Checking in with member Bev – “Laughter and comedy are still a huge part of my health management.”

Posted January 17th, 2017 by

Remember Bev (YumaBev), who we met back in 2012, after she’d just had deep brain stimulation (DBS) surgery? She told us about her blog Parkinson’s Humor and a book of stories from her blog, Parkinson’s Humor: Funny Stories about My Life with Parkinson’s. Well we recently caught up with her again to see how things have been going since we last spoke.

Check out the latest with Bev to see what she had to say about being an eternal optimist, connecting with other “Parkies” and the power of laughter.

It’s been a while (4 years) since we last caught up! How have things been going?

The last time we spoke, I had just had the first part of my DBS surgery. The surgery was an eventual success, but I had some minor complications. The skin on my scalp was so thin, it pulled apart where it was sutured. There was never any infection, but it did require several surgeries and a plastic surgeon to finally get my scalp to stay closed and heal properly. Right in the middle of all these scalp surgeries, I was diagnosed with breast cancer and the tumor was just below my DBS generator, so that made the cancer surgery a bit tricky. I also had a slight complication from the cancer surgery, in that the nerve in my right arm was pinched, so I had limited use of my right arm for about 6 months. Then my DBS settings were encroaching on the mood part of my brain, causing a severe depression. Needless to say, most of 2013 was definitely not a good year!!!

However, my scalp stayed closed and my hair grew back, my arm fixed itself, the cancer is gone (so far) and once my DBS settings were adjusted, the depression quickly disappeared.

Now my DBS settings are controlling almost all my Parkinson’s disease motor symptoms. I’m taking way less Parkinson’s disease medicines and I am back to sleeping 8 hours a night, which is something I hadn’t done in many years. Everything is about as good as it can be with Parkinson’s.

In your profile you mention that it took 8 years to get a diagnosis. Can you tell us a little about that journey?

My early Parkinson’s symptoms were not the typical resting tremor common in more elderly patients. The first symptom that sent me to a doctor was upper back pain near my shoulder blade/spine. I was referred to an orthopedist. Next came the inability to double click my computer mouse at work (more orthopedists.) Difficulty writing followed and then a tremor, but only when my hand was being used. (Think food flying off my fork and across the room.) After being x-rayed, CT-scanned and MRI’d, with everything coming back normal, I was finally referred to a neurologist. He diagnosed essential tremor (ET) and prescribed propranolol. This helped the tremor, but nothing else. My dad had been diagnosed with Parkinson’s the year before, so I asked if it could be Parkinson’s and was told, absolutely not. (Guess he was wrong.)

As my symptoms progressed, I confounded many more doctors, mostly general practitioners and more orthopedists. I even asked my dad’s neurologist if I might have Parkinson’s and he said, “Don’t waste my time, your problem isn’t neurological.” (Guess he was wrong, too.)

My symptoms kept slowly worsening, I needed help putting on a jacket and getting up from a chair. I startled very easily and had difficulty cutting my food. I was very stiff and rigid. My step-daughter, who I saw only once a year or so, was shocked at how much worse I was each visit.

Then my symptoms started progressing rapidly. I was losing the ability to do things daily. I needed help dressing. I could no longer drive. I had difficulty brushing my hair. I walked like I’d had a stroke and my right hand and arm were always curled. My GP was on maternity leave and not wanting to start over with a brand new GP, I took matters into my own hands. I KNEW it had to be neurological, everything else had been ruled out. I also knew it wasn’t ET because the tremors moved to my other arm.

I got a list of neurologists within 300 miles of where I lived, off a medical website. I typed a letter, detailing my medical history and symptoms, and started sending them out alphabetically. I’d send out about five, then wait to see if I heard back. Then I’d send more and wait. When I got to letter W, I almost gave up. But I sent the last few and waited. Dr. Zonis’ office manager called me, said they knew exactly what was wrong and had me come in the next day. They were right in the same town I now lived in, Yuma, AZ. He said Parkinson’s, gave me carbi/levodopa and five pills later, I could move again!

Now, to be fair, we moved around a lot, so the first neurologist I saw was in Colorado, my dad’s was in Florida, and the last one in Arizona. But MANY young onsets don’t have the same symptoms as elderly patients. Dr. Zonis was in his mid-60’s and I was the first young onset he’d ever seen in his practice.

In your last interview you talked about the power of laughter. What role does comedy play in your life now?

Laughter and comedy are still a huge part of my health management. Laughter stimulates your brain to produce more neurotransmitters, like dopamine, so it really is good medicine. And with no side effects! Well, you might pee your pants, but then you laugh at that, too.

You describe yourself as an eternal optimist – how has that influenced your experience with Parkinson’s?

Some people have optimistic tendencies, some have pessimistic ones. I think it is part of you, just like eye color or skin tone. I have always been optimistic, but I know what depression is like (from my DBS induced depression) and I can now empathize with people who feel depressed. It is awful, your whole body aches. You wake up feeling like you’ve been boxing all night with Mike Tyson. You have no hope and you feel down.

Everyone with Parkinson’s disease is different. We progress differently and have different symptoms, but I think my positive attitude explains why, after being symptomatic for 20+ years, I am doing so well.

What’s it been like connecting with others on PatientsLikeMe? Has it helped you manage your condition?

Connecting with others with Parkinson’s disease is essential to living well with the illness. Your doctor doesn’t have the time or knowledge to help you figure out how to live with Parkinson’s disease, they only know how to write prescriptions. People with Parkinson’s disease know the best local doctors, dentists, therapists and helpful tricks and are willing to share their life experiences. For example, replacing medicine bottle caps with the flip top ones that come on vitamin bottles. Parkies also can tell you if this symptom is common or if this side effect is dangerous.

 

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Meet Gary from the PatientsLikeMe Team of Advisors

Posted January 12th, 2017 by

Meet Gary (tupelo), a husband, father and grandfather who lives with Parkinson’s disease. Gary’s also a member of the 2016-2017 Team of Advisors. He believes that physical exercise slows the progression of Parkinson’s and practices Tai Chi and Qigong on a regular basis.

Check out Gary’s story and his outlook on life with Parkinson’s: “Accepting your condition doesn’t mean you must resign yourself to it.”

 What gives you the greatest joy and puts a smile on your face?

There are many things that give me joy in life. In my personal life, I love sports, reading a good book and drinking a glass of good wine.  In my professional life, I’m motivated by taking on the challenge of new opportunities, taking an idea and creating a business around it, or public speaking. However, nothing gives me more joy in my life than my family. They are the reason I push myself so hard to understand all there is to know about Parkinson’s Disease while searching for a way to stop or slow the progression. My phone, my computer and my desk all contain pictures of my two young grandsons.  That’s what brings a smile to my face each day.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Living with a chronic, progressive disease is basically like having a new full-time job. Managing medication, scheduling medical appointments, keeping up with current literature and research, keeping involved with my Parkinson’s advocacy and volunteer work, while making sure I exercise daily can become exhausting.  The greatest obstacle and challenge I have living with Parkinson’s is doing all of this while also trying to maintain my professional career and leave time to continue to live and enjoy life to its fullest.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

The best advice I can offer to someone newly diagnosed with a chronic illness is do all you can to take control of the situation. Research the condition, put together the best medical team you can find, search out all the options for treatment and control of the disease, make your support team (family and/or friends) aware of your condition and lean on them when needed, and do whatever you need to do to fight for your health.  Then, after you have taken control to the best of your ability, remember to GO LIVE YOUR LIFE. You had no choice in getting your condition, but you have plenty of choices in how you live your life afterwards. Accepting your condition doesn’t mean you must resign yourself to it.

