THE ALZHEIMER’S EDITION FEBRUARY 2018
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THE ALZHEIMER’S EDITION Out of Sight, Not Out of Mind
Not always seen, the effects of Alzheimer’s continue to be heard inside and outside the minds of those affected
Dr. Nicolas Bazan
A statement of science and sentiment from the world renowned neuroscientist
Of Mind And Music
An novel and a film about living with Alzheimer’s
If Ties Could Talk
Every personal tie to Alzheimer’s comes with a story to tell
Actions Speak Louder Than Words How to support Alzheimer’s research and treatment
OUT OF SIGHT, NOT OUT OF MIND Not always seen, the effects of Alzheimer’s exist inside and outside the minds of those affected. And the individual diagnosed isn’t the only one affected. Here is a look at the effects of Alzheimer’s Disease on individuals, family members and the country.
INDIVIDUALS suffer both mental and physical effects. Mentally, what starts as trouble remembering names and faces can evolve into no memory of loved ones all together. Physically, changes experienced include: loss of balance and coordination, still muscles, trouble standing or sitting up in a chair, twitches & seizures.
CAREGIVERS & FAMILIES can be profoundly affected by the rippling effects of caring for a loved one with Alzheimer’s. Diverse and complex effects include the following: Increased Risk of Physical Illness, Diminished Emotional Well-Being, Increasing Social Isolation & Growing Financial Challenges.
In the UNITED STATES, 1 in 10 Americans over the age of 65 is living with Alzheimer’s disease is growing. An estimated 5.5 million Americans of all ages have Alzheimer’s, and this number is growing. Every 66 seconds, someone in the US develops the disease.
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DR. NICOLAS BAZAN
A statement of science and sentiment from the world renowned neuroscientist “Reflections on why I strive to understand and combat the ravaging diseases and disorders that lead to dementia and blindness… It reveals elations and frustrations that go hand in hand with brain research. The battle to conquer Alzheimer’s, Parkinson’s diseases, macular degeneration, ALS, traumatic brain injury, stroke, depression, addictions, schizophrenia is not a story of continual, everyday successes.
It is a slow journey down a complicated maze often with setbacks and unexpected twists and turns. Experiments do not always yield the results anticipated, and scientists like myself often find that we do not have the means available to solve the riddles of the mind we so desperately seek to unravel.
Yet despite the many trials we face, despite the many uncertainties we encounter, each day that passes brings us closer to understanding, and preventing and curing these debilitating diseases. We realize how critical this research is for the community. Every new bit of information uncovered adds one more piece to the puzzle, bringing the bigger picture a little more in focus and providing us with new knowledge, and renewed hope. It is this hope that I wish to share with others through the book “Una Vida: A Fable of Music and the Mind” as well as with the film “Of Mind and Music”. It has allowed me to express my thoughts and emotions that surround neuroscience research, the exploration of cellular elements and molecular switches that underlie the components of the mind and the eye. To be able to impart these views to others and to provide them with the hope and optimism that the story of Una Vida ultimately presents, that task itself is as important and rewarding as the pursuit to understand, to prevent, and to cure. Thus writing the book and the screen play of the film (with Director Richie Adams) represents a channel, an outlet, unlike technical journals, to freely express my emotions and opinions.” Dr. Nicolas Bazan 7
OF MIND AND MUSIC An novel and a film about living with Alzheimer’s
The plague of Alzheimer's disease and the emotional toll it takes on caregivers has, sadly, long been a fruitful subject for drama. But Richie Adams' Of Mind and Music is a particularly moving entry in the genre, gaining strength through its undeniable authenticity. The film is based on a novel, Una Vida, by Dr. Nicolas Bazan, a neuroscientist specializing in the subject, who also co-wrote the screenplay and executive produced. Featuring outstanding performances and making excellent use of its scenic New Orleans locations, the film handles its delicate subject matter with a deeply affecting emotional restraint. The opening scene alone will tug at the heartstrings of anyone who has experienced the illness through a loved one. Sitting quietly with his elderly mother is Dr. Alvaro Cruz (Joaquim de Almeida), who informs her that he won't be seeing her for the next few days while he attends a medical conference in Paris. She seems to understand, but a few moments later, as he's heading out the door, she asks if she'll see him tomorrow. "Yes, mama," he replies in a sad, resigned tone. "See you tomorrow." Click HERE to read the rest of The Hollywood Reporter film review by Frank Scheck. To learn more about ‘Of Mind And Music’, visit the official website: www.ofmindandmusic.com 9
IF TIES COULD TALK
Every personal tie to Alzheimer’s comes with a story to tell.
