Last November, we shared our takeaways from TEDx Cambridge, a one-day event featuring 30+ speakers and lots of Ideas Worth Spreading (TED’s mission). The theme for this particular gathering was “Thrive.” How can we as individuals – and communities – not just survive but thrive?
One of the speakers to take a crack at that question was PatientsLikeMe Co-Founder and President Ben Heywood, who talked about the story behind PatientsLikeMe. In addition to sharing how it all began with his brother Stephen’s diagnosis with ALS, and what PatientsLikeMe is trying to do (“a revolution of openness”), Ben focused on how we can thrive as a company against big expectations – both external and internal.
Tune in to the video below to find out just that. Congrats to Ben on an inspiring talk – not to mention his standing ovation!
Many people look at a new year as a fresh start - a chance to begin new routines, eliminate bad habits and shift priorities. But not everyone believes in making resolutions.
Here are several different patient perspectives on approaching the new year:
“In 2012, I will make daily exercise a priority. Research reveals it is the one thing that may slow disease progression. It also improves overall health and makes us look and feel better.” - Patient with Parkinson’s disease
“I am filled with great hope for us all. In 2011, the pace of research breakthroughs increased dramatically. Most importantly, new research modalities using human tissue have been developed and are already contributing to major breakthroughs in understanding the biopathways affecting ALS. We are closer to a cure than ever.” - Patient with ALS
“My resolutions are pretty simplistic: Sleep hygiene and getting more (sleep, that is). Discontinuing the practice of making long and unrealistic to-do lists. I’ll start with sleep and go from there.” - Patient with major depressive disorder
“I have no expectations that this new year will be any better then the last. That way I don’t get disappointed so whatever does happen will be a bonus.” - Member with Wegener’s granulomatosis
“I’m going to cut out sugar and white flour foods. I know, I know, I’ve said this before and I’ve done this before, and it’s really hard for me, but it works for weight loss and being able to tap into my energy. So here we go again, looking towards a healthier 2012.” - Patient with fibromyalgia
“My resolution is to do more, no matter what it is. Smile more, laugh more, cry more, walk more, yoga more, love more, hug more, write more, hurt more, sing more, read more…you get the idea. I figure more means I’m alive, less may mean I’m dying.” - Patient with Parkinson’s disease
What will you be doing differently in 2012 - if anything? Share your thoughts in the comments section and read more about exercise, diet and sleep at PatientsLikeMe.
The holidays are a time for thinking about everything you hope and wish for in the coming year. They’re also a time for appreciating everything you already have. As our season’s greetings to you, we wanted to share a wish expressed by each member of our management team.
“I wish for every patient and family dealing with illness to know that they are not alone and that we are all in this together.” –Ben Heywood, President and Co-Founder
“I hope Santa brings you all your health data and that you will share it with other patients like you!” – Paul Wicks, PhD, Research & Development Director
“I wish for people to have the most happy, healthy, and joyous holidays filled with the unparalleled love from those who matter in their lives.” – David S. Williams III, Chief Marketing Officer and Head of BusinessDevelopment
“My wish for patients everywhere is that they continue to learn about their chronic conditions and keep updated on the latest treatments from multiple sources.” – Robert Palladino, Chief Financial Officer
“All of us at PatientsLikeMe wish you and those you love a holiday of joy and grace.” – Jamie Heywood, Chairman and Co-Founder
What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our December edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive.See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today.
MONTHLY MUSINGS
Can’t sleep this holiday season? It’s not just you. Did you know that…
More than 23,000 of you – nearly a fifth of all PatientsLikeMe members – report insomnia?
People with insomnia may also experience impaired function, mood issues (e.g. irritability, anxiety) and daytime drowsiness as a result?
There are two forms of insomnia: secondary (where it’s the symptom or side effect of something else) and primary (where it is its own disorder)?
