wheelchair

From “What happened to you?” to “You’re so inspirational”: 5 ways Anne navigates stigma as a wheelchair user

Member Anne Thomas (AnneBT), a civil rights attorney turned professional storyteller, has shared her stories with everyone from elementary schoolers and medical students to corporate leaders and World Bank officials. Anne sustained a spinal cord injury in a car accident at age 18. Her wheelchair is often the first thing people notice about her, so she’s had to find quick and clever ways to navigate stigma. We asked her to share some common questions and comments she faces and how she handles them (hint: humor helps). In Anne’s own words… Stigma around disabilities and chronic illness abound in our culture. People often have no idea of the unconscious bias they communicate through their questions or reactions. As someone who has lived with a disability and chronic illness for over 40 years, I’ve seen it all. In the deep discomfort of the 1970s, people would ignore me and talk to the person I’m with (as if I’m not there) or ask me questions to satisfy their curiosity: “What’s wrong with you?” I’ve also enjoyed the more sophisticated post–Americans with Disabilities Act culture, where people now understand the emphasis is on the person – not the health issue – and have stopped …

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Coping with Changes in Physical Appearance

When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions.  But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience.  For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes?  Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention?  Most importantly, what can you do to still feel beautiful? Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues: Using attractive scarves or hats to cover thinning hair or bald spots Experimenting with different cosmetics to see what works best Treating yourself to a spa manicure and pedicure as a pick-me-up Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses Soaking in a scented Epsom salt bath to ease pain and relax Consulting with a hair stylist about better styles for thinning hair Using gentle, non-drying facial cleansers and lotions Switching to an …

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Navigating the Healthcare System with Disabilities

Are medical facilities prepared to meet the needs of disabled individuals?  It would seem reasonable to think so, but according to PatientsLikeMe members, that’s not always the case. For example, consider the case of a female patient using a powered wheelchair who doesn’t have the upper body strength to transfer herself out of the chair.  How does she transfer from the wheelchair to an exam table, dentist chair, mammogram booth or even a weight scale in the doctor’s office?  Assistance is required, yet according to our members, some medical facilities and doctor’s offices claim they cannot provide assistance due to liability issues (e.g., the risk of being sued by the patient or the risk of a worker’s comp claim due to a staff injury).  So what’s the patient to do? In a discussion in our Multiple Sclerosis Forum, patients with multiple sclerosis (MS) posited that the only immediate solutions appeared to be asking the provider to meet the patient at a nearby hospital (which not all providers will agree to do), changing providers (which is not always easy given insurance networks and geographic location), or switching to home healthcare (which can mean not getting to see your provider in person). …

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Not Recognizing the “New Me”

For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself.  According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help. Have you found yourself feeling resentful when family, friends or strangers try to assist with something? Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment? Have you worried that becoming someone who receives help is going to change your lifelong identity? If you answered “yes” to any of these questions, you are far from alone.  Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness.  And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it.  It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community.  This can be part of your self-image, as well as a source of self-esteem. …

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Surviving Multiple Sclerosis (MS)

It’s Men’s Health Week, and we’re featuring the perspectives of – you guessed it – men.  Following tiredoftired’s guest post about depression on Monday, we are pleased to present this poignant essay by longtime PatientsLikeMe member and mentor Rick N, who has lived with multiple sclerosis (MS) for 23 years. I am a 58-year-old man with MS.  It has often been a long, bewildering, and lonely journey, which has taken me to the valleys of sorrow and to the pinnacles of success. MS is not a death sentence, as some would say. Rather, it is an opportunity to inspire and show to the world that an incurable disease can be transformed into a blessing, an enduring promise that life can go on. MS is a slow and debilitating disease. It creates new challenges daily. Some days I forget that I even have the illness and can do most tasks and chores. The next day may find me with a trembling heart begging for mercy. Sometimes I think that the worst of MS is the unknown. I am currently diagnosed with primary progressive MS (PPMS). I awake with fears and anxieties. What is MS going to give me today? It is …

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Living with ALS: What We’ve Learned

