Arthritis Awareness Month: Shedding light on an invisible condition

Posted May 27th, 2016 by

It’s National Arthritis Awareness Month, and while more than 50 million Americans live with it, arthritis is often an invisible condition. It can be hard for those who don’t have it to understand what it’s all about and how it impacts a person.

So let’s test your arthritis knowledge — did you know any of the facts below1?

  • 1 in 5 people over 18 live with arthritis
  • Arthritis pain can occur in several places throughout the body including the neck, back, shoulders, and hips — and even in the skin, heart, and lungs
  • Arthritis is an umbrella term used to describe over 100 medical conditions and diseases like gout, lupus, rheumatoid arthritis, and fibromyalgia
  • People often associate this condition with old age, but while the risk does increase with age, anyone can have arthritis

What can you do?

The Arthritis Foundation has launched a #SeeArthritis campaign on Facebook, and over 10,000 people have turned their profile pictures green to raise awareness. If you’re living with arthritis, use the hashtag and go green!

But first, head over to the forum and help us get the awareness going by sharing the one thing you want others to know about living with arthritis.

 

 

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1http://www.arthritis.org/about-arthritis/understanding-arthritis/


“I learned that life is precious.”

Posted May 23rd, 2016 by

Meet Jenna. She’s been part of the PatientsLikeMe Team since back in 2012 when she first started as an intern. And for Jenna, working at PatientsLikeMe is personal. Her father was diagnosed with ALS when she was just eight years old, and so, being part of PatientsLikeMe is especially meaningful for her.

For ALS Awareness Month this year, Jenna volunteered to talk on camera about how the condition impacted her childhood; sharing how a family banded together to care for a father, husband and friend.

“I learned that life is precious,” she says. “And I learned at an early age that it’s important to do what you love and do something that makes a difference.”

Hear her story!

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Patients as Partners: An open letter from Craig to the “normals”

Posted May 20th, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. For Craig (woofhound), who’s living with fibromyalgia, it’s important to forge strong relationships with “normals,” or people who don’t know what it’s like to live with a chronic condition. By talking openly about illness, Craig believes, we can bring about more compassion and understanding for patients.

Below, Craig illustrates the need for open, honest partnerships with “normals” in an open letter, dispelling some misconceptions and vividly describing a day in the life of someone with fibromyalgia.

What You Don’t Know About Your Friend’s Fibromyalgia

So, someone you know (and possibly love) has told you they have fibromyalgia. With all of the medical information available today and A-list celebrities like Morgan Freeman announcing that they have it, most people have an idea of what this disorder is. I’d like to help with that understanding by telling you about the things you probably DON’T know about this very complex condition.

Let’s begin by listing some of the famous people you may know who have fibro. Susan Flannery, Sinead O’Conner, Michael James Hastings, Frances Winfield Bremer, Morgan Freeman, Mary McDonough, Janeane Garofalo and AJ Langer have all acknowledged that they have fibromyalgia.

About 5% of the population — that’s nearly 1 out of every 20 people — have it. Let’s start with a reminder of the more common description of fibro. Fibromyalgia is a complex neurological pain disorder wherein the brain forgets how to evaluate and respond correctly to pain signals in the body and favors a new standard of “If there’s pain present the only level I know is MAXIMUM DISTRESS.”

Let’s dispel a couple of common misconceptions while we’re at it, too:

1: It’s not real pain, it’s only in your head.

This is probably the most damaging and oft-heard misconception about this disorder. Let’s begin by scientifically saying that ALL pain is “IN YOUR HEAD”! Pain is a brain response to negative stimuli. Fibromyalgia pain isn’t suddenly a new experience for the mind; it’s a disorder where the brain begins to mis-categorize pain and reacts to it as though it were “always on” and always worthy of the highest level reaction.

Your friend isn’t overly dramatic or attention seeking. Their brain is indeed reacting to a painful stimulus. They have no recourse but to feel the pain that their mind is presenting to them any more than they could not react to touching a burner on the stove. Take it from a fellow fibromyalgia sufferer; our minds do a great job of sharing that very real pain response within us.

2. Fibromyalgia is a “rare” condition.

The more we research fibromyalgia and the more we know about it, the more we realize that it isn’t very rare; it’s more likely that it’s underdiagnosed and underreported especially among males with fibro. A chronic pain disorder doesn’t sound like a very “macho” condition, and many men don’t wish to seek help with the syndrome for fear of being called unmanly, or wimpish.

Now onto the things you might not know about living with fibro. Any chronic pain disorder such as fibro takes a massive toll on the individual, their partner, and their loved ones. This toll is even worse when those family and loved ones aren’t well informed about the disorder (see misconceptions above). Many individuals living with fibro must continue to work, and their work suffers from sick days and loss of productivity.

