402 posts tagged “PatientsLikeMe”

World Parkinson’s Day: Meet Eileen, a PatientsLikeMe researcher with a passion for PD

Posted April 11th, 2017 by

Researcher Interview on Parkinson's Disease

Today is World Parkinson’s Day, and 2017 marks the 200th anniversary of the identification of Parkinson’s Disease (PD). Meet Eileen Mack Thorley, a research scientist with a passion for PD research. By day, she works on a variety of research projects at PatientsLikeMe. On her own time, you might find her doing FaceTime with her dad to help him practice his physical therapy exercises for living with Parkinson’s. He was diagnosed with PD more than 10 years ago.

Eileen said her father’s PD diagnosis inspired her to get involved with the Team Fox Foundation Young Professionals of Boston (part of the Michael J. Fox Foundation), and ultimately led her to venture into PD research as part of her day job.

Eileen has a master’s degree in public health and specializes in epidemiology, data analysis and public health research. She has been working in the field for 8 years, previously focusing on the areas of substance abuse and maternal and child health.

“Where I want to be now is focusing on Parkinson’s research and community health – living with the disease and bringing the patient experience into research,” Eileen said. In addition to a focus on traditional medical breakthroughs in Parkinson’s research, she has a personal interest in the area of complementary therapies for PD management – especially music and relaxation. “There’s a growing body of research on the benefits of relaxation.  How can we better understand and apply these benefits as part of disease management?”

Eileen attended the 4th World Parkinson Congress in Portland, Oregon, this past fall and wanted to share some highlights from the conference.

What was it like to attend the World Parkinson Congress as both a researcher and a family member of a person living with PD?

On a professional level, I was excited for the opportunity to attend this conference to expand my current understanding of the latest in research and medical advancements with the aim of applying new insights to our research. The conference brings together researchers, health care practitioners and patients living with Parkinson’s around the current state in Parkinson’s research, science and care.

Personally, it was also a meaningful experience to me to have exposure to this conference and community as I have a family connection. My dad has been living with a Parkinson’s for over 10 years.  Parkinson’s certainly has had a profound impact on our family and it’s difficult for me to adequately express how important improved care, treatment and any discoveries that improve daily life are to me.

Could you walk us through an overview and some highlights of the conference? Did the conference feel patient-centered? How so? 

Over 4,500 attendees from 67 countries were present, including over 2,000 patients living with Parkinson’s, their care partners, and family members. It was encouraging to reflect on how many people are working on different ways to make life better for those living with Parkinson’s with an ultimate eye toward a cure.

 

“Being in a huge convention space filled with physicians; care providers; non-profits; clinicians; scientists who dedicated their lives toward care, research and support in Parkinson’s – alongside others who experience this disease first-hand in daily life – was truly powerful and humbling.”
–Eileen on attending the 4th World Parkinson Congress

 

From my view as both a researcher and a family member, I appreciated that there was a combination of technical discussion on the latest in treatments and research along with a presence of the patient voice and experience. After a plenary discussion on the latest in deep brain stimulation (DBS), including ultrasound as a developing, non-surgical approach (albeit mainly for tremor, including other caveats), there was a presentation from a patient named Andy McDowell who went through DBS and he shared his story. Some of the other research themes included wearables and apps to track movements; immuno-therapeutic approaches and targeting alpha-synuclein (this was a particular focus in drug development as it could be helpful across a range of conditions including but not limited to Parkinson’s); and genetics research (primarily on the LRRK2 gene).

I appreciated that the conference highlighted non-drug and complimentary therapies in addition to medical care including a focus on exercise, relaxation and wellness services for patients; the conference included a “Wellness Way” section where patients could sign up for massage, reiki, yoga (‘yogadopa’), boxing (with Rock Steady Boxing), singing/vocal exercises, dance, breath-work and more.

 

“I sat in on one of the wellness sessions to observe with the aim of picking up any insight to share with my dad. An atmosphere of support among patients was palpable and touching.”
–Eileen on the wellness sessions at the WPC

 

All together, these elements helped set a nice tone for the conference – research and applied practice; clinical care and daily life once you are home and no longer in the doctor’s office.

What were some of your biggest takeaways from the conference? Can you apply anything you learned at the conference to your job at PatientsLikeMe? 

