35 posts tagged “condition”

Talking brain donation with Dr. Deborah Mash

Posted September 1st, 2015 by

Dr. Deborah Mash is a professor of neurology and molecular/cellular pharmacology at the University of Miami School of Medicine. She’s also the director of the university’s Brain Endowment Bank, and she recently spoke with PatientsLikeMe about her research and exactly what goes into donating your brain to science. As she says, “we still know very little about that which makes us uniquely human” – read her Q&A interview below.

What led you to study diseases of the brain? 

The brain is the next biologic frontier. We have learned more about the human brain in the past twenty years than throughout all of human history. And, we still know very little about that which makes us uniquely human – our brain. I was always very interested in the anatomy and the chemistry of the brain and in disease-related Neuroscience. I consider it a privilege to study the human brain in health and disease.

How would you explain the process of brain donation to PatientsLikeMe members who might be new or uncomfortable with the idea of donating this organ to science?

Brain donation is no different than donating other organs after death. Organ and tissue donations can give life or sight to another person. Transplanted tissues are used in surgeries to repair damaged bones and joints. And these donated tissues are also important for research studies to advance best practices that are used by doctors. The gift of a brain donation supports research studies that will bring about new treatments, better diagnosis and ultimately cures for disorders of the human brain like Alzheimer’s disease, Autism, ALS, schizophrenia and depression, drug and alcohol addiction, bipolar disorder, and multiple sclerosis to name a few.

A brain donation does not interfere or delay a family’s plans for the funeral, burial or cremation. There is no cost to the family to make this final gift.

What brain bank research would you most like to share with the PatientsLikeMe community? Our ALS, MS, Parkinson’s and mental health members might be interested to hear about brain bank research for their conditions.

Studies of the human brain have led to seminal discoveries including the loss of dopamine neurons in Parkinson’s disease and the association of beta amyloid with Alzheimer’s disease. Without examining the human brain after death, these discoveries could not have happened. Medications for Parkinson’s disease were advanced because scientists identified the loss of dopamine that causes many of the symptoms.

We have new technology that provides an unprecedented opportunity to rapidly examine large-scale gene expression of human brain for the first time. This powerful approach can facilitate understanding the molecular pathogenesis of Amyotrophic lateral sclerosis (ALS), a disease that is usually fatal in five years. Motor neurons in ALS undergo degeneration, causing secondary muscle atrophy and weakness. Studies of ALS in human brain are beginning to identify multiple processes involved in the pathogenesis of ALS.

We have yet to fully understand the progression of multiple sclerosis (MS).

This disease is different for everyone who has it. The symptoms it causes and when they flare up is different not only between people but also throughout one person’s life. This makes the diagnosis difficult and complicates treatment. The science behind MS is slowed because there are too few brains donated for research. We get many more requests for well-characterized MS cases and too few brain specimens are available to support the research. This lack of donated brains from MS patients is a barrier for MS research.

Examining the brain after death is important to understand how well experimental treatments are working in clinical trials to see if the drug did what it was supposed to do. An autopsy follow-up on 13 patients from a recent Alzheimer’s drug trial showed that although the drug had cleared the beta amyloid protein, it hadn’t changed the course of the disease — an incredibly important observation needed to advance the direction of Alzheimer’s disease research. The same is true for anyone who participates in clinical trials for any brain disorder.

When you ask people (or their family members) to consider donating their brain to UMBEB or another brain bank, what do you want them to know?

A brain donation is a final gift that contributes to the health and well being of the next generation – your children and grandchildren. It is a very special endowment that lives on by advancing research that can lead to the next scientific breakthrough.

People who want to be organ donors typically sign a card letting others know their wishes, but brain donations require an additional pledge card. This is not always well promoted. How can PatientsLikeMe members who are interested in brain donation obtain the special brain donation pledge cards?

It is important to make your wish known by registering in advance. We make it an easy process and provide donor registration cards for your wallet. You can share this information with your family and friends. You can request information or become a registered donor by visiting us online at http://brainbank.med.miami.edu or call 1-800-UM-Brain.

