Despite having to make many unforeseen changes in life in the past few weeks and a brutal narrowing of my world as I transition to life with PSP, I have been giving thought to how I can continue to give meaning to my life and add value to the society I live in.
The solution I have chosen is a pretty obvious one, and I hope that I have the time and capability to make some sort of difference.
In memory of the late Professor Nir Giladi (who I wrote about in this tribute https://blogs.timesofisrael.com/professor-nir-giladi-obm-my-personal-tribute/), I have decided to do what I can to try to make a difference for future PSP patients in my own country.
Like many serious health conditions, and due to the inevitable strain on a national health system, there is clearly a lack of support for the PSP community in the country. There are, after all, only a small number of patients. These patients (probably around 500-600) are surrounded by families, friends, and loved ones who are also facing the same lack of support.
During our ‘suspected PSP’ diagnosis two weeks ago, we were faced with learning an entirely new life and future without being given any support or information. No magic safety net kicked in. This leaves us hostage to the Google and ChatGPT research which is so scary and for many in a language they are not familiar with.
I can’t change that, but I have decided to try to help. Speaking with senior neurologists/Parkinson’s specialists at the two hospitals I have been treated at, I am going to start raising awareness of PSP and set two initial objectives for fundraising to:
- Provide much-needed resources for PSP patients and caregivers (tailored to the local market and language), hopefully leveraging information that already exists and utilizing translation services/tools.
- Start to address the lack of local PSP research in Israel by helping to create a registry to facilitate clinical trials for PSP in Israel.
Many details are being worked out, and I am not ready to launch the initiative. Over the coming weeks, I will work with the TLVMC, Shaarei Tzedek and hopefully others willing, to set up the infrastructure, and it may possibly change slightly, but I wanted to signal the intent and create a little energy around it, not least to push me on.
I must rest and avoid stress, and that is why I am scaling back. This will not replace it, and for that reason, my involvement will be limited, and the administration will be done by the hospitals, which are built for this. I am staying away from all politics and keeping it simple, but I believe that my diagnosis of PSP is actually an opportunity to make a difference in a very specific area in which not enough light gets shone. I also want to have the chance to honor the memory of Prof Giladi.
I pray and hope that I get the chance to make a difference and that I have the time to see it through to some level of achievement, and I thank anyone that helps me in the process.
