ll need to take an account of your physical state as well as your preferences and lifestyle.

It’s never a good idea to make this decision alone, says Lowenstein. You should work with a physical or occupational therapist, she says, “who is well versed in mobility devices,” and who can help “look at the long-term impact, the person’s function, can they drive it, and is this the best thing for them at this time.”

Brooks notes that while motorized devices are a good fit for many people, they may be limiting in certain ways due to their weight. “What does that do to your independence getting in and out of a car, getting on and off any kind of public transportation? You have to think about your environment,” she says.

On the other hand, if you’re considering a manual chair, “You have to work with your physical or occupational therapist to take a look at your upper extremity status,” says Brooks. “Do you have the strength to propel it? What size wheels do you need? How tall a back do you need?”

Shuman switched from a manual to a motorized chair about a year and a half ago, and found that the switch came with both benefits and drawbacks. Since he no longer makes transfers to other devices, “I’ve reduced my calls to EMTs for lift assistance from maybe three to four times a month to zero,” he says.

“The downside,” says Shuman, “is that I’ve lost arm strength, because I don’t keep up with my weight lifts as much as I should.”

One user of a motorized wheelchair who wishes she hadn’t made the switch from a manual chair is Joann Dickson-Smith, an Atlanta resident who was diagnosed with MS at age 35 in 1994. She started using a manual chair intermittently in 2005, then switched to a motorized chair in 2007.

“It wasn’t a good move for me, because I wasn’t that debilitated when I started using the wheelchair,” she says. “In fact, I would like to transition back to my manual chair. That’s my goal.”

Dickson-Smith finds her motorized chair cumbersome, since it requires a special van to transport and barely fits through some doorways. She also thinks it has contributed to her weakness, since she no longer uses her own muscles to get around.

“If there’s any way for you to move using the body strength that you have, I would suggest using it,” Dickson-Smith says.

Is a Scooter an Option?

While using a motorized scooter as a full-time device isn’t a common practice, it’s worked for 32 years for Shelley Peterman Schwarz, a resident of Madison, Wisconsin, who was diagnosed with MS at age 31 in 1979. Her scooter is fitted with a custom seat with supports and a special cushion.

Some medical professionals “have wanted me to use a $30,000 to $40,000 wheelchair because of my level of disability, but I continue to make my scooter work for me,” says Schwarz. “I found that I wasn’t as independent in those huge wheelchairs as I was with my scooter,” she says, because they’re larger and heavier than the scooter.

The Right Cushion Helps, Too

Another factor to consider with any wheelchair is the cushion. Shuman says that finding the right cushion was vital to his comfort, and was done with the help of technicians who used a special device to read pressure points on his seat as he operated the chair.

“Some of them are sort of crazily expensive,” Shuman says of cushions. “But it really is as important as the chair.”

A Means to an End: Better Quality of Life

When choosing a device, says Brooks, remember that the goal is to improve your quality of life by helping you do the activities you care about.

“I would love it,” she says, “if using a walker, a cane, a manual chair, or a power chair is all just seen as a means to an end. And the end should be purposeful engagement in things that matter to you.”

Power Wheelchairs for Multiple Sclerosis

Multiple sclerosis (MS) is a chronic, progressive, auto-immune disorder within the central nervous system. MS affects neurons, the cells of the brain and spinal cord, that transport information and allow the brain to control the body. Multiple sclerosis symptoms may include the loss of muscle control, vision, balance and sensation. MS primarily affects adults between the ages of 20 and 40 and is more commonly found in women than men. Multiple sclerosis types include clinically isolated syndrome, (CIS), relapsed-remitting (RRMS), secondary progressive (SPMS) and primary progressive (PPMS).

Due to the types of multiple sclerosis and progression, an individual may require the use of mobility aids such as a cane, walker, leg brace, manual wheelchair or mobility scooter. Some MS patients require power mobility to complete Mobility Related Activities of Daily Living (MRADLs), such as cooking, grooming, reaching and transferring. These patients may use a manual wheelchair for part of the day, but due to fatigue, require the use of a motorized wheelchair.

