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What is FTD w/ ALS?

What is Frontotemporal Degeneration (FTD)?

FTD is the most common form of dementia for people under age 60.

It represents a group of brain disorders caused by degeneration of the frontal and/or temporal lobes of the brain. FTD is also frequently referred to as frontotemporal dementia, frontotemporal lobar degeneration (FTLD), or Pick’s disease. FTD brings a gradual, progressive decline in behavior, language or movement, and judgement and reasoning skills, with memory usually relatively preserved.

What is ALS?

ALS, or amyotrophic lateral sclerosis, is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. A-myo-trophic comes from the Greek language. "A" means no. "Myo" refers to muscle, and "Trophic" means nourishment – "No muscle nourishment." When a muscle has no nourishment, it "atrophies" or wastes away. "Lateral" identifies the areas in a person's spinal cord where portions of the nerve cells that signal and control the muscles are located. As this area degenerates, it leads to scarring or hardening ("sclerosis") in the region.

Motor neurons reach from the brain to the spinal cord and from the spinal cord to the muscles throughout the body. The progressive degeneration of the motor neurons in ALS eventually leads to their demise. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, people may lose the ability to speak, eat, move and breathe. 

FTD w/ ALS sufferers have both FTD & ALS. 


How does FTD differ from Alzheimer’s disease?

1)

Different symptoms. 

As explained above, FTD brings a gradual, progressive decline in behavior, language or movement, with memory usually relatively preserved.


2)

It typically strikes younger.

Although age of onset ranges from 21 to 80, the majority of FTD cases occur between 45 and 64. Therefore, FTD has a substantially greater impact on work, family, and the economic burden faced by families than Alzheimer’s.

3)

It is less common and still far less known.

FTD’s estimated U.S. prevalence is around 60,000 cases (Knopman 2011, CurePSP), and many in the medical community remain unfamiliar with it. FTD is frequently misdiagnosed as Alzheimer’s, depression, Parkinson’s disease, or a psychiatric condition. On average, it currently takes 3.6 years to get an accurate diagnosis.


How does FTD progress?

The progression of symptoms – in behavior, language, and/or movement – varies by individual, but FTD brings an inevitable decline in functioning. The length of progression varies from 2 to over 20 years.

As the disease progresses, the person affected may experience increasing difficulty in planning or organizing activities. They may behave inappropriately in social or work settings, and have trouble communicating with others, or relating to loved ones.

Over time, FTD predisposes an individual to physical complications such as pneumonia, infection, or injury from a fall. Average life expectancy is 7 to 13 years after the start of symptoms (Onyike and Diehl-Schmid, 2013). The most common cause of death is pneumonia.

Are there options for treatment?

Today, there is no cure for FTD. Unfortunately, no current treatments slow or stop the progression of the disease. However, if you or a family member or loved one are affected, there are important steps that you can take to preserve and maximize quality of life. A growing number of interventions– not limited to medication – can help with managing FTD symptoms.