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“I can see that there actually is help here.” – JustinSingleton shares his experiences with PTS

Posted August 21st, 2015 by

JustinSingleton is an Army veteran who recently joined PatientsLikeMe back in June, and he’s been exploring the veteran’s community ever since. This month, he wrote about his experiences in an interview, and below, you can read what he had to say about getting diagnosed with PTS, managing his triggers and the importance of connecting and sharing with fellow service members. 

Can you give us a little background about your experience in the military?

In 1998, I joined the Ohio Army National Guard as an Indirect Fire Infantryman – the guy that shoots the mortars out of a big tube. For six years I trained on a mortar gun, but after being called back into the Army (I left in 2004), I was assigned to an Infantry Reconnaissance platoon, and I had no idea what I was doing. Before heading to Iraq, we trained together as a platoon for six months – learning not only the trade, but to trust each other with our lives.

It wasn’t until March 2006 that we arrived in Iraq, and I was assigned to the Anbar Province, which at the time was rated as the worst province of the nation. I was deployed in the time leading up to the need for “the surge.” As we drove the highways of the Anbar, we were shot at, mortared, and bombed. Intelligence even found “wanted” posters of one of our vehicles (we named it Chuck Norris).

When were you diagnosed with PTS?

I wasn’t diagnosed with PTS until many years after the war (I tried to “fix” myself), but the traumatic events are actually multiple, including receiving indirect fire on what was supposed to be my last mission – just a week or so after two good friends were evacuated after being maimed for life.

What have you done to manage your symptoms of PTS?

At the beginning, I refused medicines – I thought I was strong enough to beat it on my own. I worked with a VA counselor before moving for a semester. While there, I worked with a university student/counselor, but nothing was really helping. Finally, I went to my Primary Care Physician and told her that I needed more. The VA psychiatrist tested some medicines, but one needed to be changed (this is normal). Finally, the combination of medicine and individual therapy created within me a sense of “I might make it.”

You joined PatientsLikeMe in June 2015.  As a newer member, what do you think of the veteran’s and PTS communities?

I joined this community because although I feel better than before, I still need the help of others. I can see that there actually is help here.

You’ve mentioned in the forum that your triggers seem to be non-combat related – can you describe your triggers?

In one of the forums I mentioned my triggers. These, to me, are odd. Bridges, garbage on the side of the road, and even a midnight stroll have triggered panic attacks or anxiety. Often, simply being in a grocery store too long causes anxiety to the point that I take a quarter of Ativan, squeeze my fists or the cart, and head to the door or checkout (whether finished or not). While this has caused an impairment in life, it has never been “the end” of life. These are objects on my road to a healthy living – objectives to be conquered.

Although there is a prevalent idea in the Armed Forces that a man/woman should never ask for help or ever see a physician, I have found that to be a rather juvenile view on life. The greatest thing a veteran facing PTS or anxiety can do is not try to face it alone. We are a community, a brotherhood, and only together with a good doctor can we ever hope to survive.

What advice do you have for other military members who may be experiencing PTS and related conditions?

Twenty-three of our brothers and sisters quit every day. I refuse to be a part of that statistic.

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Q & A with Mary Ann Singersen, Co-Founder/President of the A.L.S. Family Charitable Foundation

Posted August 14th, 2015 by

In 1998, Stephen Heywood, the brother of our co-founders Ben and Jamie, and friend of Jeff Cole, was diagnosed with ALS. They immediately went to work trying to find new ways to slow Stephen’s progression, and after 6 years of trial and error, they built PatientsLikeMe in 2004.

Mary Ann Singersen also has family experience with the neurological condition. Her father, Edward, was diagnosed two years before Stephen, and she co-founded the A.L.S. Family Charitable Foundation, now a partner of ours here at PatientsLikeMe. Mary Ann recently sat down for a blog interview and spoke about her inspiration to start the organization, her philosophy about ALS and what advice she would have for anyone living, or caring for someone, with ALS.

Can you share with our followers how your own family’s experience with ALS inspired you to start the A.L.S. Family Charitable Foundation? 

My father, Edward Sciaba Sr., was diagnosed with ALS in 1995. Going through this ordeal really opened my eyes to the plight of not only the patients but their families as well. In 1998 he lost his battle with ALS.

Our Co-Founder Donna Jordan also lost her brother Cliff Jordan Jr. to ALS the same year. (Our “Cliff Walk” is named for him).