“Living with this disease is very difficult because you have a perception of who you once were and a different perception of who you are now. The difference in these two realities creates an overwhelming sense of insecurity. Insecurity changes your behavior, your mood, your plans and your dreams. You feel there is no way back to where you once were. This is what it feels like to have Alzheimer’s.” - Gary A. [ READ MORE OF GARY'S STORY ]
“At a time when I thought I would start really having fun and enjoying my life, it’s all slipping away. I can’t find words to make people explain what that does to a person. Maybe it would be better if I didn’t know, I am not sure. I tell myself to live in the moment and enjoy what I have and sometimes get stuck in the “why me” self-pity mode. It is hard. It is so painful. My mind and heart aches with sorrow. There must be answers. I can’t even bear the thought of this happening to my children and know I have to try everything I can to find a cure now. My goal is to keep sharp enough to watch my son graduate from high school in 2 1/2 years.” - Mary [ READ MORE OF MARY’S STORY ]
“I sometimes wonder: why am I willing to waste my last few good years on this fight rather than just enjoy my life in peace? I feel that I still have some great skills left that hopefully will be able to help others. While it’s too late for me, I think of all of those that don’t even know what horrible news they may receive like I once did. That shock of finding out there is no hope and I will die a horrific death. No one should have to go through that.” - Michael E. [ READ MORE OF MICHAEL’S STORY ]
“Alzheimer’s patients lack insight into their behavior and do not recognize the changes in their personality. They become very focused on their own needs, and their spouse or caregiver becomes the center of their world and greatest security. It is very important for caregivers and spouses to seek support for the challenges of their new role. Fortunately, there are many resources and support groups available to assist and encourage everyone impacted by this disease. I have learned not to be a victim in this journey. Being positive and happy makes all the difference not only in your partner’s world, but in yours as well. This is a long goodbye…. Try to make your goodbye the most positive and rewarding experience possible. My husband has been my best friend and forever love. Alzheimer’s will never take that away.” - Kimi A. [ READ MORE OF KIMI’S STORY ] 11
ACTIONS SPEAK LOUDER THAN WORDS How to support Alzheimer’s research and treatment
There are a number of organizations that provide support for those living with Alzheimer’s and their families. There are also several that are doing the necessary research required for finding a cure for this disease. Here are a few ways to give your support:
SUPPORT RESEARCH FOR THE CURE Support the LSU Neuroscience Center for Excellence ‘One Tie At A Time’ Fundraiser. Purchase ‘The Alzheimer’s Tie’. All proceeds from this Awareness Tie go to fund research conducted to find a cure for Alzheimer’s Disease. Click HERE to buy your tie.
SUPPORT POLITICAL EFFORTS The research community believes it is possible to prevent or control the disease within ten years with a disciplined strategy that is adequately funded. To succeed, we need a political strategy that ensures that elected officials and lawmakers make fighting Alzheimer’s a national priority. Click HERE to contribute to UsAgainstAlzheimer’s political efforts.
SUPPORT WITH PARTICIPATION Find a support group, start a support group or connect with others online. The Alzheimer’s Association provides a platform for connecting with others in need of support. Click HERE to learn more.
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