1082 posts by patientslikeme

Talking medication and sleep for National Sleep Awareness Week

Posted April 24th, 2017 by

Do medications disturb sleep?

Did you know this week is National Sleep Awareness Week? Sleep disorders affect around 50-70 million US adults, and troubled sleep is common within the patient community – just take a look at the results from a patient poll we did with you in 2015. There are many reasons someone might be struggling with a sleep disorder, and one of the contributors could be when you take your medication.

Some medications cause drowsiness, while others can keep you awake, so taking your medication at a certain time could impact your sleep schedule. Below are some medications that can affect sleep. Make sure you talk to your doctor before making any changes on your own!

  • Anti-arrhythmics (for heart rhythm problems)
  • Beta blockers (for high blood pressure)
  • Clonidine (for high blood pressure)
  • Corticosteroids (for inflammation or asthma)
  • Diuretics (for high blood pressure)
  • Cough, cold, and flu medications that contain alcohol
  • Headache and pain medications that contain caffeine
  • Nicotine replacement products
  • Sedating antihistamines (for colds and allergies)
  • SSRIs (for depression or anxiety)
  • Sympathomimetic stimulants (for attention deficit disorder)
  • Theophylline (for asthma)
  • Thyroid hormone (for hypothyroidism)

Find out more.

Think your medication might be causing difficulty with your sleep schedule? Bring it up with your doctor, they may be able to work with you on finding a solution. You can also join the conversation on PatientsLikeMe, there are over 31,000 topics in the forum on sleep!

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Member voices: I have IBS, here’s what I do…

Posted April 18th, 2017 by

If you’re living with irritable bowel syndrome (IBS) you’re not alone. In fact, IBS affects up to 1 in 7 Americans, so chances are you may know someone who is going through the same thing. Despite it being so common, many people living with IBS are unaware that their symptoms indicate a medically recognized disorder, which is why April has been named IBS Awareness Month, to increase recognition for this common condition.

In the PatientsLikeMe forum, members are talking about how IBS affects them and sharing how they manage their symptoms. Take a look at some of what they had to say…

Coping is hard because you have to rigidly stick to a bland diet which causes constipation, so I take a half dose of Miralax daily.

-PatientsLikeMe Member

I follow a bland diet most of the time. I like raw fruits and vegetables and cereal. Pasta with butter and Parmesan cheese is always a good choice. I NEVER eat spicy food and I stay away from raw onions. 

-PatientsLikeMe Member

Miralax works wonders for me. I take it every day and this keeps me regular.

-PatientsLikeMe Member

I personally don’t take any meds. I watch my diet very carefully. I do try to stay away from spicy food and corn. I don’t go completely without corn however I know if eaten it will cause a lot of issues. I also bounce between having the diarrhea and constipation. It is a very frustrating vicious cycle.

-PatientsLikeMe Member

The best thing that I have ever done for my IBS was high-dosage Xifaxan. I convinced my doctor to prescribe me this after reading a book entitled A New IBS Solution.

-PatientsLikeMe Member

I took Librax for years, until I discovered Bentyl (which they gave my mother IV in the ER when she had an emergency attack of IBS). It comes in pill form, too, and IT WORKS. It almost completely controlled my IBS issues.

-PatientsLikeMe Member

There are lots of different ways to manage IBS, from prescriptions to dietary changes and more. Did you know there are currently more than 5000 members on PatientsLikeMe living with IBS? They’re talking about their symptoms, finding support from others in the forums, sharing the treatments they’ve tried and tracking how those treatments are impacting them. Join the conversation on PatientsLikeMe.

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Worth a thousand words: A day in the life of Larry

Posted April 14th, 2017 by

As a child, Sarah Howell loved art. She got her first camera at 6 years old and realized, over time, that she had a way of connecting emotionally and expressing herself through photos. Now, she has her own studio. Her passion? Capturing genuine family moments. Sarah often stays overnight in the home of the family so she can spend the entire next day with them, from start to finish.

A day in the life of Larry Tyler

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

When Sarah’s friend, Teri, asked her to capture a day in the life of her father, Larry Tyler, she was both shocked and honored. Larry, living with ALS that required 24-hour care, wanted the photos released to raise awareness and funding for ALS.

