8 posts tagged “wheelchair”

Coping with Changes in Physical Appearance

Posted January 24th, 2013 by

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?

A cute hat can help to cover thinning hair or bald spots.  Image courtesy of Stock Free Images.

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 electric razor to improve ease and safety
  • Donating your hair to Locks of Love to put a feel-good spin on it

Have you discovered other tricks to help you deal with a changing appearance?  Join this ongoing discussion in our forum or share your experiences in the comments section.


Navigating the Healthcare System with Disabilities

Posted January 14th, 2013 by

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.

A potential issue for a disabled patient in a wheelchair:  transferring into the dentist's chair.

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).  None are ideal.  In comparison, other patients report that their medical facilities, including Veteran’s Administration (VA) hospitals, offer assistive equipment such as mounted ceiling lifts, slings and HoverMatts to facilitate safe wheelchair transfers.

Should all medical facilities be required to have these types of accommodations? Is it discrimination if they don’t? Share your thoughts and experiences in the comments section.


Not Recognizing the “New Me”

Posted December 10th, 2012 by

Are You Resistant to the Idea of a Wheelchair?

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.

So what do you do when you are suddenly the person being helped instead of the helper?  It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult.  It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.”  If you can manage the task yourself, speak up and say so politely, advises one patient.  Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member.  Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.

Can you relate to this common hurdle?  Join this insightful discussion in our forum or share your thoughts in the comments section.


Surviving Multiple Sclerosis (MS)

Posted June 13th, 2012 by

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 the challenge I must face. However, I will tell you how the monster can be defeated!

PatientsLikeMe Member and MS Mentor, Rick N

I do not perceive MS as burden, I see it as an opportunity to overcome. MS had me in a wheelchair for over two years. I was resigned to the fact that the rest of my life would be in this wheelchair. My first thought was simply, “Okay, if this is my life now, I am going to compete in the Paralympics.” So I climbed every hill in my wheelchair as my challenge, until I developed neuritis in both elbows requiring surgery.  That was the end of that goal.

But today, in spite of that setback, I am walking because of a positive attitude and a strong faith in miracles.

My faith in God’s will and guidance for me was ever clear. I made the best of my life as an example to all that “it’s not what happens to you, it’s what you make of it.” Never did I pity myself in that wheelchair. I went out and about under all circumstances. Until one day something of a miracle happened. Whatever it was, I will never know for sure, but I was able to get up and begin to walk. It wasn’t pretty, but I put one step in front of the other and suddenly I was walking again. Then I used my lawn mower to stabilize me. Before long I could walk longer and longer distances. That was almost two years ago and I walk normally today. We all must believe that God’s healing miracles happen everyday. I am living proof.

Attitude is everything, regardless of your afflictions. MS is powerful. So much that it can lead one to believe it is impossible to live a healthy and happy life. Nothing must ever stand in the way of true HOPE. With hope and faith, mountains can be surmounted. However, this does not come easily.

PatientsLikeMe Member and MS Mentor, Rick N

Where does my unshakable attitude come? I often sit quietly, restful and calm. The physical realm becomes in some way a dwelling place for my spirit within. Time well spent in the calmness provides rest from the physical aches and strains. My pain level is always high. It is just the world I live in now. What I have cultivated from MS is the spirit of adventure and conquering the unknown. Acceptance means much.

In 2008, I came across PatientsLikeMe. It was like finding a great pearl in the oceans. Suddenly, the loneliness of MS could be understood by some 150,000 members with the same vague symptoms that I have. To explain what life is like with this disease, there are no words to do justice. But PatientsLikeMe gives me the opportunity to chart all of my symptoms, medications, conditions and treatments. It also offers daily journaling, and most of all, a forum in which I can read and comment with members that are in need of compassion or solutions to their current problems. This is a resource where I can find the answers to all of the confusion that goes along with most chronic illnesses. I have most definitely found it a haven of comfort.

I want to thank all who have read this. I am not a writer nor have I the talent for words. I only wanted to express my feelings about MS and the values that the disease has brought me. Should there be a cure today, I would much rather opt for the continuance of this illness. Reward and treasures are mine that I could obtain nowhere else.


Life with ALS: What We’ve Learned

Posted December 20th, 2011 by

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.

Some of the Most Commonly Reported ALS Symptoms (and Their Reported Severity) at PatientsLikeMe

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:

How well do these interventions work?  Click on each treatment name above to read evaluations from hundreds of patients about the effectiveness, side effects, cost and more.  In addition to these various types of equipment, one of the most commonly reported treatments for ALS is Rilutek, the first prescription drug to be approved specifically for ALS.  While it does not cure ALS or improve symptoms, it may extend survival or the time to tracheostomy (the creation of an artificial airway in the throat), which occurs when a patient is no longer able to breathe on his or her own.  Currently, we have 1,124 patients taking Rilutek, with 293 treatment evaluations submitted.

Some of the Side Effects Our Patients Report for the ALS Drug Rilutek

What do patients say about this drug?  We leave you with a sampling of comments that patients have shared on their treatment evaluations.

  • “One day I was having tremors in my left arm. I took the Riluzole [generic name for Rilutek] and one hour later the tremors stopped. I know it is helping.”
  • “I made a decision that 10% increased lifespan from onset was not worth being very sleepy all the time. I would rather require far less sleep each day than live slightly longer.”
  • “It is a slight pain because you’re not supposed to eat for two hours before or an hour after, and I’m trying to keep weight on.”
  • “I think this extended my time by at least six months. I started taking it about two months after my diagnosis. I’ve been told it’s more effective when you start taking it early like I did.”
  • “Quit taking due to elevated enzymes in my liver. Drug caused increased hunger, protein cravings, and very sluggish feeling.”
  • “Currently purchasing under Medicare as a tier 4 drug. When in the doughnut hole, the cost is approximately $985 per month.”
  • “We can never know if Rilutek does any of us any good. If it doesn’t seem to be doing any harm, I believe it is better to take it than not to.”

This is just a sample of the wealth of experience and data to be found at PatientsLikeMe.  Dive in today to learn more about ALS.


Reflecting on National Disability Employment Awareness Month

Posted October 25th, 2011 by

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.

October Is National Disability Employment Awareness Month

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 workplace. Would you say your work is “supportive” and “inclusive,” as the Presidential Proclamation states is the goal?

Whether you’ve faced job discrimination or noticed a potential barrier at work, we encourage you to share your stories in the comments section.


Creating Wheelchair Awareness Through Photos

Posted October 18th, 2011 by

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?

Wheelchair Barrier 1:  A telephone pole occurs every 100 feet in the middle of sidewalk in Gamma's neighborhood, preventing those using wheelchairs from passing.

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.

Wheelchair Barrier 2:  This intersection has no "sloped curb," therefore anyone using a wheelchair cannot get from the street level to the sidewalk level.

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.

Wheelchair Barrier 3:  Many homeowners do not realize that putting their trashcan in the middle of the sidewalk blocks access for wheelchair users.

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. Thanks in advance for your contribution!


What Does It Mean When You Have Cold Legs?

Posted February 27th, 2011 by

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 legsJoin PatientsLikeMe and add your experiences to our growing body of knowledge.  Then, stay to exchange support and advice, research common treatments and learn from other patients like you.

Join PatientsLikeMe