More on Participatory Medicine: Patient Research

This post is adapted from one I wrote last week on e-Patients.net Blog: http://e-patients.net/archives/2009/09/participatory-medicine-and-patient-research-its-gonna-be-a-new-world-indeed.html.

Matthew Herper’s post about thalidomide treatment of Myeloma is a good example of how patients will contribute to medical knowledge in the future, and may form a cautionary tale for patients who get involved to this degree in formulating new treatment approaches.
I work with Bart Barlogie, MD, (quoted in the article as the physician who ran the first clinical trial of the use of thalidomide in treatment of Myeloma) who is an innovative clinician researcher who has extended the life of many patients with Myeloma with his treatment approaches. He is also treating my wife who was diagnosed three years ago with Waldenstrom's Macroglulinemia, a form of lymphoma that resembles Multiple Myeloma (she has responded very well to his treatment).

I was a good friend of Tom Ferguson, MD, who came to UAMS and was treated with thalidomide in 1999. Tom was also the founder of the “e-patient scholars” who started this web site and still meet annually. What he began has morphed to the budding Participatory Medicine movement, evidenced by the formation of the Society of Participatory Medicine and the soon-to-be-launched Journal of Participatory Medicine, which I will Co Edit along with Jessie Gruman. And that takes us back full circle to this story of a patient doing research about their condition as an example of Particpatory Medicine, which Tom strongly encouraged, facilitated and exemplified with his actions.

Whether Beth Jacobsen’s accusations about Celgene stealing her husband’s idea has merit or not is not something I am prepared to comment on. I’ll let the courts sort that out. But the fact that her husband pushed her physician to try a novel approach to try to save his life, and that it was tried (even though it didn’t work for him), is an example of what will happen increasingly in the “new world of Participatory Medicine”.

The article notes that, although Mr. Jacobsen didn’t respond to Thalidomide, the next patient had a dramatic response. Again, ironically, Tom Ferguson was one of the early patients who was treated at UAMS by Dr. Barlogie with Thalidomide. His Myeloma was rather advanced at the time, in 1999. Whether the Thalidomide was the reason or not, he did well for years after that. I didn’t meet Tom until much later, in 2005 and he died of complications of his disease in 2008.

So, he would undoubtedly be cheering with the knowledge that the treatment that helped him beat back his disease for over a decade was probably “discovered” by a patient who was practicing Participatory Medicine!

How many other clinical trials are out there waiting to be started by ideas engineered by patients who have the utmost to gain and the ultimate motivation–saving their own life.

Participatory Medicine: Patients doing research, usually online, and taking the ideas into the medical arena. Get ready, it’s going to be a brand new world!

When Dreams are NOT So Sweet

Have you ever been startled out of a deep sleep by a crying child? The first few times this happens, we parents levitate out of bed with our heart pumping and adrenaline surging, ready to do battle to protect our offspring. Parents are ever diligent during the day to make their children’s world as safe as possible. We hold their hands while crossing the street, we child proof our homes, we make sure their daytime care facilities – be it daycare, babysitter or school – are a safe environment. And at night, we tuck them in their warm and cozy beds with a full tummy and a gentle kiss on the forehead. Then we allow ourselves to relax, enjoy adult company and finally sleep before we have to do it all over again the next day.

Then the nightmares begin. For most children, nightmares are occasional incidents that can often be attributed to a specific event, or to an overtiring and difficult day. Sometimes we never know what triggered them. We are just glad they don’t happen very often.

Are nightmares normal? It certainly looks that way. Most children will have some experience with them. Nightmares may be the brain doing some extra work, below the level of full consciousness, to work through a stressful situation from their day. We all need time to process difficult issues and sometimes nightmares are a side effect of that healthy process. When the nightmares happen more often, this could be a sign that the child is not coping well with something stressful. The nightmares continue, increasing in frequency, as the child tries and fails to resolve the stressful issue.

How can we help our crying child in the middle of the night? Alan Siegel, Ph.D. from Cappella University suggests the four R’s for nightmare relief.

Reassurance that they are not alone, that they are safe and that it is OK to talk about their dream is the most important first step. Give your child a hug and let them know that you understand about nightmares and that everyone has them. Then discuss the dream.