What made you want to join the PatientsLikeMe Team of Advisors?

 Since being diagnosed with Parkinson’s Disease almost five years ago, I have been actively involved in the PD community.  I’ve spoken publicly on a variety of topics, including drug development, clinical trials and patient volunteers, government regulations, resource allocation, access to records and information, interaction with healthcare providers and overall patient treatment and care.  Along the way I’ve come to learn how difficult it is for patients to have their voices heard and their opinions considered.  I’ve also realized how difficult it is to change any bureaucracy, and our healthcare system is right out the top of the list.  I was thrilled to join the Team of Advisors because I’ve seen firsthand what PLM has been able to accomplish in both helping patients and influencing change. As patients dealing with chronic conditions, we all share similar concerns, problems and issues.  We will be much more successful in producing meaningful changes as advocates of a combined patient community than we ever could individually or as separate disease communities.

Has there been any positive impact to your life from living with Parkinson’s Disease?

On first thought, it’s hard to imagine how someone could have a positive impact from a progressive chronic disease. However, I had several positive changes because of my diagnosis. First, I’ve come to appreciate and enjoy life much more than I did prior to diagnosis. As a Type A personality, I spent way too much time and focus on my career and had all the associated stress that came with the job.  I now try to eliminate stress as much as possible.  I control what I can and let go of what I can’t. Second, I spend much more time with my family, rather than time in the office. Finally, by becoming involved in advocacy for my condition, I’ve made friends with people from all over the world.  Our paths in life would never have crossed if not for our conditions.  There is no better example of that than the Team of Advisors and how quickly 11 strangers with different conditions bonded together over a long weekend. So yes, it is possible to have a positive impact that can coincide with all the challenges and problems that occur from living with a chronic disease.

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Patients at work: Member Nancy on being her own boss

Posted January 10th, 2017 by

We recently launched a blog series about patients who’ve started (or are gearing up to launch) their own businesses, sparking a discussion around how to manage your health without giving up on your career goals.

Say hello to Nancy (@spicerna), who sat down with us to discuss how she finds a balance between living with bipolar I and expressing her creative side through her art. Nancy chatted with us about the kinds of projects she likes to work on, and why it’s important for her to be her own boss: “I need a job where I am the boss every day. There is an unpredictable nature about the illness…not a day that goes by to where I am not making judgment calls to maintain my health.”

Can you tell us a little about yourself and your diagnosis experience?

I have struggled with symptoms of Bipolar I, since I can remember. I really noticed the ups and downs in the teen years. And at age 16, I had my first psychotic break, (1 out of 5 breaks in my life.) I have always been an overachiever and had big dreams and goals for the future but the combination of everything that I needed to succeed broke me. My body and mind couldn’t handle it. There was never a balance of my life. I never took a break I was a workaholic. I slept just 3-4 hours a night most nights. I had as many successes, as I did years of crash and burn.  It was just hard for me to work a mainstream job. I can’t do deadlines very well, stress triggers Mania. I was in complete mania working a full-time job and going to school for 7 years of my life then in a complete depression for 8+ years as I worked each day to recapture my life. Since I had 5 times of extreme psychosis. It wears on your body. I just had to begin plans to do a 180*. I was choosing the path to the most resistant and not enjoying the ride along the way. There were many things that I was doing wrong. I needed the balance, peace of mind; love for myself and to not live in extremes.

I have a certificate in residential planning and I planned on having a career in kitchen and bath design but that is high stress and the 180* was to find that my hobbies and being an artist is more of a goal and where I should be headed now. If I could make that work and market it to make some income. Then I can kill two birds with one stone I could have my success and support myself and take care of my illness at the same time.

I need a job to where I am the boss every day there is an unpredictable nature about the illness there is not a day that goes by to where I am not making judgment calls to maintain my health. I have to take many brain breaks clear my mind. That gets in a way of a full time every day job.  So to work at my own pace is crucial. So I can work around my mind.

How did you first get into making art? What are some of your favorite projects?

I started cross-stitch at age 8 at the same age I would draw in 3rd grade floor plans of my favorite houses that we vacationed at. In high school I took drafting class. I was very into residential homes and design. Through school I loved anything design and art related and at age 12 I determined that would be my life goal, I wanted to get into homes and design the plans for them. Well that idea evolved and now the goal is to be an artist and create art for people’s lives. It took a long time to make that distinction. I guess that is part of the process of the journey.  My cross-stitch was an obsession growing up. I made over 45+ pictures most of them were gift to friends. By working with my hands and heart it was a release to use the needle and thread, very healing. Then after a while after I chased after my career for a while I realized that I wanted to get involved with other mediums so with no money for school I began to teach myself using YouTube for advice other mediums, to illustrate for cards and create paintings. Wherever my ambition will lead. I am interested in paper, wood and fabric. I am defiantly in the experimental stages, working on many different projects to see where that may lead.  Right now, I am drawing and gravitating towards architectural element and gardens.  The sky is the limit.

Where have you been able to sell your art so far? What are your plans for growing a business out of it in the future?

I was making and illustrating some cards for people around me I would go to market and sell my cards just for the experience and wow they sold like hotcakes and had some people pay $10 for one card and there were orders for batches of 12 cards for Christmas and finally I just got warn out with all the work and found better ways to market my cards. I have one idea to sell and make good money buy illustrating my cards then making copy’s at the printers then selling or making silhouettes on the Internet for Cameo cutting machine sell the rights to the company and then when people buy my silhouette on the web I get paid a percentage I liked that idea. All of this is going to take me a long while to manifest I am becoming an expert in my own field so I am gauging down the road. 

How does living with bipolar affect your creative process?

When I am in mania my mind is racing the world it is so much deeper and broader and I have so many ideas. I have so many ideas but there not concrete. On the meds I struggle with similar issues as in mania; plus to focus, concentration, comprehension, low energy. I do think clearer on the meds but the symptoms never go away. It takes much strength to break down and be in the mood to do art so I am surprised when I look over my work and see so much progress.  So maybe once a day do a little bit. It is hard when your mind is choreographing dance songs in my mind and you know how to make that happen but all the details of the work and learning everything to piece that together. I don’t have energy for that. But it goes through my mind. All I know I can do anything I set my mind too there is just isn’t enough time for it all in this lifetime. Sometimes I think that I have the illness to keep me down to earth instead of a balloon flying off into the universe I have so much internal power.

On the flip side, does the process of making art help your manage your health?

