Face Lift for Dementia on Rare Disease Day 2013

“Planning for Hope-Living with Frontotemporal Disease” documentary

shows a rare disease striking each person differently, unlike the “stigma of the

demented.” Getting a diagnosis as early as the 40s and 50s is just the start of

being labeled. We all don’t look alike or act alike. We’re not even the same

ages. People suffering from a dementia are all lumped together. I’ve spoken

with many people who worked for several years before the disease became

disabling.

No two patients look or act alike early on. Even the sisters with FTD in the film share a room in the same

nursing home, yet are not functioning at the same cognitive levels. There is no known cure for FTD, but

many take meds that help with their “angst”, depression, not sleeping, focus, exhaustion, anger/agitation,

etc. Let’s celebrate with a new Face Lift for Dementia. For “Rare Disease Day” , if you know someone

with dementia, ask them the latest challenge they are facing. Please, just listen. Don’t say you know how

that feels because it happens to you all the time. Having a terminal degenerating disease makes you

grieve every new loss.

A new Face Lift peels away the old stereotypes, and shows them as they really look. As you realize

something is changing with your thinking, you are bound to be frustrated, angry, and have high anxiety

from trying so hard to keep it together. It is terrorizing to realize you are Losing Your Mind. Denial

becomes easier. In the film, courageous sufferers and families share their struggles, and how they try to

deal with the discrimination heaped upon them. They share their confusion, and their pain.

The risk of waiting until symptoms get so bad is that many people lose their jobs, homes are foreclosed,

and families are torn apart. If we can recognize symptoms sooner with the new brain scans and neuro-

psych testing, there is Hope for slowing the decline. Together we may help people compensate longer,

which may help save them from financial disasters, and give families more time to live in those "precious

moments”. Many have asked how they might help. Watch the 4 minute trailer to the documentary that is

being scheduled on PBS and its affiliates for a second time. Attached is a link to our new 16 page eBook

that lists more of my resources. I am in 4 patient groups on-line, with well over 6,000 people with FTD.

Please help us build awareness about the disease by forwarding this to your list of professional contacts

and friends

Let’s peel away the stigmas and give people with dementia a new Face Lift, by

helping to protect the dignity of those who have no choice!

Watch the Documentary Watch a Trailer View the eBook