While the conference highlighted many of the advancements and the current work is promising, we know much more work is needed. There is a large community and network of efforts around care and research, and we all have a role to play. The conference underlined the importance of bringing the patient voice to technical research and these projects. There are so many unknowns. There’s so much we need to learn from your experience.

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Largest Patient Poll on ACA Shows Patients Value Health Care Law More Than the General Population, Are Less Inclined to Want a Repeal

Posted February 7th, 2017 by

Lowering Costs, Coverage for Pre-existing Conditions Remain Top Priorities; If Changes Are Required, Individual Mandate Should Go  

CAMBRIDGE, Mass., February 7, 2017—As Congress and the White House continue to discuss potential changes to the Affordable Care Act (ACA), PatientsLikeMe revealed results from the first large-scale poll to assess patient priorities for the health care law. The poll’s 2,197 respondents are among the estimated 133 million Americans living with chronic conditions.

Sally Okun, PatientsLikeMe’s Vice President of Advocacy, Policy and Patient Safety, said the poll gives voice to those who may be most heavily impacted by changes to the law. “Regardless of your political leaning, the great equalizer is that we’ll all become sick one day. At this time of uncertainty about the future of health care, listening to the voice of patients today will illuminate the path forward for all of us.”

Key findings from the poll show that overall, patients have the same concerns as the general population about health care costs, but see benefits in the law that the healthy may have overlooked:

  • More than half (57%) believe the ACA has been helpful to people living with chronic conditions.
  • Nearly half (46%) feel the ACA needs only minor modifications to improve it.
  • Over the last year, their out-of-pocket expenses for health care have either stayed the same (47%) or increased (43%).
  • Lowering costs is a priority for both patients in the PatientsLikeMe poll and for the general population, which took part in a December 2016 Kaiser Health Tracking Poll. Lowering the amount individuals pay for health care is an important priority for 94% of patients and 93% of the general population. Lowering the cost of prescription drugs is an important priority for 96% of patients and 89% of the general population.
  • Nearly half (46%) of PatientsLikeMe poll respondents felt that a repeal of the 2010 ACA “should not be done,” while one third (31%) of the Kaiser general population felt it “should not be done.”
  • When asked which one component of the ACA they would eliminate if they were forced to choose, PatientsLikeMe respondents were four times more likely to say they would eliminate the individual mandate vs. other components of the ACA.
  • When asked which one component of the ACA they would keep if they were forced to choose, PatientsLikeMe respondents were six times more likely to say they would keep mandatory coverage for pre-existing conditions vs. other components of the ACA.
  • The widest differences in opinion related to questions about a repeal of and government involvement in health care law, and were found between the general population, non-condition specific patients, and those who reported major depressive disorder (MDD) as their primary condition:
  • Of those living with MDD, 59% said that the health care law should not be repealed, vs. 45% of the overall PatientsLikeMe respondents and 31% of the Kaiser general population.
  • 42% of respondents living with MDD said decreasing federal government spending on health care should not be done, vs. 29% of the overall patient population and 18% of the Kaiser general population.
  • As for reducing the federal government’s role in health care, 37% of patients living with MDD said it should not be done, compared to 28% of the overall patient population and 20% of the Kaiser general population.

Okun said that patients living with MDD may have a stronger opinion about healthcare law given the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), a law passed by Congress in 2008 and codified into rules in 2013 to ensure equal treatment coverage for mental illness and addiction. According to the National Alliance on Mental Illness (NAMI), before the law, “mental health treatment was typically covered at far lower levels in health insurance policies than physical illness.”

Full survey results and graphics are available at http://news.patientslikeme.com.

PatientsLikeMe Poll Methodology
Between January 23-27, 2017, PatientsLikeMe fielded a 19-question poll to a sample of its members in the United States who are living with chronic or progressive degenerative conditions. A total of 2,197 patients completed the poll, which asked both original questions and questions from a December 2016 Kaiser Health Tracking Poll to compare patient and general population responses.