Many relationships are tested by fire when one has fibro. It’s difficult for their partner to understand that a medical condition could have SO MANY unrelated symptoms and cause SO MUCH fatigue and pain that one ends up spending most of the day in bed instead of being the alert, energetic and happy person everyone once knew. Families, marriages, and relationships have fallen apart due to the fallout from fibro.

Now I’d like to talk about a term that I like to call the “seduction of the bed.” When you spend the day in pain, go to sleep with pain, and wake up feeling unrefreshed and still in pain, there’s a strong desire just to remain there in your comfortable bed. It’s the only place you can be that minimizes the pain, pressure, and discomfort. I hear my bed calling to me all the time; it’s seductive promise of just a smidgeon less pain if I’ll but give in and crawl back under the warm covers.

Most of us who live with this condition don’t have the choice of staying in bed all day. We have jobs to do in our home or away in an office. We try not to let our pain and fatigue show through the thin veneer of a smile that we wear in an attempt not to draw attention to ourselves. How do we cope with all of this? The day after day after day of constant pain and fatigue slowly begin to take their toll. Finally, we come to understand that we must learn how to prioritize the events in our lives every day and most times we decide those priorities at the very last moment. We have to learn, and help our friends to understand, that yes I accepted your invitation to visit tomorrow, but I must evaluate my fatigue and stamina regularly, right on up to the time of that expected visit to determine if my body is also willing to make that effort.

Sometimes the answer to that evaluation is no. Maybe today was filled with too many of the myriad of seemingly unrelated symptoms that fibro-mites experience. (Warning, the symptoms I’m about to relate aren’t “pretty” or easily whitewashed.) A full day of irritable bowel syndrome (IBS), where we have mind-numbing cramps that double us over in pain followed by the immediate and overwhelming need to rush to the bathroom for a bowel movement. Maybe today was filled with cognitive fog (CogFog), and even the simplest of words refuse to come to mind when we need them in a sentence leaving us sounding like a blubbering idiot. Maybe today is the day where any piece of clothing touching some sensitive part of our body is too painful to endure, and all we can wear are some light underwear or nothing at all.

We really do care about you and really wanted to visit, but if we listen honestly to our bodies we can’t afford the toll of that visit. We know that makes us come across as “flaky” especially if we’ve had to cancel at the last minute, but if you understood this condition you would see that we don’t really have the choice. We have to prioritize the events in our lives continually; all weighed against the insurmountable weight of this little condition called fibromyalgia.

 

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“TransFatty Lives”: An interview with ALS filmmaker Patrick O’Brien

Posted May 19th, 2016 by

Meet Patrick O’Brien, a.k.a. “TransFatty,” whom we met through our friend and longtime PatientsLikeMe ALS member Steve Saling (Smooth S) after catching up with him earlier this year.

Patrick is one of Steve’s housemates at the Steve Saling ALS Residence at the Chelsea Jewish Foundation’s Leonard Florence Center for Living and he’s also an award-winning filmmaker.

Back in 2005 when he was diagnosed with ALS, Patrick was making his mark on New York City as a rising filmmaker, DJ, infamous prankster and internet sensation. He called himself “TransFatty,” as a nod to his love of junk food. After his diagnosis, he decided to keep the cameras rolling – on himself. “TransFatty Lives” is the result of a decade of footage that shows his progression with the disease and it’s gone on to win the Audience Choice Awards at both the 2015 Tribeca and Milan Film Festivals.

We visited Patrick last month to chat with him about the film and life in general. Here’s what he had to say.

“TransFatty Lives” is available on iTunes, Amazon, Google Play, and Xbox.

 

 

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What’s your experience with accessing your electronic medical records?

Posted May 17th, 2016 by

Hi everyone! I’m Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. Most of you probably already know me, but just in case you don’t, I really focus on bringing the patient voice to affect better treatment, services and care, and to be sure that the needs of patients are at the front of healthcare discussions. I’m also the link between PatientsLikeMe and government and regulatory agencies.

And that’s what brings me to the blog today. The Government Accountability Office (GAO) is working on a new research study and they want to hear directly from patients like you about your experiences with your electronic medical records. Specifically the team at GAO is interested to learn about your experience accessing your health information electronically for viewing it yourself, downloading it to a computer or other device and/or sending it to someone else of your choosing.

Find out more below about the GAO, this new research project and who to contact if you’d like to participate.

The Government Accountability Office (GAO), an agency that evaluates federal programs for Congress, is conducting research to examine patients’ experiences with electronically viewing, downloading, or transmitting their health information, which will be incorporated into a publicly available report. GAO would like to hear directly from consumers to learn about any relevant experiences they may have had in this regard (e.g., viewing health information in an online patient portal, downloading health information into a personal health record app, sending/receiving health information to/from a physician).

If you would like to volunteer to discuss your experiences with GAO, whether positive or negative, please send an email with your first name directly to GAO at HealthInfoAccess@gao.gov by June 7, 2016. GAO will contact you to schedule a short, anonymous telephone interview at your convenience to discuss your experiences.