Sarah was there with her camera, from Larry’s wake-up at 10:30am, until he went to bed that evening. What emerged was a series of 24 deeply moving photos that capture a day in the life of Larry and his family.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

While she was prepared for sad moments with the family, she wasn’t prepared for the level of caregiver exhaustion she witnessed. For Sarah, the realization that ALS is a family disease was the hardest part of her visit.

 

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Despite the hard moments of exhaustion, chaos and frustration, Sarah also witnessed how Larry and his family coped: with laughter and humor.

© Sarah E Studios  |  www.sarahestudios.com

© Sarah E Studios  |  www.sarahestudios.com

Reflections

After this time with Larry and his family, Sarah now wants to photograph a day in the life of one person living with ALS every year. Even though she doesn’t have a personal connection to ALS, she feels that this story could resonate with other caregivers. She shared her collection at a gallery and was moved by the reception.

Sarah hopes the collection will not only raise awareness for ALS, but also to increase awareness of the need for caregiver support and therapy. In the meantime, she hopes that her photos can do some good.

Check out the rest of Sarah’s 24 photo collection with Larry.

Find other ALS caregivers

Do any of Sarah’s photos resonate with you? Share in the comments.

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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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PatientsLikeMe and Shire Pharmaceuticals Collaborate to Study Rare Genetic Diseases

Posted April 10th, 2017 by

CAMBRIDGE, Mass.–(BUSINESS WIRE)PatientsLikeMe and Shire plc (LSE: SHP, NASDAQ: SHPG) have announced a new collaboration that will support the development of a patient-centered, real world health learning system that expands understanding of patient health and disease.

Shire, the global leader in rare diseases and other highly specialized conditions, will work with PatientsLikeMe to appropriately engage patients and caregivers at every stage of their journey. Through the creation of digitally-enabled research communities and tools, this multi-year collaboration will help those struggling with a rare disease to track and share their experience with others living with the same condition. It will also connect patient-generated health data with genotype and physiological data to enable research outcomes in order to help Shire better meet the specific needs of patients with rare diseases.

Philip Vickers, PhD, Head of Research and Development for Shire, said working with PatientsLikeMe will help the company overcome some of the traditional challenges inherent in understanding rare diseases. “Establishing regular connections with patients and their caregivers has been challenging for researchers studying rare diseases. We typically study patients at a specific point in time in a clinical setting that may be far from home. Our collaboration with PatientsLikeMe will enable Shire to understand how disease impacts patients in their own environment and integrate data from multiple sources on a single platform. Our goal is to gather a more complete picture of the patient and caregiver experience that could potentially guide the development of new, more patient-centered treatments.”

PatientsLikeMe Co-founder and President Ben Heywood said the collaboration will give patients and caregivers new ways to understand their symptoms, treatment impacts and quality of life over time, and new insights into how to improve their outcomes. It will also help both companies advance research for a deeper and more collaborative understanding of health and disease.

“From my own family’s experience, I know that having a rare disease can be incredibly isolating. But as we’ve seen with other conditions, patients and caregivers who connect on our platform have unprecedented control and influence over their experience, and potentially their outcomes,” Heywood said. “Our work with Shire will give patients, caregivers and researchers access to new forms of data that can improve our understanding of the human condition, and help Shire align their operations behind patient-driven directives. We applaud that effort and are delighted to help drive it.”

Karl Hick, CIO for Shire, said that “digital technologies are driving a major shift in healthcare, empowering patients and their caregivers to take greater control of their health outcomes, and enabling better insights into patient needs. The collaboration between Shire and PatientsLikeMe will create an empowered and enlightened community of rare disease patients and caregivers, and integrate cutting-edge technologies to build a full understanding of the disease and diagnostic journey.”

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

About Shire
Shire is the leading global biotechnology company focused on serving people with rare diseases and other highly specialized conditions. We strive to develop best-in-class products, many of which are available in more than 100 countries, across core therapeutic areas including Hematology, Immunology, Neuroscience, Ophthalmics, Lysosomal Storage Disorders, Gastrointestinal/Internal Medicine/Endocrine and Hereditary Angioedema; and a growing franchise in Oncology.

Our employees come to work every day with a shared mission: to develop and deliver breakthrough therapies for the hundreds of millions of people in the world affected by rare diseases and other high-need conditions, and who lack effective therapies to live their lives to the fullest. More information at www.shire.com.