Members with insomnia have shared their experiences via hundreds of treatment evaluations for prescription drugs such as Ambien, Trazodone, Seroquel and Lunesta?
Finally, here’s something else to know. Logging onto to the PatientsLikeMe forum in the dead of the night can be a great help. It may not cure your insomnia, but chances are, you’ll find several others who are awake and going through the same thing.
Here’s hoping your holidays are as restful and joyful as possible.
What’s happening in the forum in the midnight hour? Check out some of these insightful threads about insomnia below. Then jump in with your own questions and answers.
Thanks for your continued feedback about improving the site. Here are our top functionality enhancements for December.
UPGRADED LABS AND TESTS There are new labs and tests you can monitor at PatientsLikeMe. Use the search tool or browse the list to see what’s now available, including Blood Glucose, Ejection Fraction, PSA, Creatinine, AST and more. Don’t see the lab or test that you’d like to monitor? Email us at dataintegrity@patientslikeme.com with your request.
CLICKABLE CONDITION NAMES ON PROFILES You can now click on the condition name in the header of any profile, including your own, to view the new-and-improved condition page. Checking out someone’s profile and see a disease you don’t recognize? Simply click through to learn more. Or from your own profile, click through on any of your conditions to see who else has it, the most commonly reported treatments and much more.
It’s the most wonderful time of the year. Or is it?
The holidays can be a time of merriment and joy marked by festive parties and family reunions. But they can also be quite challenging.
Despite the great cheer advertised everywhere you look, some people find themselves struggling with stress, anxiety, loneliness and/or depression. This phenomenon is sometimes called the “holiday blues.” Add to that things like fatigue, insomnia and seasonal affective disorder (SAD) – which affect many PatientsLikeMe members on a regular basis – and you have the recipe for a perfect holiday storm.
Here’s a look at how our patients are attempting to cope with the stresses of the season:
“Seeing all the lights, the preparations, the shopping for the holidays makes me dread what is coming. I try to go to low-key places where there isn’t as much traffic and aren’t as many people. I try to play down the importance of everything so I don’t become so obsessed with choices and opinions. I take breaks. LOTS of breaks. I try to make sure I take them before I even become overwhelmed in the first place. And I try to find free things to replace some of the costs – either as presents or activities.” – Patient with major depressive disorder
“Having family meet on a major holiday is enough to upset the emotional applecart so to speak. Try just to do an average job of cooking, it doesn’t have to be perfect. Take a break when you can…get involved in objective projects: carefully following a recipe or cooking something with your mind fully on it can help calm panic attacks. If you are doing your best, that will be the best you can do.” – Patient with Parkinson’s
“It puts a lot of stress and pressure on me. I have three children who get a lil’ demanding, and then a husband who expects me to travel with three demanding children and then stay at relatives’ tiny houses, etc. The noise, the gossip, the fake hugs from relatives who really do not like me, it all honestly just ‘gets to me.’ But this year, I’m taking my power back by saying NO to the parts of the holidays in which I do not want to participate.” – Patient with bipolar I disorder
“Sometimes I get depressed because I’m usually one of those people who have to get assistance to give their children gifts for the holidays. I also get depressed because I don’t look the way I want to (I am overweight) and do not want people to see me like that. So the gatherings can be nerve wracking for me. [But] I am learning to let go of the ‘shoulds.’ Not easy, but it can be done. If I am really not feeling up to something (I get exhausted really easily), then I allow myself to not go, or not run the thing like I used to, or only bring one thing instead of 3 or 4. Pacing myself has been a good thing to learn.” – Patient with fibromyalgia
Are you feeling signs of the “holiday blues”? Are the demands on your time and your pocketbook starting to overwhelm you? Before you pack up the car or welcome any house guests, check out these great tips from the Mayo Clinic for getting through the holidays with as much joy as possible.