If you or a loved one have multiple sclerosis, Quantum can provide products to meet individual needs and maintain independence and mobility. An MS patient can be fitted with a power wheelchair base that is compatible with specific components that meet the patient’s mobility and quality-of-life needs. The power base should also be easily adaptable, due to the progressive nature of multiple sclerosis. The Edge 3 electric wheelchair is available with iLevel® power adjustable seat height, allowing users to drive at 4.5 mph while elevated so they can safely cross streets and parking lots. iLevel raises multiple sclerosis patients up to 12 inches, enabling them to complete MRADLs. The Edge 3 also comes standard with LED motorized wheelchair fender lights, allowing users to see and be safely seen.

With progressing multiple sclerosis symptoms, a patient may need power positioning on his or her power wheelchair to enhance comfort needs. TRU-Balance® 3 Power Positioning Systems on electric wheelchairs are highly adjustable and offer an array of medical benefits, including pressure relief, increased sitting tolerance, independent repositioning and positioning for improved breathing and function. Available options on TRU-Balance® 3 include power tilt, power recline, iLevel, power articulating leg rests and power articulating foot platform.

Individuals with multiple sclerosis may benefit from Stealth Products® wheelchair cushions. Each cushion provides a different function, such as general use and skin protection and positioning.

If an individual has more severe multiple sclerosis symptoms, Q-Logic 3 Advanced Drive Controls may be beneficial. The control system is user-friendly and highly customizable, maximizing user independence. The optional iAccess component features programmable push button and toggle options. Patients with limited muscle control can more easily customize their seating.

OMG! I’m gonna be in a wheelchair…

Now, by this title, I don’t want anyone to be offended by it, let me just start off by saying that. But when I was first diagnosed and learned more about what multiple sclerosis was and what my future may or may not become, I was freaking out.

So I guess this blog is for those who have freaked out like I did. With MS, comes uncertainty of our future and if we are going to be disabled and if so, how long till we are dependent upon a mobility device.

Let me just say that, I know how you feel. The Internet can be full of such wonderful information but it can also be the devil. I read a lot of information and I also looked into personal videos on YouTube about people living with MS. I’m not saying that everything I found was negative or scary, but with the emotional state I was in from just hearing I have MS, I wished I could of un-seen some of things I did.

Now, with that being said. A few months after I was diagnosed, I did end up in a wheelchair. HOWEVER, I am not in a wheelchair as of today. I was in a wheelchair, due to a really bad flare, since I had just been recently diagnosed, and the medication I had started to ‘help slow progression’ was not fully in my system, in order to work like it has been proven to in clinical research. I was told that I had lesions on my Brain Stem, which I found out, if attacked, does cause difficulties.

So, now going back to my whole Internet searching after I was diagnosed. I’m glad that I had a little bit of ‘know how’ in what I should and shouldn’t be fully trusting when reading about multiple sclerosis. I did find the National MS Societies page, which had a lot of information. But, I wanted to talk to other people that have MS, but I just didn’t want to go to one of those Local Chapter meetings… because I had it in my mind that, I didn’t want to see what I was going to end up like… does that sound familiar? (Again, not trying to be offensive to anyone w/ that statement.)

So, with being newly diagnosed at the age of 22, I went searching for a chat room, so that I could ‘talk’ to people like I wanted to do, without having to SEE them. If this is something you are looking for, I would highly suggest going to MSWorld.org. This is where I volunteer, and what really got me involved in the MS community the way I am today. I can’t even describe the support I received, and how much easier it was on me to ‘talk’ with others, without having to go to a local meeting, or something like that. I mean, let’s face it, it’s scary when you’re first diagnosed and you don’t really know where to even start with your search of information.

With all that being said, lets get back to the whole, me being in a wheelchair thing. I’m not going to sit here and downplay the issue. I was scared out of my mind and was really depressed. But I did go through IV steroids, physical therapy, occupational therapy and even speech therapy (speech therapy because I had issues swallowing and facial numbness, which made my speech ‘off’. Okay, that is kinda downplaying it too much. But don’t freak out… My right side of my face was paralyzed, that’s what caused the swallowing problem). I am going to sit here and tell you that, I am no longer in that situation. I can walk/talk just fine now, but apparently I have an accent cause I’m from the South, but I don’t hear it lol

So I think it goes to show that with MS, nothing is ‘for sure’… we don’t know what’s going to happen with our MS down the road, but we also don’t know what’s going to happen next week in general.