Art is passion: it is metaphysical and spiritual. It takes you places. Color, and creating: helps release your mind. It keeps me occupied, during this life we call on earth.  It take’s skill and the process of learning, growing and creating that specific look is a life long job so fascinating to find.

I can manage my health by getting to a place to where I feel at complete peace and feel like I am doing my calling in this world. I feel depressed and moody if I am not doing that. I need Art in my life.

Do you have any advice for others with chronic illnesses who wants to start their own creative businesses?

Do it for fun first for years then add the buying and selling part. That is what I am doing? I feel more prepared to sell my work that way. Do your research about the business end and start with small classes to help you understand the business world. Become and expert first and then the process will be less stress on you. Owning a Business is a risk and you want to do what you can to succeed.

Most of all love you and have some faith. There is power within your heart that is just waiting to break through. Believe in that every moment of every day. Love yourself first and foremost and love others around you. Give to them in increases the harmony. Don’t get trapped in the hole of oppression and burden, get out!! Then you can succeed in all area of life and be ready for your own business.

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Meet Jacquie from the PatientsLikeMe Team of Advisors

Posted January 6th, 2017 by

Say hello to Jacquie (@Jacquie1961), another member of the 2016-2017 Team of Advisors. We chatted with Jacquie recently about how she lives with her condition and what it meant to become part of this year’s Team of Advisors; “Joining the team is allowing me to…help others who are newly diagnosed or those who think they have something wrong with them.”

Jacquie also opened up about her passion for animals, especially her dog, Roman: “He’s precious, loving, beautiful and really has the personality of a human.”

What gives you the greatest joy and puts a smile on your face?

I would have to say I get the most joy out of being with my dog, he’s been the greatest addition to my life right before I was diagnosed. He’s precious, loving, beautiful and really has the personality of a “human.” Of course my new kitty is an added bonus of love and fun. All in all, I have a tremendous passion for animals.

What has it been like for you managing multiple conditions?

First off, I had Lung Cancer. Fast forward months, I have a new oncologist and stage 4 metastatic lung to colon cancer. I became the 13th documented case of such as it is highly rare. Every 3 months I have a maintenance plan of scans, blood work (that’s actually monthly) and colonoscopies as I have pre-cancerous polyps that must be removed before becoming cancer. The risk is too high, so that is my life with cancer. I chose this over a life of chemo. I have since my 20’s severe anxiety and panic disorder, my only maintenance on that is the highest dosage of Xanax 5x a day and pray I don’t get attacks. I have tried everything and there is no cure for anxiety like I have it, I would not wish a panic attack on my worst enemy. This is truly a disease that if you have never experienced it you would have no clue how horrible it is. Because of 14 months of intensive chemo my bones and joints have severe damage, especially my back. I go every 3-6 months, depending on the body part, for injections for the pain. THIS has really impacted my life. I can’t do the things I used to do, dance, hike, rake leaves, garden etc., because of the pain. My mornings begin with a good hour on my heating pad for my back just to be able to take a shower. This limits me in doing things on the spur of the moment and even getting to my shop on time. Every day I have to apply pain patches and take pain meds which I despise. But…such is my life, I deal with all of it, juggle all the bs and carry on. Top that off with coronary artery disease and stents, all due to the chemo. Never had heart issues. I won’t say this limits my life daily but it does long term now. I now have added regular cardiologist appointments, scans, tests, etc.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My personal conditions only have the obstacles I myself place on me. Society only needs to be aware that we are all different and we should never judge a person by how they look, talk, walk, or live. Under the shell of someone could be a person who suffers greatly and maybe that scowl on the person’s face isn’t because they are nasty, maybe it’s because they are in horrible pain. Maybe they just got some more bad news about an already bad condition.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I would tell them to think of their worst headache and multiply it by 10, that is real pain. Imagine being in your car and you are suddenly underwater and you can’t get out, you can’t breathe. That is anxiety. The feeling of being trapped and unable to get out the panic attack that ensues is like an out-of-body experience where so much adrenaline is pumped, you are exhausted when the attack is over but relieved you didn’t pass out or die like you certainly thought you would. Having cancer in the midst of this was just another fight for life big panic attack that didn’t go away.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

First of all, the word “chronic” needs to be redefined. Most conditions are not chronic, they are in a maintenance phase or they are lifelong conditions. However, I would always advise a second opinion. Once diagnosed, try and learn everything you can about your condition. Join a group like PatientsLikeMe where you can interact with others suffering and learning to cope with the same or like condition. Coping mechanisms are generally best learned from those who have been and are in the same shoes as you. Reach out and surround yourself with a support system, and most of all cherish that best friend. You will need him or her.

How important has it been to you to find other people with your condition who understand what you’re going through?

It was very hard until I found PatientsLikeMe, then it became easy. There were so many and so many far worse than me I could immerse myself in helping them which in turn helped me to cope and deal with my own issues. Someone always had it worse than me, someone was fighting to live with their last breath, and some do not live and become another statistic.

Recount a time when you’ve had to advocate for yourself with your (provider, caregiver, insurer, someone else).

After my first cancer diagnosis I had an Oncologist who did NOTHING for me for 5 months when I begged every visit for help and told him how sick I was. I changed doctors and found out that my cancer had already metastasized. Once I became strong enough I became completely in control of my medical care, I pick up all of my own scan results, tests, etc. I make lists of questions, I google everything and I follow up with all doctors. Many times I have already diagnosed myself before seeing a doctor and that includes the dentist and the eye doctor. In 2015 I knew my father was not well, and his complaints of pain went ignored by all doctors for several years. I went to my oncologist and told her something is wrong with him, please figure it out. He had stage 4 non-Hodgkin’s lymphoma of the bone marrow. He is now in remission. How’s that for all these great doctors who told him he was just getting old?

What made you want to join the PatientsLikeMe Team of Advisors?

Joining the team is allowing me to further my voice as a patient of several conditions. To help others who are newly diagnosed or those who think they have something wrong with them. To let them know they are not crazy, and not alone. I am also taking this opportunity to educate the doctors within my large medical circle that I am an example of the reason they became doctors. That my time is valuable, too. Sitting in your office and waiting for you for 5 hours is unacceptable. I have pain and it is an issue coming to see you. I am not just another number in your file cabinet.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

Mostly I have been on the support side of PatientsLikeMe and try to help others. I have not used it as a tool to help me. I already know what I have and how I cope. But I must say there are days my coping skills don’t work very well, conversing to another member that is down and hurting and lifting them up puts my issues back into perspective. I’m still breathing, I’m still here.

What is it like to be you?

Why I ask myself that question I don’t know, maybe I am trying to understand what it is like to be me, I used to know and have an easy answer: it was great being me. Being me now is not always so great, but I am working on making my life better again. I have my new shop that, after my hurdles of getting there in the A.M., is a fun and rewarding place to be. I struggle with issues I have with my brothers. Aren’t they supposed to care about me not just when I am labeled as “sick and dying” but always? Do I expect too much? I think when one goes through so much and continues to constantly have to fight to keep a balance but never gets the balance it’s easy to fall into this abyss of “why me,” so I do my best to stay above that hole. I don’t ask “why me,” because there are no answers. I’m simply a good, driven person who wants to be happy, to help others, to enjoy my days, have fun like I used to and travel freely like I used to. I have a lot of “used to’s” I want back, maybe I should just live with who I am now but I refuse to give up or give in. There are ways I will feel better and I will find them. I got dealt a lousy deck of cards so I have to reshuffle now and deal another deck and make the best of it.

