I have just read a post about another fallen PSP warrior. 'He has stood down as his duty - done.' It deeply saddens me. Saddens... yes, because he or she is not the first, nor will they be the last to be claimed by a disease that makes no distinction between gender, race, religion, social status - rich, poor or the marginalized. PSP-CBD will turn your life upside down and test your limits in all matters. Patients, family, friends and other loved ones will learn a new phrase -'Anticipatory Grief' and discover all the unwanted baggage that comes with the disease. Still, knowing all this, along with any amount of preparation, it will not make it any easier for their last and final season of life.
This will not change until a treatment or better yet, we find a cure. This involves research, but to facilitate research, we (PSP-CBD stakeholders) need to work as a collective to raise disease awareness. Let's get the attention of the medical community, pharma and government at all levels. How many of us have had to educate the medical professionals we deal with about PSP-CBD? Most, if not all, of us. We need to step out and away from the sidelines and board the Awareness/Advocacy Train if we are to affect change. Change that only comes from understanding, research, government funding programs, community support and more. PSP-CBD awareness is at the very core of The Ice Cream Challenge - a very simple way to raise disease awareness and enjoy it while doing so. The first survivor of PSP-CBD is out there. Now, go have some ice cream and be sure to post a picture. And, oh yes, share the Ice Cream Challenge with your family and friends in high or low places because every one loves ice cream.