Unseen Battles: Mary Lou Falcone’s Journey of Love, Loss, and Raising Awareness for Lewy Body Dementia
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- November 6, 2024
Mary Lou Falcone, a trailblazing author and advocate for Lewy body dementia (LBD) awareness, shares her experience after her husband, the acclaimed artist Nicky Zann, was diagnosed with LBD in 2019. Her profound journey through love, loss, and caregiving led to her writing the poignant memoir ‘I Didn’t See It Coming: Scenes of Love, Loss, and Lewy Body Dementia’. Join us as she opens up about the complexities of this often misunderstood disease, her personal crusade for LBD awareness, and her mission to support others walking a similar path.
What is Lewy body dementia (LBD) and what are the symptoms?
While symptoms vary making LBD a very hard disease to accurately diagnosis, early symptoms include:
- hallucinations and/or delusions,
- cognitive fluctuations
- changes in movement
- behavioral shifts
- REM sleep disorder.
What made you a crusader for LBD awareness?
When my beloved husband, artist Nicky Zann, was diagnosed with LBD in 2019, it was very difficult for me to get my questions answered, much less to find help. The neurologist, while brilliant at diagnosis, was of zero help when it came to answering my questions. Through our friend, the actor David Hyde Pierce, I found CaringKind, a wonderful organization with a myriad of helpful free services for caregivers dealing primarily with Alzheimer’s disease and related dementia, who in turn introduced me to Norma Loeb, Founder and Executive Director of the Lewy Body Dementia Resource Center (https://lewybodyresourcecenter.org/). Norma and the support groups of the LBDRC became my lifeline. I vowed that at the end of my LBD journey with Nicky, I would give back and help other caregivers know that they are not alone. This I have done by writing a book, I DIDN’T SEE IT COMING: Scenes of Love, Loss, and Lewy Body Dementia, and becoming an executive producer on a documentary film about LBD, FACING the WIND, following real people in real time who are affected by the disease.
How is it that LBD, while the second most progressive form of dementia after Alzheimer’s, is so little known by the general population?
Awareness, awareness, awareness…we clearly need to keep working on this. The most famous name connected with LBD is Robin Williams, and yet even he didn’t know what he had. He was misdiagnosed. It was in autopsy that they found his brain riddled with rouge proteins, alpha synucleins, known as Lewy bodies.
It’s also fair to say that when you have seen one case of LBD, you have seen ONE case of LBD, meaning that it’s not a one size fits all disease making it very hard to accurately diagnose.
With all that said, we need to constantly work to bring awareness to this form of dementia. The numbers are large: over 1.4 million people in the US and 11 million people worldwide have this disease…and these numbers are old and under reported! Once again, it’s awareness that will bring LBD to the forefront so that the dollars for research can grow until there is a cure!
Can you have more than one type of dementia at the same time?
Yes, unfortunately you can. It’s called co-morbidity. Currently published stats from autopsy reports state that in 40% of Alzheimer’s brains autopsied, LBD was found along with Alzheimer’s disease. A few top researchers in the medical field claim that the number far exceeds that percentage and could be as high as 60 – 80%.
Why is the burden for caregivers so difficult with LBD?
It’s my opinion that the burden for caregivers dealing with LBD is made more difficult because of the fluctuations, along with the presence of Parkinsonism in approximately 80% of those diagnosed with LBD. In our case, my husband Nicky was diagnosed right out of the gate with Lewy body dementia with Parkinsonian aspects. The neurologist determined this via a general cognitive test, watching Nicky walk (definitely a right leg drag), and then following up with a DaTscan and a REM sleep test. All of this supported the diagnosis.
The most heartbreaking and alternately falsely hopeful factor is that you see your loved one perfectly himself one minute, and then the next minute, or hour or day, he is whisked away, not even recognizing who you are. Then, he reappears, totally intact. These are the cognitive fluctuations to which I referred earlier. I call it the roller coaster ride and it’s heartbreaking.
To all of this, you add not only the cognitive decline with fluctuations, but the physical decline as well. In our case it included elements like no strength in his hands, making it impossible to open things or cut meat or button a shirt; to eventually not being able to walk, with incontinence issues thrown in for good measure. And this is just a snapshot.
How do you handle behavioural issues?
With calm, grace, dignity…much easier said than done, and truth be known, sometimes impossible!
It’s my belief that kindness and maintaining dignity are paramount. People with dementia in general need to know that they are loved, protected, and safe!…with the greatest of these being love. It takes a monument of patience, which is very hard to maintain day in and day out. I guarantee that you, as the caregiver, are going to lose it from time to time, no matter how loving and patient you are. When that happens, take yourself into a quiet place where you have a pillow ready, and SCREAM the f… word into it. It works wonders to release the tension. Then take a lavender sachet or bar of lavender soap and inhale. It really works to calm. You are then ready to face the next challenge. But please make sure your loved one cannot hear you. While people with dementia cannot always express themselves, they feel deeply and pick up on your energy, anger, tension or sadness…so it’s important to release your own toxins so that you don’t share them with your loved one.
No one likes to be told what to do 24/7, and people with LBD are no exception. And so, I recommend that you allow a person with LBD to have his way as long as it’s not dangerous. Try not to always correct or argue…what does it matter if the table cloth is purple and the person with LBD says it’s red! This can be annoying and sometimes inconvenient for you, the caregiver, but try to put yourself in his shoes for just one minute…I think you get my point.
How can family and friends support a caregiver? Do you have any top tips?
Early on, it’s important to have the discussion with your loved one about letting people know what’s going on. NO ONE would ever ask for this, so there is no shame in having the disease. Nicky and I, together, determined that we would let our friends and family know.
When I knew we were going to see friends (and please, be sure it is in very small groups – no more than two other people at a time if possible), I would call in advance to tell them about what was happening, what to expect, and then give a brief tutorial in how best to handle the situations which might arise. Our friends and family were grateful to have the information and the road map to follow. And be sure that the gatherings do not go on too long.
Also, the caregiver needs moments of respite. Don’t be afraid to ask a friend or family member if they might come over for an hour or two, perhaps take the person with LBD to lunch or for a walk or just stay for a chat. Most people will be happy to help, but every once in a while, there will be someone who stays away. When that happens, it can be difficult to accept, and I had to learn it’s because that person cannot cope.
There is one last note that I want to add to all caregivers: YOU ARE NOT ALONE! It can often feel very lonely and isolated, but there are people ready and happy to help, and there are support groups that are invaluable. Don’t be afraid to ask for help…everyone needs it!