Respondents had a range of chronic or progressive medical conditions and listed their primary condition as multiple sclerosis (13%), fibromyalgia (12%), Parkinson’s disease (6%), major depressive disorder (5%), ALS (5%), type 2 diabetes (3%) and multiple myeloma (3%), among many other conditions. The mean age of respondents was 54.5 years (the range was 18- >89). Of 1,840 respondents who gave information on level of education (83.8% of total), 1.0% had less than a high school diploma, 11.0% had high school diplomas, 38.3% had some college, 27.7% reported a college degree, and 22% reported post-graduate education. About one-third (36%) of patients had health insurance through their employer, one-third (35%) had Medicare; and the rest had a mix of other health care coverage including Medicaid, VA, military, and direct pay insurance, which includes insurance purchased from ACA exchange programs. A very small percentage (2.5%) of respondents said they had no health insurance. Nearly all respondents (95%) are registered voters. Their party affiliation is as follows: 37% say they are Democrats, 19% are Republicans; 15% are Independent; 13% preferred not to say; 11% are unaffiliated and 4% are Libertarian.

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 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.

 


Top Rheumatoid Blogs of 2016

Posted February 2nd, 2017 by

Today is Rheumatoid Awareness Day and this year we wanted to share some of the top rheumatoid arthritis blogs that were included in Healthline’s 16 Best Rheumatoid Arthritis Blogs of 2016 list:

  1. Itis

Stay up-to-date to learn about RA’s long-term effects and practical tips for living with RA. This blogger’s socks help treat the pain of RA and of Raynaud’s, (an autoimmune blood vessel dysfunction that sometimes co-occurs with RA).

2. All Flared Up

This blog is about “living rather than wallowing” with RA. Check in to see how blogger Amanda is learning to understand her body and how it works with RA.

3. Arthritic Chick

Before Arthritic Chick was finally diagnosed with RA, she suffered with pain in her hands, feet and ribs for years. On her blog, she shares the good days, and her bad days with openness, honesty and strength.

4. An Attitude of Gratitude

Julie Faulds’ easygoing blog gives us a peek into her life with her family, thunder-phobic dog — and, her RA and fibromyalgia. Julie chooses an “attitude of gratitude” and her bad days make her good days better and brighter. Always an advocate of finding the positive, she suggests thinking of your RA downtime as a “spa day” instead of a sick day.

5. Carla’s Corner

Carla Kienast’s RA journey has included knee, hip, and back surgery and her posts cover everything from the latest CDC guidelines, to how her 12 doctors each have just a glimpse of her whole self, through the lens of each of her individual health issues.

Want to see what other blogs made the list? Check out the Top 16.

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A PatientsLikeMe researcher’s take on the opioid crisis and new prescribing regulations

Posted January 25th, 2017 by

Meet Emily (EmilyMcNaughton), a PatientsLikeMe researcher with more than ten years of experience in both the private and public sector. She’s here to weigh in on the recent Boston Globe article addressing the aftermath of the opioid crisis. New prescribing regulations have some doctors hesitant to prescribe these drugs, but that could prove more harmful to the patients who rely on them for pain control.

Check out the Boston Globe article, and see what Emily has to say below.

 

A researcher’s perspective

Prescription opioid medications have been widely discussed over the past 15 years, especially with the surge of prescriptions dispensed during the 2000s, which created an epidemic of abuse and overdose-related deaths. Because the prescription-opioid landscape seems to be constantly changing, people all across the medical, public health, regulatory and pharmaceutical sectors have been working to find solutions that will still allow patients to access their prescribed pain medications while minimizing problems with abuse, misuse, death, and product diversion (when patients either share, give or sell their prescription medications, or medications are stolen).

Many would agree that it’s been helpful to increase awareness, education and open communication between doctors and patients about these medications, but some aspects of restricting the availability of prescription opioids might cause unintended harm to patients.  As this Boston Globe article highlights, many doctors are now prescribing fewer opioids than in previous years and in some cases doctors fear that these reductions may hurt patients.

With any public health problem, solutions are not always perfect and there are pros and cons to every decision. In terms of prescription opioid medication, here are some of my thoughts on public health recommendations, regulatory changes and how they might impact patients. 

Advantages

  • There’s more awareness around how to appropriately use prescription opioids, the potential risks they pose and the proper prescribing practices, both within the medical community as well as patients and the public.
  • We’re seeing recommendations for increased patient-doctor communication about goals for prescription opioid use as well as alternative treatments, when appropriate.

