In Sickness And In Health…

In sickness and in health… regardless of religion or cultural background, this vow usually makes its way into most wedding ceremonies. But how many of us in our relative youth at that time, actually truly understand what those words mean. “In health” is the easy part of course but what happens when unexpectedly some sort of chronic, serious illness decides to intrude on your perfect union?

That’s exactly what my husband Arun and I faced over fourteen years ago. We were married just five years when my symptoms began. And despite my desire to hide my head in the sand, he’s the one who encouraged me not to ignore the tremor. He was the one I ran to, my eyes full of angry tears, after the first neurologist had the gall to tell me he felt I had young onset Parkinson’s. He sat holding my hand when months later the second well-renowned movement disorder specialist confirmed this life sentence despite my desire to be absolved from the initial diagnosis.

He listened to what my physicians were recommending and took care of the practical side of things when all I heard were words and nothing was registering. And he was the one who [...] continue the story

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

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

Cancer Can’t LOVE Like This

Cancer Survivor: Daniel Stolfi Diagnosis: Non-Hodgkin’s lymphoma Date of Treatment – March 2008-March 2010 Relation: Girlfriend

I don’t know how to put this. Long story short – I found out Daniel was sick a month into his treatment. I was devastated. It took me days to call him and then I finally manned up to it. Once we talked, our relationship blossomed over time. Dan and I know each other from theatre school (2002). Daniel’s illness shook our group of friends from University greatly. All were incredibly supportive and loving, but there was something inside my heart that wanted to be by his side. To this day, I have no idea what it was, but now he’s my love and I’m so blessed to have him – everyday.

I spent two years being a part of something very scary, sad and painful. It was hard to watch someone be so sick. I felt helpless and unsure of what to do at times. I questioned his illness, I cried a lot, I was frustrated, and I wanted answers. It brings tears to my eyes to remember how hard it was to know that I couldn’t really do anything to take the pain away.

 

Then, I finally realized [...] continue the story

How Patrick Swayze died: Why we should care

By Barron H. Lerner, MD

When I finished my book on famous patients, the most common question I received was “Are the stories of sick celebrities really relevant to other patients?” My answer was that yes, with some caveats, these experiences are well-worth knowing.

The same can be said for the story of Patrick Swayze’s terminal pancreatic cancer, which has now been told by his widow, actress Lisa Niemi Swayze, in a new book, “Worth Fighting For: Love, Loss and Moving Forward.” Patrick Swayze, a dancer and actor best known for his roles in the films “Dirty Dancing” and “Ghost,” was diagnosed in January 2008 and died of the disease in September 2009 at the age of 57. He was originally told he would live only a few months.

First, the caveats. Like most celebrities, Swayze had the means, as his wife says, to “think outside the box.” He enrolled in a clinical trial at Stanford University, traveling regularly to Palo Alto from Los Angeles for experimental chemotherapy. Swayze also was a VIP patient, getting first-class attention from top doctors and hospital staffs. Most patients experience greater hurdles.

Nor should pancreatic cancer patients who read “Worth Fighting For” assume that they, like Swayze, can [...] continue the story

About Us

Patient Commando creates social impact by providing platforms that amplify the patient voice.

Read More…

Our Team

Come meet the people who make up our dynamic Team.

Read more…