We met through volunteering in the ALS community and thought that since we already had the Walk in Cliff’s name, we would like to be sure that the funds raised were used to help patients with their financial and emotional needs. We also wanted to further research efforts so we donate a portion to ALSTDI and UMASS Memorial Medical.

Donna and I went on to co-found the A.L.S. Family Charitable Foundation and we pride ourselves on our ability to put patients and their needs first. We offer many in-house programs that help with family vacations, day trips, respite, utility bills, back to school and holiday shopping, college scholarships for children of patients, etc. At this time, our programs are restricted in that they are available to New England area residents only.

We know you have your biggest event of the year – The 19th Annual “Cliff Walk” For A.L.S. – coming up on September 13. Can you share some more information about the event and its history? How can people get involved?

My co-founder and friend Donna Jordan’s brother Cliff was diagnosed with ALS at 34 years of age and he wanted to do something to support research efforts, so he held a walk on the Cape Cod Canal and 60 people came and raised $4,000.

Every year since then, the Walk has grown and grown. Last year, we welcomed 1,500 participants and raised over $220,000.

The “Cliff Walk®” is a seven mile walk along the Cape Cod Canal followed by live musical entertainment, fun activities for the whole family and lots of great food! If folks wish to come to the Walk we ask them to download a pledge sheet or make an online fundraising page.

On your website you say, “Until there is a cure…there is the A.L.S. Family Charitable Foundation.” Where do you and the organization see research focused in the future? What’s the next step? 

I can only say that I hope with all the funds raised by ALS organizations around the world and with the success of the Ice Bucket Challenge, there just has to be a cure on the way. In the meantime, we are here to help in any way we can.

We’re thrilled to be a partner of the A.L.S. Family Charitable Foundation. How do you think those living with ALS can benefit from PatientsLikeMe? How can PatientsLikeMe ALS members benefit from the A.L.S. Family Charitable Foundation? 

PatientsLikeMe is a great resource for anyone living with any condition – not just ALS. It’s also great for caregivers. ALS patients more than any other condition are online researching their symptoms, what helps, what doesn’t. They and their collaboration with each other may hold the key to better treatment options and someday maybe a cure.

Our Foundation prides itself on putting patients and their needs first. Our services are open to New England area residents and include granting funds to help with equipment, bills, respite services, college scholarships to children of patients, vacations, day trips, back to school and holiday expenses and any other needs we are able to meet. So please if you or a loved one have ALS and live in New England contact us for assistance. Call Debbie Bell our Patient Services Coordinator at 781-217-5480, email her at debbellals@aol.com or call our office at 508-759-9696 or email alsfamily@aol.com.

We also wish to find a cure for our loved ones living with ALS, so we fund research efforts at ALS TDI and UMASS Memorial Medical Center.

From your own personal experiences, what advice would you give to someone living with ALS, and to his or her family members and friends? 

Take help anywhere you can get it. Don’t ever feel like you shouldn’t ask because someone who needs it more will be denied, or because you have received help from another organization. Funds we and other organizations raise are for you and people like you.

If you or a loved one has ALS and live in the New England area, visit the A.L.S. Family Charitable Foundation website for more information and to request assistance.”

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Caregivers and companions – PatientsLikeMe members talk about their service animals

Posted August 10th, 2015 by

Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview.

Here’s what other members are sharing about their animals:

“Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.”

“I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.”

“Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to tell everyone who was ill where their boo boos were.”

Previously, members shared their experiences with service animals in a Canine Caretakers blog post, and others contributed to forum posts on the same topic. If you would like to share about your service animal, head to PatientsLikeMe. Don’t forget to share a cute picture of your pooch (or other animal)!

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Throwback Thursday: Dr. Steve Feldman speaks about psoriasis and medication adherence

Posted August 6th, 2015 by

In honor of Psoriasis Awareness Month, we’re throwing it back to January 2013, when we sat down with Steve Feldman, MD, PhD, and Professor of Dermatology, Pathology & Public Health Sciences at Wake Forest University School of Medicine. In his interview, he spoke about the challenges for psoriasis patients, as well as the treatment advances that may be ahead. We’ve reposted his entire interview below so you can learn about his research studies on patients’ adherence to topical treatments.

As the founder of DrScore.com, tell us how rating doctors online can improve medical care.

