More Than Just Ice Cream

[daddyt]

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.

[JubileeRanch]

💔thank you for being you! What a testimony you are! I am so deeply saddened since Bob left planet earth 😩 some days are better than others. “Anticipatory Grief” is a perfect way to say how I have felt for almost 4 years....as much as I thought I was prepared I was not....

I think in Bobs case it was Gods Grace that allowed him to set things right before he left and he did....that brings me so much peace ♥️

I am having a memorial on the 13th of May...it’s been hard going through pictures and preparing for it. At the same time it will be hard to realize the book is closed till we are together again 😢

I love your spirit DaddyT! You just may be THAT first one that beats this evil disease!

Hugs coming your way!!!

[Mariawatters]

Hi daddyt . What is your challenge. I’m still struggling to find my way around this site 😭 but would love to join in x

[daddyt in reply to Mariawatters]

Hi Mariawatters. Welcome to the group that no one really wants to belong too, but are sure glad it's here. Most on this site are caregivers to loved ones with PSP and CBD. There are a few patients like myself with PSP and CBD, like you, according to your Bio. You can scroll through some of my more recent posts where you can read about the Ice Cream Challenge. It's the first week in May (PSP-CBD awareness month) where group(s) members are encouraged to post and share pictures of themselves, family or friends enjoying their favourite ice cream treat. #ThinkIceCreamThinkPSPCBD with the hope the Challenge will go viral and creating more awareness of PSP-CBD.

Tim

[Northstar1]

Dear Tim I love your passion x😊

[easterncedar]

PSP was on the front page of the local (capitol) newspaper recently. A woman who had been active in the community had just passed from it and the former school, now a community center, where she had worked put up signs about PSP and about her in the windows. Even after all this time, a mention of PSP always grabs my attention.

Hugs and chocolate sauce to you, Tim.

Ec

[daddyt in reply to easterncedar]

Anything PSP-CBD grabs my attention, still hard to believe we have to shout so loud.

Tim x