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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.

Filtering by Tag: communication

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




Toolbox: Communicating with the Medical World

Terri Reinhart

Communication: understanding others and being understood is one of the most wonderful aspects of being human. A dog can't go in to the vet and calmly explain to the doctor that he has a burning pain in his back left toe (3rd from the right) and has been craving cat food. We humans are the ones with advanced language skills. Why then, is this so difficult?

Part of the problem is our brains have to translate the speech we hear into something of meaning and our brain translators are not much better than the online language translators on the internet. The difference is a computer cannot take facial expression, body language, and tone of voice into consideration. We, on the other hand, take all that and more into our language interpretation center where it is sifted through our experiences, our prejudices, and the traumatic time when we threw up in the middle of our third grade classroom.

I'm sure there are people who have no problem at all with communicating, whether it be with their families, coworkers, neighbors, pets, or any alien species who happen to be visiting. I am in awe of these people. Most of our attempts fall into one of these categories: a) I'm afraid I'll say something stupid  b) I'm sure I must have said something stupid  or c) as usual, I talked too much. These are exact quotes from friends after a recent social outing. 

And this is just in our everyday encounters. When we are trying to communicate our health challenges to our doctor or dentist or emergency room nurse, our ability to communicate effectively can make a huge difference. Before we even begin, our expectations and assumptions can create barriers. Are we going in assuming our doctor won't take time to listen? Or will talk down to us? Do we get intimidated by medical professionals? Do we trust our doctors? It's good to recognize the barriers we bring with us.

What do we want our doctors to know about us? What do doctors want us to know about them? I have compiled a basic list. From the doctor's side, it's a compilation from articles I've read and asking doctors.


I am more than a bundle of symptoms - I am a whole person. I have a biography. I have interests and talents, family and friends. And a sense of humor.

How you see me today is how I am today.  This is so true with PD. If I'm having a good day, will the doctor believe me when I tell them of my challenges? If I'm having a bad day, will they think I'm always like this?

I don't need to be made perfect.  Let me know what can be helped and what can't. I know treatment doesn't take away 100% of my symptoms.

Do you realize you treat me differently depending on how well I am able to speak?  This is my pet peeve, but I realize it's also a natural reaction. If my speech is slurring or hesitant, my docs have talked down to me. It's subtle, but noticeable, and totally unintentional. If I can speak well, my docs speak to me more as an intelligent adult. Do I do this to other people? Something to think about. My first neurologist tended to speak down to me a lot. I was a bit of a mess while trying to get my meds stable. Another patient showed her my blog articles. Suddenly, her attitude toward me changed drastically and she treated me more like a peer. 

I want my doctor to respect me.   I know my body and, while I want to listen and trust my doctor's knowledge, if I tell my doc about a reaction to meds or that I don't want to try a certain treatment, I want them to listen to me and believe me. 


I wish I had the time to really get to know each patient.  Doctors often have very large caseloads these days, not because they are greedy, but because a lot of people need to be seen. This is especially true with specialists.

If you aren't taking your medicine (or my advice), please tell me.  We can talk about it. How can our doctor know if we have the right medicine if we stop a particular drug because we didn't like the way it made us feel? If they think we're doing everything they told us to do, and it's not working, our docs might conclude we need stronger, more aggressive treatment. At a patient panel at our School of Pharmacy, all 5 of us patients on the panel admitted to not always taking our medication the way it was prescribed. Not necessarily bad, but absolutely we need to talk to our docs about it!

Pain is difficult to treat. Anxiety is difficult to treat. There isn't a magic medication.  It's easy to become addicted to drugs used for pain or anxiety. While drugs are often necessary, a good doctor will also help you find resources to learn tools for coping with pain and anxiety.

I want my patients to trust me.  Building trust can take time, especially if we have had negative experiences in the past with Dr. Payne and Dr. Hertz.  Remember, your doctor is a whole person, too, with their own interests and talents, their families and friends. Most doctors are passionate about their work and are there for you.



Considering all this, how do we effectively communicate with our doctors and give them all the information they need? One way is to write everything down and be as organized as possible. If I can do it, anyone can. I'm organizationally challenged. The benefit is that your doctors will be impressed with just how organized you are and impressed because this saves them a lot of time. Conversely, trying to depend on our memory to report how we're doing can lead to finding this on our medical record: "Patient reports she has no cognitive issues, however..."

Before your appointment, write out your questions and concerns. Keep track of the symptoms that are bothering you so you can let the doctor know how often and when they happen, and whether there is any variation in the severity. Have the receptionist make a copy of this and attach it to the outside of your chart. This way, your doctor can read the details even before he/she comes in to see you. 

If you have a good friend or a family member who is willing to come, it's good to bring them along to be another set of ears. They can take notes and perhaps even think of questions you don't. 

Trust yourself! Even if we walk a little awkwardly and slur our speech, even if our face is a mask and shows little expression, even if we shake and our arms go every which way and we have a tendency to walk into walls, even with all our challenges, know that what you have to say is valuable and interesting. Try believing this, even for one appointment. If we believe it, others will, too.