Doctors want to give their patients great medical care. Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice. www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.

What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?

PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another. Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases. Openness is a terrific attribute in this Internet age. I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!

You’ve done extensive research around treatment adherence. What are the considerations for patients?

Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them. Taking medicine isn’t easy, unless it is a habit. And when a patient starts to use a new medicine, taking it isn’t a habit. Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications. I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).

If patients are fearful, they should have an honest discussion with the doctor about it. One thing is certain: patients should be honest with their doctors about how they use their medicines. It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else. If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know. The doctor wants to know and may be able to change things.

We have a growing psoriasis community. What challenges do psoriasis patients face?

Psoriasis has a huge impact on patients’ lives. It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others. The lesions aren’t just unsightly; they can be itchy and painful. The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression. There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky. One of the biggest challenges is getting educated about all the potential options. It isn’t easy.

In our forum, patients have been discussing whether diet can affect psoriasis. What’s your take?

Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system). But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly. Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped. The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.

Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?

As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis. As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement. And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.

If you’re living with psoriasis, don’t forget to connect with the more than 5,000 members of the psoriasis community at PatientsLikeMe.

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Compassion for All: Overcoming the Stigma of Mental Illness

Posted July 27th, 2015 by

From our partners and friends at the Schwartz Center for Compassionate Healthcare.

Our partners at Schwartz Center Compassionate Care recently published a paper about how people living with mental illness experience prejudice, and how their doctors can give them better care.

“Overcoming the Stigma of Mental Illness to Ensure Compassionate Care for Patients and Families.”

Read the full paper

-Lisa Halpern, director of recovery services at Vinfen

Over the years, we’ve heard from the PatientsLikeMe community that many living with mental illness experience stigma, so we thought you’d like to know what researchers have to say about how people with mental illness don’t always get the care they need:

“One of the ways people suffering from mental illness are discriminated against in healthcare settings is when patients’ symptoms are over-attributed to their mental illness. The result is that their other health problems can go undiagnosed and untreated.”

Our partnership:
Over the last 20 years, the Schwartz Center focused on providing compassionate care, while over the last 10 years, we’ve brought the patient voice and the patient story to the life sciences community. We’re excited about the alliance, which will help us better understand the patient’s perception of compassionate care. We can strengthen the relationship between patients and their healthcare providers, which leads to better health outcomes, lower costs and greater patient satisfaction.

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Visualizing insomnia

Posted July 2nd, 2015 by

Jenna Martin is a photographer living with insomnia, and her sleeplessness is the inspiration behind much of her work. Much like the Seeing [MS] campaign, she tries to visualize her experiences through unique photographs that capture what it feels like to manage bouts of insomnia.

Her photographs were recently featured in the Huffington Post, and as she told the organization, “on average, I only get a few hours of sleep every three days or so. During a bad bout, I’ll go close to five days with no sleep. When that happens, reality and the dream world become switched in a way: reality is very hazy and hard to remember, and any sleep I do get has dreams that are incredibly vivid. Everything starts to blend together; I’ll begin seeing things from a third person perspective and it’s hard to tell if I’m awake or if I’m dreaming.”

Check out some of her pictures below, and see more of her work on her Facebook page.

Jenna Martin Photography

Jenna Martin Photography

Jenna Martin Photography

If you are living with insomnia, you’re not alone – over 2,200 people on PatientsLikeMe know what you’re going through. You can also visit the Sleep Issues forum to ask questions and learn more about sleep (or lack thereof).

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Let’s talk about men’s health

Posted June 10th, 2015 by

On average, American men live sicker and die younger than American women. Men die at higher rates than women from the top 10 causes of death, and by the age of 100 women outnumber men eight to one1.

Sometimes men just don’t talk about their health problems. Or they might not go to the doctor or for their health screenings as often as women2. This month is National Men’s Health Month and it’s a time to raise awareness and encourage early detection and treatment of preventable disease among men and boys.

There are several ways to get involved and join in the conversation. If you’re looking for a place to start, here are a few ideas:

Join the Men’s Health Forum discussions
Men make up 29 percent of PatientsLikeMe – and 81 percent of these members are sharing about their conditions, tracking their symptoms and connecting with one another in the men’s health forum. If you’re interested in learning more, visit today.