Potential Unintended Consequences

  • There’s a growing pressure among doctors who fear there may be consequences for prescribing opioid medications.
  • There’s a possibility that difficult regulatory hurdles might deter a physician’s willingness, or even ability, to prescribe opioid medications in appropriate situations.
  • Blanket regulations that set maximum prescribing limits do not take into account the individual needs of each patient or doctor expertise.
  • Patients might have insufficient access to or may be unable to afford alternative treatments or pain medicine specialists if a physician is reluctant to prescribe opioid medications.

Other Considerations

  • Regulatory changes don’t address the issue of opioid-deaths that are caused by abuse of non-pharmaceutical products, like heroin.
  • For individuals with opioid addiction, substance abuse treatment remains complicated and is not always affordable.

What do you think about this topic?

 

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Thyroid Awareness Month

Posted January 24th, 2017 by

January is Thyroid Awareness Month. Why do we need awareness? An estimated 15 million Americans have undiagnosed thyroid problems. Women are five times more likely than men to suffer from hypothyroidism, which occurs when the gland does not produce enough thyroid hormone for the body to function properly.

Who has HYPOthyroidism on PatientsLikeMe?

  • 6,920 patients have this condition
  • 30 new patients joined this month
  • 1,271 say hypothyroidism is their primary condition

Who has HYPERthyroidism on PatientsLikeMe?

  • 518 patients have this condition
  • 3 new patients joined this month
  • 166 say hyperthyroidism is their primary condition

A simple self-exam to “check your neck” could help with early detection or help you find lumps or enlargements in the neck that may point to a thyroid condition.

Think you might have a thyroid problem? Here’s how to perform a neck check at home – all you need is a handheld mirror and a glass of water:

What’s one thing you’d like others to know about living with a thyroid condition? Comment here or head to the forum to join the conversation.

 

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Meet Cris from the PatientsLikeMe Team of Advisors

Posted January 19th, 2017 by

Say hello to Cris (@Criss02), another member of the 2016-2017 Team of Advisors. Cris is a proud grandparent and a vocal advocate for the ALS community. She sat down with us and opened up about what it’s really like to live with her condition.

Cris recently presented at the ALS Advocacy conference in Washington D.C., and she chatted with us about why raising her voice is so important: “Without our voices things would remain the status quo.”

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

Family. Just waking up in the morning. Thankful my son and his wife have taken us in so we’re not alone on this journey. So proud of him as a dad, teacher/coach! Seeing my teenage grandson each day with his silly sense of humor, loving kindness and our talks about his day as he lays on my bed. Seeing my granddaughter every day and proud of the woman and mother she has become – we watch our great granddaughter for her while she works. I can’t hold her but I can feed her on my lap and talk and be silly with her, my husband has diaper duty! Such a joy to be able to spend time with an infant, watch her grow, smile and coo as she becomes more aware.

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?

Without hesitation my greatest obstacle is losing independence. The ability to just get in the car to go shopping, grandson’s football and baseball games or dinner without worrying about weakness, falling or becoming fatigued causing excursion to be cut short for my “driver”. It becomes my main concern when deciding participation in outside activities – consequently I am missing out on events I enjoy.

Ironically, I never hesitate to go to health related advocacy and meeting events (near and far) – perhaps because I’m in a comfortable “safe place” with “my own”. I’m still able to walk short distances without assistance. However it’s unnerving being in the general public subject to constant stares or side glanced looks at my unstable walking. Often wonder if they think I’m intoxicated (which is funny as I don’t drink alcohol) – I’ve jokingly asked if I did drink would it straighten my gait? Upcoming wheelchair usage will undoubtedly escalate social anxiety and more stares.

Public awareness and compassion seems to be insurmountable making the question of on how to further their understanding. My thoughts are start with the young and teens – with the hopes as they grow older they will share compassion. Unfortunately, it seems, unless one has a personal experience with someone with a disease or disability they are complacent. That’s sad.

