As this entry is written, the month is only half over, but it’s already been a very eventful month. Living with Alzheimer’s has good days and more challenging ones. But we’ve experienced greater depths and incredible highs, all within the first two weeks of the month.
On Saturday, June 1st, Marcia ran a 5k in Hillsborough. Even though the race started early (8:00 a.m.), it was a very warm and humid. I didn’t run the race, but was waiting for Marcia at the finish line. Long story short, I saw her coming down the last ¼ mile and could see she didn’t look strong. Like everything Marcia does these days, she tries so hard and is so determined. She sprinted to the finish line…. And then she nearly collapsed. One of the race marshals and I kept her upright until the paramedics arrived (less than a minute). Trip to the emergency room and a six hour stay pretty much took up the rest of the day. Like any trip to the ER, the experience was scary, but once she cooled down and drank some water, the paramedics said she would be okay. They wanted to take her to the hospital as a precaution. Most of the time in the ER was spent taking a few liters of IV fluids to make sure she was hydrated. Cat scans and stomach x-rays showed everything else was normal.
The following Friday, she had a challenging day teaching her class and seemed to have more trouble than normal with “self-care” activities that are indications that she needs to have a more frequent level of supervision. Not around the clock, but situations where I may not be around to make sure she gets dressed, take her medication and can find everything she’s looking for. While she feels teaching classes are things where she can still contribute and used to excel at, it’s clear she is struggling with some of her accountabilities. There are circumstances where her safety and the safety of her class participants are not in jeopardy. In other classes, it’s not so clear. Not teaching and more frequent supervision will be milestones that will hurt – her and me. I’ve begun looking into how we might introduce having help, either through adult day care outside the home, or occasional in home care. This is a pretty big research project as there are many options and costs to consider. With Alzheimer’s, it’s inevitable that professional care will become part of our lives. I just have to do the work now as it’s time to start introducing this before any serious incidents occur.
So on to the more positive news. On June 9th, the Branchburg Race Against Alzheimer’s (a 5k race and one mile fun run/walk) took place at White Oak Park. As I mentioned in a previous blog entry, Marcia is the inspiration for this race, which was planned and organized by one of my daughter’s friends and his mother (Mike and Judy Napoli). All week, we carefully and anxiously watched the weather reports. Heavy rain Friday and into Saturday and another heavy rain storm on Monday. In between was a perfect Sunday for the race and walk.
This day was THE MOST memorable day we’ve had since my son Ryan was born almost 13 years ago. Besides perfect weather, the attendance far exceeded our expectations for a first time event. We had over 400 registered runners and almost 200 walkers from 12 states, and raised over $50,000 for Alzheimer’s research (through Cure Alzheimer’s Fund) with donations from 22 states and 3 countries. My parents, brothers and their wives, nieces and nephews came to NJ, as did a many of my close friends from my college (Rich, Dave C, Dave F, Mark, Tony and their families), including one of my roommates (Jim) who came up from the Philadelphia area to participate in the walk -- in his wheelchair (one of the very memorable moments of the day). Also had two very close friends fly in from Denver (Dave) and South Carolina (Jen). Dave was here for the entire weekend and spent most of the day with us on Saturday. Several of my church’s youth group ran the race, and went right to church, and came back after the service.
Marcia also had two of her college friends come down from Massachusetts (Swanny) and Connecticut (Sue). We got to spend some time with them Saturday night as well as a little time with them Sunday morning. Great turnout from people we work with at Bayer, the YMCA and Healthquest too! My good friend, Stew Bishop could not come for the race due to a family wedding, but his sponsorship and commitment to support us goes beyond being a good friend. Two of his employees (Alison and Matt), whom I’ve worked with for years, flew up from Houston for the race, and 30 or so participated in a satellite race in the Woodlands, a suburb of Houston at the same time as the Branchburg race. Amazing what they put together in less than 3 month, raising another $2200 dollars for the cause!
Just as amazing, and emotionally uplifting, was the turnout from Branchburg, Somerville, Hillsborough, Bridgewater, Readington and other areas. This day was just another example of how community support for us and Alzheimer’s continues to amaze and personally humble me. Mike and Judy Napoli, and countless volunteers did a fantastic job organizing and nearly flawlessly executing a terrific event. One thing I learned about fundraising this day: A 17 year old can come up with a great way to raise awareness and money. We were told we would be fortunate to get 150 or so runners, but we had that many sign up on race day alone. Lesson? Turn an ambitious idea over to a bright, determined teenager and an organized, detail oriented mom, and get out of the way.
So many highlights I could write about. Besides the amazing turnout from friends, friends of friends, family, runners and colleagues, Marcia’s 5k finish was the most emotional moment of the day. Several of her family and friends tried to talk her out of the 5k and into the 1 mile walk. Marcia was just determined to do the run (her doctor said she could if it wasn’t too hot and she hydrate before the race). My daughter Riley ran with her, as did a couple of Marcia’s good friends. At the finish line Marcia got such an ovation from the hundreds who were waiting for her. It was such a great and memorable moment, even though she needed some assistance to cool down and hydrate. Running has always been a passion for Marcia. She’s run marathons, half marathons, countless 5k events, and all the miles required to train for these events. But it’s not safe for her to do on her own any more. Thankfully, she realizes this too and has agreed to give up road running.
This was such an amazing day for our family. It’s hard to put into words how special we felt about the turnout and the support given to us and to our dream of ending Alzheimer’s. People who have never participated in a 5k ran, people who are so busy gave up several hours of their day, and so many gave more than a few hours to planning and preparing. Some gave up an entire weekend with family, frequent flyer miles, and those that volunteered to plan and organize the race invested countless hours that could have been used on other things. This incredible turnout was because of Marcia, because of Riley and Ryan, and me. And they believe in the cause. Marcia loved everything about the day and I haven’t felt this good about anything in a long time. My only regret was not being able to spend more time with those who were there that day.
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