A Journey Without a Map: Facing Frontotemporal Dementia

Popular ideas about the symptoms of dementia or Alzheimer’s conjure up images of forgetfulness, a person lost in a familiar place or unable to recognize loved ones.

Chris VanNortwick
Chris initially responded to the FTD and ALS diagnosis by jumping into light weights and swimming.

This is not what it looked like when Mary VanNortwick’s husband of 20 years, Chris, started acting strangely. “If he was going to make a tuna salad, he would go buy the tuna, come home, then go to the store for the mayo; shortly after, I would see him grabbing his keys to go get the bread.”

She didn’t necessarily conclude that anything was wrong. “It was a very elusive situation. You question yourself, the other person, wonder if you are just wound too tight.”

In fact, when she took him for testing, she simply believed Chris needed some basic training in life skills like learning how to take care of his money or why he shouldn’t take phone calls from solicitors — and why he shouldn’t urinate in the neighbor’s planter. His filters on appropriate behaviors seemed to be waning.

But her husband did not need life skills. In November 2013, he was diagnosed with frontotemporal dementia (FTD). If that wasn’t enough, another evaluation five months later revealed that he also had amyotrophic lateral sclerosis (ALS). Both FTD and ALS are neurodegenerative disorders with symptoms that tend to overlap and even accelerate one another.

Mary knew something about ALS, nothing about FTD. She started reading. The disease damages the tissue in the part of the brain that regulates impulse control, planning and judgment, emotions, speech and movement. The early symptoms of FTD show up as unusual behavior. These changes start slowly, and usually show up when people are in their 50s or early 60s. No cures or treatments exist for either condition.

Strange Behavior? Get Evaluated Now

“When you see a decline in your own or someone else’s mental ability, it’s so important not to assume it’s normal aging,” Erin Foff, MD, says. “Some causes of cognitive decline are treatable. If we don’t diagnose and address them early, even these can be irreversible.”

One Day At a Time: Dementia, Decline

Needless to say, the prognosis stunned Mary, Chris and their two daughters. “It’s just not the course you thought you were going to be on,” she says.

Yet knowing what was going on helped explain what Mary was witnessing. She saw Chris losing motor skills and depth perception. He was “walking into doorways, not picking his foot up all the way, dropping things. And then there was the perseveration, when he latches onto something and won’t let it go. Not changing a pattern or getting off a thought.”

In a moment of lucidity, Chris told his wife, “I’m going to die.”

Mary says, “What can I say? Both conditions have 2-5 year lifespans, 1-3 years with both, our care providers say. So we’re just journeying through it now, taking one day at a time.”

For Mary, this means watching the two neurological diseases wreaking havoc on her husband, whose symptoms seem to leapfrog between two conditions. “We’re starting to see decline in the cells that carry language ability. In there behind his eyes, we know there is a thought to convey, but there isn’t the vocabulary to say it, the physical ability to speak. For instance, if talking about something in the holiday category, he’ll say Easter and mean Christmas. And now with ALS it’s hard for him to speak at all.”

As the diseases progress, Chris is often not in reality, but still aware. “It’s so weird,” Mary says, trying to explain. “One day, he looked at his tongue and his hands, said his nerves felt like fireflies under his skin in his cells where ALS was taking hold.”

Since Chris can no longer be alone, Mary relies on companion care to help.

Hunger for a Roadmap

The biggest struggle for Mary has been the unpredictability of how the disease will manifest. She explains:

You’re just watching this slow progression. You try to accommodate and stay one step ahead. And then it’s some other decline. There’s nothing that can tell me what will happen. And I understand; this is just life. It’s unfolding. It comes to us this way. But I hunger for a roadmap. You can prepare for anything. But not knowing what will happen? That’s the biggest strain.

Finding Support for FTD

While support groups exist for Alzheimer’s and ALS, none exist for FTD in Central Virginia, as it is a much rarer disease.

So Mary attends a support group for dementia and Alzheimer’s. “People hear dementia and think Alzheimer’s, but it’s very different. My husband’s brain is dying, much like circuitry — flickering neurons in his brain. Circuitry is firing, firing dimly, then not firing at all. It goes on and off all day long.”

Even though the conditions don’t present the same way, Mary says enough similarities exist to make the group worth her while. “The underpinnings are common: we’re all making adjustments. Helping them still live meaningful lives in whatever capacity they can. We have to pare things down and streamline communication to be better understood.”

