Dec 102013
 
warrior

I love participating in the annual Walks to End Alzheimer’s, but let’s face it – walking can be boring. For my first Walk to End Alzheimer’s in 2012, I raised more than $1,500. One year later, my donations netted nearly $9,000 for my local Alzheimer’s Association through a fun and creative tribute to my brother, Kevin.

Prior to the summer of 2013, my summer hobby became the campaign “Bobbleheads United to End Alzheimer’s.” I collected my own and also asked people to send me their stadium bobbleheads; for each bobblehead I received, I would in turn make a donation to my Walk effort. I was in the midst of my 2012 tour when I received the news that my brother had passed away.

Distance had unfortunately separated us for much of our adult lives, and I never had the experience of riding the rails with my brother as an adult. Kevin would travel the world seeking thrills on all kinds of roller coasters, from the modern steel hyper-coasters of today to classic “woodies” from the mid to late 20th century. At Kevin’s memorial service, the topic of coasters was discussed at length. It was at that time that I decided that in my bobblehead chasing travels, I would ride as many roller coasters as I could find along the way as a tribute to Kevin.  As fall and winter set in, a proverbial light bulb was lit. What if, in preparation for the 2013 Walk, I set out to ride as many roller coasters as I could, and see if friends and family would pledge a per-ride donation? I began planning my new summer tour and fundraising effort: “Roller Coaster Crawls to End Alzheimer’s.”

Laying Tracks

I set a goal of 100 roller coaster rides in 100 days from Memorial Day to Labor Day. I hit every theme park within a six-hour drive from Rochester NY, from the big corporate parks to the smaller, family-run parks. I purchased season passes to several theme parks, but I quickly came to the realization that this might be a costly endeavor. My friend Marian had experience in professional fundraising, and she helped me contact the smaller parks to spread my mission. She even established a great relationship with Six Flags Great Escape. Meanwhile, the pledges started rolling in. My friends stepped up to the plate, with pledges ranging from 25¢ to $2.00 per ride! I had to get over any fears I may have had, suck it up, and ride.

On each ride, my brother rode with me in spirit. In fact, Kevin’s Facebook account was still active for some time after his passing, so I was actually able to “tag” him as being with me on virtually every ride. Although this was mostly a symbolic action, there were several instances throughout my travels that I know he was with me… if not physically, spiritually.

Media Attention

As the tour began to pick up speed, Marian and I had reached out to media in the cities I would be visiting. A local news outlet expressed interest in my mission, and reporter Seth Voorhees and I spent much of the day filming my rides and talking about my brother, his plight and the scourge that is Alzheimer’s. The 2 ½ minute piece they aired was a hit! Calls began coming in with new pledges and well wishes. The story caught the eye of Sal Fantauzzo, founder of Salvatore’s Old Fashioned Pizzeria, a large chain of pizzerias in the greater Rochester region. Sal was so touched by the story that he offered to match all of my pledges at the end of the tour. The news story and matching donations from Salvatore’s provided a catalyst for even more growth, and I was back on the road again.

Fearless Fun

I plotted out the rest of the tour, conveniently scheduling ride #100 for August 21st on Coney Island’s “Cyclone”. This ride would be especially significant as not only would it be the ride that fulfilled my goal of 100 rides, but it was also the last coaster Kevin rode before his passing. In the end, I actually rode 122 roller coasters in as many days, including:

  • Seabreeze Amusement Park on the shores of Lake Ontario in Rochester
  • Six Flags New England on Memorial Day weekend
  • Waldameer Park in Erie, PA. When people ask “What was your favorite roller coaster of the tour?” I immediately respond: “Ravine Flyer II at Waldameer Park.”
  • Rye Playland, Knoebel’s Amusement Park, DelGrosso’s, Six Flags Great Adventure
  • Lakemont Park, a small amusement park with the prestige of having the “Oldest Operating Roller Coaster in the World”, Leap the Dips, a landmark dating back to 1902
  • Lake Compounce and Quassy Amusement Park
  • Morey’s Piers in the Wildwoods, NJ, boasting three ocean side piers of entertainment
  • Sylvan Beach, where I enjoyed the “Galaxi”  for ride #95

Hershey Park is where I had the strongest feeling that Kevin was accompanying me on the tour. He was passionate about the Grateful Dead, so it seemed like more than coincidence that the music in the park that day was Jerry Garcia material seemingly direct from his collection.

The Cause

My pledges were all based on the “honor system”; I cannot tell you how impressed I am with my donors for their willingness to fulfill their pledges. Some apologized for not contributing “enough” due to their particular situations. I assured these folks that any amount would be appreciated by those facing Alzheimer’s.

This cause is passionately burned into my personality now. I don’t think that I shall ever stop raising funds and awareness for this cause. The things I’ve learned, the people I’ve met and the places I’ve seen are easily the best things I’ve ever done in my 52 years on this earth. But I still miss my brother. A lot…

What Next?

How about a 16-hour roller coaster marathon for Alzheimer’s Association The Longest Day on  June 21, 2014? Sure… why not? Two of my planned stops are Cedar Point in Ohio and Six Flags Great America in Illinois for the new coaster “Goliath”!

Did you Walk to End Alzheimer’s in 2013? Leave a comment about your experience and why you Walk – or ride, like Michael!

About the blog author: Michael joined more than 400,000 others by Walking to End Alzheimer’s in 2013. He walked in memory of his brother Kevin J. Moran who succumbed to early on-set Alzheimer’s at age 54 after a three-year battle with the disease. A card-carrying ACE (American Coaster Enthusiasts) member, fun-loving Kevin traveled the world riding new and vintage rollercoasters, and Michael followed suit. Share your stories from the 2013 Walk season on Facebook and Twitter and on ALZConnected.