World Health Day 2017: #LetsTalk about depression and mental health

Posted April 7th, 2017 by

World Health Day 2017

Today is World Health Day! This year, the World Health Organization (WHO) hopes to spark discussions about mental health with their campaign called “Depression: Let’s talk.”

Depression affects more than 300 million people of all ages, from all walks of life, in all countries – but less than half of people with depression (even less than 10 percent in many countries) receive treatment.

“The stigma surrounding mental illness, including depression, remains a barrier to people seeking help throughout the world,” according to WHO. “Talking about depression, whether with a family member, friend or medical professional; in larger groups, for example in schools, the workplace and social settings; or in the public domain, in the news media, blogs or social media, helps break down this stigma, ultimately leading to more people seeking help.”

In honor of World Health Day, WHO encourages you to use the hashtags #LetsTalk and #depression, as well their predesigned apps and graphics to spread awareness over social media today.

World Health Day 2017

Don’t go it alone

WHO suggests talking to someone you trust about your feelings. “Being emotionally mature and authentic to those who are close to you can be an absolute game changer,” says Matthew Johnstone, a writer/illustrator who produced this video for WHO called “I had a black dog, his name was depression.” “The most important thing to remember is that, no matter how bad it gets, if you take the right steps, talk to the right people, ‘black dog days’ will pass.”

So who are the “right people” to talk to? The University of Michigan Depression Center (UMDC) says it’s important to discuss your depression with your healthcare providers. “Emotional problems such as depression are not always evident to healthcare professionals focused on physical ailments,” they say. When you make a list of topics to raise with your doctor, include your depressive symptoms or mental health concerns, just as you would discuss any physical symptoms disrupting your life. Although doctors and the public rarely discuss it, depression can also go hand in hand with many other health conditions and it’s important to treat.

Beyond doctors, UMDC says whom you share with and how to do it is a personal choice. Their Depression Toolkit outlines some pros and cons of opening up and advice for choosing confidants. “Remember: quality is more important than quantity—even one confidant is a great asset.” Seeking support anonymously through online forums (like our Mental Health and Behavior community) is a good option, they say.

World Health Day 2017

Tips for talking

Heads Up Guys, an organization that’s raising awareness about depression in men, encourages you to think of someone who:

  • You’re comfortable with and trust
  • Is likely to understand
  • Will take your situation seriously

“Keep in mind that it doesn’t have to be an intense conversation that you dread starting,” they say. “It’s helpful to keep things causal – go for a walk, grab a coffee or chat with someone while working.”

These candid conversations starters from Heads Up Guys might help:

  • “I’ve been having a really hard time lately. Getting really stressed out. Mind if I bounce some ideas off you?”
  • “I’ve been feeling off for a while now. Have you ever found yourself in a funk that was hard to get out of?”
  • “I made an appointment with my doctor the other day and he thinks I might be suffering from depression. I don’t really know much about depression – how about you?”
  • “I’m really falling behind on some chores. When are you getting groceries next? Maybe we can go together.”
  • “I want to get out more these days but I don’t have the energy. If you can think of something to do and plan it out, I’ll be more likely to get out of the house.”

If you’re feeling suicidal, talk with someone right away. Speak with a family member, friend or doctor, or dial 911 or one of these hotlines.

On PatientsLikeMe, nearly 39,000 patients have major depressive disorder (MDD). Of those, about 17,000 say MDD is their primary condition. Every day, members talk about symptoms, treatments and ideas for coping with depression in the Mental Health forum, so join the discussion today.

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Paul Wicks on the power of sharing data

Posted April 5th, 2017 by

Back in December, our VP of innovation, Paul Wicks, Ph.D., spoke at the annual International Symposium on ALS/MND in Dublin. The goal of the annual meeting is to share new understandings of ALS/MND as quickly as possible through collaboration between leading researchers around the world.

Now, we’re sharing a video of his presentation about what you and the ALS community has shared about living with ALS over the last 10 years.

Here’s what Paul had to say:

“We hope this presentation shows the power of patients sharing their data to help shed light on ALS. It’s a disease that can isolate people, rob them of their voice, and sap their strength to fight back, so we’re proud that we’ve been putting the data our members share to good use for over a decade now and we’re keen to share some highlights of what we’ve found.”

