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November meeting summary & December Events

We had a great turnout at out November meeting with 34 people attending. I know, I’m always saying it’s a great turnout – but it is! It’s great to meet new people and catch up with old friends and I always wish there was more time. This year we’ve averaged 30 attendees for each meeting – up from 26 in 2012. Thank you to everyone who brought drinks and munchies, too!

Our topic at this meeting was Talking to Your Doctor – Questions you should ask. Ruth Ann and I had been to a presentation by Dr. Leana Wen, author of When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. Below is a summary of what we talked about, including some points that friends in the group made.

I began by explaining my interest in taking the focus from living our lives as patients to enjoying our lives as people. I’m concerned about the amount of over diagnosis, testing and treatments, so I started a blog, Patients Are People, Too, to bring awareness of these issues. Research for the blog led me to Dr. Wen’s book.

I then read from an article I wrote, This Doctor is Listening where I summarized Dr. Wen’s presentation:

I was fortunate that a friend told me about Dr. Leana Wen’s presentation at a local library so I could hear her speak in person.

She began by telling us the stories of two people. Jerry was a car mechanic in his late 40′s who went to the ER with chest pain. Actually, the rest of his body ached, too, because he’s been helping his brother move over the weekend, but the doctors focused on the chest pain so he underwent numerous tests, and was kept in hospital overnight before he was told he could go home. The problem was that Jerry was discharged without ever finding out what caused the chest pain and what he should do from that point on.

Sandy went to see her doctor because she wasn’t feeling well.  The doctor did some tests but couldn’t diagnosis her condition. She continued to feel unwell despite several trips to the doctors who over the course of 18 months prescribed medications for depression and anxiety. In the telling of the story, it was clear to the audience that Sandy wasn’t depressed or anxious, but more likely was upset because she continued to feel unwell and the doctors weren’t helping her. Sadly, by the time she did receive a diagnosis, it was for breast cancer and it had metastasized.

Dr. Wen stressed that our history, or our story, will give the answer at least 80% of the time; far more than technology and data will on their own or with a few yes or no answers. Doctors need to go back to relying less on technology, and more on listening to their patients. She also talked about how we have about 10 seconds before the doctor is interrupted or distracted to get our main point across. Based on the 8 Pillars to a Better Diagnosis in her book, When Doctors Don’t Listen: How to Avoid Misdiagnosis and Unnecessary Tests, she had four tips for us:

1)  Talk about your story instead of only your symptoms. Put it in context and use your own words. Practice your story before going to see your doctor so you feel comfortable with it. Perhaps you could practice it with a family member or friend so you can get their feedback.

2)  Ask your doctor for a partnership. You know your body better than anyone and your doctor knows medicine so you can suggest that you work together and share the decision making. Don’t assume your doctor already knows you want to participate.

3)  Before proceeding with testing, ask the following questions:
• What is your diagnosis?
• What are the doctors looking for?
• What are the risks?
• What is the time link – can you wait?
• How will having the test change how your condition is managed?
• What happens if the test is negative?

4)  Speak up! Ask questions like why do you need a particular test or what are the prescribed medications for?

You can read more about Dr. Wen on her website: http://drleanawen.com
And her blog:  http://whendoctorsdontlisten.blogspot.com/
A new campaign Dr. Wen is starting: Who’s My Doctor? The Total Transparency Manifesto

Some additional comments:
We’ve learned from some of our friends in the group that we can feel out of it and attribute it to Parkinson’s or meds when in fact it may be because of a bacterial infection like a UTI or pneumonia, or dehydration. So when you experience a sudden onset of wonkiness, its time to get thee to the doctor.

It’s possible that you’ll end up in an ER with doctors that don’t know you. They may read on your chart that you have Parkinson’s but it’s up to you to educate them on what this means (as in Dr. Wen’s presentation – don’t assume people know). We know that Parkinson’s is different for almost everyone we know so you need to be clear on how Parkinson’s affects you (tremor, swallowing, freezing, etc.) We also know from the experiences in this group that not all medical professionals fully understand how important it is to take your meds on time or which meds are contraindicated (like certain antipsychotic and anti-nausea/gastrointestinal drugs) so it’s vitally important that we SPEAK UP.