Now, please DON’T focus on any of the negative things that you’ve read in this blog that have happened to me because that was over three years ago, and I am no longer that same person. I’m not going to say that I’m not affected by my MS everyday, because that would be a lie, but after all that happened to me, I am determined to fight and be strong and be independent. I don’t see my ‘relapses’ as a finalization of what I’m going to be like for the rest of my life, but rather a speed bump in my battle with MS.

xoxo

Ashley Ringstaff

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Insurance companies will not pay for a wheelchair or scooter unless it is needed inside your home. (After you receive the chair, you can also use it outside).

For this reason, many people are denied wheelchairs. And many people never even apply.

Before you get denied, or before you give up even trying, here’s a few questions you to ask yourself.

Pop Quiz

“When I am experiencing severe weakness or fatigue….”

🌷Are there times when I need to brush my teeth but don’t brush my teeth?

🌷Are there times when I think I should bathe, but I don’t bathe?

🌷Are there times when I’d like to change my clothes, but don’t change my clothes?

🌷 Are there times when I skip or delay meals?

🌷 Am I hungry but wait to eat?

🌷 Do I need to pee but wait to pee?

🌷 Do I use up all my energy for the day walking around my house, and then can’t do other things I need or want to do?

Bonus Points: Special Questions for ME or “Chronic Fatigue Syndrome”

🌷 Does walking in my house cause my symptoms to get worse?

🌷 Would it help me to read this: Potential Dangers of Exercise and Activity for People with ME?

🌷 Would it help me to read this: How Did You Get Others to Understand That Activity Makes You Worse?

🌷 Would it help me to read this: How Do You Know If You Need a Wheelchair?

🌷 Would it help me to read this: How Do I Know if I Have ME?

Answer Key

If you answered “yes” to any of the above, you may wish to consider whether an indoor wheelchair might improve your quality of life.

Sometimes we get so used to living with less, we lose site of the fact that our lives could be better or our needs could be met.

Next Steps?

How to Get an Electric Wheelchair or Scooter Through Insurance

How to Get Medical Equipment Without Insurance

What Do You Think?

Updated July 2018. Please comment below with stories, ideas, questions or suggestions. Please let us know if any links on this page stop working.

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Wheelchairs come in different size, shapes and varieties to suite the needs and requirements of users. Each patient will have varying levels of functionality. A patient that suffers from rheumatoid arthritis requires a different wheelchair and may not need all the features as someone who suffers from quadriplegia. Getting out and about is no longer a pipe dream to anyone who may be of limited mobility. With just a little bit of planning and understanding of what’s available to wheelchair patients, experiencing all that this wonderful world has to offer is within our grasp.

With age the prevalence of injury or disability increases. Use of a wheelchair can help maintain independence, mobility and quality of life. Many people may think of a wheelchair just as a seat with wheels to get pushed around. That couldn’t be far from the truth. Manual wheelchairs can be manipulated by the user or by a caretaker or even tilt and recline for those who need pressure relief. Power chairs are run by rechargeable batteries and can make the user extremely mobile. Understanding what your needs are can help you select the right wheelchair for you.

Manual/Standard Wheelchair

A standard or manual wheelchair is probably the most familiar to everyone. Pushed or wheeled by hand by the user, they are manually manipulated and can often be incredibly portable since many can be folded and transported to where they may be needed. To maximize the benefit of their portability, many models are made of lightweight materials to minimize weight. They feature a foot/leg rest as well as armrests that can come in desk length or full-length allowing them to be customized to the user’s needs. Their seating options usually range from 16-20 inches to accommodate a wide variety of body types. Some wheelchairs have multiple seat widths, seat-to-floor heights and arm styles. You can also opt for narrow, which is usually no more than 16 inches. With permanent arms and a seating option up to 20 inches some wheelchairs provides safe reliable transportation with a weight limit of 250 pounds.