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

Living with ALS, at least my experience so far, is like feeling your body deteriorate one stiffening muscle spasm and tingling nerve at a time all the while your brain is telling you “it’ll pass”…only it doesn’t. Mornings are the hardest moving a finger at a time, then a toe or legs carefully trying to avoid horrific muscle spasms that hurt after subsiding – as if I had just run a marathon or worked out with weights. The loss of use in one arm/hand (2 years now) was tolerable, although as a graphic designer was career ending – now my good right arm/hand is increasingly becoming deficient – although I can still type with one finger. Having someone cut my food has since altered what I choose to eat in company. The mind will still be active as the body loses every function. I’m one of the fortunate slow progression patients still with use of my weakening legs, although several falls have awakened my denial knowing a wheelchair is in the near future. It will need to be tricked out – a power wheelchair with necessary medical features geared for someone with ALS and total function loss. Eventually I’ll be unable to breathe and may use a breathing device or unable speak and with luck will get an eye gaze communicator. Without all it will be death. There is no cure. But living day to day I do the best I can to make every day count.

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

Take your head out of the sand. Denial is not healthy and a waste of precious time! Importantly with any disease, I highly recommend working closely with your specialist or specialized clinic. Ask about clinical trials – early in diagnosis this could be critical for acceptance in a protocol. Research trials, associations, medications, therapies…anything specific to the disease. Don’t be afraid to ask questions or disagree with treatments. Knowledge is key! Get involved in your diagnosis and it’s “your” future.

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

Extremely important to connect with my fellow pALS and their cALS for emotional and knowledgeable support. They alone understand what I’m going through but unconditionally are matter of fact about its reality. My fellow patients are a family of a disease nobody wants.

Meeting pALS who have further and advanced progression but are still active in advocacy, policy changes, clinical research and more have been my inspirations and mentors. I no longer sit on the sidelines and for them I am eternally grateful.

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

So far I haven’t had a problem and had to advocate with the exception of misdiagnosis for over a year. Since confirmed diagnosis I have been fortunate my specialist is a compassionate ALS advocate and researcher who has encouraged my advocacy and participation in educating others.

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

Participating in causes was barely on my agenda the past 60+ years – which I now feel was completely selfish. I was just working, raising kids and grandkids. However, since my diagnosis I came to realize I wasted precious time when my small voice could’ve been heard somewhere making a difference. When I started a clinical trial protocol I was introduced to PatientsLikeMe and instantly felt a bond with the pALS in my forum and was pleased to have met a few at Advocacy in Washington and was surprised by their openness and requests for information and my story. Quickly I knew I wanted to help in any way possible from my diseases perspective to others who just needed a shoulder or guidance. I am thankful that I have the opportunity to “make a difference” so late in my life.

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

I have a pretty good attitude and honestly know what’s in store but other members who are going through the worse aspects of this horrific disease have helped me accept reality. But, with that reality have helped me understand the journey and that I’m not alone. “It takes a village.”

Why should a patient advocate for patients care, disease specific necessary medical equipment, legislation or clinical trials?

Without our voices things would remain the status quo – healthcare would continue to be impersonal, medical support equipment for specific diseases would go unused, legislators would put clinical trials on the back burner as being too expensive – consequently patients would continue to die. My closing remarks at ALS Advocacy in DC to my state senators and representatives is a sample of my feelings for our “asks” for my incurable disease but could the message could apply to many! “In closing, I do want to remind you – in 75 years ALS has not discriminated with age, gender, race or economic status and will strike unknowingly at any moment. So, next time YOU drop a pen, choke when your drink goes down wrong, get up stiff and unable to move after sitting or laying or you stumble over that blade of grass – maybe you will think about what legislation, clinical trials and medical support you would like in affect if ALS were to invade YOUR body.”

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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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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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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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PatientsLikeMe Co-Founders Jamie and Ben Heywood Win International Alliance of ALS/MND Associations 2016 Humanitarian Award

Posted December 8th, 2016 by

DUBLIN—December 8, 2016—A decade after their work sparked a revolution in patient empowerment and patient-centered medicine, PatientsLikeMe co-founders Jamie and Ben Heywood were awarded the 2016 Humanitarian Award by the International Alliance of ALS/MND Associations.

Inaugurated in 2000, the Humanitarian Award recognizes and encourages contributions to the fight against Amyotrophic Lateral Sclerosis/Motor Neurone Disease (ALS/MND) and is awarded to those whose work is of international significance for people affected by ALS/MND.

