August 2018 Lewy Digest | Lewy Body Dementia Association LBDA

August 2018 Lewy Digest

Quote of the Month:
“Be willing to change because life won’t stay the same.” Anonymous

Greetings Lewy Family and Friends,

We are just one month away from LBDA's 15th Anniversary celebration. Keeping in line with our theme of the month, "adaptability," we wanted to share that LBDA has grown and adapted the past 15 years to meet ever changing challenges within the LBD community. Being able to adapt as a person with LBD, a care partner or a family member helps with the demands of LBD.

Spotlight Story: From Lewy Warrior to Ninja Warrior

Ken Constantine, the founder of Konstant Fitness in the heart of Fort Lauderdale, is a fitness trainer who focuses on pairing functional training with rehab, more specifically specializing with people who have health issues or ailments encouraging them to ‘keep fighting.’ Ken became a competitor on Season 10 of NBC's hit television show American Ninja Warrior (ANW). ANW is a competition-based program where its contestants not only pursue a dream of reaching the top of Mount Midoriyama for the world's most prestigious obstacle course but many competitors, like Ken, also run in honor of someone or something meaningful to them.

In March, Ken traveled to Texas for the taping of the Dallas American Ninja Warrior (ANW) qualifiers, where he ran in honor of his father who continues to fight Lewy Body Dementia; a commonality among their family to always “keep fighting.” Ken’s mission is to not only raise awareness for his father, but also others who are fighting the disease. There, in Dallas, Ken proudly wore a t-shirt that displayed the words “keep fighting” while his father was able to witness his run via an iPad; a moment that their family will, indeed, never forget.

In our interview with Ken, we got the chance to know him and his father a little bit better.

What made you decided to train for American Ninja Warrior?
"It started years ago as a bet between old college roommates. Little by little, and as I got more into it and even more pressing when my father started experiencing more signs and symptoms and really having a change of life. But when he began undergoing changes in the last 7 years, I changed my mindset and made it into a mission.”

When did you find out about your dad’s LBD and what was his life like before diagnosis?

"My dad was running his own business, which required him to travel by car to his appointments. I remember when I was in my junior year of college, my dad drove down to see me one weekend because I was going through a hard time with final exams. With no questions asked, my dad hopped in the car and drove down to see me. He picked me up so that we could grab something to eat and to walk around the mall to talk. All of a sudden, while walking, I noticed he wasn’t beside me anymore. I turned around to look back when I saw that he was about to collapse. I quickly ran over to bring him to a nearby bench to sit down. At the time, I thought it could have been his blood sugar or something closely related. Little did I know, that was the beginning of when everything started to happen. It basically changed everything and it almost seemed to happen overnight. My dad was no longer able to drive."

How has your outlook on life and the future changed since your dad was diagnosed with LBD?
"My father’s diagnosis has brought our relationship much closer and has made me a much more caring person. I place so much more value on what the true meaning of family means to me. Family is very important and I don’t take it for granted. I also started my own business venture within the fitness industry where I am humbled to have the privilege of helping others on a daily basis. All of which, keep me grounded and give me purpose."

How important is it to be adaptive when caring for a loved one with LBD?
"I believe it is very important to be adaptive in order to provide the best outcome for a loved one with LBD. Likewise, speaking to someone from the LBDA Lewy Buddy program helped me to further realize how important my father’s routine is for him to be functional and to allow him to keep a great deal of his independence."

Since your participation on the show, what can you tell us about it and how has it impacted your LBD support goal?
"Since my participation on American Ninja Warrior, I have received many messages from people contacting me to thank me for raising awareness. They have told me their stories and how they, too, have personally been affected by LBD either through a loved one who has LBD or someone close to their heart that they know. Although the disease is often misdiagnosed, it is without question, prevalent. Many families around the world have been, in some manner, affected by LBD. This is why, to me, the words “keep fighting” are so important. Together, I believe that we all have a very important part to play in the fight to find a cure. I consider myself extremely blessed to have the privilege, thus far, of being able to raise awareness for the Lewy Body Dementia Association and for my father. My mission is to continue to strive toward making a meaningful impact, whether on or off the American Ninja Warrior course. This, I promise you!”

Keep Fighting Ken!

Source: Ken Constantine; NBC’s American Ninja Warrior

Care Partner Tips: 6 Nonverbal LBD Communication Techniques that Help You Connect

Communicating with someone with LBD or other dementias can be challenging without learning a few new techniques. LBD affects the way the brain hears words, processes information and responds in conversations. 

Often, the nonverbal messages we send with our body language and facial expressions come through more clearly than the words we speak. And sometimes the nonverbal signals don’t match the words we use, which can be confusing. That’s why being aware of our nonverbal communication is such a vital communication technique.

  • Be patient and calm.
    • Keeping a positive and calm attitude can help keep the person with LBD communicate more efficiently.
    • Avoid body language that shows frustration, anger or impatience.
    • Avoid interrupting the person talking.
    • Give your full attention.

We know certain situations can be more frustrating than others, staying calm can be tough. In those cases, it's beneficial to take a breather, step away and take a moment to come back to the situation with a calm attitude.

  • Keep your voice, face, and body even and confident.
    • Have a pleasant or even look on your face- a tense facial expression could cause distress and make communication more challenging.
    • Keep your tone of voice positive and friendly.
  • Be Consistent
  • Make eye contact and respect personal space.
    • Approach them from the front so that they can see you coming
    • Don't stand too close or stand over them.
    • Keep your face at or below eye level, and this helps them feel more in control of the situation
    • Make and maintain eye contact while having a conversation.
  • Use a gentle touch to reassure.
    • Physical touch can give a great deal of comfort and reassurance but be sure to observe and assure they are comfortable with touching.
  • Pay attention to their nonverbal reactions.

LBD may make it a little difficult for the person to express themselves verbally. Be cognitive of signs of frustration, anger, or fear and adjust your responses accordingly.

Source: Daily Caring

LBDA Welcomes Emily N. Pualwan to the Board of Directors

Emily is the CEO and Executive Director of HazingPrevention.Org, a national nonprofit, and joins the board with over 30 years - experience in nonprofit management, including leadership roles at the American Cancer Society. Her expertise includes publishing, media, advocacy, and public policy in both healthcare and higher education. Ms. Pualwan has a deep personal interest in dementia research and patient advocacy and has experienced in her family the struggles that those with dementia and their caregivers face on a daily basis.

CFE Movement

With LBD Awareness Month right around the corner, hint it's this October, it is never too early to kick off your fundraising efforts in your community. All the ideas are out there, a bake-off, a golf tournament, or even a benefit concert, just to name a few. We just need your help to spread the word and take action. Contact us today to get the ball rolling!

Upcoming Events

Run For The Hills 5K: September 22, Tipton MI
5th Annual Lewy Body Dementia Walk for Awareness: September 23, in Jamison, PA
LBDA's 15th Anniversary: September 28th, in Atlanta, GA

Submit Your Stories

Want to be featured in our Digest? Submit your story on our website and we will share it on our Facebook page. 

Remember, your donation will strengthen our efforts to advance outreach, education, and research, we support those affected by Lewy body dementias, their families, and caregivers. We are dedicated to raising awareness and promoting scientific advances. Your gift makes a difference in the lives of all those affected by Lewy body dementia in your community and across the world. Thank you for your continued support.