GAO will NOT collect any personal information during the interview, such as your full name or other identifying information. In addition, GAO will only ask questions about your experiences electronically accessing your health information, not any questions about the nature of your health information itself. Any information GAO collects from consumers will be published in a manner that protects your confidentiality and anonymity.

Let your voice be heard!

 

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Precision medicine: Why medications work for some and not for others

Posted May 13th, 2016 by

Last month we started a conversation about precision medicine, pharmacogenomics and what they could mean for treating patients with certain conditions. We want to continue talking about it and learning more from experts and each other, but before we do, here’s a refresher in case you missed the first post.

Precision medicine is a field that factors your genetic makeup, environment and lifestyle into how you may respond to different treatments. Pharmacogenomics is the part of precision medicine that determines how your genes affect your response to particular drugs. In short, precision medicine aims to help your health team find a solution that is specifically designed to help you.

This brings us to today’s topic: Why is it that medications work for some people and not for others?

There’s no simple answer, but let’s try to make it as easy as possible.  

A handful of your own genes influence how you respond to medications and everyone processes medications differently. For some, even a small amount of a medication may be too much. If your body can’t process (metabolize) the medication, you may have side effects but not experience the intended benefits of the treatment. The opposite can happen, too. The same medication may not work because you process it so rapidly that the dosage would need to be very high for it to work. And, of course, the normal dose of a treatment may work just fine for you.

But it’s not just genes that can affect how you metabolize medications. Many other factors like age, sex, ethnicity, health conditions, and even foods can influence it. For example, drinking grapefruit juice or eating cauliflower can change how well your body processes certain medications and affect how well it works for you.

So, what kind of metabolizer might you be? Here are the basic four as our friends at Assurex Health lay them out:

Extensive (normal) – Breaks down medications normally. Has normal amounts of medication at normal doses.

Ultrarapid (fast) – Breaks down medications rapidly. May not get enough medication at normal doses.

Intermediate (slower) – Breaks down medications slowly. May have higher levels of medication and side effects at normal doses

Poor (slow) – Breaks down medications very slowly. May have higher levels of medicine and side effects at normal doses.

And get this – it isn’t just about how one gene influences the metabolism of a treatment. It’s about how all of your genes work together. That’s called the combinatorial effect.  For example, Assurex Health’s GeneSight test measures variations of multiple genes in your body and then weights them together – rather than one at a time – which may provide additional insight into genetically driven information for each medication for you. So by looking at how all your genes work together, it’s possible to get a fuller picture of how you might metabolize a potential treatment.

So what’s the takeaway here? A few things. Precision medicine isn’t a cure all. It’s a field that’s continuing to emerge and evolve and there is much more to learn. Genetic testing may help narrow the choices of what medications are best for you by removing the medications that are less optimal.  We also know it’s not measuring many important factors that could impact for how well you respond to treatments.

This is why we want to hear from you. Members have been sharing their opinions and concerns in the forum, so let’s keep the discussion going. And stay tuned for Part II of this blog next week where we chat with Dr. Bryan Dechairo, Senior Vice President, Medical Affairs & Clinical Development at Assurex Health about the role of diagnostics in precision medicine.

Please Note:  This post is part of a series of educational content supported by Assurex Health in partnership with PatientsLikeMe.

 

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Raising awareness for immunological and neurological health in May

Posted May 12th, 2016 by

Earlier this year, we interviewed Team of Advisors member Craig, who’s living with fibromyalgia. Craig talked talked about the need to raise awareness for “hidden disabilities” like his condition. So today, we’re doing just that. May 12 is International Awareness Day for Chronic Immunological and Neurological Diseases (CINDs), which include fibromyalgia and myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS).

Those living with fibromyalgia or ME/CFS can have many symptoms that aren’t always easy to explain to others. Below, Craig describes a typical day for him in vivid detail:

“Imagine that you’ve just worked one of the hardest days of your life. You are so tired that you can hardly walk. Just changing your clothes is almost more effort than you can handle. Every muscle in your body is aching and tired, and the slightest movement of some of them sends them into a tight painful spasm.”

 

But while fibromyalgia and ME/CFS are both chronic pain syndromes, they aren’t exactly the same. Patients living with ME/CFS experience five main symptoms1, as opposed to the more general symptoms of fibromyalgia:

  • Profound fatigue that impairs carrying out normal daily activities
  • Unrefreshing sleep
  • Cognitive impairment
  • Symptoms that worsen when a person stands up
  • Symptoms that worsen after exerting any type (emotional, physical) effort

If you’ve been diagnosed with a CIND, join the community at PatientsLikeMe. The fibromyalgia community is one of the largest on the site – over 65,000 people are sharing their experiences, along with more than 12,000 living with ME/CFS.


