It’s the 9th Jahrzeit (annual anniversary) of my Mom’s passing away at age 76 from MSA (multiple system atrophy). There is a lot I can and probably should write about this but there’s no way back once you get MSA. My Mom was clear of mind but almost unable to speak properly towards the end and that was the hardest part I guess. A year later, in 2001, I was kicking around an idea, with Dr. Nir Giladi at the Movement Disorder Clinic at Ichilov, of creating a community for care givers, patients and doctors in order to provide a support system that would integrate the transitions of care between the different specialists. As Tim Rothwell from Sanofi-Aventis speaking about transition of care issues – candidly observed:
For those who have family members or friends who have experienced repeated encounters with the healthcare system, the only consistent thing they believe it delivers is confusion and, sometimes, flawed outcomes.’
We actually got as far as submitting a NIH-style grant proposal to the Michael J Fox Foundation for Parkinsons Research for a networked Palm-based device for sharing data collected by care-givers in order to provide a single source of data for the multiple doctors involved in care of MSA patients. We thought it might be a good way to get past the ego and technical challenges in transition of care. After we didn’t get funding – I moved on – by that time it was the previous hi-tech downturn and my mind was on other things I guess.
Therefore – it was gratifying (frustrating? 🙂 for me to recently discover Patients Like Me which is precisely the community for care-givers, doctors and patients we needed 9 years ago. Great work guys!