Lightweight Wheelchairs

Many people feel that due to their injury or handicap that this lack of mobility means that they cannot travel. Lightweight wheelchairs are perfect for those who like to travel. They offer many of the same options as the basic or standard wheelchair, but some offer a removable wheel option as well as an adjustable back. This allows the wheelchair to be stored in a trunk or maybe even a backseat depending on the vehicle being used. This gives patients the freedom to be mobile and independent. For convenience and flexibility, these wheelchairs provide height adjustable armrests, which are removable. For those that might be looking for a little bit more performance in their wheelchair lightweight manual wheelchair provides stability to meet each user skill level. Its dual axle positioning allows for different seat to floor heights as well as an offset axle position for an adjustable center of gravity to increase maneuverability and stability.

Bariatric Wheelchairs

Sometimes due to a medical condition, patients require a wider chair that needs to support greater weight. The added width and strength of a bariatric wheelchair allows for a better fit and safety for larger patients. While most wheelchairs can safely support approximately 300 pounds, a bariatric wheelchair can handle heavier patients. Bariatric Manual Wheelchair can have a maximum weight capacity of 700 pounds as well as proven mobility and stability. For a chair that is designed for the active individual, the bariatric wheelchairs provide the strength needed while still providing streamlined books. Much like other chairs, bariatric wheelchairs are available to the public in both manual and powered versions. These chairs allow bariatric patients freedom and independence they would normally have lost.

Transport Wheelchairs

Transport wheelchairs are built for transport and not self propulsion, therefore requiring a caregiver. Typically they offer a 12 inch rear wheel that is not designed for the user to reach down and propel them forward. Many offer hand brakes so the caretaker can have greater control and may have a folding back for easier storage. Transport wheelchairs may not have as many options available as others and seating options are limited. They are perfect for safe comfortable patient transport.

Reclining Wheelchairs

One feature that can be important to some users is the ability to recline. This allows the user or caretaker to avoid pressure sores and can provide comfort. A versatile, lightweight reclining wheelchair can come with triple chrome plated, carbon steel frame provides strength and durability as well as improved maneuverability and stability. For someone who might be looking for a wheelchair that can recline to a full 180°, they should go for a reclining wheelchair that has urethane rear tires mounted on dual sealed precision bearings for a smooth comfortable ride and is available with multiple seat widths, arm styles as well as front riggings.

Power Chairs/Scooters

Power chairs and scooters are powered by rechargeable batteries and can be used by just about anyone who has some form of hand/arm control. Even those affected by quadriplegia can use a power chair as long as they are able to move their head. For simpler handling, power chairs have a tight turning radius which is perfect for in-home use. No matter what physical challenge you may face, there is no reason to sit put.

With many adaptable options available, your physical therapist may opt for a curved back for added trunk stability or maybe leg extensions to allow the user passive range of motion as well as minimizing pressure points on susceptible areas of the foot. Some power wheelchairs options include rear wheel or center wheel drive, chairs that can stand up the user, portable power chairs for travel, or even chairs that fold up. The many wheelchair options available to patients today can allow anyone to maintain their freedom to enjoy this crazy world we live in.

Dr. Haseena Hamdani, MBBS, DGO, PGD Endocrinology and Diabetes (USW) is a Gynaecologist, currently practicing in Gaborone, Botswana since last 17 years. Prior to setting up this clinic she has worked in India as well as in Zambia, as a Gynaecologist and Obstetrician and was also associated with an Infertility center. She is also an online tutor for University of South Wales.

Find her on LinkedIn

Is it wrong to buy and use a wheelchair just for fun?

Is it wrong to buy and use a wheelchair for fun?

Well.

So much to talk about here.

First, the practical aspect.

I hope you have a spare $8k. This is from the invoice of my custom wheelie, that, shall I remind you, has no motors or generally breakable parts.

Here’s what that looks like without me in it.

Only reason I got a discount of that magnitude was because I paid for it up front in cash, after having my need for it certified by my doctor. Insurance didn’t pay a cent. I tried, of course. Medicare generally doesn’t pay for custom wheelchairs unless you absolutely cannot function without it within your own home. It’s irrelevant to them that you can’t ride the bus or shop for food or see the doctor without the wheelchair. It’s all about whether you can function without it at home to any degree.