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1https://www.iom.edu/~/media/Files/Report%20Files/2015/MECFS/MECFS_KeyFacts.pdf


Patients as Partners: Gus and Maria talk partnering with your caregiver

Posted May 11th, 2016 by

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team.

How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this?

Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this.

The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. It’s so difficult and so frustrating because I just want to get up and fix it. I feel like things are getting better, I try so hard to shut my mouth and then listen.

I sometimes feel bad because I want or need help but I don’t want to bother or ask for it. She will always ask me if I need help and I just say no. I feel bothered inside and hurt because she only wants to help me. But I’m working on it every day.

Maria: Gus and I have always worked together. He always tried to make life as comfortable as possible for us all these years. Other than my continuing to work full-time and having to make sure that he has all he needs, my biggest challenge is making sure Gus is getting the proper nutrition and is made as comfortable as possible so that I don’t have to worry too much about him while I’m at work.

What are some new things you’ve learned about each other throughout this?

Maria: Gus is probably impressed with how I’m slowly becoming more patient. Since he has always been the more patient and nurturing one, I am now somehow finding myself being more like him. And I continue to be amazed by his spirit. Even after such a devastating diagnosis as ALS, he was only down temporarily. Although he isn’t able to do very much physically, he continues to be the head and shoulders of our household. He keeps us going strong.

Can you describe the ways you partner? What works and what doesn’t?

Gus: Living on the same page of life, what does this mean? Having an understanding and knowing when to ask for help and doing the simplest things you can do.

Sharing responsibilities sometimes can be tricky. Our bodies may not function but our minds are just fine. Not making a mess and doing your best in every way possible. And no nagging, this is the worst thing possible. And don’t take her or him for granted because we need each other for support and good health. Counting your wins and telling yourself you got this. Sharing your positive thoughts and negative feelings when possible, not holding things inside. Sharing your wins and losses.

Communicating and openness in all ways will make things so much better. I tell my wife everything, good or bad I don’t have anyone else who understands me better than she does.

Maria: Currently I have just been going full speed ahead – on autopilot – dancing as fast as I can. There are a million things I could come up with but I haven’t yet figured out what works and what doesn’t – still trying. My only tip is to continue to stay as informed as possible regarding ALS research and things people have tried to live more comfortably with the disease. Also to help your partner have a better quality of life by trying to find things that will naturally relieve some of the discomfort brought on by ALS.

What’s the most important piece of advice you can give to other couples in your situation?

Gus: The first word that comes to mind is patience (and more patience). There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed. First comes the falling or not being able to use your hands or walking without use of a walker. It’s different for everyone, but the most important part of this process would be communicating and understanding each other’s feelings and how this illness will change everything. It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heartache she endures. To have compassion and empathy really helps.

Maria: Stay optimistic – one never knows how ALS will progress. We have found that with the proper physical therapy and nutrition (Gus has chosen to go with massage therapy, acupuncture, and a gluten-free diet) he continues to get around using a walker. And if his swallowing or breathing starts to feel compromised, he lets his acupuncturist know and he’s good for a few days.

Final thoughts from Gus: Take every day step-by-step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family. For me it’s called positive in and positive out, every word or action matters and your facial expression matters the most. You must become a good poker player, not showing what’s in your hand. Because when you show discomfort or anger your better half will feel like he or she is to blame. Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.

It’s a fact we all struggle with something. No matter what the issues are, they’re important to us. Some of us may have financial debt issues, and others health concerns, and anything else you could think about. When you are ill, sometimes the solutions are a bit more challenging. And that’s where our partners and caregivers come in. The simplest things are now the hardest or a bit more challenging in completing our tasks. Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help? Finding the answers to our questions sometimes may be difficult and strenuous. There are many sites and forums that can assist us like PatientsLikeMe, and other blogs sites associated with partners and caregivers.

Families may not have the resources available to them, finding the information provided will make a difference one patient at a time. Finding help and support is vital – every day someone requires assistance. I believe everyone deserves a helping hand when possible, no matter what. So when your loved one becomes ill and funds are low, they need a place and solutions to their questions and concerns. Sending them to a site may not be the answer, but speaking to them makes it better. Just having someone to listen and allowing them to vent their frustrations is so important. It’s our duty as civilized human beings. Giving back to those who can’t and providing the information is key.

 

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Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Posted May 6th, 2016 by

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the parent who must protect and nurture the child, and do the same for yourself.”

Do I have to diagnose myself to get to the right specialist?

You might. Your family doctor may recommend a certain specialist. Not unusual, but if your problem is seen through too narrow a lens, you may not get the best diagnosis. Is the exhaustion you feel due to a failing heart, or is it due to an indolent blood cancer? Is the stomach cramping due to an ulcer or to a parasite which you brought home from a trip? You may start down a path of specialist to a subspecialist, moving away from a broader review to an increasingly narrow. If this does not make sense, or there is no clear resolution of the problem, this is a time to ask, “What else could it be?”