What do you think about Paul’s presentation? Share your thoughts in the forum.

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Teaming up with LupusChick to boost chronic condition awareness

Posted April 4th, 2017 by

PatientsLikeMe is excited to announce a new partnership with “LupusChick,” Marisa Zeppieri-Caruana. She’s an influential blogger, advocate and advisor for the lupus and chronic condition community – and an all-around cool gal. Marisa grew up with various health issues and suffered serious injuries in April 2001 when she was run over as a pedestrian by a truck, driven by a drunken driver. During her rehabilitation, she suffered a small stroke and was also diagnosed with lupus (which can be triggered by trauma, like accidents and injuries).

Marisa launched her LupusChick blog in 2008, and it’s now a popular destination for reflections on life with chronic illness, recipes (she’s a juicer and a foodie!), wellness tips and more. She’s been featured in U.S. News & World Report, The Huffington Post, The Mighty, Eating Well, Elle, Glamour, and many other publications as a voice for people with chronic illness. She raised even more awareness of lupus when she reigned as Mrs. New York USA Universal 2015. We recently caught up with her about her experiences with lupus, her award-winning blog and her hopes for this new partnership with PatientsLikeMe.

LupusChick Interview

What inspired you to launch LupusChick? Did you expect it would reach so many people and become your day job? 

Between 2005 to 2008, I met many lupus patients and their family members or spouses through support group and awareness events and was surprised at how many of these men and women still felt alone. I believed they were looking to find a solid connection with other patients. As social media and the internet was really beginning to take off, I created LupusChick as a safe space for patients dealing with any chronic illness. It started from a small blog, reaching a few hundred people a month, to today where it is a nonprofit and major autoimmune community that reaches about 700,000 people per month. I think of it as my day/night/weekend job, as people reach out from all across the globe at all hours. It is everything I hoped it would be and more!

Could you share some of your lupus diagnosis story with us? How did you come to terms with your diagnosis after already going through so much? 

I believe my story really started when I was young, as I had health issues since I was a baby. My symptoms came out full force, though, after being struck by a truck as a pedestrian. Some autoimmune symptoms are exposed through a trigger, and that incident seemed to be my trigger. I had to heal from that event as I had extensive injuries, and got sick on top of it. I can’t say it was my finest hour, but once I got through the frustration phase, I began to see that I was still here for a reason and I needed to transform all the “bad” into something good.

What do you like to do for fun? How has lupus affected these things? 
I love to travel, meet new people and just be spontaneous. Lupus has changed a lot of those things for me but it hasn’t broken my spirit. My travel is much more planned, and I have to strategize time for rest, but it doesn’t stop me from having new adventures in life.

Which lifestyle habits or changes have helped you the most in managing lupus? How do you help others find lifestyle tips and tweaks that might work for them? 

Changes I have made included learning how to say “no” and not overextending myself. At the end of the day, I am no good to anyone else if I have run myself ragged and put myself into a flare-up.

I’ve also made a variety of changes to my diet, as I deal with lupus and many allergy and food allergy issues. These changes have helped me manage some symptoms and have made an improvement in my energy level. I am always happy to share my tips with others, but I also recommend for people to find what works for them, especially when it comes to things like diet. One suggestion I do stress for chronic illness patients is journaling. Keeping track of my symptoms, food, stress, medicines, flares, activity levels and more provided incredible insight over time as to what causes my body to flare up.

Many people on PatientsLikeMe are managing invisible chronic conditions. What is the hardest part about managing a chronic illness that other people can’t see? 

The reality is many of us are almost putting on a show, attempting to seem healthy and “normal” in order not to be judged and critiqued by others who don’t understand our illness. That in itself can be exhausting. I think if some people had a glimpse of what our lives are like on a daily basis – the fatigue, pain, doctor visits, IV treatments, medicines, needing help – they might have a different perspective on chronic illness. It might foster more compassion and, in our community, that would be incredible.

LupusChick Interview

What does a tough day look like for you?

Tough days usually include fevers, pain, rashes, heart issues and severe fatigue. It can definitely get me down because I am a total Type A who has a million things I want to do. My mind never stops, but my body puts the brakes on many of my plans. There is a level of frustration that comes along with that. I try to keep in mind a new day is coming and remind myself that I have accomplished the things I have set my mind to, even if it has taken me longer than expected. That gives me hope for future goals.

