First they told her she had Alzheimer’s disease. Next they suggested that the medications they had prescribed to control her anxiety and depression were the cause. Then they told her it was Parkinson’s. It was years before doctors finally figured out what was making Susan Grant’s mind slip away.

“For a long time I told my M.D. that something was different in my brain. Something was not working right,” recounts Susan. Six diagnoses, countless hours of tests, and a lot of personal money later, she was diagnosed with frontotemporal dementia (FTD)—a disease that most doctors know very little about but that affects an estimated 250,000 people in the United States.

The Disease That Is Stealing Her Pieces

Frontotemporal dementia (FTD) is a disease that involves the progressive degeneration of the brain—specifically the temporal and frontal lobes—and that gradually destroys a person’s ability to make decisions, behave appropriately, feel many emotions, communicate, learn, and even carry out life’s daily activities. As Susan’s partner and caregiver Cindy puts it, the disease “takes pieces away one at a time…her pieces are coming apart.”

There are different types of FTD and each has slightly different symptoms, but they all tend to start slowly and with small signs. Minor changes that, on their own aren’t a big deal, start to add up and point to a larger problem. Some FTD patients begin to have difficulty controlling their behavior and can become compulsive and socially inappropriate. They may discover that their reasoning and judgment skills are impaired. They may even suffer from movement disorders like tremors and muscle weakness. Most have memory problems in the later stages of the disease.

Usually within a matter of years, symptoms worsen and leave the person needing 24-hour care. Most people die within 7 years of diagnosis.

Scientists don’t know what causes FTD but believe it involves (at least in part) the accumulation of proteins in the brain that are no longer processed correctly but instead left to pile up. This in turn causes the death of surrounding cells and, as the disease progresses, parts of the brain actually start to shrink and lose function. This is why imaging tools play such an important role in diagnosing FTD since they can create a picture of the brain and show any shrinking parts. Scientists believe that FTD has a strong genetic component and many families lose multiple members to the disease.

Despite the increasing use of imaging technology, FTD is still very hard to diagnose and most doctors really don’t know much about the disease. Diagnoses can get especially complicated because symptoms often point to other diseases and conditions. The symptoms often lead to diagnoses of depression, psychiatric disorders, and other dementias. Unfortunately, many a doctor has told a patient with FTD that they’re just tired or depressed and should give it some time…”you’ll feel better soon.”

Because of the memory loss, one of the most common misdiagnoses is Alzheimer’s disease. However, there are major differences, including the fact that FTD tends to hit much earlier in life. The two diseases also impact different parts of the brain and therefore produce different symptoms. A PET (positron emission tomography) scan can distinguish the two by showing the impacted parts of the brain.

The Struggle

In her search for a diagnosis Susan saw a psychologist who estimated that she’d lost half of her IQ. She eventually quit working because she was no longer able to do the sophisticated thinking that her financial advisor job required. She continues to stay busy and use her mind as much as possible, but everyday tasks are becoming harder and she feels her mind slipping away.

Susan’s partner Cindy has stuck by her, but others are not so lucky. The behavioral changes that many FTD patients experience can drive loved ones away—especially when there is no diagnosis and no explanation for the changes.

Families are often told that they’re imagining things or that the problem must be psychological. Even once they have a diagnosis it’s still a devastating disease. FTD usually strikes in the prime of life—when patients are in the thick of their careers, raising their families, and anticipating many years ahead. It’s confusing, frustrating, and scary. As the mind slips away it also becomes a very lonely disease. Families lose their loved ones long before they are physically gone.

There is currently no cure for this horrible disease, and in most cases, it cannot be slowed.

Planning for Hope

FTD is the second most common dementia after Alzheimer’s disease and yet it is poorly understood. Susan Grant wants to see this change and is devoting herself to raising awareness of this disease. She has devoted her time, her money, and her heart to producing Planning for Hope, a documentary on FTD that aims to unveil the truth about FTD, offer hope to those affected, and “open doors of understanding” when it comes to this disease.

Improper diagnoses and delays are mistakes that can cost a patient their job, their family, and precious time. People end up taking medications they don’t need—and not taking those that they do. In Susan’s case, she believes she has slowed her mental decline by actively learning new things, using “brain game” software, and taking the right mixture of medications to treat her anxiety and depression. She has also participated in six clinical trials to help the search for a treatment or cure.

While scientists have not proven that the disease can be slowed, experts recognize the advantage of early diagnosis in planning. Making financial and caregiving plans are especially important since the disease tends to strike so early in life—long before retirement savings have built up and entitlement programs like Medicare have kicked in.

And Susan believes there is reason to hope. Scientists are learning more and more about this disease every day, and hopefully someday soon, will be able to offer a cure.

For the most part Susan feels like she has a really good life. She spends a lot of her time talking and writing with others dealing with FTD—sharing her stories and giving them hope. Producing the film also kept her going at a high pace, and she thinks, kept her symptoms at bay. Planning for Hope is in the editing and distribution phase but Susan is still working to raise the money needed for its release. To make a donation visit the Planning for Hope website.