Wear something blue
The Men’s Health Network (MHN) is encouraging everyone to wear blue and share their pictures with the #showusyourblue hashtag on social media.

Research the facts
Learn about Key Health Indicators, common men’s health conditions and leading causes of death on the MHN’s information center.

Check your resources
Here’s a great list of resources and things to do in June, courtesy of the MHN.

Listen to patient interviews
Several men have shared their experiences on the PatientsLikeMe blog – watch Bryan (IPF) and Ed (Parkinson’s disease) speak about their conditions, and listen to David Jurado’s podcast on life with PTS.

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1 Life Expectancy data is from CDC/NCHS, Health, United States, 2013
2 http://www.menshealthnetwork.org/library/menshealthfacts.pdf


Migraine: More than just a headache

Posted June 5th, 2015 by

June is National Migraine and Headache Awareness Month, but isn’t a migraine just a bad headache? Nope. People like Cindy McCain (wife of Senator John McCain) and 36 million Americans living with migraines will tell you otherwise. And this month, those 36 million are raising awareness and dispelling the stigma around migraines.

Headaches can have many causes – dehydration, loud noises, and even feelings of stress or anxiety can trigger pain behind our eyes and forehead. So what makes migraines different? They can still be triggered by things like intense light, noise, or certain foods, but migraines are inherited neurological disorders. They can last a long time, sometimes hours.1 Migraines can also be accompanied by auras (a visual or auditory perception that a migraine is about to strike).

The people living with migraines in the US are who inspired Cindy McCain to organize the 36 Million Migraine campaign. Listen to her share her experiences with migraines on The Today Show:

 

 

If you’ve ever experienced a migraine, you’re not alone – over 7,500 people are living with migraines on PatientsLikeMe. Many have shared what triggers their migraines and how they manage the pain – join the community to share your experiences, questions and answers with those who know what you’re going through.

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1 http://www.americanmigrainefoundation.org/about-migraine/


Wrapping up Seeing [MS]: The invisible symptoms

Posted June 1st, 2015 by

Here’s a question we asked last year – how do you explain multiple sclerosis to those who don’t understand? And here are a few answers:

“I’m burnt alive every day.”
“A single bead of sweat can bring me to my knees.”
“I can be struck down in just seconds.”

Over the past year, we’ve been featuring quotes, pictures and videos from the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about visualizing the invisible symptoms of MS and raising awareness for the neurological condition. We’ve covered nine symptoms: blurred vision, pain, hot and cold, spasticity, dizziness, fatigue, brain fog, balance and numbness. If you missed anything, watch the video below for a full recap.

While there may be no more Seeing [MS] photographs, there will always be more symptoms, experiences and knowledge to share to help raise awareness for all things MS. There are more than 39,000 people living with MS on PatientsLikeMe, and many have contributed their own symptoms to the Seeing [MS] forum thread. If you’ve been diagnosed with MS, visit the community today. And a very special thanks to the patients and photographers whose hard work made Seeing [MS] possible.


Arthritis Awareness 101

Posted May 27th, 2015 by

You may have heard that arthritis affects the joints, but did you know that it’s an umbrella term used to describe over 100 medical conditions and diseases (known as rheumatic diseases)?1 Conditions that fall underneath forms of “arthritis” include rheumatoid arthritisgoutlupus, and fibromyalgia. And the symptoms can vary depending on the type of arthritis and the person living with the condition.

May is dedicated to raising awareness for arthritis (along with schizophrenia, lupus, CINDs, ALS…) – the people in the following video shared with the United States Congress what it’s like to live with arthritis:

May is drawing to a close, but it’s not too late to share your story on social media through the #ArthritisAwarenessMonth and #ArthritisMonth hashtags. And if you or someone you know has been diagnosed with any form of arthritis, the Arthritis Foundation has put together a collection of resources for everything from pain management to treatment options.

Don’t forget to visit the various arthritis communities on PatientsLikeMe – 7,488 people are sharing about living with rheumatoid arthritis, 4,795 with osteoarthritis and 1,527 with psoriatic arthritis.