In presenting the award, the Alliance’s citation acknowledged the founding of both the patient network PatientsLikeMe and the ALS Therapy Development Institute (ALS TDI), the world’s first non-profit biotechnology company. “When their brother was diagnosed with ALS at the age of 29, James Allen Heywood and Benjamin Heywood were devastated at his prognosis and at the lack of effective treatments for the disease. They saw firsthand how isolating ALS/MND can be. They took up these challenges as a family and, with family and friends, founded two organizations: ALS TDI, tasked with finding effective treatments for the condition, and PatientsLikeMe, to tackle social isolation and to collect data on what other drugs, interventions or supplements might make a difference to those with ALS/MND.”

Jamie Heywood thanked the association on behalf of his family and PatientsLikeMe members and staff and said the company is ready to lead the next decade of advancements in research and medicine, with and for patients. “We changed the rules by helping patients digitize and share their experience so they could make more informed decisions about how to live with and treat their condition. Now we’re embarking on the next stage of the journey by piloting biomarker discovery in ALS and other conditions. We hope many more patients will join us as we work together to find new answers.”

More information about how to be part of PatientsLikeMe’s upcoming research in ALS/MND is available at www.patientslikeme.com/advanceals.

About PatientsLikeMe
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 85 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact                                                                                                                Margot Carlson Delogne
PatientsLikeMe
781.492.1039
mcdelogne@patientslikeme.com

 


PatientsLikeMe Kicks off 3rd Annual “24 Days of Giving”

Posted November 29th, 2016 by

People Living With Chronic Conditions Encouraged to Donate Health Data for 24 Days

November 29, 2016 – CAMBRIDGE, Mass. – Beginning today on #GivingTuesday, PatientsLikeMe is kicking off its third-annual #24DaysofGiving to celebrate “the tradition of generosity.” Over the next 24 days, PatientsLikeMe is asking members to rally together, rethink what it means to give back and donate their health data on PatientsLikeMe.com after donating to their favorite charity or nonprofit. PatientsLikeMe is giving back, as well. During 24 Days of Giving, the company will once again showcase important research that has benefited from patient data in the last year. For every piece of health data shared during 24 Days of Giving, PatientsLikeMe will  make a donation to Make-A-Wish® Massachusetts and Rhode Island, up to $25,000, to help fund life-affirming wishes for seriously ill children.

Since it first launched in 2014, PatientsLikeMe members have donated nearly one million data points about their health during 24 Days of Giving, including 60,000 treatment reports, 218,000 symptom reports and 269,000 health outcomes reports. As a result, over the last two years, a total of $40,000 has been donated to Make-A-Wish Massachusetts and Rhode Island. Through these donations, four wishes have been granted to children in the Massachusetts-Rhode Island area.

PatientsLikeMe is a patient network that aggregates the health data members share so that others can learn more about how to improve their outcomes and contribute data for research. Health data includes information about a disease or condition – how people live with it, what their doctors are doing to treat it, and what it’s like to navigate their health journey. PatientsLikeMe analyzes the donated data to spot trends in specific diseases and works with partners to incorporate patient-reported evidence in their research. Partners can then create new products and services that are more in tune with what patients experience and need.

“Over the past two years of 24 Days of Giving, new and existing members have generously donated their health data for good – whether through their treatment evaluations, symptom reports or other health updates,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology and Operations. “We hope people will join us again this year, because the data they share on PatientsLikeMe during 24 Days of Giving – and every day beyond – gives others the best information to make more informed health decisions, and could change someone’s life for the better.”

“24 Days of Giving” will be active across PatientsLikeMe’s Twitter, Facebook and Instagram social media channels through December (#24DaysofGiving). Anyone who is living with a chronic condition can create a profile on PatientsLikeMe and start tracking their symptoms, treatments and quality of life for free. Existing members are encouraged to keep their profiles up-to-date or complete a new treatment evaluation. To learn more, go to www.patientslikeme.com.

About PatientsLikeMe 
PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

About Make-A-Wish® Massachusetts and Rhode Island

Make-A-Wish® Massachusetts and Rhode Island grants wishes for children between the ages of 2½ and 18 years of age with life-threatening medical conditions to enrich the human experience with hope, strength, and joy. For a child with a life-threatening illness, a wish fulfilled provides profound joy and lasting hope to keep fighting and dreaming for the future. In its 29-year history, the organization has granted more than 7,500 wishes for children in Massachusetts and Rhode Island. Visit Make-A-Wish Massachusetts and Rhode Island at www.massri.wish.org for more information, to make a donation, or to learn about volunteer opportunities. Find us on Facebook at Facebook.com/MassRIWish, Twitter at Twitter.com/MakeAWishMassRI and Instagram at Instagram.com/MakeAWishMARI.

