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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Clarity is Not Dumbing it Down

Terri Reinhart

Did you understand me?

The last time I was in the emergency room, I was a little taken aback by how one of the nurses spoke to me and I realized she was interpreting my self-advocacy combined with, what I considered to be a rational fear, as hysteria. The situation was this: I occasionally have dystonic storms. Most of the time I do okay and ride out the storm at home. Sometimes, as the article in the link describes, they get away from me. My rational fear is of medication reactions. I've had a number of times when medications have depressed my breathing and virtually paralyzed me, making it impossible to let someone know I'm in trouble. 

At this emergency visit, I was being pumped full of drugs. I made it clear they needed to monitor my breathing because of past reactions I've had. They assured me they would. A couple of hours later, in the room, I told the nurse again that my breathing needed to be monitored. She smiled and said, as though explaining to a 5 year old, "Don't worry, if you stop breathing, all sorts of bells and whistles go off at my desk." Her body language and tone of voice made me feel as though I was just being silly. I didn't know they really were monitoring me. As far as I could tell, I wasn't hooked up to any monitors and the monitors in the room were not on, but I was afraid to say anything more or ask any more questions. She made it very clear how they saw me as a patient. 

How could I have communicated my concerns in a better way? How could the doctors and nurses have communicated to me more effectively?

Patient engagement

I've been pondering this question for a long time, not just because of this one visit to the emergency department, but because of numerous experiences with medical professionals when I accompany my husband, my parents, or one of my kids to an appointment or the emergency room. One phrase I remember hearing (and using) any number of times is "Why should I go back? I know what they're going to say." How many people put off going to the doctor for this reason? 

Several years ago, I became involved with the wonderful organization called PCORI (Patient Centered Outcomes Research Institute). PCORI channels funding to various entities for clinical studies. The applications for funding for these studies go through a rigorous process, all of which include patient representatives in making the decision. I was one of those patient representatives during one funding cycle. It was a lot of work, especially as all four of the applications I read were chosen to be presented during the in-person review in Washington DC. It meant I had to attempt to speak about each one. It was exhausting and I don't know if I really have the stamina to do this, at least not often, but it was also amazing to be part of the process.

The Alan alda center for communicating science

I was also able to attend the first annual meeting of PCORI in 2015. This was truly an amazing experience. To hear first hand the direction we are going in the field of health care was awe inspiring. I wish I could go every year. I especially wished I could have gone this year because one of their keynote speakers was Alan Alda. Yes, the Alan Alda, aka Hawkeye Pierce from M.A.S.H. His presentation was titled, "Improving How We Talk to the Public about Science and Health". Fortunately, even though I couldn't attend in person, I was able to attend virtually through their webcast. Mr. Alda's talk was shown live and would not be archived, so this meant getting up at 6:00 am to be ready and somewhat awake when it started at 8:30 eastern time. It was worth the effort.

Few of us know about the work Mr. Alda has done in this area. Having had a life long interest in science, he hosted a PBS program called "Scientific American Frontiers". He discovered by asking questions of the scientists, he could help them to explain their work in such a way that he could understand it and become even more excited about it. This, of course, helped the audience to become engaged as well. Taking this idea even further, Mr. Alda, along with others at the Alan Alda Center for Communicating Science at Stony Brook University, have created training programs - workshops, online learning, and private coaching - all designed to help scientists and health professionals to communicate in such a way that others will understand and be engaged. 

I will let Mr. Alda explain it himself. This isn't his talk from this week, but a short video I found on youtube which contains a small nugget of the treasures he shared with us.

Good Communication 101 by Alan Alda

Real listening doesn't take place unless you're willing to let the other person change you ~Alan Alda

Considering what I learned from listening to Alan Alda speak, what could I have done to communicate my concerns better? What could the doctors and nurses have done? To be honest, I'm not sure I could have done anything more at that point. I was in pain. I was frightened. There's something about labeling someone with anxiety that irks me. It's the tone of voice that says "Oh, you're just anxious. Aren't you being silly!" Maybe I'm not anxious. I'm afraid. Fear is not an emotion you hear about a lot these days, but how do you go through an emergency health issue without having some fear? Had the nurse acknowledged my fear and addressed it, things might have been different. She could have explained how they were monitoring my breathing and heart rate. I would have understood. She could have asked if I would feel more comfortable if the monitors were on in the room as well so I could relax and know the monitors were working. 

On the other hand, I don't wonder why this is difficult for medical professionals. Caseloads are so high for all the doctors I see, I don't know how they can possibly get to know their patients. When they are rushing from one room to another, where's the space for any connection? Perhaps what I could do, if I'm in a situation like this again, is try to connect with the doctor or nurse. Ask them about their busy day. I could acknowledge their undoubted frustration with trying to effectively communicate with patients, often patients they only see once or twice a year, in the short time they are allowed for each appointment. How many hours do they work? How often do they have to miss things they'd like to do? How stressful must it be to work like this! 

It's very important for us to see that science is done by people, not just brains but whole human beings, and sometimes at great cost.
Alan Alda