I fully understand that I’m asking a lot because I know what it’s like to not feel well and just want someone to fix it, but it’s particularly important that you are treated not as someone with a UTI or dehydration but as someone with Parkinson’s with a UTI or someone with Parkinson’s who is dehydrated. There is a difference, and if you can make it clear to the medical professionals, and keep them on track, you have a better chance for a better outcome. If relevant, ask the questions that Dr. Wen suggests as well as the ones in the Neurology Now article so that you feel confident that the treatment that is being recommended is the best treatment for you.

You can do some planning in advance like preparing a list of your medications and doctor’s contact information to carry with you. How about adding a description of how Parkinson’s affects you? The list of questions we recommend? Remember that this is a living document and needs constant updating. Some people have a kit ready at all times with updated medical information, spare toiletries and clothes, for medical emergencies.

I’m a strong believer in doing what I can to help myself. Here’s what we can do:

  • Drink lots of water and eat fruits and veggies that contain water. (takes care of dehydration and UTI’s)
  • Eat whole foods, avoid sugar
  • Get plenty of sleep. No sending emails to Sonia in the middle of the night 🙂
  • Reduce stress. Do things that are relaxing like read a book or listen to music. Depends on what you watch but TV can be quite stressful (e.g. news)
  • Get moving! Exercise, walking, gardening, doing things around the house, dancing.
  • Play – be silly – laugh!

Ruth Ann’s comments and the group discussion:

Ruth Ann spoke in a more personal manner and talked about experiences that she and Bob had in various ER’s.

She also told us how personable Dr. Wen is and how when she was telling the story of Sandy, the audience was quiet when we learned that Sandy was Dr. Wen’s mother.

  • When going to the hospital, take your medications in original bottles because it’s very unlikely that the hospital will carry Parkinson medications.
  • The hospital staff will usually allow the caregiver to give Parkinson medications to the PD patient if the medications are in bottles, and you can make it clear what you are giving the patient and when so it can be recorded on the patient’s chart. Be sure to talk to the nurse and or doctor before you give the medications.
  • Ask the doctor to make it clear on the patient’s charts that the caregiver has permission to give the meds to the patient because there will most likely be a number of staff changes during the hospital visit.
  • Along with your list of medications and doctor contact info, include imaging such as x-rays, CAT scans & MRI’s as well as blood work, recent surgeries and procedures. You may be able to avoid duplicate testing which will not only lower your costs but also lower your risk of harm from radiation and possible infection.
  • Before ending a conversation with a medical professional, summarize your conversation so that both sides can confirm that you understand the situation and the instructions.

Here are links to some of the documents we referred to:

When Doctors Don’t Listen

Dr. Leana Wen’s website

Five Questions to Ask Your Neurologist (Neurology Now, June/July 2013)

When Should Parkinson’s Disease Patients Go To The Emergency Room?

More publications from the American Parkinson’s Disease Association available for download

To prepare for  visit:  Northwest Parkinson’s Foundation for Primary Care Worksheet

Health care tips: Be Prepared

General information / My Medical Chart

December support group events

1)  Evening Socials for December – Wednesdays 12/4/13 and 12/18/13

We meet at:  Jason’s Deli 12955
Fair Lakes Shopping Center, Fairfax, VA 22033

Each month on the 1st and 3rd Wednesday at 6:00 pm. Just an informal get together to connect with your support group friends. No need to RSVP, just drop in! Light meals, beverages and desserts are available.

2)  Support group meeting –  Saturday, December 28, 10:00 am – 12 noon

At: Sunrise at Fair Oaks,
3rd floor 3750 Joseph Siewick Dr, Fairfax VA 22033

3) Aquatic classes . . .

. . . will finish on December 19 and begin again on January 7, 2014.

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