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PatientsLikeMe Partners with iCarbonX and Secures $100+ Million Investment

Posted January 5th, 2017 by

 

CAMBRIDGE, Mass., JANUARY 5, 2017— PatientsLikeMe, the world’s largest personalized health network, has entered into a broad-ranging partnership with digital life company iCarbonX to apply next generation biological measures and machine learning, and accelerate a deeper understanding of the basis of human health and disease. iCarbonX, founded in 2015 by renowned genomicist Jun Wang, has taken a minority equity position in PatientsLikeMe and will provide multi-omics characterization services to the company. Invus, LP, PatientsLikeMe’s anchor investor for the past decade, is also participating in the equity investment.

The partnership makes PatientsLikeMe a cornerstone in iCarbonX’s Digital Life Alliance, an expanding ecosystem of leading health technology and application companies that are collaborating to digitize and analyze all aspects of life. The alliance’s ultimate aim is to merge comprehensive biological and patient-generated data with artificial intelligence (AI) technology to help people better understand the medical, behavioral and environmental factors in their lives that may accelerate or mitigate disease, and optimize health. In a separate announcement today, Wang said that the iCarbonX ecosystem has invested a total of nearly $400 million in the initial companies that form the alliance: PatientsLikeMe, SomaLogic, HealthTell, AOBiome, GALT, Imagu and Robustnique.

PatientsLikeMe Co-Founder and Chairman Jamie Heywood said that since its founding, the company has partnered with patients, clinicians, pharmaceutical companies, regulators and nonprofits to develop the infrastructure that makes the patient experience increasingly central to the development and practice of medicine. “Our partnership with iCarbonX will accelerate the development of our vision for a democratic system of discovery, care, and learning built for and with the people it serves—patients. Jun and all the companies in the alliance share this commitment to make patient value the guiding star in all we do.”

Wang said PatientsLikeMe’s unparalleled track record of engaging and empowering patients in their health was a key factor in his partnership decision. “PatientsLikeMe pioneered digitizing the patient experience and connecting people online so that everyone learns from shared data. Our partnership moves this to the next level, bringing new data and technology together to help people assess their health status and their options, and manage their digital life in a more complete manner.”

PatientsLikeMe’s History

PatientsLikeMe has spent the last 10 years developing a sophisticated personalized health network that has empowered patients in their own health journey, pioneered patient-centered measures of health and disease, and amplified the patient voice to the healthcare industry.

The company was founded by Heywood, his brother, Ben, and family friend Jeff Cole after the Heywoods’ brother Stephen was diagnosed with amyotrophic lateral sclerosis (ALS). The trio built what became the first and only digital platform to date to collect and aggregate patient-generated health data, giving patients the real-world context to make more informed decisions and improve their outcomes. Today more than 500,000 people use patientslikeme.com to track and share information about 2,700 conditions. The result is a unique window into the patient experience unavailable in any clinical system that also helps PatientsLikeMe’s partners improve medicines, devices, and treatment protocols. More than 40 pharmaceutical companies and numerous government organizations have collaborated with PatientsLikeMe and used its data to understand what it’s like to live with and treat disease. The company has also published more than 100 research studies based on patient-generated health data.

The new PatientsLikeMe board of directors is comprised of: Jamie Heywood; PatientsLikeMe CEO Martin Coulter; Philippe Amouyal, Managing Director of Invus LP; Jun Wang; and Co-Founder and COO of iCarbonX Chun Wu.

About PatientsLikeMe

PatientsLikeMe, the world’s largest personalized health network, helps people find new options for treatments, connect with others, and take action to improve their outcomes. The company has worked with every major pharmaceutical company and a range of government organizations to bring the patient voice to research, development and public policy. With more than 500,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 100 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
PatientsLikeMe
mcdelogne@patientslikeme.com

+1.781.492.1039


Member JoeSixPack shares his experience with diabetes

Posted January 3rd, 2017 by

Say hello to Peter (JoeSixPack), a father of three and member of the diabetes community. He was first diagnosed with type 2 diabetes in 1998 when he was 34 years old. In a recent interview, he told us about his life-long struggle with his weight, managing treatment, and how he found the motivation to lose weight and quit smoking.

Check out what he had to say about life with diabetic neuropathy and coming to terms with the realization that he’s not invincible.

Peter before and after his weightloss

Tell us a little bit about who you are. What was life like before your diagnosis? How has life changed since your diagnosis?

I am a 62-year-old male that was married to the same lady for 40 years prior to her death in September 2013.  When I married my wife I weighed in at 335 pounds.  I was an executive with a financial company for the previous 12 years and eventually Peripheral Neuropathy had gotten so bad it finally put me off work in January 2015.  I was diagnosed Type 2 Diabetic in August of 1988 and struggled with my blood sugar levels for most of my adult life.  Like most 34-year-old men, I regarded myself invincible so prior to my diagnosis. I had taken life for granted and believed that I could continue along on a path to self-destruction until I took ill for about a year. No one seemed to be able to pinpoint exactly what the problem was.

When the diabetes chose to completely reveal itself it was in the way of uncontrollable thirst, numerous bathroom trips through the night and I was unable to get enough sleep through the night in order to properly function at work the next day. I was prescribed a drug for the time called Glyburide. It was because of the success of this drug that I went right back to my old habits of poor diet, lack of exercise and I was rapidly becoming a workaholic in a very high stress occupation.

After about 4 years on the drug and gaining another 15 pounds my illness broke through again and I was referred to an Endocrinologist for further direction. He changed up my Glyburide to a new drug called Metformin, sent me off to a Dietician. I was no stranger to dieting as I had been a fat guy my entire life. I joined Weight Watchers and promptly lost 75 pounds but by the time I met my wife I had reached a new high of 335 pounds. I knew I needed to lose some weight in order to stay active with the now 3 young kids in our life so I signed on to the Liquid Protein Diet. From August 1 that year until Nov 30 I was able to shed 130 pounds. It didn’t take me long to return to old habits and within 2 years I had regained the 130 pounds and was now tipping the scales around 360 pounds.

I was never really concerned about the diabetes and I went days where I would take my meds and other days I would not never realizing the damage that my obesity was doing.  I ate with reckless abandon, smoked 3 packs of cigarettes a day, and still I was taking my medication only when I was not feeling well and not as prescribed by my doctor. The more weight I put on the more meds I would be prescribed.  I went to see my family doctor and told him I was tired of taking pills.  He told me to go away and lose 60 pounds before he would even discuss a med change with me.  I left his office determined to do 2 things that year 1. Lose weight; and 2. Quit smoking.