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1 https://www.rheumatology.org/about/arthritismonth.asp


PatientsLikeMe and Partners HealthCare Collaborate to Improve Patient Outcomes

Posted May 26th, 2015 by

CAMBRIDGE, MA., May 26, 2015 – PatientsLikeMe and Partners HealthCare announced today that they are working together to give Partners HealthCare patients access to tools and information that can help improve decision making with their clinical teams and enhance health outcomes.

PatientsLikeMe Executive Vice President of Marketing and Patient Advocacy Michael Evers said the agreement is the first to provide access to the website from within a provider’s patient portal. “We’re excited to work with such an esteemed health system to help patients and their care teams have a more complete understanding of patients’ whole health experience, and to support shared decision making about next steps.”

Partners Population Health Management Associate Medical Director Adam Licurse, MD, MHS, who is a leader in population health patient engagement efforts at Partners, added the agreement is a key building block towards the healthcare system’s vision for better involving patients in their care. “We know that as patients become more engaged in their care, they have better care experiences, make more informed decisions based on their goals, and in some cases can actually receive higher value care at the end of the day. Peer mentorship, patient self-management, and patient education are all critical pieces to that puzzle. We believe PatientsLikeMe’s online patient community provides a meaningful solution to help meet these needs.”

As part of the agreement, the organizations:

  • Have provided access to PatientsLikeMe from Partners Patient Gateway, an online tool for patients to learn more about their condition and communicate with their doctors’ offices.
  • Will introduce a new “PatientsLikeMe 101” training series to guide Partners HealthCare clinical teams in helping patients and caregivers get the most out of PatientsLikeMe’s tools and support network.
  • Plan to include patients’ use of the website and its tools at the point of care in select Partners HealthCare clinical care sites and practices. Partners HealthCare clinicians are currently outlining several projects designed to understand how the use of patient-generated health data at the point of care can impact health outcomes, patient engagement, patient empowerment, care coordination and patient satisfaction. The projects are expected to kick off this year.

Partners HealthCare patients are welcome to voluntarily join PatientsLikeMe at http://www.patientslikeme.com or through their Partners Patient Gateway account.

About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) 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 325,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 60 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

About Partners HealthCare
Partners HealthCare is an integrated health care system, founded by Brigham and Women’s Hospital and Massachusetts General Hospital, that offers patients a continuum of coordinated and high-quality care. In addition to its two academic medical centers, the Partners system includes community and specialty hospitals, a managed care organization, a physician network, community health centers, home health and long-term care services, and other health care entities. Partners HealthCare is committed to patient care, research, teaching, and service to the community. Partners is one of the nation’s leading biomedical research organizations and is a principal teaching affiliate of Harvard Medical School. Partners HealthCare is a non-profit organization.

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


Seeing [MS]: The invisible symptoms – numbness

Posted May 22nd, 2015 by

“When I woke up, my hands were gone.”

That’s how Adriana Grasso described the numbness she experiences as part of her MS. It’s so severe that she doesn’t even know what it feels like to hold someone’s hand. As she says, “A simple thing that we take for granted – touch – it’s gone, and there is a barrier there.” Listen to Adriana speak about her symptom below:

You are now seeing numbness

Photographed by Nicholas Walton-Healey
Inspired by Adriana Grasso’s invisible symptoms

Adriana worked with photographer Nicholas Walton-Healey to portray her numbness in a picture and video. Their work is part of the Multiple Sclerosis Society of Australia’s (MSA) Seeing [MS] campaign, which is all about recognizing the invisible symptoms of MS and raising awareness for the neurological condition. Check out the previous pictures and stay tuned for more Seeing [MS] posts.

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“In my own words” – PatientsLikeMe member Edward shares about living with schizoaffective disorder

Posted May 19th, 2015 by

Meet Edward, a member of the PatientsLikeMe mental health community. He’s been living with schizoaffective disorder since the late 1970s, and over the past 35 years, he’s experienced many symptoms, everything from paranoia and euphoria to insomnia and deep depression. Below, he uses his own words to take you on a journey through his life with schizoaffective disorder, including a detailed account of what happened when he stopped taking his medications and how he has learned to love God through loving others.

