But isn’t FTD a flower delivery service?

We don’t enjoy being the bearer of bad news, but FTD is also a progressive, neurological disease that causes major deterioration to the frontal and temporal lobes of the brain. FTD or Frontotemporal Dementia/Degeneration can affect behavior, personality, language and movement.

If this sounds completely overwhelming, take a deep breath and pause. We’ve got you.

FAST FACTS

Unlike other dementias, it strikes young.

FTD strikes early - usually between 45-60 years old.

There is no stopping it + only one way to truly diagnose it.

A confirmed case of FTD is only guaranteed with a brain autopsy. (You can read Rachael’s Blog on her decision to donate her fathers brain here.) Once the brain begins to atrophy, the deterioration continues and currently, there is no cure/medical intervention that can reverse it.

It presents in many different ways.

FTD has different variants and therefore will look different for each person. Big changes in personality, speech issues and gait struggles are normally the first signs to present themselves.

There are many different behaviors and changes to manage, and we’ve been there and are here to help.

There is a genetic component to FTD.

FTD can be inherited. About 10–20% of all cases of FTD is considered genetic FTD. Genetic FTD is due to a single gene change or variant, known as an illness-causing gene mutation. The majority of genetic FTD is caused by an illness-causing mutation in one of three genes: C9ORF72, MAPT or GRN (via UCSF).

QUICK OPINIONS

Misdiagnosis is common and can happen more than once.

Using your time being caught up with the “how could they miss this?” outlook won’t make this diagnosis go away. A lot of people haven’t heard of this and some people believe it’s still a flower delivery service. Move with grace.

Find your people and create your village.

You’ll want to gather and love on as many people as possible during your journey. Everyone from general practitioner to elder law attorney to a friend you can call at 2am and cry with. Start doing this SOON. (Like now).

Reach out.

We have experience, we have a gigantic network, we have advice and we are here. always.

Connect with us now.

Where are you?

Below are three different areas that exist in the FTD. These thoughtfully curated rooms are filled with helpful hints, education, resources and connection. We are here, every step of the way.

NEWLY DIAGNOSED is live!

(Still working hard on the rest! Check back soon… )