That may call for a return to the family doctor with all the various reports and tests in hand to review all of them. AND you have been collecting and reading ALL your reports, labs and visit summaries as you go, of course. No one is more likely to read these papers more closely than you. Even if you don’t understand them, which is pretty typical, you will understand the thinking behind your diagnosis. Watch for any errors as to the tests taken. Are they complete? What has changed over time? Are the meds accurate listed? Is there is something that simply does not make sense?

What else could it be?

If things do not improve after a reasonable period — you get to decide that period — or get worse, ask the most essential question, “What else could it be?” This may shift things from a less general diagnosis to one which is rarer, or masked by another health condition. Ask the doctor to justify his thinking, and if what he says makes sense to you. That bum knee may not be the cause of the several new falls. Maybe the new high blood pressure medication from another doctor (or this one) causes you to be dizzy, making you fall, reinjuring the knee. See how this works?

Getting nowhere? Or are they just wrong?

It’s hard to change doctors, especially if the diagnosis seems wrong or if errors have occurred in the process. Patients fear that they will be labeled as trouble makers. They may not think the new doctor will be objective with a colleague’s patient, or that there is not a more accurate diagnosis. How does one ask for a second or third opinion or a referral to a large medical center?  You will have to practice saying, “I know you have been working with me on this for some time, and that you want the best diagnosis and treatment for me. Now it seems time to send me on to another medical center/a more specialized treatment center/Dr. So-and So. I will need to gather all my reports and histories, and know you can make this efficient for me.”

Play an active role in your diagnosis and treatment, and do so at the outset. Patients are too often late to realize this, and far too sick to do so effectively. Don’t hesitate to ask for help from friends and family, and from social workers or patient advocate in the system. Again, be like the parent who must protect and nurture the child, and do the same for yourself.

 

 

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Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Posted May 5th, 2016 by

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed.

 Peggy draws from her own experience with kidney cancer and breast cancer to answer some important questions patients face in their diagnosis journey. Check out what she has to say about advocating for yourself below, and stay tuned for more from her soon!

How do I advocate for myself?

When you need to see a doctor for a new or a recurring problem, you are told to “be your own best advocate.” Sounds good in general, but is it really necessary?

Answer: YES. You have tried to figure out what is wrong and you need help. That sore knee is just not healing, or that odd breathlessness seems more frequent. Your family is tired of your complaints or you just “know” something is wrong.

Practice telling your story to the doctor, completely and accurately, so he might really listen to all of it. He may interrupt you within 18-20 SECONDS, studies show. If you are prepared, you will be more likely to say, “Let me complete my explanation of my symptoms or my family history.”

Before the appointment, write out what has happened — why you need a doctor. Be exact. Say “Seven weeks since my fall,” not, “This happened after our vacation.” Explain that you iced and elevated it twice daily for two weeks, and have been wearing a knee wrap ever since.  Say that you take “extra-strength Advil four times a day,” not that you’ve been popping pills ever since.

Explain any other meds you take and why, any history of being slow to heal, or that you are worried that this could be bone metastases like 10 years ago.

Give the doctor clarity about your situation and concerns as possible. Be honest about the level of pain, the interference with your daily life — that you cannot brake the car with your right leg.

If these are more vague symptoms, start a daily diary. Include shifts in food, bowel or sleeping habits, when and how the dizziness occurs, any medications, new or old and prescribed or not, and your own thinking on these symptoms.

Do some basic research. Check if that new medication interferes with an existing med, and if you are taking it properly — with food, one hour before meals, at night. Older people must be alert to this, as age will affect the ability to metabolize medications. Multiple meds from several doctors? Ask your pharmacist to review them for harmful interactions. Plan to bring all those meds (yes, even the ones which are “just” supplements or vitamins) to the appointment.

 

“We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis.”

 

What if my child was the patient? How would I handle this?

Consider a new mother bringing a sick child to the doctor. Both mother and child are “new” at this, but know something is wrong. Mom comes in with specific details — a fever that disappears in the day and is back at night, sudden bouts of diarrhea, pulling at the ear, and so on. The doctor uses these details to diagnose a food allergy or earache, prescribes a treatment and sends mom and child home. But Mom is given a series of things to watch and do. She will know that this should clear up in 8-24 hours, not “pretty soon,” that an increase in fever should be reported, and a very high fever might require a trip to the ER. She communicates on behalf of the child, ready to respond when things go wrong, and knows to take the child to the ER, to the office or to prep for a specialist.

Adults don’t do this for themselves. We take the new drug without discussing others with the doctor. We don’t fill the prescription because the diagnosis “just doesn’t seem right” — but don’t discuss this with the doctor. We hide the excessive alcohol use, or the very odd rash in a very private place, as being irrelevant to the discussion at hand. We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis. The thoroughness of the mother with the pediatrician might be a model for all of us who are too passive in dealings with our doctors.

Do I have the right diagnosis?