First off, however, you may have heard of something called bipolar II as well, so let’s talk about how bipolar I and II differ. Bipolar I is a subdiagnosis of bipolar disorder that conforms to the classic concept of manic-depressive illness. It is characterized by at least one manic or mixed episode, and there may be episodes of hypomania (marked by elevated mood, hyperactivity and grandiosity) and major depression as well. In contrast, bipolar II disorder – which is slightly more prevalent at PatientsLikeMe with 1,556 patients reporting it – is marked by depressive episodes that are more frequent and more intense than the manic episodes.
Now, let’s take a look at the wealth of data found at PatientsLikeMe. To give you a sense of the makeup of our bipolar I patients, 74% are female, more than 78% have an official bipolar I diagnosis, and approximately 40% report experiencing their first symptom prior to the age of 19. What exactly are the symptoms of this condition? Some of the most commonly reported include delusions, excitability, flight of ideas, grandiose thinking, hallucinations, irritability and paranoia. As you can see, most of these speak to the “manic” side of bipolar I disorder, which involves “excitement of psychotic proportions” as well as hyperactive, disorganized behavior.
As Andrea’s interview yesterday revealed, treating bipolar I disorder can mean treating both mania and depression simultaneously. Further, our patient-reported data shows that the two prescription medications she takes currently – lithium for mania and Lamictal for depression – are among the most commonly prescribed treatments for bipolar I patients, along with individual therapy and Seroquel. How well do these treatments work? Click on each treatment name to read our patients’ evaluations of their effectiveness, side effects, cost and more.
Finally, much can also be learned directly from the experiences our patients share on their profiles, treatment evaluations or forum posts. We leave you with several patient quotes from our Mental Health and Behavior Forum that help to fully illuminate life with bipolar I disorder:
“My manias last for about three to four months and are followed by depressions that tend to also last three to four months. Mine is the classic form of the disease with manias characterized by hallucinations, grandiosity, and impulsivity, and depressions characterized by fatigue, guilt, and somatic concerns.”
“The condition is every part of me as anything else. My choice to treat it arises from the consequences of living with bipolar in a non-bipolar world and not because I am broken and in need of repair. Bipolar “disorder”, well, whose order am I in disarray?”
“Now I’m a little manic. I know what you mean about relentless depressions. I have those too. At the other end of the spectrum, I become psychotic. That’s the part that really frightens me and usually lands me in the hospital, or worse.”
“A month ago, I truly would have been leveled by all this drama. I’ve come quite a distance in a short period of time. You guys give me such strength. I know that with your help, I can make it through life’s ups and downs while keeping mine under control.”
If you’ve got something to share about bipolar I as well, join the conversation today!
How do we know we’re truly living in a Health 2.0 age? Recently, we’ve discovered that a number of PatientsLikeMe members have fascinating blogs chronicling what it’s like to live with their respective health conditions. For example, we told you in August about the acclaimed gastroparesis blog “My Broken Stomach,” written by one of our members, Mollee Sullivan, and last month, we spotlighted diabetes patient Michael Burke’s blog “Life on the T List,” which shares his experiences before and after a kidney transplant.
As a result of this growing trend, we’ve decided to begin a blog series featuring some of the other amazing bloggers that are part of the PatientsLikeMe community. To start things off, we’d like to share our interview with Andrea, a three-star member who started a candid blog about life with bipolar I disorder earlier this year called “Lithium and Lamictal.” (The title refers to the two treatments she’s found that work best for her.) Tune in below to find out why she began blogging and what she hopes to achieve.
1. Why did you decide to start blogging about bipolar disorder?
I decided to start blogging about bipolar disorder after 21 years of living with this health condition. I was diagnosed with manic depression (now referred to as bipolar disorder) in 1989, and the main reason I bought my first computer in 1997 was so that I could try to connect with other patients and research bipolar disorder using the World Wide Web. I just knew there had to be more information out there than what I had gotten from my psychiatrists and the few pamphlets and books I had read before everyday people began using the Internet for research.
