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

Defying the Odds – Living with ALS

The Robertsons share their experiences living with ALS and how their support systems help them. Thank you to the Robertsons, for all you do in the ALS community, and to Kyle and Matt for filming/creating this video.

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

Assumptions and the School of Cancer

Assumptions and the School of Cancer By: MsInterpretation October 11, 2011

As with many living with a chronic, terminal or unresolved health issue, I’ve become a student of my condition. I’ve found, in the course of my schooling, that Assumptions abound.

Diagnosis and the assumption: I felt in pre-school when my doctor said, in gentle tones: “You have DCIS: Ductal carcinoma in situ.” She handed me the lab report, and wrote down a website, instructing: “Only look at this particular information, The rest will just freak you out.” Providing specifics of a website seems responsible, recognizes the power of the internet, and is in keeping with the principles of Participatory Medicine.

I remember none of this. I know it happened, because I have the paper to prove it. What I do remember is that I understood DCIS to be exactly the opposite of what it meant. What I understood from DCIS was, “Cancer’s in my ducts. That’s the same as lymph nodes. That’s bad. In situ. That must mean it’s inoperable. I have to prepare myself for death. And I also need to prepare my family.” I left the office a dead woman.

It was a friend (diagnosed with DCIS more than a decade before) who described [...] continue the story

Talking to Children about Cancer

In this moving clip, Jill Ellen Snow, wife of the late Tony Snow, President George W. Bush’s press secretary who died at a young age from colon cancer, Liz Scott, mother of Alex’s Lemonade Stand founder Alex Scott; and Jai Pausch, wife of the late Randy Pausch, acclaimed Carnegie Mellon professor and author of internationally best-selling book, The Last Lecture, tell stories of talking to their children about cancer to ABC news veteran and cancer survivor Sam Donaldson during a roundtable at the National Comprehensive Cancer Network (NCCN) 16th Annual Conference in March 2011.

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