Monday, February 10, 2014

Let's celebrate what we still have and not what we have lost forever.

Dear all of you,
So much to write about since my last post. So many new thoughts and tips, encounters and discussions.
Our visit to Shriners Hospital went as smoothly as can be with our Zoé being a real trooper. We were there a good two hours during the test and then had lunch at the cafeteria. Not my kind of restaurant, but well, Zoé wanted it. We then stayed and played in the Hospital "play room", which is a tough place to be, surrounded by children that are sick and in there for the long run, covered in special gauze, much of them burnt victims.
The test results will be analyzed by an orthopedist who will let us know whether she's improved since our last Body Motion Analysis.

After our trip to Sacramento came mine, at UC Davis Medical Center where I underwent the second round of tests looking at my skeleton, muscle strength, breathing, running, running up stairs, fast-walking, you name it, the whole gamut of exercises. What was nice was to go there with Julie and to have the moral support of family. The support system is essential especially when you suffer from a chronic illness that has no cure.

The most incredible news about our last month was the symposium on Myotonic Dystrophy held at Stanford Hospital.
A bomb.
To be surrounded by people who remind you of why you are there, who share your grief and pain, who treasure the same hopes and dreams of one day finding a cure.

The panel of doctors was impressive, two neurologists ( our favorite one, Dr. Day) one from U.C. Irvine, a cardiologist, a gastroenterologist, a sleep doctor, and last but not least, the geneticist from U.C. Santa Cruz, who is exploring the unknown, the unfathomable realm of the cells that make our body.

The morning session about genetics and sleep, cardiac arythmeia, followed by discussion on the "gut"and bowel movements was followed by two sessions on adults living with MMD and caregivers dealing with kids and MMD.
We met so many incredible people, some willing to share their trauma and depression, others without gall bladders and with pacemakers, mothers of 3 with 2 suffering from MMD and autism spectrum disorder. Grandparents caring for grandchildren for the mothers are often to compromised to help themselves.
It is all so painful, and yet you end up putting everything into perspective. Remember the motto: " don't sweat the small stuff", but I will add, "don't sugarcoat it either!" Yes, it sucks, but when people tell you, "I don't know how you do it", well let me tell you, you "just do it" and it's not a Nike ad. It's one hell of an emotional roller coaster, day in, day out.
Now I have learned new things: early menopause, thinning or balding hair, eyelids drooping, might  and may be not new symptoms. But let's not dwell on that.

Let's celebrate what we still have and not what we have lost forever.