So on July 31, 2000 I stopped cold turkey on the cigarettes changed up my diet and began to walk every day.  First day I went out my front door and I said to myself anyone can walk around the block. A block turned into 2 then 10 then a mile then 5+ miles daily.  The weight began falling off at a rapid pace and I felt so good I took myself of all my meds. I kept walking hoping my blood pressure would eventually respond. I was now down 108 pounds but found a lot of times I would have my walk cut short because of shortness of breath. As I lost more weight I was unable to complete any of my training. In November 2002 went under the knife for a triple bypass!  From 2002 until 2006 I worked out like a mad fool.

In 2006 I was promoted to the Regional Manager of the company I worked for and began ignoring my health in favor of my job.  I stopped going to the gym and stopped all forms of exercise and once again became a workaholic. I stayed around 330 pounds from 2007 until 2015 but I knew that the diabetes had taken a toll on my feet and hands as my feet were constantly burning.

I went in for a proper diagnosis and was told I had advanced Peripheral Neuropathy and was prescribed Lyrica to try and combat the nightly pain I was now feeling.  Seems the Lyrica was okay for the pain in my feet (100 mg 3 X’s daily) but now I began to notice the neuropathy in my hands and my doctor referred to this as focal neuropathy. In July of 2013 I noticed a tiny crack on the heel of my left foot.  This rapidly turned into a diabetic foot ulcer and I looked to the PatientsLikeMe forums to see how to go about healing this.

How would you describe living with diabetic neuropathy to someone who’s never heard of it?

Living with diabetic neuropathy is somewhat perplexing in the fact when it first shows up it comes as a small tingle in the foot and toes.  As it progresses it started to resemble gout but the more I treated my feet for gout the worse the feet became.  Eventually I made an appointment with a Diabetic Foot Nurse and she was able to detect peripheral neuropathy in both large toes and both small toes and I was sent to report this to my endocrinologist.  Slowly as the neuropathy progressed the tingling in the feet began to get worse and even more so at night when I was laying in a prone position.  Now that I have had the disease for almost 5 years I have nights the tingling and pain go as high as above the knees and it has also moved into my hands.

It has also caused the muscle mass in my hands to deteriorate and it has become very noticeable as my hands are looking like those of an 80-year-old.  My doctor increased my dose at bedtime to 150 mg of Lyrica and 3 Oxycocet along with .05 to 1 mg of Clonazepam as needed for sleep.  This prescription has been working to date but somewhere along the line I have developed a loud ringing in my left ear that seems to get louder as the drugs wear off in my system. Eventually the lack of the ability to get a good night’s sleep put me off work and I have been unable to work for the past 2 years as the disease consumes your life.  Things you may have taken for granted you are no longer able to do alone any longer.  You cannot put on your own shoes nor tie them up, cannot button up your shirt or zip your coat.  Very hard to check the temperature of water so you need assistance with the shower or bath (very easy to burn yourself). A lot of daily chores you used to do you can no longer do.  And because this is a disease of the central nervous system, I have no idea what the disease is doing on the inside of me.

In the forums, you talk about the importance of good nutrition and diet. How has this helped you manage your diabetes?

Recently I have taken on a LCHF Program Lifestyle change (Low Carbs High Fat) and in the past 10 months I have lost 111 pounds following this lifestyle and it has allowed me to get off all of my Diabetes medication (20 Units 2 x’s a day of Levemir, 3,000 mg of Metformin daily, 240 mg of Diamicron Gliclazide daily and 100 mg of Januvia daily). Unfortunately, I have been unable to shake the effects and symptoms of the Neuropathy but I have my fingers crossed that I may have stopped it in its tracks.  If that is the case I may have just added a few more years to the end of my life.

You’re super active in the forums – what’s it been like connecting with others on PLM? What does it mean to you to donate your data?

I was so excited when I found the website PLM as I was finally able to connect with other people that were either suffering for the same issue. It gave me hope that someone may have found out something about the diseases I have that would maybe help me live a better life living with both Type 2 Diabetes and Peripheral Neuropathy.  One thing I never did through all this is give up. I always believed the more like-minds discussed their common issues, the better the chance someone somewhere might just stumble across something that actually works.

I feel that the LCHF Program has done wonders for me and had I found this information out about 10 years sooner I believe I would never had met the disease called Peripheral Neuropathy.  So I try to stay as active as possible on the site providing information that people might otherwise not be able to find on their own.

I currently volunteer for the Canadian Diabetes Diabetic Foot Program and they will not even allow me to tell fellow Diabetics how I lost my weight and how it has helped me. They won’t allow me to even discuss my hands in the program presentation.  They feel that since my LCHF program is such a fringe program it is not likely to work for anyone else the way it has worked for me and I am sorry but I do not agree with them. Effective Nov 18, 2017 I will be resigning from that program as I feel modern medicine does not care if we get better or not. Doctors have little concern for us being able to stop a disease like Diabetes or Neuropathy and especially using a High Fat Diet.  If I can turn just one person with Diabetes onto this way of eating and it stops their Diabetes and never develops into a secondary disease such as Peripheral Neuropathy, I will have done wonders to help my fellow PLM participants.

 

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Meet Glenda from the PatientsLikeMe Team of Advisors

Posted December 29th, 2016 by

 

Meet Glenda (gagafor2), a member of the 2016-2017 Team of Advisors. Glenda is a wife, mother and grandmother who finds great joy in making others happy. She’s also living with idiopathic pulmonary fibrosis (IPF).

Recently, Glenda told us about coming to terms with the “unknown” in her future and coping with anxiety: “PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know.” Check out the rest of her story and learn how Glenda hopes to represent other members of the IPF community.

What gives you the greatest joy and puts a smile on your face?

I would have to say making others happy makes me smile. I love to give and do special things for others, it gives me great joy I get so excited when I can find that special gift or plan that special surprise for someone else. My family gives me the greatest joy of all. I have had a wild ride so far with my husband of 45 years and my children and grandchildren. We moved many times throughout the last forty years to different parts of the country, making so many incredible friends and have having such wonderful memories. Yes, I still print out some of my photos just to pass on to my children and granddaughters so they can also look at, hold, and remember all the great memories that will live on throughout time. I am a pretty sentimental person. Our little granddaughters six and nine are so much fun and they give me a reason to fight with all I have and to live my life the best I can.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle with being diagnosed with a terminal illness is the unknown. Not knowing to me like being in a dark room trying to find my way around, just stumbling around seeking help. Most of my family and friends always tell me “you look so good.” Yes, I do look good, makeup, hair color, and clothes can paint a pretty picture. Inside is the emotional and physical picture they do not see, nor the frightening experience of the what ifs that can happen at any time. Now I try to look at the whole picture of a person and have great empathy with what is going on with them.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Living with idiopathic pulmonary fibrosis is a day by day experience. Sometimes when it is hard to breathe or get a good breath it is frightening and I need to calm myself and do my pursed lips breathing to get my center and not let the anxiety run away with me. I also have generalized anxiety. One of my biggest fears has always been not being able to breathe and yes here I am diagnosed with something that can throw me off the cliff big time