It was at one of these meetings that Mary got advice she finds most valuable:

A new friend said to me, ‘Your job is to keep him safe. If he’s making you crazy because he has to do something one way and only that way, it doesn’t matter if it doesn’t matter.’ This advice has saved me. Makes me able to adjust to the decline. This is maddening, frustrating, but it doesn’t matter. It’s okay. That would have robbed me of all my wellness.

UVA Neurology

And at UVA, Mary found a team she calls “amazing” and “fantastic” in their efforts to help her prepare for the challenges ahead. “Of course, they provide excellent care. But they provide equally great personal care.” She gives examples of the warm nurses and front-desk receptionist who make their visits seamless.

“And at the beginning, Dr. Ted Burns said, ‘Tell me how your husband does life.’ I said, ‘The cup runneth over. Never just half full.’ And Burns said, ‘Then let him do ALS that way. Now, how do you do it.?’ I said, ‘Batter up.’ ‘So if you need information, get it,’ Burns said. ‘Talk to people. Do this the same way you do everything.’

Self-Care

A wellness professional, Mary knows the value of taking care of herself so that she can take care of Chris. “I go to bed, I get my sleep, I walk, I eat super well. I do things I enjoy, so when I’m with him I’m with him, fully present. If you’re not well, you’re not there, and nobody wins. So I try to make it first things first.”

A go-with-the-flow approach has helped Mary manage the constantly shifting landscape of her husband’s illnesses:

It’s a challenge and source of joy: Leaving as much in place as possible until it has to be taken away. The emphasis is on the afflicted as much as the caregiver. We can’t make their world prematurely small so that we can handle it better. I believe the best adjustment is one made from both ends at the same time giving consideration to all involved, preparing for the end while savoring the journey.

The Gift of Humor

Mary, Chris and their daughters have found using humor to sometimes be the best medicine when dealing with symptoms like delayed hearing, word-processing and reaction time.

“This delay can be as much as 10-20 seconds, and it’s definitely increasing. We simply added, “Wait for it. Wait for it…”. Everyone laughs, including Chris. And there’s the misinterpretation of instruction. I’ll ask him to fill the dog’s bowl with dry food and he’ll get out the milk. Again, humor is invoked. “Really, Chris? Really?” He laughs and we start over. It’s impossible to respond with humor every time, but when we can pull it off, it never fails to make it better for everyone.”

When Mary talks about Chris, her voice lilts with respect and pride. “He lives to serve other human beings,” she says. Even now, he volunteers, and she is grateful for the people he works with. “They’re trying to keep him engaged. He’s very valued. “

On top of that, Mary tells us that when he dies, Chris wants to donate his brain to FTD research at UVA.

Mary and Chris VanNortwick seizing the moments and the days.
Frontotemporal dementia and ALS mean Mary and Chris VanNortwick live every moment to the fullest.

As for herself, Mary faces the future with an unflinching bravery that also includes helping others. “I want to start a support group for FTD,” she says. “And bring people together to talk, especially since what’s really hard is how this disease manifests differently and at a different pace for everyone.”

Mary encourages others to reach out, and continues to do so in the lives of others around her. She speaks reassuringly: “Don’t face FTD alone.”

Get Help

Read a book: Mary recommends “The 36-Hour Day” by Mace and Rabins and “Dementia” by Susan Kiser.

Find online support from the national Association for Frontotemporal Degeneration.

Learn more about UVA’s expertise with dementia and ALS.

 

Comments (9)

  1. Cheryl says:

    Mary,
    Thank you for telling us the life you and Chris are living. My dear Kenny was diagnosed with FTD when he was 49 years old. In 2006, there were no stories. It was a lonely place to be.

    Humor. Oh my gosh. It got us through so many moments.

    It will be four years since Kenny died this August. It seems like yesterday, and yet with FTD a lifetime ago.

    I wish you the best as time goes on, and again, thank you for reaching out.

    Cheryl

  2. Vickie T. Greene says:

    Dear Mary, my husband had the same diagnosis. He was officially diagnosed 2/14/14 and passed away 10/01/15. My heart aches for you and know that you are in my prayers. My husband had just turned 60. In July of 2014 I took Bill on a trip to Napa Valley for the big 60. On that trip I knew something was terribly wrong although I had noticed changes over the years. Bill was very healthy, strong and worked out all the time. He took no meds. I just thought his odd behavior was because we were getting older although my habits, etc. were not changing. I just had no idea about this disease. Love to you and your family. Vickie T. Greene

  3. Mary says:

    The responses were priceless and perfectly timed. Some days are simply harder than others. We’re in a rough patch. It would be so helpful to learn from others who have gone before me and to support those who will follow in my wake. Any chance we could create a small group meeting?

