10 posts from May, 2016

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/