Rescripting how the dream ends after you’ve gotten the details of the actual dream is like assertiveness training for the imagination, (according to Gordon Halliday, see reference below). Encourage your child to use their imagination in changing the scary parts and rewriting the ending where they are in control of the situation. Put that dinosaur in time out, tell that tiger, “bad kitty!” and make him turn into a kitten, or shout, “Boo!” to the ghost and scare him away. But be cautious about using so much imagination here that the nightmare’s message or warning of a possible coping problem goes unanswered. And certainly, don’t be so creative that you end up creating your own nightmare scenario!

Rehearsal goes a step beyond the new endings we imagined in rescripting. We go over the dream again with our new solution, and then we apply that tool to a similar situation.

Resolution involves getting to the root of the matter. Or what caused the nightmare in the first place. If the child had difficulty with a similar situation the previous day, ask them how they would now change that outcome? And remember that children will only talk about the scary stuff when they feel safe enough to relive it in the retelling. Writing, art work, or creating a play or story are good alternate ways your children can express their fears.

So what do we do when nightmares occur too frequently? When the nightmares are consistently violent or disturbing, when they just won’t go away no matter what you try, it may be time to turn to an expert. Your pediatrician can rule out any side effects from prescription drugs or any physical condition that may be triggering the nightmares. After the physical aspect has been ruled out, a behavioral health specialist should be consulted.

Now, as a practicing psychologist, I can tell you that I have also used some of these same procedures, very slightly amended, to help older children and adults as well. So, keep that in mind if you have your own issues with troubling dreams. Hopefully, this little ditty on nightmares will help you and help our little ones sleep like the proverbial baby.

Pleasant dreams.

Thanks for reading and please leave a comment on your own experience with childhood nightmares.

References for this blog:

Dreamcatching: Every Parent's Guide to Exploring and Understanding Children's Dreams and Nightmares by Alan Siegel and Kelly Bulkeley. Published by Random House's Three Rivers Press. Copyright © 1998.

"Treating Nightmares in Children" by Gordon Halliday in Charles Schaeffer, (editor) Clinical Handbook of Sleep Disorders in Children (New York, Jason Aronson, 1995)

The Four Pillars of a Healthy Lifestyle

I recently moved my work to the Palm Springs area of California. I am the Vice President for Primary Care at Eisenhower Medical Center in Rancho Mirage, California. My duties include starting a new primary care practice where I also work as a family physician. This week I developed a preventive medicine presentation I will be giving to groups of people, mostly seniors, in our area. I would like to share my key messages here.

Balance is the key to health in many ways. Our lifestyle choices play the major role in whether we are healthy or sick, outweighing our genetics and the bad luck of getting a disease for no apparent reason. There are four areas where lifestyle play a major role in our health. Do these four things and you are likely to be healthy:

Eat Right: We are what we eat, so what goes in our body is vital to our health. The mainstay of our nutrition should be vegetables and grains. We should avoid the saturated fats found in many animal meats and dairy, and the trans fats found in many fried foods and pastries. Eat healthy fats like those found in nuts and quality vegetable oils, such as canola and olive oil. We should avoid simple sugars that make us hungry and have protein at every meal (Nuts, low fat dairy, lean meats and fish). We should avoid excess salt. Do not eat many more than your body needs to maintain a healthy weight. See my other blogs since I write here about nutrition every month.

Be Active: Use it or lose it is a good rule for keeping our bodies healthy. Look for opportunities in your daily life to walk more, climb stairs and be active. Then, devote 5 of the of the 168 hours in a week to one or more physical activities of your choice. Being physically active is the best long term predictor of living a long and healthy life.

Sleep Well: We trained our children in how to sleep, but many of us forgot the lessons. Prepare for a good night's sleep by winding down our daily activities, turn down the lights, and leave the problems of our day behind. Imagination is ok for adults to use to enter the world of sleep. As adults, 6 to 8 hours of refreshing sleep is usually enough to replenish our bodies.

Manage Stress: Stress can wear down even the healthiest body. Be aware of our stress levels at home and at work, and seek ways to reduce the stressors. Some of us thrive on a certain amount of stress, that is fine. We know when we are distressed because we are not at ease and not smiling as much. I like these three rules for handling stress: 1. Don't sweat the small stuff, 2. Everything (just about) is small stuff, and 3. If you cannot fight, and you cannot flee, then flow.

Take a moment to reflect on these four "pillars" in your life and see what adjustments you can make to preserve your health.