What about a great day – what does that look like? 

A great day means a lot of energy, little medicine and no IV treatment. It might look like me, my husband and our rescue dog hiking in upstate New York or kayaking on Lake Ontario. Because so much of my life seems to be me stuck in bed, I love to get outdoors whenever possible!

What are you looking forward to most in this partnership with PatientsLikeMe?  

So many things, such as connecting with like-minded people, educating others about lupus (and various illnesses) and having the incredible resources of PatientsLikeMe at our fingertips to learn what has worked for other patients dealing with similar issues!

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3 energy-saving tips for people with lupus

Posted March 31st, 2017 by

lupus fatigue tips

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.

Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):

  1. A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
  1. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.

lupus fatigue tips

“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.

  1. More scheduling pointers from the experts at the Lupus Foundation of America:  
    • Balance busy times with periods of rest throughout the day, if possible.
    • Prep meals in advance, whenever you have a bit more energy.
    • Plan ahead for big events like the holidays – shop for gifts throughout the year.
    • Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)

Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.

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Parkinson’s podcast: Member Gary talks music and movement with dancer Pamela Quinn

Posted March 30th, 2017 by

In a quest to learn about the benefits of music for people with Parkinson’s disease, we met Pamela Quinn, a professional dancer in New York City who was diagnosed with young-onset PD more than 20 years ago. These days, she teaches thriving dance classes in Brooklyn and Manhattan for people with Parkinson’s (check out her PD Movement Lab class here), and gives talks around the world – from Chicago to Japan – about dancing and moving with PD (catch one of Pam’s inspiring lectures here).

Turns out Team of Advisors member Gary (tupelo), who is living with PD, has known Pam for about three years (they met through their movement specialist, Rachel Saunders-Pullman, M.D.).

Gary and Pam recently sat down for a chat, friend to friend, and let us join in. This is just a snippet:

Pam: “I was in shock because Parkinson’s was not really in my world view at the time – I was a professional dancer, I was a young mother and that was the farthest thing from my thoughts.”

Gary: “So what did you do after finally accepting that you had this chronic progressive disease that would be with you for the rest of your life?”

Pam: “Well, I didn’t accept it…”

Hear the 15-minute podcast

Beyond sharing her reaction to her diagnosis, Pam offered lots of tips for taking elements of dance, breaking down movements and using music to keep on moving (in addition to using prescribed medication, she notes).

“Music is fantastic,” Pam says. “Music is definitely part of my medicinal arsenal. It eases my gait. It propels through space. It helps initiate movement. It has no side effects. It’s cheap. And when they banned it from the New York City Marathon because it gave runners a competitive edge, I knew I was on the right track.”

The PatientsLikeMe community has a lot to say about this topic, too – there are 850+ threads about music and 1,000 threads about dance in the Parkinson’s Disease forum.

Looking for more movement tips and tricks from Pam? She’ll be posting videos and practical pointers for people with PD on her new blog, PamelaQuinn.net.  

A note from Pam: The content of this post and podcast is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

 

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It’s Kidney Month: 44 famous people who’ve battled kidney disease

Posted March 28th, 2017 by

Can you name any celebs with kidney disease?

Roughly 14 percent of Americans have chronic kidney disease, and it claims more lives than breast or prostate cancer every year. But it’s not a condition you often hear about or see splashed on magazine covers.

March is National Kidney Month, so we explored some well-known people who’ve been affected by this “silent disease.”

Celebrities with kidney disease

All walks of life

As the Childhood Kidney Support Network notes in their list of 44 famous people who have battled kidney disease, it affects people of all ages, races and walks of life – even cowboys (Buffalo Bill) and royals (Prince Rainier III of Monaco). Here’s a sampling of stars on the list:

  • The Hollywood crowd – Directors Stephen Spielberg, Howard Hughes and Alfred Hitchcock; actresses Sarah Hyland (Modern Family), Sandra Dee, Marlene Dietrich and Veronica Lake; actors Gary Coleman (Diff’rent Strokes), George Lopez (comedian/talk show host), Dom DeLuise and Laurence Olivier; and TV chef Julia Child
  • Artists, writers and musicians – Mozart, Cole Porter, Robin Gibb, C.S. Lewis, Norman Mailer, Natalie Cole, Emily Dickinson, Barry White and Neil Simon
  • Athletes, military leaders and more – Douglas MacArthur (U.S. Army General), Jonah Lomu (rugby player of New Zealand), Jack Brabham (Australian race car driver), and Bobby Fischer (chess player)

Know the signs

Kidney disease is often referred to as a “silent disease” because it often has no symptoms in its early stages and can go undetected until it is very advanced. “Only 10 percent of people with chronic kidney disease know that they have it,” says Dr. Joseph Vassalotti, Chief Medical Officer at the National Kidney Foundation.

Because symptoms don’t always show up early on (or can be attributed to other health conditions), it’s important to know these possible signs, according to the National Kidney Foundation:

  • You’re more fatigued than usual and having trouble concentrating
  • You’re having trouble sleeping
  • You have dry, itchy skin
  • You feel the need to urinate more often
  • You see blood, excessive bubbles or foaminess in your urine
  • Your ankles and feet are swollen
  • You have a poor appetite
  • Your muscles are cramping

On PatientsLikeMe

More than 1,500 members have chronic kidney disease. Commonly reported symptoms include fatigue, pain, insomnia, and depressed or anxious mood.

Are you living with chronic kidney disease or another kidney condition? Track your condition and treatments and connect with others like you in the PatientsLikeMe Kidneys and Urinary forum.

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“My experience as a patient and son helps me”: PatientsLikeMe software engineer Alex’s backstory

Posted March 24th, 2017 by

Meet Alex Bromley, a PatientsLikeMe software engineer who’s living with gastroesophageal reflux disease (GERD) and whose mother has fibromyalgia. He recently shared some insight on his and his mom’s conditions, his experiences as both a PatientsLikeMe employee and member and what he enjoys outside of work.

What first drew you to working at PatientsLikeMe? Can you describe what you do in your role here? 

A former employee and friend of mine, Joe, first introduced me to PatientsLikeMe in 2012. I decided to sign up as a patient and see what it was all about. When I saw that it included a robust fibromyalgia community, I was touched personally by the fact that someone like my mother, who has this mysterious condition, could talk and learn about it from other people.

In my current role as a software engineer, I provide technical leadership to the PatientsLikeMe client team. We focus on supporting outside partnerships and collaborations, especially when it comes to custom software development.

How does living with GERD affect you day to day? How do you use PatientsLikeMe as a patient?

For a while, GERD started to change my life. I was no longer able to drink coffee, eat anything with tomatoes and, in general, I was feeling a burning sensation in my esophagus on most days. It started to affect my concentration and my mood. On the plus side, I made some healthy improvements to my life – drinking a lot more water, exercising regularly and cutting down on one of my worst habits (eating late at night). But until I was prescribed Prilosec, it was definitely a frustrating challenge. At this point, the prescription has me feeling pretty much 100 percent, other than the fact that I’ve given up coffee for a strong breakfast tea every morning. I have a cup now and then but, all in all, coffee and my stomach do not get along.

I use PatientsLikeMe to track how I’m feeling and why – I try to leave comments along with my InstantMe. It helps me identify bad habits and external factors that exacerbate my condition. I also like to see how other patients with my condition are faring, what treatments are working, and, in general, it’s been eye opening to see how many other people have experienced the same things I have with GERD.

When was your mom diagnosed with fibromyalgia? Can you share how her diagnosis affected her and your family? 

My mother, Maria, was diagnosed with fibromyalgia, after several fits and starts, in 1997. For some time, we had no idea what was going on. Only after several second opinions, Fifth’s disease and Fibromyalgia were identified as potential culprits for her pain, inflammation, and total fatigue. It had a huge effect on our family as she was always the motor that kept us going. My father worked a lot but really wasn’t very active around the house with chores, cooking, homework and things like that. On top of that, my mother worked as his accountant full-time.

It shook us all for many reasons. I had never encountered a problem our healthcare system did not have some reasonable explanation for or plan to address, other than terminal illnesses. We’ve both taken strength from other people’s stories on PatientsLikeMe, like Team of Advisors member Craig’s inspiring post about fibromyalgia that led my mother to say, “That’s exactly what it feels like!”