Keep in mind that a diagnosis is really more a “working” diagnosis. It could change as the treatment and/or the disease progresses. There is often a great deal of uncertainty in that diagnosis, and is based on observations in large numbers of patients, who may or may not be exactly like you.

Keep tracking your symptoms, whether you are given any medication or treatment. Ask the doctor how long it might take to alleviate the problem, what might make it worse or better, and what might require a second visit to the doctor. If the problem persists, reach out to that doctor again with your questions.

 

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A new precision medicine program for ALS patients

Posted May 4th, 2016 by

Last month, we talked about precision medicine and what it could mean for psychiatry. What’s precision medicine again? It’s a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1

Today — just in time for ALS Awareness Month — we’re digging deeper into how it can be used to treat ALS. Our partners at the ALS Therapy Development Institute (ALS TDI) run the world’s first and largest precision medicine program in ALS, and here’s what it’s all about…

How the program works

The goal of ALS TDI’s program is to identify subgroups of ALS and possible treatments for them using a patient’s personal data, genomics and iPS cell technology … and then test the most effective treatments in a clinical trial.2 Check out the graphic below for an overview of what program participants can expect (tap to make the image larger).

 

 

If you’re living with ALS, head over to the forum and tell us what you think about using precision medicine in ALS care — would you participate in a program like ALSTDI’s? Add your voice and let’s learn more, together.

 

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1 www.nih.gov/precisionmedicine

2http://www.alstdi.org/precision-medicine-program/


Patients as Partners: Member Jeff on teaming up with your doctors

Posted April 28th, 2016 by

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in action to kick off conversations about partnering. First up, during Parkinson’s Awareness Month, Jeff (Deak80) shares his experiences finding the right doctor and looking for “red flags,” communicating effectively, and sharing responsibility in his care.

 

As part of the Team of Advisors, we’ve been tasked to think about how we partner in our healthcare. Here are some examples of where, and more importantly how, I put the partnership principles to use. Remember that using the partnership principles is not a quick fix nor for one-time use. It’s important to establish a strong base through consistency of use and recognition that an effective partnership is based on a mutual respect and building a long-term relationship.

Know your needs in the partnership

Starting last December, I had the opportunity to put the partnership principles to use. Changes in my Medicare Part D prescription provider were driving me to change my Primary Care Provider (PCP). My previous year Part D insurer eliminated one of my Parkinson’s drugs from their formulary list. When I reviewed my options for prescription coverage (i.e., all my medications on an insurer’s formulary list), I had only 1 Part C HMO plan which met the requirements. (Those familiar with the basic construct of Medicare know that with a Part D plan you pair Medicare Supplemental Insurance to get complete coverage, or you use a Part C Advantage plan which covers both Health and Prescriptions).

Fortunately, my Parkinson’s specialist was covered under this HMO, but my PCP was not, so I began the search. I used the insurance company’s “Search for a Doctor” capability against a set of basic requirements:

  • Within 10 miles of my house
  • Has an internet healthcare rating of 3.5 or greater. (There are multiple rating services, I use this as a guide, not a rule.)
  • If they are part of a doctors group that has provided care to me in the past, was it a good or negative experience?

Using this basic approach, I was able to identify two doctors at the same practice as a potential PCP. I called, and the one with the first available appointment became my PCP. Notice that the selection process of my PCP was short and not overly taxing. One reason for the expedited process is that during the first few appointments I am watching for “red flags” or areas of concern. If I encounter too many “red flags” I move on to another doctor. As indicated below, I did encounter too many “red flags,” and quickly selected another PCP. The only change I made to the new search is I expanded the range to 15 miles. I have met with my new PCP and I can tell that this PCP will be a much better match to the partnership principles than the first. 

“As patients we may have to put more effort into the partnership to make it work…I am OK with this since I have the most to gain in the partnership.”

Establishing an effective patient-doctor partnership requires effective and efficient communications and recognition that a 50/50 partnership never exists. What this means is, as patients, we may have to put more effort into the partnership to make it work (>50%). Personally, I am OK with this since I have the most to gain in the partnership.

I look for effective and efficient communications within the doctor’s practice in two areas:

1. Does the office administration team communicate effectively with each other?

I have left more doctors due to poor office support and the office’s inability to manage a schedule than doctor/medical issues. The office administration is a key member of the doctor’s team. They are responsible for a lot of the information getting into your medical record as well as managing your access to the doctor. Some of the red flags to look for with the office administration are:

  • Is some erroneous information sneaking into your medical file? A recent experience of mine in this area is that my birth date was entered incorrectly. Although I appreciated being 10 years younger, a lot of medical decisions, tests, etc., are driven by your age. I called three times over four weeks and they still had not corrected when I changed PCPs.
  • Does the office run on time? I don’t mean necessarily to the minute, but are they even close? After relocating from Seattle to Boston, I selected my Parkinson’s specialist based on the recommendations of my doctors in Seattle. Although the doctor was medically very good, the office frequently ran over two hours late in the afternoon. These delays caused me significant stress. I was also working full-time at this point so the delays were also impacting work. Needless to say I changed specialists to one that was medically very good and the office runs almost always within 15 minutes of being on time.