    Mary VanNortwick

  4. Rose says:

    Mary,
    My husband bill became very sick in 2000 and his MRI was abnormal. His personality continued to change and as a result of both they did a craniotomy with a biopsy. They thought he had herpes simplex encephalitis, but the biopsy was negative for that and showed some inflammatory process/inflammation. It wasn’t until many years later that I would learn that Bill had an “acquired brain injury”. As time went on things evened out for awhile but in the last 3-5 yrs., have gotten very different. He suffers from seizures and on his last hospital stay a doctor told me that I deserved some answers as to what to expect for the future. We are now on our 5th neurologist ( for different reasons) and I insisted that Bill be evaluated. I’m not sure the doc was really on board, but I can be pretty persuasive. Long story short, Bill was evaluated by a neuropsychologist.His last evaluation by a neuropsychologist was in 2000. He explained as they always do, that there was no sure way to know without doing a brain biopsy, but he believes Bill has Frontal Temporal Lobe Disorder. I can tell you that the biopsy isn’t happening 🙂 He also explained that was slightly better news then an Alzeimers diagnosis because the progression is slower. It’s been several years since my sons and I noticed another difference in Bill. Most recently my sons and I are seeing increased symptoms. In my opinion from day one and still now, “they just don’t know enough about the brain”
    I read were with FTD the patient has 6-8 yrs. My sons and I are certain that Bill is in those final years, simply because of the fast decline we have seen in a short amount of time.
    This has been difficult to say the least for all of us and I am appreciative of seeing your post.

  5. KERRY MCGREEVY says:

    IS THIS SITE STILL ACTIVE ?
    MY HUSBAND OF ALMOST 40 YRS WAS DIAGNOSED 2 YRS AGO WITH BEHAVIOR VARIANT FTD………IT AN AWFUL DISEASE AND WE ARE QUICKLY GOING THRU CAREGIVERS-UP TO 4 NOW AS I CHOSE TO WORK TO GET A BREAK AND BE A BETTER CAREGIVER WHEN HOME . I AM A VISITING RN AND WORK A FEW MORNINGS A .WEEK WE HAVE HAD HOURLY, LIVE-INS AND FRIENDS. ERRATIC BEHAVIOR SCARES MOST OF THEM.
    I WOULD LIKE TO KNOW SOME COPING TECHNIQUES-WENT TO THERAPY IN BEGINNING BUT WAS NOT TOO HELPFUL AS FTD SO RARE. I FOUND MUCH TIME SPENT EDUCATING THERAPISTS AND DRS ABOUT .IT. I FEEL VERY ALONE EXCEPT FOR A FEW VERY WONDERFUL FRIENDS . WOULD APPRECIATE ANY ADVICE-NOT GOING TO ALZHEIMERS GROUP-DID THAT WAY TOO DEPRESSING !
    MY HUSBAND IS NOW 68 i AM 66
    THANK YOU
    HAVE 3 GROWN CHILDREN IN OTHER STATES BASICALLY UNINVOLVED-GREAT IN THE BEGINNING NOW NOT

  6. Janet says:

    My husband was diagnosed in April 2014 at the age 62! We do not have a FTD support group here in south Louisiana! But I also will try and start one soon! Humor is our biggest support! I plan on taking care of Mike at home! We do not call it Dementia , we call it the “whom ba da” Cajun humor! Thanks for your story!

  7. Rachel says:

    JANET, If you read this please contact me. My name is Rachel Castellanos, a Louisiana volunteer for AFTD, and we are having our first AFTD event in the New Orleans area next month. Please email me and I will send you the details: rachel.e.castellanos@gmail.com 504-669-4674

  8. Linda Measamer says:

    Information is empowering and most helpful. I am in a support group for frontal lobe dementia. This has been a God send and very grateful for all the participants. My husband is the patient and seems to be declining gradually. We have good doctors in this area which is good! My struggle is to not look for what our future maybe but live each day with faith in the Almighty. Linda Measamer

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