I’m still trying to learn as much as I can about bipolar disorder and health and wellness. I have always been interested in finding information about how people are living day-to-day with the condition. When I decided to start my blog, I wanted to give readers a view into my life so that I could provide an example of someone who is trying to do her best to manage the condition. I hope that my blog will inspire others to take charge of their physical and mental health, and also to remain hopeful and positive.
2. Your blog is called “Lithium and Lamictal.” How long did it take to find this treatment combination, and what difference did that make in your life?
When I was first diagnosed with manic depression in 1989, I was given lithium as a monotherapy. It prevented mania, but I still got depressed and I just had to deal with it because psychiatrists wouldn’t prescribe antidepressants since I had a history of severe manias and psychotic breaks. I think it was 2001 when my then-psychiatrist recommended that I try Lamictal at a time when I had been stable for a while. I took it and I didn’t get depressed for a few years, but I did have some unpleasant side effects, so I discontinued it and eventually experienced a serious depression.
Last year, when I was going through another serious depression, my new psychiatrist suggested that I try Lamictal again. After several months, my depression lifted, and after reflecting on my experiences with the medication, I realized that while Lamictal wasn’t great at relieving my depression, it definitely seemed to prevent my depression. At this point, I plan to take it indefinitely. I am taking a lower dose than with my old psychiatrist, and I also take medication and supplements to counteract the side effects. So now I take lithium and Lamictal and feel healthier than ever. All things considered, they are the best medications I have tried with the fewest side effects. Together they prevent mania and depression, and I hope I’ve found a combination of medications that will work for me for years to come.
3. What have you gotten out of being a member of PatientsLikeMe?
I really like tracking all of my health conditions and medications as well as exercise and sleep. It’s a good way of figuring out what is working and what isn’t. It’s also a reminder that I need to continue to take good care of myself, and it lets me know when I am slipping and need to get back on track. My psychiatrist likes it when I bring the charts to my appointments. She has also started asking me to bring my blog posts. The [PatientLikeMe] forums are a good way to learn from other patients about what is working for them. I post my new blog posts in the forum in the hope that they might help or inspire people.
4. Your username at PatientsLikeMe is Yoga Lover. What role does yoga play in your self care?
I was taking yoga from a great yoga instructor when I chose my username. Yoga is excellent for increasing strength, flexibility, relaxation, learning about mindfulness, and more. Not every yoga instructor focuses on spirituality, but mine did. We had candles burning, dim lighting, a picture of B.K.S. Iyengar and houseplants in the studio. We also had short discussions before class that everyone was encouraged to participate in.
Later in the class, as we went through the poses, he would talk to us about things we should be focusing on. Something that helped me the most was when he explained that just as a stomach digests, a mind thinks. The thoughts aren’t that important. We can decide who we are and what we want to do regardless of our thoughts. We don’t need to be embarrassed about our thoughts or judgmental of them, we just need to observe them. He recommended reading the book Light on Yoga Sutras of Patanjali, by B.K.S Iyengar, which I did. If you are interested in yoga, I would recommend it highly.
Because of financial considerations, I stopped attending that yoga class and joined my local YMCA. I take a spinning class three times a week and walk on the off days, as well as doing some swimming and strength training. I’m not going to a yoga class currently, but I still focus on things I learned in yoga about breathing, meditation, relaxation and mindfulness.
Thanksgiving is a time for remembering all the reasons you have to be grateful. For patients who face numerous health challenges, this can mean reminding yourself of all the things you have gained – not lost – since your diagnosis.
One theme that we’re especially proud to hear our 120,000+ members express is how thankful they are to have found a community of people who truly “get” them at PatientsLikeMe. Our founders envisioned a way to connect patients with others just like them – so they could learn from each other, support each other and help accelerate the pace of medical research – and today, it’s become a reality. Touchingly, it’s also been the start of many important friendships among our members.