2. Does the doctor’s office have the tools to communicate effectively with the patient?

You will hear phrases such as “patient portal” or “electronic medical record” (EMR) or “electronic health record” (EHR). In either case, these are referring to the system that a doctor typically uses to communicate with the patient. Usage varies between doctors. The PCP I now have is an active user of the EHR system. Even if your doctor is not an active EHR user, make sure you are. Access to this system provides you direct access to medical records (test results, surgeries performed, etc.).

Communicate effectively

Typically, I send an email about a week before my next visit to my Parkinson’s specialist. This approach provides me the opportunity to:

  • Document how I have been doing since the last session
  • Outline the objectives for this session
  • List the questions I have for this session
  • Allow the doctor to engage other resources if needed

More importantly it helps me organize, prioritize. Additionally, there is a much better chance of me remembering to cover everything in this email versus remembering onsite. Although my memory is still pretty good, relying only on your memory is setting yourself up for a disappointing meeting.

Share responsibility

Take personal ownership of my health. I am always trying to improve my situation. I attempt to eat right, get enough sleep and exercise regularly. I also put the effort into an effective patient/doctor partnership. As I mentioned above the patient/doctor partnership is not 50/50. I am not sure what the ratio is, but since the patient has the most to gain, logically they have to put the most into the partnership.

Finally, I found there’s a lack of real partnership in a lot of medical decisions. This lack of partnership is not just limited to the patient/doctor relationship. If you have multiple specialists involved, you may have to get them to meet together to discuss your case. Until you do, I have found that doctors follow a very linear process, and that joint decision making often does not occur.

You are your best patient advocate, so step up and take charge.

 

 

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Precision medicine: What does it mean for psychiatry?

Posted April 20th, 2016 by

Imagine that your healthcare provider is treating your illness, but instead of using the standard trial and error method of prescribing medications, he or she has information about which ones have a higher likelihood of working for you and which ones have less of a chance. That’s the aim of precision medicine.

Maybe you’ve heard the terms precision medicine and pharmacogenomics, but do you really have a clear understanding of what they mean and how they could impact your health journey? Let’s start a larger conversation about it, but first, here are some definitions that can help us all speak the same language.

Precision medicine is a relatively new way of preventing and treating illnesses that takes into consideration people’s genetic makeup, environment and lifestyle.1

Pharmacogenomics is a part of precision medicine that determines how genes affect a person’s response to particular drugs. This field combines pharmacology (the science of drugs) and genomics (the study of genes and their functions) to develop effective, safe medications and doses that will be tailored to an individual’s genetic makeup.2

Translation: Pharmacogenomics and precision medicine allow your healthcare team to take into account how you may respond to different treatments and help them find a solution that is specifically designed to help you.

On the one hand, treating patients individually is nothing new. The healthcare industry has always sought to understand the differences in humans and how to effectively treat them. What is new is the advancing technology behind how this is done. Genetic features allow us to identify individual differences in our diseases and how we might specifically respond to drugs and therapeutics. As these technologies are still evolving, it’s important to understand how they will be used and how they can positively impact patient outcomes. This is why we want to share some information with the PatientsLikeMe community and hear what you have to say on the subject.

So what could this mean for patients with psychiatric conditions?

Dr. Joel Winner, medical director at Assurex Health

We caught up with Dr. Joel Winner, a practicing psychiatrist and medical director at Assurex Health to learn more.

“Sometimes in psychiatry it seems like our prescribing methods are drawn from throwing darts at a dartboard. Certain people respond well to a given medication and certain people don’t. The unique pattern in each patient’s genetic make-up is an important reason for the differential response. A good fifty percent of patients have side effects on their medications. In some patients it takes years to try to get the right medication – or right combination of medications – for them.

“With pharmacogenomics, there are now tests that can look at some of these genetic variants to help predict which medications may cause side effects and which ones are less inclined to do so for a given patient. Having this information ahead of time can really support treatment decisions. I’ve had several successes from narrowing down regimens, getting patients off certain medications, and regulating and keeping them within a safe threshold.”

When asked about challenges and barriers faced by precision medicine, which, as an emerging field, has capabilities that aren’t fully understood, Dr. Winner said, “Precision medicine is another tool healthcare providers have to help guide treatment through supported medication selection. As always, there are other non-medication factors that should be considered as well including: personal and family dynamics, comorbid diagnoses, social context, substance issues, therapeutic bond, etc. With my patients I try to level-set expectations for medications and pharmacogenomics in general. Finding the right medication is like finding the needle in the haystack. With precision medicine, we’re simply removing some of the hay. In other words, we’re removing medications that may be less likely to work for that patient or have a higher likelihood of causing side effects. The goal of pharmacogenomics and tests like this in general is to reduce the time that’s taken to find the right medication so patients can get back to more fully engaging their lives.”