How it all began:
In my early twenty’s in 1977, I was doing GREAT in college, double majoring in Mathematics and Electrical Electronic Engineering and in the top 1% of my class when I started having problems with mental illness. My first symptom was an intense mental anguish as if something broke inside of my head. Then my sleep started to suffer and I would fall asleep in my college classes, which was not at all like me. Then I started having strong mood swings and I became very delusional. I experienced all of this without the use of any drugs or alcohol; in fact I have never used any street drugs or alcohol. Life became HELL and I tried suicide. My parents then put me in a psychiatric hospital, where I stayed for about a year.

What schizoaffective disorder feels like:
When not on any antipsychotic medications, I feel like; others could hear my thoughts (broadcasting), that I could hear other people’s thoughts (mind reading), that I could communicate by thought with others without speaking a word (telepathic communication), not only could I communicate with other people in this way but I could communicate with other things as if they had human like qualities (anthropomorphic telepathic communication), believing that I am super important to the world (grandiose thinking), that others were out to kill me (paranoia), and I would become very delusional. But, now after taking the antipsychotic medications for some time, not only do I not believe that these things (powers) were never true for me, I also believe that no one else has these powers. Maybe some people may have others out to kill them, but this is not true for me. Also, for over 35 years (1977 – 2013) I believed that God would talk to me personally and would give me personal instructions, but now, I don’t believe this is/was ever true.

On top of having psychotic episodes, my mood has fluctuated from being euphoria, extremely joyful, super happy, with very little sleep, feeling like I didn’t need to sleep, etc. to suicidal lows, dysphoria, deep dark depression, and sleeping a lot with not being able to get out of bed, etc. My mood swings greatly in duration and intensity for reasons I am not fully aware of.

My quality of sleep is very poor. When I lay down in bed to go to sleep, my body/mind tortures me so much that if I haven’t gone to sleep within about five minutes I get up out of bed to relieve the torture like sensations. The torture sensations might be; restless legs, a general restlessness of my body or mind, a sensation in the back of my throat, an itch, or any thing that my mind can not stop focusing on. Once I have gone to sleep, I only sleep for about an hour before I awake. Once awake I go through all of the problems of falling back to sleep again. The sleep I do get is not refreshing. My mood and sleep go hand in hand, when my sleep is bad, my mood swings are bad and when my mood swings are bad, my sleep is bad and vise-a-versa. I have had a recent improvement my mood/sleep problem. It may be due to my new medication, Latuda that I am taking. Only time will tell if Latuda will continue to help.

What happened when I tried to stop taking my meds:
I stopped taking all my medications because I wanted to see if they were doing anything for me. Everyone told me that this was a bad idea, but I did it anyways.

As time progressed I could tell that my wife, Audrey, wanted to confess something to me, but was scared that I would not be able to handle it. I could also tell that Audrey talked to my counselor about this, and that my counselor agreed with her not to tell me. They were keeping something a secret from me. We danced around the issue, as if there was a white elephant in the room that no one was willing to talk about.

I figured that Audrey was having an affair with the senior pastor of a local mega church that she belongs to. It appeared to me that Audrey was willing to break off the affair and go public with it, but the pastor was not. To keep it from going public, I figured that the pastor hired a hit man to kill me. The more I thought about it, the more I was sure of it.

One day after Audrey left for work, I panicked. I started running. The first thing I did was try to get a hotel room without showing ID. However, all the hotels that I tried required ID. The way the hotel staff acted made me all the more sure that the pastor was getting help in finding where I was. At this point, I went into a Jack in the Box to get something to eat, and I could tell by the way people were acting that they had received the reverse 911 call on me. I figured the senior pastor that was having an affair with my wife knew that I knew about the affair and that I was running, so he convinced the police that I was either a danger to myself or to others, and that they should put out a reverse 911 call to find me.

I quickly left the Jack in the Box and got back in my car. I drove to a Rite Aid store and bought some bottled water, because I was planning to hide in the desert. The employees at the Rite Aid seemed to be acting strange around me, as if they, too, received the reverse 911 call on me. I quickly got in my car and drove into the desert, trying to find a safe place, but I saw a helicopter in the distance, and I knew I was not safe there either. I got on the freeway and headed north.

I had not been sleeping well for weeks and was getting very tired. Having a bottle of 200-milligram caffeine tablets with me, I took one. It helped only a little. I was also taking them to help me feel better, and I already had a lot of caffeine in my system. After driving for about fifteen minutes, I felt sleepy again, so I took another caffeine tablet. This sequence of events continued. I was taking a caffeine tablet about every five to fifteen minutes.