Here are some patient stories that moved us this year:
“The people on this site deserve more than a simple thank you from me. The night I found PatientsLikeMe was about eight hours after my neurologists had told me, ‘You have non tremor Parkinson’s disease.’ That night I had some stinking thinking going on. I considered myself a freak. Thanks to this site I now consider myself unique. We are all unique. To my Parkinson’s brothers and sisters, a big THANK YOU for helping me get away from my stinking thinking.” – Patient with Parkinson’s disease
“This is the place where we can wonder what is next, cry about what is now and rant about how unfair it all is to us. Here we are among friends and patients just like us who know have been there or will be going there. It is so much better for me to be on PatientsLikeMe then to just rant to my family and boyfriend. I figure we can all listen to someone’s rant as tomorrow it may be us.” – Patient with ALS
“I called one of our members for the first time. We were on the phone for over three hours! Every connection I’ve made here that has progressed to the phone call stage has been like that. This is the best, most fun, most supportive group of guys and gals that I think I have ever come across. At PatientsLikeMe, we may all come from different walks of life, different locations and yes sometimes different opinions, but here we share such a unique and caring bond. I’m so lucky to have found PatientsLikeMe.” – Patient with fibromyalgia
“I have found that I am better able to deal with my moods now that I am able to relate to others with the same/similar problems. It helps to rant. It helps to talk with people who understand. PatientsLikeMe has helped me to understand myself better too. YAY. I love PatientsLikeMe.” – Patient with bipolar II disorder
“In large part, my success at escaping that life of depravity, depression and addiction is due to the sense of belonging I found at PatientsLikeMe. I was encouraged, and loved and, yes, even put in my place a few times. Even though my path has been neither straight nor smooth I feel that I have my friends on PatientsLikeMe to thank for the sunlight in my life.” – Patient with HIV
No one should have to go through the experience of chronic illness alone. If you’ve already realized you’re not alone in your journey, we give thanks for you…and every patient like you.
Today, November 17th, is the Great American Smokeout, now in its 36th year. It’s a day for quitting smoking or making a plan to quit. The reason for doing so is pretty compelling: tobacco use is the single largest preventable cause of disease and premature death in the US. Despite that, there are still more than 46 million American smokers, which is approximately 21% of the adult population.
Have you tried to quit smoking in the past year? So did at least half of the current smokers in this country. Quitting isn’t easy, but it’s easier when you have support. Take the “Do You Need Help Quitting?” Quiz to determine your level of nicotine addiction as well as the kind of personal cessation plan you’ll need. For extra motivation, check out the health benefits of quitting over time (which start as soon as 20 minutes afterwards!) as well how much money you could save by quitting.
Another way to find support is to connect with other smokers who are trying to quit. PatientsLikeMe considers tobacco addiction a health condition, which is why we include it in our platform. 3,914 of our patient members say they are addicted to tobacco, with 1,263 of them officially diagnosed. What are their methods of quitting? Two commonly reported treatments are Buproprion (Wellbutrin), an antidepressant used as an adjunct for quitting smoking, and Varenicline (Chantix), a drug that blocks the pleasurable effects of nicotine on the brain. (Click each name to read our patients’ evaluations of effectiveness, side effects, cost and more.)
The bottom line is you don’t have to quit alone. Join PatientsLikeMe and do it together.
“The true strength of the American family finds its roots in an unwavering commitment to care for one another.”
– President Barack Obama
November is National Family Caregivers Month, “a time to thank, support, educate and empower family caregivers.” There are more than 65 million family caregivers in the US who day in and day out fulfill a vital role on the care team for a family member. They also tend to be the most knowledgeable person when it comes to daily treatment, diet and exercise regimens for the person they love.
The theme for National Family Caregivers Month 2011, sponsored by the National Family Caregivers Association (NFCA), is “Identifying Family Caregivers.” The goal is to encourage both caregivers and medical providers to ask for a designated space on every medical intake form for a caregiver name. Otherwise, the NFCA argues, caregivers are “invisible in American healthcare.”