What do you think about the idea of precision medicine and pharmacogenomics? Do you have any experience with a pharmacogenomics test? Head to the forum to weigh in on this topic and let’s learn more, together.

 

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1 www.nih.gov/precisionmedicine

2 http://ghr.nlm.nih.gov/handbook/precisionmedicine/precisionvspersonalized


“Adapt, improvise and overcome.” — PatientsLikeMe member Dana shares her experience for Sjögren’s Awareness Month

Posted April 15th, 2016 by

In honor of Sjögren’s Awareness Month, we connected with PatientsLikeMe member Dana, a New Jersey-based poet and screenplay writer who was recently diagnosed. This isn’t the first time we’ve interviewed Dana — she was a member of our 2014 Team of Advisors!

Here, Dana talks about the daily challenges of living with Sjögren’s, an autoimmune disease often associated with rheumatoid arthritis that affects nearly 2,000 other PatientsLikeMe members. She also shares how she manages Sjögren’s along with her other conditions (bipolar II, depression and thyroid issues), and offers some advice to patients in her situation: “Take it moment by moment.”

Tell us about your diagnosis experience.

It started with pneumonia. After a batch of antibiotics, I was OK. Then I got a glandular infection. More antibiotics. Two months later and it was back again, it looked like I had the mumps, but it was my glands behind my ears again. My primary doctor suspected something and ran a complete blood work on me. Testing for RA and lupus and everything else.

I came back negative for RA, but positive for something called Sjögren’s syndrome and nothing else.

Most doctors only know that you get dry eyes and dry mouth from Sjögren’s syndrome. But there are more dangers to the body than just those two symptoms. I have chronic pain in my hips and my knees, which is strange since I have two total knee replacements. So it’s really not a joint issue. It’s a connective tissue issue. So my whole body aches and is sensitive to the touch, meaning if you just touch me, I feel pain where you touched me.

How would you describe Sjögren’s to someone who doesn’t have it – how does it affect your daily life?

Sjögren’s is a close cousin to lupus and is treated in the same way and with similar medication. I wake up early to take my thyroid medication. Then after light therapy for my depression, I can eat and take my Plaquenil for the Sjögren’s, and the vitamins and other medications for the bipolar and depression.

But during the first hour and a half, I am in pain. I have to take pain killers to function. I still get break-through pain from walking too much or sometimes from doing nothing but sitting.

I have something called “flare-ups” where the pain is so excruciating, even my daily meds can’t help me. So I have to take Prednisone for six days. This usually means I’m down for a week in bed, sleeping and dizzy and just feeling awful.

You never know when a “flare-up” will occur, so making plans to do future things is nearly impossible. I take it day by day and sometimes, moment by moment.

How has it been managing your Sjogren’s syndrome along with bipolar II, depression and thyroid issues?

It was very hard in the beginning. I had over 20 years to learn the ins and outs of dealing with mental illness. But I was clueless when dealing with chronic physical pain. Talk therapy doesn’t work when it feels like a knife is being twisted in your thigh.

I was lucky that I have medication which is working for me presently and at the time of diagnosis. I found an online support forum which answered many questions my doctors where unable to answer for me.

There are times when you do feel fine and the pain level is low and you just want to do EVERYTHING! But you have to pace yourself, or you will find yourself exhausted and unable to do anything. This is something I’m still working on, the pacing. You are so used to feeling bad, that even the small windows where you feel like a human being again have to be taken slowly.

Overall, it is very hard dealing with depression/BP/anxiety, etc. and not being able to walk some days or being so physically tired that it’s an effort just to get up to take care of yourself. But you do it.

What’s your best piece of advice to other people managing multiple conditions?

Don’t dwell on all the illnesses that may be on your plate. It will make you numb. Instead, just keep moving forwards. Adapt, improvise and overcome. I remind myself of this, because you have to adapt to whatever situation you are in and you have to improvise on different ways to look at your life and sometimes it may be dark, but you have the strength to overcome what you may be feeling at the moment. Take it moment by moment. Don’t look at the big picture, just the things YOU can effectively handle and change.

This month is all about awareness – what do you do to stay informed on the latest research and information about your conditions?

I read the forum posts and I subscribe to some newsletters. I find the most helpful information from the Sjögren’s Syndrome forum I frequent and I also read articles on the Sjögren’s Syndrome Foundation.

What was the most valuable thing you learned in your experience as a member of the 2014 Team of Advisors?

That we all have something in common, no matter what our illness may be. When I joined, I wasn’t diagnosed with any of the other physical ailments I have now, so there were times I felt out of place. But by listening to others talk about their experiences, I could apply my condition to their condition and learn a new outlook on where I was in my life.

 

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