Contact
Katherine Bragg
kbragg@patientslikeme.com
617-548-1375


PatientsLikeMe Adds Patient Reviews of Medications to Walgreens.com

Posted November 17th, 2016 by

Real-World Reports on Use, Effectiveness and Alternative Medications Now Available for Thousands of Brand Name and Generic Drugs

CAMBRIDGE, MA., November 17, 2016PatientsLikeMe has expanded the scope of patient-reported information it offers through Walgreens.com to help more people better understand how certain prescription medications may affect them.

The new information, which is updated daily and comes from aggregated reports by PatientsLikeMe members, highlights the reasons why patients use specific prescription drugs and how effective they think they are. Also included are lists of the top five medication alternatives patients have tried for the same condition, as well as links to more extensive reports about dosage, duration, adherence and burden for more than 5,000 medications.

PatientsLikeMe is a free network where anyone living with a chronic condition can track and share symptom and treatment experiences, connect with others and contribute data for research. The website has helped more than 400,000 people learn from each other about how to improve outcomes.

Walgreens is the first pharmacy to provide PatientsLikeMe reports about medications on its website. The offering is an expansion of the collaboration between the two companies formed in 2015, when PatientsLikeMe first offered its patient-reported information on medications’ side effects and their severity on Walgreens Health Dashboard, a secure and private personalized health information offering.

“Whether you’re just starting a new medication or you’re researching alternatives, knowing what others have already experienced is invaluable,” said Michael Evers, PatientsLikeMe’s Executive Vice President of Marketing, Technology & Operations. “We’re excited that our members are helping more people know their options and what to expect, so that everyone can make more informed choices for their health.”

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers and nonprofits develop more effective products, services and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Margot Carlson Delogne
(781) 492-1039
mcdelogne@patientslikeme.com


PatientsLikeMe Launches Virtual Trial for ALS Patients

Posted October 25th, 2016 by

Study With Major Academic Medical Center to Evaluate the Potential of the Soy Peptide Lunasin to Reverse ALS Symptoms


DURHAM, N.C., October 25, 2016—PatientsLikeMe and The Duke ALS Clinic have just completed enrollment in a virtual trial designed to test whether Lunasin, a peptide found in soy and some cereal grains, is helpful or harmful to patients living with amyotrophic lateral sclerosis (ALS). The Lunasin Virtual Trial is the first study of the supplement in ALS patients and follows a review analyzing its potential to reverse ALS in ALSUntangled, a website for clinicians, patients and researchers to explore alternative treatments.

Duke ALS Clinic Director and ALSUntangled Founder Richard Bedlack, MD, said he first heard about Lunasin’s potential from Mike McDuff, an ALS patient who took the supplement and experienced dramatic improvements in speech, swallowing and limb strength.

“I reviewed Mike’s records and reports, and both his diagnosis and his improvements appeared real,” Bedlack said. “Of course, Mike might have an ALS mimic we don’t know how to test for, or his body may have found a way to beat ALS independent of treatment. But there is one more possibility: his Lunasin regimen might have actually worked. I was compelled to design a study to treat other ALS patients with the same regimen to test if anyone else improves.”

As part of the trial, 50 participants will make three in-person visits to the Duke ALS clinic to measure the supplement’s impact over the course of the year-long study. They will also complete virtual check-ins as members of PatientsLikeMe every 30 days to update their weight, complete an evaluation of their Lunasin regimen, and complete the ALS Functional Rating Scale (Revised, ALSFRS-R), a widely-used patient-reported outcome developed by PatientsLikeMe that allows patients to see their disease progression visually and in context.

Bedlack said the study’s design is patient-centric and eliminates many of the frustrations patients say are inherent in traditional clinical trials. The design also likely contributed to what Bedlack calls the fastest enrollment of any trial in ALS history: the virtual trial took just over five months to fill.