Most days are good and I go on taking it one day at a time, even knowing it is a progressive disease and could change at any time with an exacerbation. I have become germ phobic trying not to get an infection or virus to cause a decline. My husband and I own our own business so I still work, now on a reduced schedule. Fatigue is sometimes overwhelming and keeps me from getting together with friends and social events as I used to. Every three months I go for pulmonary function tests which give me great anxiety before I get to the hospital to do the test. I am so afraid each time I take them that my numbers will decline. I know I cannot do a cram study for pulmonary function tests, but I do tend to over think the whole procedure for fear of lower numbers. I do take one of two medications approved in 2014 that can slow the progression of IPF in some people. Right now, I receive help paying for the drug, ($96,000 a year) but next year I will go on Medicare so that gives me financial worry also. I have heard of patients not having insurance or being able to afford the cost of these drugs, which makes me angry and sad. Something needs to change for people who need these kinds of medications.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

When I was diagnosed with interstitial lung disease I was not given much information or why I might have gotten it. I began to look on the internet to find out what I might have. I learned that IFP was the worst kind of interstitial lung disease with no cure and a life expectancy of 2-5 years.  Boy, did I have a huge panic attack, checking into the ER. I then had testing done to confirm what I had, and then getting a phone call at work telling me I had IPF. It was so traumatic to be told this over the phone with no explanation just to wait until my next appointment in 2 months.

How important has it been to you to find other people with your condition who understand what you’re going through?

PatientsLikeMe became my lifeline to information and patients who knew what I wanted and needed to know. This amazing site gave me information, advice, and hope. Please get all the information you can so you will know the right questions to ask your doctor. I have found through my own experiences in the health care system you need to be proactive and not reactive with your health and the information you need. Please go seek supports groups and places like PLM to speak with others who have already experienced what you are going through. Then pay it forward to someone else who is newly diagnosed. We all need each other. 

Recount a time when you’ve had to advocate for yourself with your <provider, caregiver, insurer, someone else>.

A few years ago, I became very sick not able to function at all. I gave my symptoms to my physician over and over without him getting to the exact cause. This went on for a year. My doctor became impatient and annoyed with me, making me feel like a stubborn patient because I kept coming back not getting any better. I finally asked him “would you like me to see another doctor?” I don’t believe he had ever been asked that question before. I did change physicians and we finally got to the bottom of the problem. We only have one body and we are the only ones who can advocate for the best treatment we can get. I try to learn as much as I can before I visit a physician so I know the right procedures and questions to ask. I don’t like to think we are just numbers but sadly it can be that way. I have found that going in the hospital requires someone on your behalf to monitor everything being done and given to the patient.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe gave me the hope and compassion I needed at a time I was sinking in despair. Just being diagnosed with a terminal illness is a lot to handle on your own. I immediately connected with other IPF patients who gave me sympathy but also hope. A dear friend I met sent me a book of scriptures she said she wanted to pay for and send. What an angel she has been. Then there are the friends who know so much I just can’t pick their brain enough. It is a 24/7 online support group when you need it. It has given me information to make wise choices about medication to choose, supplements to take, and ways to cope. They have helped me beyond words; I wish I could name them all but just too many. I now hope to carry the torch forward for those who are newly diagnosed to those who are further along the road we travel.

How can we make our health care work better for us?  

Tell everyone about PatientsLikeMe, how we can connect and share with other patients, put in our test results, and know how to talk to our doctors and providers while being more informed.

What made you want to join the PatientsLikeMe Team of Advisors?

The only thing I know is that I wanted to make people aware of the PatientsLikeMe website. I did not expect to be chosen. I am not eloquent at putting my thoughts in writing, nor the most informed patient. I’m just an average person who got diagnosed with a chronic illness who wants to let others know how much I rely on communicating and sharing information. I was shocked when I received the notice I was chosen.  It was only during my trip to meet my fellow advisors that it came to me why. I want patent health care to get better, patients to be more informed. I love having all the data in one place and available to share. I love being able to enter every lab test, pulmonary test and medication so all can see and compare to each other giving us the ability to make informed decisions. I value each person on the site and their willingness to share their experience, data, and all other aspects of their health care. I am an informed patient now able to have a conversation with my physician on a higher level of understanding because of PatientsLikeMe.

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Another successful 24 Days of Giving!

Posted December 27th, 2016 by

That’s right – thanks to your awesome rallying, we reached our 24 Days of Giving goal again! Together, the PatientsLikeMe community donated a total of 428,459 health data points. We’ll be making a $25,000 donation to Make-A- Wish® Massachusetts and Rhode Island to help fund life-affirming wishes for seriously ill children.

What did the community donate? Check out this graphic for a by-the-numbers view.

 

 

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Meet Laura from the PatientsLikeMe Team of Advisors

Posted December 22nd, 2016 by

 

Say hello to Laura (thisdiva99), another member of your 2016-2017 Team of Advisors. Laura chatted with us about what it’s like to live with bipolar disorder and why she thinks it’s essential to find and connect with others who live with the same condition: “It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating.”

Laura also shared some details about her background as a professional opera singer. She’s performed all over the world and has even won a Grammy! Get to know Laura and read her advice for others who are living with chronic conditions.

What gives you the greatest joy and puts a smile on your face?

Hearing the laughter of my husband, my nieces, and my nephews brings me ultimate joy.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

My greatest obstacle in living with bipolar disorder is having to pretend that I am “OK” all the time. People with mental illness often find that they must hide their symptoms, and live in a quiet kind of agony of the mind, so that their friends won’t leave them, or so that they can keep their jobs. Living with bipolar disorder means constantly proving to the world that I am capable and worthy, that I am more than a bag of symptoms I constantly try to keep behind my back. I have been pretending to be OK for so long now that sometimes I don’t know where the pretending ends and my true self begins. I believe that education is KEY in bringing an end to stigma. Speaking openly about something lessens the fear and misinformation surrounding that thing.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

Bipolar disorder is an illness of opposites. I can go through weeks or months of crying constantly, sleeping all the time, and then escalate to feeling nothing at all. I want to die just so that the sadness and nothingness will stop. Then I swing up into mania, where I need very little sleep, I over-schedule myself and include myself in too many projects, and get more angry and frustrated. Eventually I want to smash everything around me, including my own head. When I’m lucky, I have brief periods of stability between depression and mania.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

You are worthy of love. You are worthy of feeling better. You did nothing wrong. You do not “deserve this.” You are not being punished. You just need to work with your family, friends, and treaters to find love and peace in yourself again.

How important has it been to you to find other people with your condition who understand what you’re going through?

It is of the utmost importance to connect with other Bipolar Warriors. Mental illness can be very isolating. Even though I have many friends and family who want to help (and often do!), sometimes you just need to speak with someone who knows what the bipolar roller coaster is like.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

Not too long ago, I had to advocate for myself with my mother. My parents are my greatest allies and have been through everything with me. But my parents have also instilled in me the need to “pull myself together,” because “the show must go on” (we are a family of performers). Recently, my mother became exasperated with how I was feeling, and how I was reacting to my illness. I had to stop and tell her that even though I love her more than anything, bipolar disorder is not something that can be shoved to the side. It is not an illness that can be put in a box and left until it is more convenient. It infiltrates my brain every second of every day,  and I will never stop working with it, and trying to live with it. Advocacy is really just about education, and I think that that is something that we can do every day of our lives.