After driving for about two hours, I was scared that I might be a danger to myself or, worse, to someone else, because I could easy fall asleep behind the wheel. I pulled off the freeway into the parking lot of an old run down hotel. I figured that these people would be willing to hide me.

I booked a room, even though I had to show my ID. They too appeared to be acting strange. I figured that my picture must be on TV, so that people could be on the lookout for me. Everywhere I went people were looking at me funny. At the hotel I tried to lie down on the bed to get some rest, but I could not rest. I was wired. I got back in my car and drove north again.

After driving for about another hour, I came to the conclusion that I could not hide, and that they would eventually find me and kill me no matter where I went, so I stopped running. I called Audrey and told her I was coming home. Still very tired, I got back in my car and took another caffeine tablet or two.

I do not remember if my son called me or if I called him, but my son and I talked. I told him that I thought his mother was having an affair. Talking to him did help me stay awake while driving. After talking to my son, I called a friend to have him talk to me to help me stay awake. I was still taking a caffeine tablet about every five to fifteen minutes.

Half a bottle of caffeine tablets later, and with the help of everyone, I finally made it home that night. My wife and I got ready for bed, but I could not get any rest.

I got up and started playing on my computer. This was no help, for I started to worry about the Internet crashing, which would cause havoc to our society. Not only was I worried that the Internet could fail, but I believed that I could make it crash, if I wished. This really bothered me a lot.

The way I figured it was, if I did not make it crash, myself, it would someday crash by itself. The more I thought about this, the more I was sure of it. The problem was that if it crashed later we would be worse off and our society would not be able to recover.

I figured that the Internet could not handle human emotions, so I decide to make it crash that night by causing it to be jealous of my other computer—that was not connected to the Internet. I told my computer that was connected to the internet, that I loved my other computer more.

In the morning, Audrey took me to the emergency room at a hospital where there was a behavioral health unit.

Now, I was really afraid of just about everything and everybody. I thought that the internet was out to get me. I believed that the FBI, CIA, and Homeland Security were called in because I was viewed as a national threat. I also believed that the hospital needed time to get agents into the locked ward to act as patients.

After spending most of the day in the emergency room, I was all the more sure that these things were true. I thought they would put me in the behavioral health locked ward, but they did not. Instead, they put me on the surgical floor.

Now, I really believed something was up. Why would they do that? This scared me even more.

On the surgical floor, they had a nurse sit by my bed. I thought she was working for the government to find out if I was a national threat or not. I told her everything about my relationship with my computers and how I caused the Internet to crash. At this point, I thought the Internet had already crashed and it was all over the news, because the hospital staff would not let me watch TV.

To make matters worse, I was craving sex, badly. I was hoping the nurse would be willing to do something with me, if Audrey gave her okay. It seemed to me that Audrey did not want to have sex with me, and she might be willing to let me play with someone else. So, if she was willing, I was willing. But this never happened.

I was scared out of my wits. I wanted the hospital staff to put me in lock-up. Believe it or not, I felt more comfortable in the lock-up ward than I did on the surgical floor.

Later they put me in the mental health lock ward and placed me on a three-day hold, and then on a two-week hold. They stated that I overdosed on caffeine, that I was a danger to myself and others, and that I could not care for myself.

At first I refused to take the medication they wanted me to take, but later I did take it and I got better.

Now I can see that I was very delusional.

Where I’m at today:
My life has been full of ups and downs, twists and turns, which have taught me an important fact, keep the main thing the main thing, which is to love God with everything I got by loving others as I would have them love me with forgiveness, compassion, endurance, patience, mercy, grace, charity, tenderness, strength, wisdom, kindness, and with all that causes good to happen. The way I see God is He is more of a Spirit than a being, like Santa Clause is more of the spirit of giving at Christmas time than a actual being. Different psychiatrists have given me different diagnoses and prescribed different medications at different times in my life. When I am not suffering with my symptoms of mental illness, I enjoy working with my robot, studying and doing math, writing books, writing computer programs, and thinking about God stuff. If you have any questions either about myself or my fight with this illness, please ask me.

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