 

May 092011
 

I hate Bingo.

There, I said it. That popular activity which people of all ages enjoy at local fire halls, senior living communities and kindergarten classrooms across the country is one of my least favorite ways to pass the time.

As a former assisted living activities director, I can tell you that — in my book — the only thing worse than playing Bingo is calling Bingo. Round and round the cage would spin, as I strained to keep my eyes open so that I might read aloud each numbered/lettered ball that rolled down the ramp. (I’m sure it didn’t help that Bingo was usually scheduled at the peak of the midday slump, around 3 p.m.)

Yes, I enjoyed seeing the residents get excited about winning, or fighting about what constitutes postage stamp Bingo, but as I recall, many of them looked as bored as I was.

Here’s the thing: If you didn’t enjoy Bingo when you were a kid, you probably won’t enjoy it as an adult.

Besides, there are so many other fascinating hobbies and engaging activities that it just doesn’t seem fair to resort to Bingo all the time. Yet I would venture to guess that if you were to compare activity calendars for five assisted living facilities in your town, they would all list Bingo at least once.

And what does Bingo have to do with Alzheimer’s, you ask?

Bingo is an activity. Love it or hate it, it’s an activity that some people enjoy whether they have Alzheimer’s or not.  True, Alzheimer’s may limit full enjoyment of the game, but just because a person is diagnosed with Alzheimer’s doesn’t automatically negate all previous interests.

And in the case of interests, hobbies and activity preferences, an Alzheimer’s diagnosis means nothing.

Unfortunately, too many family/professional caregivers feel that an Alzheimer’s diagnosis means everything when it comes to activities, but it doesn’t. Certainly the way the afflicted individuals engage in these activities may change for any number of reasons (medication side effects, lack of sleep, difficulty with language or motor skills, etc.), but the person in your care has not lost all of his or her history or identity. If your Mom enjoyed gardening all her life, why would a diagnosis change that? If Granddad loved watching the World Series and has fond memories of doing so every year since the age of 5, why should he stop?

Alzheimer’s Is About Adaptation

Those living with cognitive impairments — and their caregivers — are constantly adapting to the changes wrought by the disease. Sometimes, those adaptations are subtly applied and integrated into the daily routine; other times, a drastic adjustment is required of both parties. Nevertheless, adaptation is a regular, recurring part of a life with Alzheimer’s.

When planning for and providing meaningful, stimulating activities for those with Alzheimer’s and related dementias, consult the individual’s personal history for clues about favorite pastimes, and use these as the foundation for program/daily routine design. If and when it is necessary, adapt these activities to fit within the framework of the individual’s abilities. Maybe your mom loves to hike but the risk of wandering is too great. Figure out a way that allows her to hike safely without feeling like she’s a child who can’t be trusted. Find a respectful balance that promotes independence while ensuring her well-being.

If your brother enjoys taking beautiful photographs of the birds that come to his backyard feeders, there is no need to let the Alzheimer’s diagnosis take that away too. You may need to help him develop film, you may not. You may need to remind him where the camera is stored when not in use, you may not. Don’t change a thing unless you have to.

Unfortunately, this method is not 100 percent foolproof. Sometimes, the whims of Alzheimer’s disease prevail, wreaking havoc on an individual’s personality/mood, which might mean they lose interest in things that they had enjoyed previously. If the safety of the individual is at risk by participating in certain hobbies or routines, you may need to discontinue or alter them accordingly. My grandfather, an expert woodworker, was bedbound as a result of his Alzheimer’s, so getting him down to tinker in his workshop was not an option. In other cases, the person can be so depressed about their inabilities that they are paralyzed with frustration when they cannot do what they did so easily before. Be sensitive to this possibility, and don’t push your loved one — or yourself — to continue in a particular hobby if it only brings agitation.

Resources for Activity Planning

There are a wealth of articles and resources out there about meaningful, stimulating activity ideas for those with Alzheimer’s/related dementias. Some are better than others, but if you ask me, it all comes to back this idea of identity, to the fact that the person in your care is still an avid reader, classical music lover, golf aficionado, etc. despite the devastating diagnosis.

Storytelling/journaling, art therapy, pet therapy, intergenerational programs, reminiscing, household chores, baking, gardening, music, dancing, exercise, photography — the list goes on.

Explore the possibilities at these links if you’re at a loss, but only after you’ve asked the person in your care what they would like to do first:

1. Activities for People with Alzheimer’s

2. 101 Activities for Kids To Do with a Loved One with Alzheimer’s

3. 50 Activity Ideas for Someone with Alzheimer’s

4. Adapting Activities for People with Alzheimer’s

5. Activities for People with Alzheimer’s from AARP

What I would offer is this: Alzheimer’s has already complicated things in your life. Don’t make activity planning harder than it has to be. Adapt the activities that you/the person with Alzheimer’s has always enjoyed, and go from there. If you follow this rule-of-thumb, you have, by default, selected an activity that is both meaningful and stimulating, and the simple act of providing this activity can be a real source of comfort (to all parties involved) in the chaos that is Alzheimer’s disease.

Today’s guest post comes from SeniorsforLiving.com’s Michelle Seitzer. Before becoming a full-time freelance writer, Michelle spent 10 years in the senior living and advocacy world, serving in various roles at assisted living communities throughout Pennsylvania and Maryland, and leading the charge against Alzheimer’s as a public policy coordinator for the Pennsylvania chapters of the Alzheimer’s Association. She has blogged for SeniorsforLiving.com since November 2008 and currently resides in York, Pennsylvania, with her teacher husband and two Boston Terriers.

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