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

PatientsLikeMe has shown me that I am capable of far more than I truly believe. It is so incredible to me that while other members of the community deal with horrible circumstances throughout their day, they can still take the time to offer me comfort or encouragement if I need it. PatientsLikeMe reminds me that I am allowed to be vulnerable or fragile at times, but that does not define me. It is part of the greater scheme and strength of having a chronic illness.

What are three things that we would be surprised to know about you?

  1. I am a professional opera singer. I have performed all over the world, recorded film scores, sung backup for James Taylor, sung at Superbowls and Red Sox games, and I am a Grammy award winner.
  2. I started reading when I was three years old, and I never stopped! I love the written word…especially Victorian Literature.
  3. I am a total geek…I love all things Star Trek, Star Wars, Doctor Who, and on and on and on!

What made you want to join the PatientsLikeMe Team of Advisors?

I love PatientsLikeMe, and I love helping people. When I was given the opportunity to combine those two things through the Team of Advisors, I jumped at the chance! It is so humbling and fulfilling when people bring you into their lives, and every encounter teaches me great lessons. My mother likes to say to me, “You have a big mouth; use it for good!” I hope that being a member of the Team of Advisors is doing just that.

 

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Member Susan shares about life with type 2 diabetes

Posted December 20th, 2016 by

Meet Susan (sugarpolicewoman) from Montgomery, Alabama. She loves birds, flowers and kittens and was diagnosed with type 2 diabetes over 40 years ago.

Check out her story to learn more about how she manages her condition while living in an assisted living facility.

Can you tell us a little about yourself? What are your passions?

I caught diabetes from my dad, who had diabetes, type 1.  I have type 2. I grew up in a Methodist preacher’s homes. We moved around an average of every four years, although my dad was a District Superintendent for six years once.  I had to switch schools quite a bit due to moving, therefore I never did develop close friendships, only casual acquaintances. We lived in several towns and cities in the state of South Carolina. When I was 14 years old, I caught chicken pox from my younger sister. The case was bad, probably because I had the pox later in life instead of during my younger years. When I had mumps, doctors still visited and treated sick people in the home. In front of me, my doctor told my mother I could have all the Coca-Cola I wanted. Unconsciously perhaps, that might have been the start of my diabetes.

I did not really discover diabetes until I was approximately 25 years old. Mercifully, I did not get sick during my college years. I have had my tonsils taken out, and also my spleen taken out because it was eating up my white blood vessels. I donated blood to the Red Cross one time, but that stopped when it was evident I had diabetes. I have loved books ever since they were read to me as a child, so quite naturally, I chose to be a librarian after college graduation where I majored in Library Science and minored in English. At first, I worked in a school library for one year, but working around teenagers just wasn’t for me. I worked a total of 40 years and 12 days as a federal employee in government libraries.

A favorite thing to do in junior high school and high school was reading books. One favorite time when I was a college student, I was playing softball during gym when my gym teacher had to play with us because there was not enough of us for 2 teams. I played left field, and caught her fly ball! I will never forget that! Now, during my “golden years,” I never seem to get enough time to be on my computer. I live in an assisted living facility, so the television is very welcome company! The computer is my main source for communication.

You were diagnosed over 40 years ago. Are there aspects of your condition that you still find challenging?

Diabetes can be a tricky disease. Management of my blood sugar levels has been very frustrating at times. Most the time, I know by hindsight what causes my sugar level to rise, but by then, my sugar has already risen. There is no easy way to manage blood sugar levels. You have to work hard. Other times, my sugar levels will bounce up and down like a yoyo. Once or twice, my sugar dropped low enough that I wound up in the emergency room. When the sugar level gets too low, you pass out. I was trying the wrong way to regulate my blood sugar level. The most recent challenge has been my fatigue. I feel really tired to the point that I just sit and watch television instead of doing my main daily job of putting clean clothes away. The fatigue is caused by high blood sugar. I recently discovered my dry mouth is also a symptom of high blood sugar. Thank goodness, I can solve this by drinking some cold ice water! Thinking about my husband’s declining health contributes and just adds to all the challenges.

In the forums you talk about managing your sugar in an assisted living facility where you have a restricted choice of food. Do you have any advice for others who might be in a similar situation?

The assisted living facility where I live has 24 residents in my building. There are four buildings or cottages on the campus. Meals are cooked and served to us in the dining room inside my cottage.  Meals are where the main challenge of managing my blood sugar levels becomes hard. I have very little choice of what to eat. We residents must choose if some of the foods on our plates are not diabetes friendly. Sometimes I have no choice but to eat pasta, bread, white rice or white potatoes if the menu is limited to very few items. My advice to other PatientsLikeMe members would be to do what I am trying to do. I try not to eat what I can do without. For example, if I can skip it, I avoid eating white rice or white potatoes because when these two foods get inside the body, they turn into sugar. Sugar is the diabetic’s enemy. Of course, I’d be forced to eat white rice if the cook mixes the rice with something else and creates a casserole for either lunch or dinner.

Has PatientsLikeMe has helped you manage your condition? What does it mean to you to donate your data?

When I post descriptive sentences about my condition or test results, this reminds me I must do something to improve the status of my condition. PatientsLikeMe helps me treat myself! If by donating this information about myself helps someone else, that would be wonderful!

 

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Meet John from the PatientsLikeMe Team of Advisors

Posted December 15th, 2016 by

Have you met John (JohnJFB126)? He’s another member of the 2016-2017 Team of Advisors.  John is a musician, husband and father of four. He’s also living with MS.

For John, living with an “invisible” disease is challenging, and he hopes for more compassion and understanding from others in the future. Here, John shares how he finds critical support in the PatientsLikeMe community: “It reinforces that I am not alone.”

What gives you the greatest joy and puts a smile on your face?

What gives me the greatest joy and puts a smile on my face is knowing that I helped someone.

What has been your greatest obstacle living with your condition, and what societal shifts do you think need to happen so that we’re more compassionate or understanding of these challenges?

The greatest obstacle living with this condition is its, oftentimes, invisibility. Especially when compared with other chronic and disabling conditions. Societal shifts need to occur resulting in more a compassionate or understanding of these challenges are a more concise, comprehensive overview of the disease and how it truly is idiosyncratic.

How would you describe your condition to someone who isn’t living with it and doesn’t understand what it’s like?

I have described this condition by comparing it to a frayed electrical cord with the inability to properly transmit the energy required to execute a function. Or, think of having MS as your computer’s hard drive sending a program execution but due to corrupt transmission lines/data paths, it needs to take additional time to map an alternate route to obtain the information and/or activate the desired program/effect.

If you could give one piece of advice to someone newly diagnosed with a chronic condition, what would it be?

One piece of advice I would offer to someone newly diagnosed with a chronic condition is: If you’ve been diagnosed with a chronic disease, it’s chronic and not necessarily fatal. Learn as much about the condition and include at least one person in this learning to serve as a buddy and/or support.