“There are no placebos, and we made the inclusion criteria very broad so that even ALS patients who can’t qualify for other studies due to their long disease duration or use of a ventilator can qualify,” Bedlack said. “We’re also limiting the burden on the participants by helping them check in online from the comfort of home. And we’ve already published the protocol on our ALS Reversals website. We’re taking a completely open approach so that anyone, anywhere, can see the details of what we’re testing and learn more about whether this is helpful, harmful, or does nothing at all. I think all of these factors made the trial very attractive to ALS patients.”

PatientsLikeMe began as a website for people living with ALS to openly share their experiences with each other and study alternative and off-label treatments. Vice President of Innovation Paul Wicks, PhD, said the company’s research focus gave ALS patients a science-based platform to monitor themselves, get ideas from other patients, and play a more active role in their own healthcare. That focus has also helped the company produce more than 30 published research studies on the condition, including a 2011 observational study in Nature Biotechnology that refuted the results of a 2008 clinical trial on the efficacy of lithium carbonate on ALS. More recently the company has worked with Bedlack to study the frequency of ALS plateaus and reversals. Findings from that study were recently published online and in the March 2016 print edition of the journal Neurology.

Anyone taking Lunasin outside of the Lunasin Virtual Trial is invited to separately track their experiences on PatientsLikeMe at www.patientslikeme.com.

ALS is a degenerative disorder affecting upper motor neurons in the brain and lower motor neurons in the brain stem and spinal cord. Symptoms include progressive weakness, atrophy, fasciculation, dysphagia, and eventual paralysis of respiratory function.

Study Design Methodology

The Lunasin Virtual Trial is a 12-month, widely inclusive, largely virtual, single-center, open-label pilot trial utilizing a historical control group. Participants will be asked to sign in or register for an account on www.patientslikeme.com with the help of the study coordinator and will be given a welcome packet that includes a one sheet description of the study, a checkup checklist, and the first month of a total 12-month supply of Lunasin. User IDs associated with participants’ PatientsLikeMe account will be recorded by the study coordinator and shared with study staff at PatientsLikeMe. After the initial in-clinic visit, participants will be asked to enter the following data online: weight, Lunasin study drug regimen evaluation, and their ALSFRS-R score.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 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


PatientsLikeMe Names George Parker Executive Vice President of Human Resources

Posted October 12th, 2016 by

Seasoned HR executive brings 30+ years of experience to the role

October 12, 2016 – PatientsLikeMe today announced the appointment of George Parker as Executive Vice President of Human Resources (HR). In the newly-established role, Parker will oversee all aspects of human resources, with a focus on talent acquisition and development. The newest member of the senior leadership team, George will report to CEO Martin Coulter.

“PatientsLikeMe continues to expand its talent pool to support our strategic agenda and growth,” said Martin Coulter, PatientsLikeMe CEO. “George’s arrival ensures we are equipped with the executive experience to scale our human resources operations and to create an exceptional environment for our staff to thrive. We are delighted that George, with his depth and breadth of experience, has joined our team.”

Parker has more than 30 years of human resources experience in high growth and established organizations. Before joining PatientsLikeMe, he was Senior Vice President and Chief Human Resources Officer at Forum Pharmaceuticals, a pharmaceutical company focused on serious brain diseases. Prior to that, from 2010 to 2015, Parker was Vice President, Global Human Resources at Molecular Devices, LLC, a life sciences operating company of Danaher Corporation. He has also held senior HR positions at Cyberonics, Inc., Perkinelmer Instruments, and Bayer A.G., where he effectively led organizations through change and growth.
“Having spent the majority of my career in the life sciences industry, I’m thrilled to join an organization that recognizes the importance of patient-centricity and the need for patient data to support healthcare decisions,” said Parker. “And ultimately, the good that we can do – as an organization, for our members living with chronic health conditions – is a direct result of the individuals we employ, how we develop and motivate our team, and how we drive internal collaboration. That is what energizes me about this role.”

Parker holds a bachelor’s degree in mathematics from Hobart College.

About PatientsLikeMe

PatientsLikeMe is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services, and care. With more than 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 80 research studies. Visit us at www.patientslikeme.com or follow us via our blogTwitter or Facebook.

Contact
Kat Bragg
PatientsLikeMe
kbragg@patientslikeme.com
617.548.1375