In contrast, caregivers play an important and prominent role in PatientsLikeMe’s “CareTeam” concept, which was developed to include everyone who is actively involved in the care of our patient members. That could be a spouse, partner, parent, child, doctor, home health worker, relative or friend. Patients can invite anyone on their real-life CareTeam to join PatientsLikeMe and be linked directly to their profile.
Currently, there are more than 7,000 caregivers using PatientsLikeMe. (Browse their profiles.) Here is a sampling of their stories and situations:
“I am a mother who would like to know more about bipolar disorder and know how I can help my daughter, and let her know I care.”
“I am a caregiver for my wife, who has generalized epilepsy. I have allocated a big part of my life to help my wife become more stable.”
“In 2005 my husband was diagnosed with young onset Parkinson’s disease and through my desire to be the best caregiver possible I forgot about me.”
“My husband was diagnosed with ALS at age 47 in June 2007 on our 25th anniversary. It’s hard to see not only his body deteriorate but his spirit too.”
“For decades, I have been caring for members of my family and community regarding mental illnesses and life challenges, mostly my beloved auntie.”
“On July 6, 2008, my partner got results saying he was HIV positive. It was a hard night for us, we cried and talked and cried some more.”
“I am 30 years old. I am one of the caretakers for my father who was diagnosed with ALS when I was 8 years old. I try to be there for him as much as he needs.”
Are you a caregiver? We encourage both you and the patient in your life to join PatientsLikeMe to share your experiences, find support and learn from other patients and caregivers.
Now that daylight savings time has ended, the days are shorter, and before you know it, it’s nightfall. Has this affected your mood?
Seasonal affective disorder (SAD), also known as seasonal depression, is a condition marked by a period of depression that occurs during the same season year after year. In most cases, that season would be fall through winter (when there is less sunlight), but for some people, SAD can occur during spring or summer.
One of the best ways to learn “what’s normal and not normal?” with SAD is to compare your experiences with other patients. There are 123 patients with SAD at PatientsLikeMe, with 85% of them female and 15% male. A commonly reported treatment is light therapy, or the use of a special light box that exposes you to bright light. This mimics the effect of natural outdoor light and appears to cause a change in brain chemicals that positively affects your mood. (Does it really work? Check out the 27 treatment evaluations for light therapy that our patients have submitted.)
“My symptoms tend to be worsening depression and anxiety. There are no ‘indicator’ symptoms for me - meaning I don’t realize necessarily ‘Oh I’m starting to feel SAD, crap!’ But all of my Major Depressive Episodes (five so far since I was 20) have occurred in November and December. And looking back, I can see a downward trend in especially depressive symptoms getting worse starting in mid October - such as depressed mood, more frequent crying spells, fatigue, worse insomnia, headaches worsen, weight and appetite changes, and urges to self-injure. Three of my Major Depressive Episodes led to suicidal thoughts and short hospitalizations. The other two, I had frequent suicidal thoughts but did not feel in danger of acting upon them.” – Member with panic disorder
“[Symptoms are] mild now, but they ran the spectrum from comatose to the walking functional. Kids don’t understand, and our school bus arrived at 6:00 a.m. Needless to say they weren’t hungry, food on the bus = school contraband, so I’d whip up scrambled eggs with cheese and wrap them in a taco shell and tell them to sneak a bite when they got hungry. They just threw them in the bushes for the local dogs to eat. Then I’d watch TV and answer the ever increasing phone calls all day long. If I felt OK, I’d start to prepare for the tornado that was spring. Nowadays since I don’t have so much responsibility, my symptoms seem mild, but that could change depending on the winds of life events.” – Member with bipolar II disorder
“I think it varies year to year in terms of severity. The March/April period is characterized by an increase in my anxiety levels together with restlessness and restrictive eating. The September/October period is characterized by an increase in my feelings of sadness along with intense carbohydrate cravings and a need to sleep more. Both periods are marked by problems concentrating. I notice that the light box really helps with the carbohydrate cravings. I think it might even make me less hungry overall. It’s not that the cravings go away entirely, but instead they are dampened to the level where I *don’t* find myself eating cookies without realizing how I got them.” – Member with major depressive disorder
PatientsLikeMe member MLR was an avid BMX (Bicycle Motocross), MTB (Mountain Bike Racing) and Motocross athlete his entire life – until he was diagnosed with multiple sclerosis (MS) last year.After having to give up the sport he loved, MLR began to suffer from depression.Today, however, he’s happy to report that he’s racing again thanks to an amazing turn of events. Check out his incredibly moving story below.
