With ALZ my Heart
"Having a recognized purpose in life, instills you with the drive to pursue and accomplish things. The benefit is living life, not just existing." - Brian
The reason for the title of this post being Part 1 is that today was the launch of a national media campaign by PhRMA (the Pharmaceutical Association's trade organization). They flew me to Boston for a couple of days to shoot video and photography to be used to make tv commercials, digital ads, and print media. So today the began rolling out just some of the digital (social media) ads. A few weeks back they posted some little teaser tweets and Facebook ads, but today's launch showed a one-minute long video clip. They also updated the GoBoldly.com website you see above.
I've been waiting patiently for this to start. The wonderful people at PhRMA who have been working with me on all this, have been putting up with me this whole time, and I'm sure they are glad to have launched, just to keep me busy.
The purpose of this campaign according to PhRMA is: 'Together' features the stories of researchers who are driving cutting-edge advances in science alongside patients benefitting from this innovation. The part I like to talk about when asked about this media campaign is how important the pharmaceutical companies and research scientist are to finding both treatments and a cure. Many people don't think about it, but cancer cures and treatments came from research! Where else is it going to come from? Another thing people don't realize is that researchers are not robots in far away laboratories. They are people who are sons and daughters, husbands and wives, mothers and fathers. They grew up in our neighborhoods and schools and universities. They are us. They are the tip of the spear on our side, on our team.
Recently two different research scientist connected with me. One by social media and the other through their personal donation to my team's The Longest Day fundraiser website. Neither knows the other. One said she was inspired by my story to take part in a multi-year research study about Alzheimer's. The other read my story and was moved to make a donation. That moves them up my list towards the top... of people who I am so impressed with and count as on my team!
What a busy morning! I taped four different radio interviews back to back. Each was only about 10 minutes long, but when you have Alzheimer's/Dementia, it takes its toll on your brain. I was thoroughly up for the challenge and prepared. I even was given the opportunity by the engineer to do a practice interview using the questions I could expect to be asked. All of it went perfectly. My brain was working like a fine tuned... what's the word... uh... RACEHORSE! Um, no that's not correct. Anyway, you get the gist. I only lost my train of thought twice the whole time, and I was actually talking fast and remembering things!
When I finished with the interviews, I felt the brain numbness coming on... I continued to work on my social media interactions with my friends, who inspire me to push forward. Then I had a zoom video chat for an hour, and then I was cooked! The brain numbness began to evolve into an overwhelming brain fog. I could feel the battery was about dead and needing a recharge (nap). I finally succumbed to my easy chair and blanket, no longer being able to keep my eyes open or my brain working. It was only noon.
Had I not had Alzheimer's I would have been fine and kept on going without a hitch. But as many of you who have the disease or care for someone who has it know, there is a definite limit to how much you can focus, concentrate, talk or anything before that battery runs out. I now usually nap about twice a day due to that issue.
I have to tell you... the best part of the day wasn't the interviews or even the nap. =) The best part of the day was watching my Facebook feed with the incredible support and encouragement I was getting from friends, especially those who have been touched (slammed) by Alzheimer's or another form of dementia. All day and all night friends were sharing my posts about the launch; they were sending me messages and comments. If you are not among my Facebook friends, I need to tell you why they were so exuberant! It was not just because they knew me well and liked me. No, it was much deeper than that.
Each one of my Facebook friends them knows I am on a mission. Each one of them affected by Alzheimer's knows I am on their mission. And that together we can raise awareness about this disease, raise funds for research, change the current government system that forces you to become destitute before you get help, find better help and relief for caregivers, awaken Congress to their plight, and so much more... The love was flowing because many of them do not have a voice. They have plenty to say, but no one is listening. For some reason, a bunch of opportunities has come my way... I haven't begun to share them all yet, but every chance I get... I will be their voice.
I am amazed! The people who volunteer to be advocates for the Alzheimer's Association are a 'special breed.' You can't tell by looking at them because you can't see their hearts. If you could, you would see they beat stronger than most. This army is not for the faint of heart. To take a whole day and walk into the offices of legislators that are very busy, is bold. Then to make a presentation about how insidious a disease Alzheimer's is, and how it affects whole families is a testament to the depth of their love and character. I was so fortunate to be surrounded and loved on by them all day long. Some had been incredibly busy for weeks in preparation for this task of love. We started early, got home late and I can't wait to do it again!
I am grateful to have again spent some time with a very special man Brian Van Buren. He is on the Alzheimer's Association Early-Onset Advisory Council. They are lucky to have him. The more I get to know Brian the more I am amazed. He has spent most of his life helping others on one level or another. Brian has Early-Onset Alzheimer's, but it doesn't slow him down. From the moment I met him on stage at the Walk 2 ENDALZ to the car ride back and forth to Raleigh, he has shown kindness, support, and wisdom. Brian was one of the speakers in the Old Capital Building, sharing his incredible story.
I have to mention my team because they were... well words do not even do them justice. Wayne Durham, Fran Braun, Scott Herrick and Frank Marshall, the dream team! It was like we had been doing this together for years. We made some excellent connections and inroads with different legislators, some of whom you will hear more about soon.
I don't recall if I mentioned that I recently was appointed as an Ambassador for the Alzheimer's Association. But it gives me an opportunity to visit with different elected officials. The main person I am assigned to pursue is Republican Congressman Robert Pittenger of the 9th District here in North Carolina. Rep. Pittenger is a very experienced Member of Congress, and I look forward to meeting him soon. He has an office not far from me, and I will hopefully be meeting him coming up at the end of the month (March 29th) if not before.
After such a great experience for Advocacy Day in Raleigh, NC, I can't wait until the annual Advocacy Forum in Washington D.C. in a few weeks! It will be three days of meetings and the last day at the Capital to meet our Congressional Legislators and urge them to help.
If you are not involved with a local Alzheimer's Association chapter, try to. You will not regret it. Just go to alz.org and look to the far right on the purple stripe. Click on 'Join the Cause' or click it here. I know some reading this cannot for various reasons, but if you can...