How is your mom doing these days? 

My mother still struggles with fatigue and has given up some of her favorite things, like gardening, due to arthritis-like pain. She has to limit her driving time, which results in missing family events on occasion. Really, anytime we plan an event or trip together, it is generally constrained by managing her energy levels. We’re lucky to still be together as a family, but it is definitely something we have to always keep in mind with her. I would like to say that overall she’s doing fine and couldn’t be happier to spend time with my daughter – her granddaughter, Mariana – lately. She watches her two days a week, and I’m not sure it would be possible without PatientsLikeMe. I’m able to work from home on those days and give my mom a quick hand if she is in pain – just another reason we are so grateful to be part of the PatientsLikeMe family.

How does your and your mom’s experience shape your work here?

Typically, I am someone who takes great ideas from other PatientsLikeMe staffers and puts them into practice through software development. But I’d like to think my experience as a patient and son helps me view the website from that vantage point and make good suggestions, if I see anything we can improve.

And, of course, I couldn’t be happier to get up every morning and go to work somewhere that has a truly inspiring mission and has touched my family. It’s a real blessing!

What do you like to do for fun when you’re not at work? 

For the last six months, I’ve been focused on my stepson, Daniel, and his brand-new baby sister, Mariana. She never wants to stop – mostly demanding that I help her try to stand up and walk, walk, walk. Danny’s first language was Spanish, so we spend extra time reading and doing homework to catch up on some of his English skills while we reinforce his already great math skills. We also find plenty of time to play “Just Dance,” ride bicycles, go sledding and all the fun things. Personally, I really like to get outside and stay active – mountain biking, skiing, hiking. It’s a lifelong passion and it helps me stay in good health – something I know not to take for granted. In the evenings, I like to relax with a National Geographic or a good video game like “Tomb Raider.”

 

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Multiple myeloma community members form “forever friends” by taking it offline

Posted March 23rd, 2017 by

What started as a simple chat between friends in the forum evolved into something much bigger. Members from the multiple myeloma community on PatientsLikeMe decided to take their friendship out of the forums and into real life. Marcia (marcia_holman), Dennis (DennisIvan), Paul (paulatsea) and Lee (Dapylil), along with spouses and grandchildren, got together and discussed life with multiple myeloma, their “new normal” and shared the highs and lows of the journey together.

Read on to find out how they organized the meetup and what it’s like to catch up in person with friends you’ve made on PatientsLikeMe. Like Dennis suggests: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.”

What led you to organizing these in person meet-ups?

paulatsea: Over time I noted that there were a number of us that were within about 40 miles of each other, thought it would be fun to meet so tossed out the idea and the others liked it too so we made it happen!

Marcia_holman: It was an idea thrown out by Paul to start with. Paul, Dennis and I are regulars on the thread, we and a few others who are from out of state chat there and have all become good friends. Of our group I believe Paul has been on PatientsLIkeMe the longest. Anyway, Dennis and I thought Paul’s idea was great. We arranged the date, time and place and put it out for other members. Only the three of us with spouses and guests came out. This time when I heard Lee was going to be out here visiting, Lee and I have gotten to know each other on PatientsLikeMe, he had mentioned he would like to meet the others from our group. So I contacted Paul and Dennis and they were really excited to meet Lee from Kentucky, too. I chose the date and it worked for everyone (I’m having surgery on February 28th so my time was limited). Then I asked Paul to find us a place. His choice of Polly’s Pies worked really well. I was really hoping since we have had so many newcomers and many from So Cal that we would get a good response. I announced it on the home page and on the thread but no takers.

What’s it been like connecting with other PatientsLikeMe members in person?

Dapylil: It was wonderful! I am already a member of a multiple myeloma support group in Louisville, KY, but these friends have been around longer, and I already felt a stronger bond. We had been in this fight together. A bonus to meeting with these folk is that we share a common “language.” We could speak shorthand about what we had experienced. There was/is a built in understanding of highs and lows of this journey “through the valley of the shadows.” They understood my pain without having to explain it.

DennisIvan: It seems actually like instant connectivity. There are no awkward meeting moments like when you are meeting someone new. You feel the warmth of an old friend and begin talking like old friends from the get go. I experienced this feeling at both meetings when meeting these folks even for the first time.