It’s insured, as instructed by the wheelchair people, for $10k, because a second one made at speed plus the interim rental would exhaust that $10k. It’s insured because stealing is a serious problem, and because breaking would be a castatrophic problem for my life. My old rental got stolen twice. Pinkie has a permanent GPS tag I can track anytime on my iPhone, which makes me feel better when it has to be loaded on planes without me.

Want the traditional folding rental wheelchair? That itself costs Medicare a cool $1200 that they indeed will pay for. I don’t know what the street price is. Undoubtedly more.

What is using a wheelchair like? I did write about that here: Rebecca Wilova’s answer to How long does it take to get used to a new wheelchair?

Have at.

Here’s the visceral part.

People like you are the problem.

People like you are why people think it’s okay to ask me whether I want to get better.

People like you are why the general public doesn’t understand that wheelchair users comprise a vast spectrum of physical issues. Paralysis is but one small subset. I can walk very small distances, using a walker or a cane. I vastly prefer the walker of the two, but logically, I can’t take the walker if I’m already using the wheelchair. So. I actually have a folding cane on the seat of my wheelie with me at all times, because it makes things like the bathroom that much safer. It makes transferring safer. It makes my life that much more safe.

It also paradoxically makes people less bitchy if I get up for any reason because obviously if I get up unaided, I must be a faker right?

My specific diagnosis doesn’t matter. What matters is that it’s there, it’s my life, and having a wheelchair means I can carve out a life on my own terms.

And you want to have fun.

A colleague who is quadriplegic recounted a medical school admissions officer telling him, “I’m afraid that you will not meet the technical standards for admission.” Although steeped in bias and probably illegal, this response was at least more direct than the more common form of discrimination where otherwise strong applicants with disabilities simply do not receive an interview or a call back. As our peers are accepted into prestigious schools and academic positions, we sit on the sidelines, left to question whether the fault lies with us or the system. Many give up their aspirations of a career in medicine altogether, electing to pursue work more “traditionally suited” for people with disabilities. Others lose sleep, questioning whether it was the right decision to disclose their disability in the application materials.

Anyone can enter, at any time, the minority group of people with disabilities. The most common cause of new, adult-onset disability is — simply put — aging. Physicians are often reluctant to disclose new-onset or progressive disability (like loss of hearing or vision, or reduced mobility) because of the fear of being stigmatized; medicine, after all, is still dominated by the prototype of physical prowess.

Dr. Lisa Iezzoni, a professor of medicine at Harvard Medical School, has been an important mentor to me for many years. She recounted her experience as a medical student at Harvard in the early 1980s, a decade before the passage of the Americans With Disabilities Act. In her first year at the medical school, after experiencing some physical and sensory symptoms, she was given a diagnosis of multiple sclerosis. Late in her third year, after a fall, she started using a cane, but her aspirations to pursue an internal medicine residency remained, despite the overt discouragement she received. At a student-faculty dinner, an influential professor told her: “There are too many doctors in the country right now for us to worry about training a handicapped physician. If that means someone gets left by the wayside, that’s too bad.”

The medical school refused to write a letter of recommendation for her residency application, so she could not pursue the training required for clinical practice. She pursued health policy research instead and became the first female professor of medicine at the Beth Israel Deaconess Medical Center and now directs the Mongan Institute Health Policy Center at Massachusetts General Hospital. Despite having had an extraordinarily successful career, she sometimes wonders what could have been if she had been able to practice medicine.

My experience, more than two decades later, was vastly different. As an undergraduate at the University of Arizona, I became interested in applying to medical school. I investigated the application process and took coursework that would set me up for success. I studied, networked, did internships and engaged in various activities that would strengthen my application. Additionally, throughout this time, I nurtured my alter ego as an athlete, pursuing the sport of wheelchair racing, and ultimately represented the United States in three Paralympic Games.

In the fall of 2002, I applied to medical school, received interviews at several prestigious universities and was accepted to the Stanford University School of Medicine. Throughout this process, I never once feared that my disability would get in the way of success. I could focus on my academic performance rather than expending mental energy around concerns of hidden bias.

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