How important has it been to you to find other people with your condition who understand what you’re going through?

It has been incredibly important to me to find others living with the condition and who may be able to relate to what I’m going through. Their insights, struggles and successes have proven to be invaluable; it reinforces that I am not alone.

Recount a time when you’ve had to advocate for yourself with your provider, caregiver, insurer, or someone else.

I have often had to advocate for myself with my insurance providers; needing to articulate the need for coverage of a procedure or medication as those items were critical to my ongoing care and health stability.

What made you want to join the PatientsLikeMe Team of Advisors?

I see the opportunity to join the PatientsLikeMe Team of Advisors as the chance to learn, give, and make a difference in the lives of individuals around the globe!

How has PatientsLikeMe (or other members of the PatientsLikeMe community) impacted how you cope with your condition?

The PatientsLikeMe community has been a source of reference, strength, and encouragement for me as I cope with the diagnosis given me.

If given the opportunity to participate in efforts to change something which would transform how the current healthcare system is implemented and designed, what would it be?

I would work collaboratively with government (legislators/representatives), pharmaceutical and insurance companies and the medical community to transform methods for the delivery of care to persons with chronic disease diagnoses and other long term health illnesses. The goal being to streamline, reduce the need for repeated/duplicative procedures, create a system that “speaks the same language” across all platforms, and delivers timely services to each patient (“tailor made” care).

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The power of your data: Patient empowerment

Posted December 14th, 2016 by

We’re more than halfway through 24 Days of Giving and we’ve been sharing how patient data has the power to create better communities, better care and a better you. So, while we’re on the subject of you – let’s talk more about how patients see themselves as the captains of their own health when it comes to care. That’s right: patient empowerment.

The results of a study we did a while back with our partners at Genentech have just recently been published in a scientific journal called “The Patient – Patient-Centered Outcomes Research.” What was this study about? Simple. It was about how finding healthcare information, interacting with peers and providers and access to healthcare contribute to your sense of empowerment as a patient with a chronic condition.

More than 3,988 of you participated. What was discovered? Check out some of the top takeaways:

Empowerment comes in two kinds:

  • Positive Patient-Provider Interaction (i.e., how favorably you view the care received from your healthcare provider)
  • Knowledge and Personal Control (i.e., how well you understand, manage and control your health condition(s))

Empowerment varies:

  • The average score on “patient empowerment” (on a scale of 15 – 75) was higher among patients with primary complaint of Parkinson’s disease (average = 62) and multiple sclerosis (average = 60) than those with fibromyalgia (average = 55) and chronic fatigue syndrome (average = 55).
    • Ooof, that’s barely English. Said another way, it appears that fibromyalgia and chronic fatigue syndrome patients feel slightly less empowered than people living with Parkinson’s or MS.
  • But across all conditions, those who were older, male, more educated and insured also reported significantly greater levels of empowerment.

What’s most important to you when it comes to empowerment?

For you, it’s important to:

  • be active in treatment goal setting with providers;
  • make sure that your provider spends enough time with you answering questions;
  • make sure that you understand the treatment and diagnosis, and any materials that are given to you; and
  • learn about and understand disease warning signs/symptoms, disease progression, and available treatment options. 

Knowledge is power:

How do you learn about your condition?

  • You use health websites like WebMD and Mayo Clinic (87%), PatientsLikeMe.com (60%), books (43%), magazines (40%), and journals (36%).
  • More than half of you get health information verbally from a doctor (59%).

What do you learn about your condition?

The information you find helps you learn about…

  • Treatment options (83%)
  • Course and progression of your disease (76%)
  • Signs and symptoms (68%)
  • Cause of condition (51%)
  • Initial diagnosis (50%)
  • Health monitoring (48%)

Doctor relationships:

  • Many of you are satisfied with your access to healthcare services (64%) and your relationship with your doctor (77%).
  • The majority of you (79%) feel like you have a say in your treatment decision-making, and are satisfied with the care you receive from your doctor (73%).
  • Some of you feel that your treatment goals don’t match your doctor’s plan (34%), or that you don’t spend enough time with your primary doctor during visits (36%).

Peer support:

  • For 47% of you, friends are a source of support and help care for and manage your condition.
  • Most of you manage your condition with help from others (74%) and learn from the experiences of those who are part of online communities like PatientsLikeMe (69%).

If you were one of the many who contributed to this research – thank you. What you shared proved that the differences in empowerment levels across conditions warrant further study. That’s the power of your data in action!

 

 

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The power of your data: How it works for you

Posted December 13th, 2016 by

For these 24 Days of Giving, we’ve been sharing how patient data has the power to change healthcare for the better. But how does the data you donate work for YOU in your own health journey?

PatientsLikeMe members are starting to answer that as part of an ongoing initiative, giving us feedback about the benefits of learning, tracking and connecting on PatientsLikeMe. And no, we’re not trying to toot our own horn here – we’re trying to see how and where you get value from the site so we can do more of what we’re doing right and less of…well, all the other stuff.

Even though this research is far from over, we wanted to share a couple of highlights from the community.

So, what are members who’ve taken the survey saying? How has PatientsLikeMe helped you to better understand your condition or improve some aspect of your care? Let’s have a look.

Here are the top 3 things you understand better since joining PatientsLikeMe*:

  • How your condition(s) might affect you – 67%
  • What might help you live better with your condition(s) – 63%
  • Treatment side effects – 61%

Others include:

  • Available treatments – 61%
  • Important factors in making decisions about treatments – 57%
  • What might help you get better – 50%
  • How to deal with other problems in your life (e.g. stress, work, money) that may be caused by your condition(s) – 49%

Here are the top 2 ways your relationship with providers and symptom management improved*:

  • Had better conversations with your healthcare professionals – 52%
  • Managed your symptoms better – 46%

Others include:

  • Been better at taking your medication – 34%
  • Tried a new way to manage side effects – 31%
  • Asked to see a specialist doctor – 25%
  • Start a new treatment – 16%
  • Stopped a treatment – 15%
  • Changed your doctor – 13%

Top takeaway? Participating on PatientsLikeMe seems to be having some positive benefits to understanding your condition, managing your symptoms and communicating with your care team. Now that’s some pretty powerful stuff.

 

*Note: Of those who took the survey, approximately 6-8% missing for each question. Percents are calculated out of valid non-missing responses.

 

 

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24 Days of Giving: Halfway checkpoint

Posted December 12th, 2016 by

The midpoint. The halfway mark. Call it what you want, but we’re smack in the middle of 24 Days of Giving. So, where do we stand on the data donation front? Let’s take a look:

  • 12,340 treatment reports
  • 90,610 symptom reports
  • 72,593 health outcomes

So if you’ve been donating, keep at it. If not, why wait? Your data has power – just watch what some PatientsLikeMe employees have to say about it.

Every piece of health data you share on PatientsLikeMe over the next 24 days will contribute towards a $25,000 donation goal to Make-A-Wish® Massachusetts and Rhode Island. You donate your experiences that can help someone like you, and we’ll donate on your behalf to help fund life-affirming wishes for seriously ill children. 

 

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