Marcia_holman: It has been a delight to get together and meet someone you have just been corresponding with on line. We can put a face to them. You get to know their personalities and they become “forever friends!”

When you all catch up, what do you talk about?

Paulatsea: We talk about our “new normal”, some of the things we can do, mourn some of the losses of things we struggle or just can’t do anymore.

Marcia_holman: Everything. We talk about how we are currently doing and of course our treatments and our myeloma journeys, but we also talk about our life before multiple myeloma and we talk about our new normal and how it has changed us, good and bad! We still have dreams we want to fulfill and hope! I brought my granddaughter, who is 13 years old, and she said she had fun talking with everyone about school and the new core curriculum. Everyone included her in the group.

Dapylil: I was interested in their stories: “Our stories disclose in a general way what we were like, what happened, and what we are like now.” I wasn’t so much curious about treatment. My focus is what had changed about them mentally and spiritually.

Are the meet-ups just for people living in your area? Or have they come from other places to join in?

Dapylil: I attended this one while visiting in California. I’m from Kentucky. I joined the already established group in Louisville first to hear what others were doing medically for their condition. I’ve stayed in that group for the same reason that I wanted to meet my California friends – Tell me a story!

Paulatsea: I came about 30 miles, open invite to anyone in the group, if they live in the area or visiting the area, all are welcome.

DennisIvan: We welcome multiple myeloma patients and or caregivers from anywhere who are willing to join us. This week we welcomed Lee who came all the way to Southern California from Kentucky. It was a delight to have Lee with his South Carolina (birth state) charm and his wicked sense of humor. My wife and I drove down to Cerritos from our home in Santa Clarita – a trip of about 50 miles and one hour. Traffic in California is lighter on Sunday’s so it is a good meeting day.

If there are other communities that like this idea, what advice would you give them to organize something like this?

 paulatsea: We chose a family type restaurant with a wide variety of foods – meat, fish, salads, vegetarian, – near freeways, make it easy for people to get to and find it. We picked a date and time approximately a month in advance.

Marcia_holman: The hardest part is getting more people to come. I always suggest they bring someone with them. I thought this would make them feel more comfortable meeting people they have only corresponded with online. 

Is there anything else you’d like to share about these meet-ups?

Dapylil: I sincerely encourage not only meeting people through websites similar to PatientsLikeMe and especially PatientsLikeMe! If possible, form your own group. Be open to sharing your experience, strength and hope that you have gained in your journey. Barbara De Angelis wrote: “The journey between what you once were and who you are now becoming is where the dance of life really takes place.” Come and find many dance partners.

DennisIvan: A disease like multiple myeloma makes it easy for a patient to become isolated through circumstances or perhaps their own choice. PatientsLikeMe helps patients seek out others through online contact. An in-person meeting carries it a step further and helps us step out of our inner turmoil to grab some rejuvenated socialization specifically targeted to our needs.

Marcia_holman: They really are a lot of fun. You form “forever” friends. You are very comfortable with each other. It’s like having known them all your life!

 

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March is Brain Injury Awareness Month. Let’s learn more, together.

Posted March 21st, 2017 by

Brain injuries can happen to anyone, anywhere at any time. The important thing to know is that you’re not alone, which is the primary theme of Brain Injury Awareness Month organized by the Brain Injury Association of America (BIAA).

At least 2.5 million children and adults sustain traumatic brain injuries (TBI) in the U.S. each year – on PatientsLikeMe alone there are 7000+ living with a traumatic brain injury. Take a look at the diverse community living with TBI on PatientsLikeMe:

Brain injury awareness gender spread

Brain injury awareness age groups

 

PatientsLikeMe members have spoken up about living with TBI, how they manage it and their initial thoughts after being diagnosed. Here’s what one member, Vicki, had to say about life after her diagnosis with TBI.

Want to get involved? There are a few different ways you can show your support during Brain Injury Awareness Month – you can share one of BIAA’s six promotional posters, better educate yourself and others about brain injuries with this fact sheet, or join the conversation on BIAA’s Facebook page.

If you’ve been diagnosed with a brain injury, join the more than 7,000 members on PatientsLikeMe who are living with traumatic brain injuries. Ask questions, track your experience and find a place in the community.

 

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