All For One…

By Soania Mathur

Once again it was a restless night but worth it this time. I got home around 1:30 in the morning wired on a combination of caffeine and Sinemet. The insomnia that ensued was inevitable but I had such a great night eating, chatting, laughing and playing cards with my girlfriends that I have no regrets. It was our monthly girls’ poker group, one of many get togethers that I look forward to on a regular basis. Be it lunching out, dinner at a friend’s place, movie night or simply going out for a coffee, having that social connection is invaluable to me. With three kids and a million duties to fulfill, it’s not easy to find those opportunities but it is something I try and make time for.

Let’s be honest, we are all social beings, granted some of us more than others, and our social network can provide us with the distraction that we sometimes need to escape from our daily stress. It’s nice to lose yourself in the sometimes mindless chatter and not have to think about some new symptom that has cropped up, how screwed up your meds seem or worry about what the future holds. [...] continue the story

Importance of patient participation using information from the Internet

Friday, March 23, 2012

Patient input and participation in one’s care are extremely important. As a physician who was diagnosed with throat cancer I encountered many instances where my physicians failed to diagnose my condition and my input was instrumental in improving my care. That input often came from information I found on the Internet.

One example relates to the blood pressure I developed 16 month after receiving radiation treatment to my neck. I was initially labeled as suffering from “essential hypertension”, the most common cause of high blood pressure in individuals over the age of 65 years. I suspected that the radiation treatment I had received lead to the development of hypertension, but my physicians dismissed it. I started to check my blood pressure myself and noticed that it frequently spiked to over 190/110. After my physicians were unable to come with the correct diagnosis and treatment for this unstable blood pressure, I started searching the Web for answers. I was fortunate to discover a rare entity called “paroxysmal hypertension” that can result from radiation damage to the carotid artery baroreceptors. Only after I contacted the physician who researched that topic did I finally start to receive adequate treatment for this [...] continue the story

Now To Tell the Kids…

By Soania Mathur

Time to tell the kids… As I laid down with my youngest daughter tonight, as I usually do while she drifts off to sleep, she looked at me and asked in a tired but inquisitive voice, “Were you born with Parkinson’s”. “Well, it’s a little complicated…” I began. This is just one of many questions I’ve fielded from my girls over the years. “Does your medicine make you feel better?” “How can you swallow so many pills?” “Mama, why are you limping? Did you hurt your foot? ” “Why can’t they find something to make you better?” And my favorite “If I hold your hand forever, will it stop shaking?”

I still marvel at the matter-of-fact nature of the conversations we have about Parkinson’s and the comfortable manner in which our girls discuss this disease. It’s exactly the way I had hoped my Parkinson’s would be perceived by my daughters – as a part of life’s challenges that can be dealt with, not as a frightening life stressor. Children these days are having enough difficulty navigating the world, dealing with school, peer groups, hormones and so on and the last thing I ever wanted was to add to their burden.

Let’s [...] continue the story

When A Doctor Becomes A Patient

By Dr. Jennifer Kelly February 12, 2012

I was jogging one day while on a business trip in LA and collapsed during the run. Within hours, I was at the hospital at UCLA Medical Center on a gurney headed for a CT scan of my abdominal cavity. I remember telling the ER physicians that I was a doctor and recommending my own course of action. As my advice to the ER doctors went largely ignored, I realized, at that moment, that being a doctor myself really didn’t matter.

I wasn’t a doctor anymore. I was a patient.

That was almost a year ago. At the time, I recalled that The Archives of Internal Medicine had published a much-discussed study that revealed doctors might recommend different treatments for their patients than they would for themselves. They were far more likely to prescribe for patients a potentially life-saving treatment with severe side effects than they were to pick that treatment for themselves. Yes, doctors were much more willing to risk their patients’ lives than their own; they were much more willing to gamble with their patients’ lives than their own.

Understandably, people are worried that these findings mean doctors know something they’re not telling [...] continue the story

Sleep – Is It Overrated or Am I Just Stubborn?

By Soania Mathur

Well here I am, 3:40 AM, up and out of the warmth of my bed – yet again. It’s been years of sleep issues of every sort. Sometimes it’s initial insomnia where I’ve spent countless hours staring into the darkness, reading into every shadow, tossing and turning, trying to find a comfortable position, trying not to wake my husband, trying not to look at the clock which seems to mock my difficulty. Other nights I do fall asleep, either because I haven’t truly slept in literally days or because I’ve given in and actually taken yet another pill, this one designed to make me sleep for a few precious hours. I don’t often do this, mostly due to my own stubbornness, the desire to will my body to do what it’s supposed to do without the need for something outside of me to do the job. This obstinate stand usually frustrates my husband and my oldest daughter whose plea “Mama, what’s one more pill especially if it helps?” makes complete logical sense. Yet to me that one little pill (or the three it takes now) represents yet another way this disease has taken away my ability to control [...] continue the story