Yesterday, our interview with ALS blogger and three-star member Rachael gave you a glimpse into what it’s like to live with ALS (Lou Gehrig’s disease).  Today we take a closer look using the data and experiences shared by our 4,844 ALS members, who comprise the world’s largest online ALS population. ALS, which stands for amyotrophic lateral sclerosis, is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Some of the most debilitating symptoms include progressive weakness, atrophy, fasciculations (muscle twitches), dysphagia (swallowing difficulty), and eventual paralysis of all respiratory function.  Other commonly reported symptoms are shown in the chart above. Given the severity of ALS symptoms, the life expectancy of an ALS patient averages two to five years from diagnosis, according the ALS Association (ALSA).  However, ALSA states, “The disease is variable, and many people live with quality for five years and more.”  Rachael, who is six years post-diagnosis and living a busy, active life thanks to assistive technology, is a perfect example. What does assistive technology entail?  For many ALS patients like Rachael, this involves the use of medical equipment to aid basic functions such as: Walking …

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Reflecting on National Disability Employment Awareness Month

Have your health conditions ever caused you to lose a job? Or prevented you from applying – or getting hired – in the first place? October is National Disability Employment Awareness Month, an event that aims to recognize the skills that those with disabilities bring to the workforce and promote employment opportunities and access for those with disabilities. The issue, of course, is that discrimination, employment barriers and higher rates of unemployment remain ongoing concerns for Americans with disabilities. Here’s what the White House’s Presidential Proclamation has to say about these troubling statistics: “More than 20 years after the signing of the Americans with Disabilities Act (ADA), individuals with disabilities, including injured veterans, are making immeasurable contributions to workplaces across our country.  Unfortunately, the unemployment rate for people with disabilities remains too high — nearly double the rate of people without disabilities — and reversing this trend is crucial.” – President Barack Obama Last week, we featured a post about wheelchair barriers and hazards and asked readers to appraise their neighborhood for wheelchair accessibility. Today, we ask you to think about the barriers to employment that might exist for people with disabilities – both physical and mental – in your …

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Creating Wheelchair Awareness Through Photos

For someone who uses a wheelchair, there are barriers and hazards everywhere – things that others may not see. But how do you raise visibility of the issue? One of our longtime MS members, gamma, decided that a photo essay of the obstacles that exist in her neighborhood (considered a wheelchair-friendly community) and others would the best way to illustrate the problem. “My hope is that when this presentation is completed I can get it into the hands of people that can use it to raise awareness about unsafe situations for the wheelchair or stroller user,” she says. What’s an example of a hazard or barrier? Wheelchair users at PatientsLikeMe – who number more than 1,300 and use both powered and manual wheelchairs – report having difficulty with potholes, cobblestone entrances, uneven sidewalks, narrow aisles, yellow bumps on ramps, heavy doors and more. But it’s easier to “see” these hazards and barriers than just list them. That’s why gamma is calling for photo submissions. Have you encountered something in your neighborhood that would pose problems for a wheelchair user? Snap a photo to aid this grassroots patient project. Then send it to shalegamma@aol.com along with your full name for credit. …

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person feels cold legs

What does it mean when you have cold legs?

Do you wonder if your cold legs could be a sign of something?  Sensations of coldness in the extremities – such as the feet and toes – may be the result of poor circulation, neurological disorders or temperature dysregulation. At PatientsLikeMe, where more than 120,000 patients are sharing their experiences with conditions, symptoms, treatments and more, approximately 137 patients report cold legs below the knee.  The majority rate this symptom as either “moderate” (42%) or “severe” (31%).   Interestingly, many of these patients list their primary condition as ALS (Lou Gehrig’s disease) or multiple sclerosis (MS), showing that this disconcerting symptom is common in these two neurological diseases (both of which can impair mobility). Two treatments that our patients report for cold legs are a powered wheelchair and a handicap/disabled parking permit.  What have you tried?  If you’ve experienced cold legs yourself, we encourage you to share your experiences to help other patients.  PatientsLikeMe’s unique data-sharing platform allows you to share detailed data about all types of treatments, interventions and lifestyle modifications that have helped you or simply had no effect. JOIN PATIENTSLIKEME TODAY Got something you’d like to tell others who are experiencing cold legs?  Join PatientsLikeMe and add your …

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