We at Inspire are pleased to bring you the latest in a series of interviews with people making contributions to helping patients and caregivers worldwide. We are posting these interviews in a Q&A format in my Journal as a news feature for members of all communities on Inspire.
About a decade ago, a highly respected American Express financial planner, Susan Grant, realized with growing horror that she was losing her mind. The rare genetic disease FrontoTemporal Dementia (FTD) had begun to take hold.
FTD is a type of dementia, second in prevalence to Alzheimer’s disease. FTD accounts for as many early dementia sufferers as does Alzheimer's under age 65, and often appears in men and women as young as their 30s. The disease is sometimes called "baby boomer dementia." Despite her own worsening condition, Grant is working to raise awareness about FTD, particularly throughout the medical community, and to reduce the stigma associated with FTD.
Grant used online resources to research more symptoms of this rare disease in the very early stages. She participated, for eight years, in clinical trials at the Mayo Clinic, University of Pennsylvania, University of California, and at NIH. She now uses online resources to manage her condition and participates with her physicians on a treatment plan for medication usage.
Because of the lack of awareness for the disease and education on diagnosing the signs and symptoms, Grant spent the past three years creating the documentary film, Planning for Hope, Living with FrontoTemporal Disease.
The film was just completed and it features personal stories from six families, as well as researchers from University of Pennsylvania, University of Colorado at Colorado Springs, and Mayo Clinic. Because of the implications of the disease striking younger people, the film’s producers also included insights from lawyers, and financial and estate planners.
I interviewed Grant by email exchanges and by phone. Excerpts of our conversation follow:
Inspire: You were managing investments of about $40 million, but you were forced to retire early from your financial advisor job because of FTD. That process of recognizing you were unable to continue in your job must have been terribly difficult.
Grant: Liability can make one pay way more attention to things. Yes, we were insured, but depending on the situation, if I made an error in the job I had, it could have cost me thousands. I had to quit at the top of my career. I loved what I did, and I loved the people I worked with. In no way would I keep doing anything that could affect what I did for my clients.
Thankfully, I had been mentoring a younger gal for three years and she knew how I did things. I stayed another three months to introduce her personally to families. I told them that I had chosen her from about 40 other advisors and that she would be handling my money. Since I never asked a client to do what I hadn't, my insurances were all in place. I had a disability policy, a longterm care policy, and a life insurance policy. In this disease you learn doctors and psychologists call this planning and thinking for others my "executive functioning skills". Imagine if I had gone into my doc and said my "executive functioning" is going down the tubes! We need to use the same language. Being the patient, I would call it my memory.
Inspire: How can patients better participate with their doctors in a treatment plan?
Grant: So many doctors are not used to getting the big picture. They don't have the time. Insurance dictates some of this. They don't see many rare diseases. If the MRI doesn't show a tumor, they don't take the next step. They perhaps think it is too expensive, and are afraid insurance won't cover it. Often they don't tell patients to find specialists but encourage them not to worry about it. We are working on a set of questions that are pre-clinical to take to them. This is the same reason drug companies send you questions to ask your doc. The reason I wanted so badly to finish making the film was for the financial message to get to those selling and buying long-term care insurance. Now being much more aware, I think people should buy it at age 40. I advised everyone to have an individual disability policy above and beyond their company plan if they had one. It helped a dear friend and client who had a stroke at 52.
People are bored during this part of the film and think it should shorten the film. Not a chance! Doctors must have an idea how they can ruin their patients financial lives by just saying, “Let’s see how you are in a year.” People have mostly had it for a few years anyway. So, and they get fired, too anxious to focus on work, homes get foreclosed, and families are ripped apart trying hard to deal with everything happening to them.
We choose docs on their listening skills--including the ability to draw you out and then read between the lines. Second, they must believe you. Third, and this is the hardest, as I have experienced with docs, families, and friends, they must protect the dignity of those who have no choice. Fourth, they must be up on the latest research--an easy question to find this out would be to ask them, "What website do you read regularly?" And fifth, they need to agree to be part of your team, not just the know-it-all.
Inspire: You have focused a lot of your advocacy educating the general public, in order to reduce the stigma of this disease. Is the medical community as a whole better informed about FTD?
Grant: I think the doctors now are responding now to FTD to how they first responded to Alzheimer’s disease years ago. It took Alzheimer’s quite a long time to get the language better in their clinical articles in how they were portraying the disease.
Inspire: How did you feel the first time you watched “Planning for Hope” when it was completed?
Grant: After getting over the shock of my voice and how much weight I gained from the tremendous amount of drugs, I felt that I accomplished my goal. We had tremendous executive producers who had no script. I just mind-mapped it at each new phase. I told the researchers not to give us sensational families. I wanted a face on FTD. Showing how young and many educated people, and siblings, are dealing with it at different stages. It shows how the timetables could be drastically different, even within a family. We attended every national FTD researcher conference since 2003. We chose the researchers with the very most passion for their contributions.
Making this film has done so much for me. I had to figure out the politics of this world. Pretty easy, and sickening. But I met some incredible researchers and some courageous families. We cried with each family as we heard their stories. In the brochures about the documentary, I say to listen to your body and get docs that listen and believe you. Otherwise, change docs!
Inspire: You have taken part in a half-dozen clinical trials, is that correct? What should people with rare diseases, who have not participated in a clinical trial, know about the process?
Grant: Yes, I have participated in numerous clinical trials across the country and on the Web. We researched the Web for all the trials. There are many clinical trials written up in journals and on the Web that the public can participate in. Search out what doctors are researching your rare disease. It is really OK to call the researchers in advance so you know how much time you have with the researchers. My passion is to keep the researchers on their toes.
Inspire: Your screen name is “Labrat” in your online support community, so you clearly embrace being part of research.
Grant: I love science. When I heard about the transgenic mice that can be given some of these rare diseases, I was fascinated with the research. The short time of the mouse’s life expectancy speeds up the research process for a cure. Thus, my “Labrat” name I use on the FTD online support group. When I first joined it several years ago, there were 500 people. Now there are over 4,200. I started a chat room for the “sufferers” where we support each other. I no longer feel so isolated. I got a lot of input for "Planning for Hope" from the group. I asked them for their early symptoms, what things they think are important to tell others.
The robots being used now in the drug discoveries, also speed up the new research for cures. There are new sophisticated neuro-imaging techniques; if MRIs show nothing, a PETSCAN is critical. Genetic researchers have now discovered the whole human genome. FTD can be sporadic, familial, or hereditary. Finding the genetic mutations opens the door to help future generations.
Inspire: How does it make you feel when people affected by FTD thank you for what you’re doing?
Grant: It makes me feel good that they think what I’m doing is going to help them too. I was most touched by my nephew when told me, "Aunt Susie, I get it. I will take over being the labrat if you want."
Inspire: We see so often in our support communities examples of people with serious diseases helping to further research, and helping to support and educate others--many of whom they will never meet or even know by name. Your own health is failing, yet you’re driven to do more in FTD research and advocacy.
Grant: I am not done yet. I like to add to the world knowledge of FTD. I have high hopes it will help my family with the same genes in the future. I love my life and hope to live every moment to the fullest. My tagline is “Live Fast, Love Lots, and Protect the Dignity of Those who have No Choice.”
To read more about Grant and to order the Planning for Hope DVD, go to http://ftdplanningforhope.com.