1. How did you and your family react to your MS diagnosis?
It was very tough when we found out it was MS that was causing all these problems and keeping me from training and racing. My family traveled with me always, and it was like going on vacations every month.We were a racing family.
2. How have you adjusted to living with MS – and what tips do you have for newly diagnosed MS patients who identify as athletes?
The hardest part for me was accepting the fact that I was not going to be able to race and do most of the things I had done for so many years.But my family didn’t give up on me like I did. They pushed me through the depression, and my faith in God carried me through my deepest valleys and set me on the mountain tops to see what my life could still be. As athletes, we just have to keep that drive.We have to compete and make adjustments and keep competing. Compete against the odds and against MS itself.
3. You have a new gravity downhill wheelchair that you’re racing now. How did that come about, and what’s it like to race in one?
My new gravity wheelchair is a blast! It was built by Active Force Foundation, with four wheel independent suspension (6.5″ of travel), four wheel disc brakes and all built out of aluminum. It is so fun to ride and race.
The greatest thing about this chair is how I received it. My two daughters started talking to people in our sport of BMX about my disease and how it had really taken its toll on me and how depressed I was that I couldn’t ride a bicycle any more. So over about a year to a year and a half, the whole BMX sport joined with them and raised the $11,000 to buy me this 4Cross DH chair. When they presented me with the concept of getting this chair, I was overwhelmed at the love and support from not only my two awesome daughters but also from my fellow racers and BMX family. The family of BMX is worldwide. Needless to say I cried like a baby for the support and love I felt from these wonderful people.
I ride my awesome DH chair every chance I get. Although they aren’t very many races for these chairs, I have so much fun showing up to race events and showing the chair off and letting people sit in it and sometime letting people get pushed around a parking lot in it. So if you ever get a chance to go see some BMX racing or you know someone in BMX, know that it is a great sport and the people are a loving and caring group. By the way, BMX is an Olympic sport, and you can see it again in the 2012 London Olympic Games!
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.
“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.
The theme for this year’s event is Sports Injury Prevention Across a Lifespan. ”Participating in sports the right way is the key to avoiding injuries that can sideline you for a significant amount of time,” writes the APTA. Learn more about preventing sports injuries and the role of PT at www.MoveForwardPT.com.
What do these patients have to say? Here’s a sampling of their feedback:
“I had not realized how badly I walked and moved until my PT evaluation and treatment. PT has helped me regain muscle movement and has helped the leg/foot pain go away.” - Patient with Parkinson’s disease
“If it tires you, stop. Do only light, non-resistant exercise. If it tires your muscles or causes pain, tell them immediately. Pain is not gain, it is loss of function.” - Patient with primary lateral sclerosis (PLS)
“PT actually does help in building up weakened muscles, especially in my legs. I am very sore after I leave, though. It works itself out after an hour or so at home.” - Patient with fibromyalgia
“I am walking better with and without the walker. I work out for an hour and fifteen minutes a day now. Monday, Wednesday and Friday with therapist, and the other four days alone. I WILL WALK ALONE AGAIN.” - Patient with MS
Have you tried PT?Share your experiences at PatientsLikeMe today.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.