"This is just my personal story. I am just one person living with FTD out of a lot of people.”

My name is Mara Bloom, and I am a Clinical Research Coordinator at the University of Pennsylvania Frontotemporal Degeneration Center (Penn FTD Center). I conducted an interview with one of our research participants to shed light on what it’s like to live with FTD. A pseudonym, John Doe, has been used in place of his name to protect his privacy. Over the course of the interview John Doe made an important point that I want to highlight here: “There’s a lot of people with FTD, my story is just me. My story is one person that’s living with FTD. I don’t want people to read this to think these are typical symptoms. I don’t know what typical symptoms are. This is just my personal story. I am just one person living with FTD out of a lot of people.”

Mara:

Can you tell me your diagnosis and what that looks like for you?

John Doe: 

My diagnosis is the behavioral variant of FTD [(bvFTD)] which affects me in different ways than other types of variants. It affects my day-to-day life [by impacting] things like [my] executive functioning. That means for me that simple things that were very easily done in the past for many years are very hard to do now. An example would be [that] I ran my own business for 30 years and I was responsible for all the financial and technical things to make the business run, and now those things are so difficult to do. My wife does all the financial things now. I also have a difficult time getting motivated to start different things. At this point in my condition, I’m [also] just starting to see how I’m a little different in how I am in social engagements.

Mara: 

Thank you for sharing that. Now I’d like to ask you how has having FTD impacted your life?

John Doe: 

One of the things that I experience through FTD is that I overreact to things and there’s two aspects of that. One is with my wife and that is extremely difficult because my guards are down with her. When I’m out with friends my guard is up more, so I am able to control it more. [My wife and I have] been together for a long time and love each other and I see how it impacts her and it’s very hurtful for me and it’s been hard on her because she sees the changes that I’m going through and because she cares about me so much and it’s hard for her to see what I’m going through. At this point in what I’m going through I can see how it impacts her and it’s very difficult for me.

The other thing is that I am a very social person and I’ve been like that my whole life and I’m starting at this point in my condition just starting to see how I’m a little different in how I am in social engagements. One of the things that I find is that I am starting to think that people are treating me different and maybe don’t like me as much which is not true but it’s what goes on in [my] head.

Mara: 

That sounds like it’s difficult. How does that make you feel?

John Doe: 

It makes me feel really terrible. My whole life I’ve been liked by others, [so] it makes me feel not good. One reason why I like being social is not only that I like other people but that they also really like and respect me too. [This is something that I’m] starting to notice but it’s still early on.

Mara:

I can see how that would make you feel that way. How has that and your experience with FTD impacted how you view yourself?

John Doe:

As a chiropractor my whole drive and passion was to help others and contribute to people and humanity in a positive way. When I was diagnosed with FTD 2.5-3 years ago I had to stop that. My doctors wouldn’t let me continue to be a chiropractor which was devastating, and I felt like I couldn’t give back to humanity anymore. I then found other ways to give back to humanity.

In my history I’ve had many obstacles in my life that I’ve had to deal with, and I’ve always been able to overcome those obstacles but with FTD I’m not able to overcome it, but I can take action to deal with some of it. An example would be as a child I got diagnosed with Dyslexia, but I always was able to work harder than [other people] and do things to overcome it and I worked so hard that I eventually went on [to obtain] graduate degrees. With FTD there are things that I can do to manage it but there’s nothing I can do to overcome it.

Mara:

You mentioned that you found other ways to give back to humanity. Going off that, what are some things that you do to manage your FTD?

John Doe:

I push myself to be very involved socially. An example of that would be I’m involved in my community; I play a lot of pickle ball and that helps me very much socially. We laugh and say jokes and that helps me because I can be myself and who I always was. Also, another passion of mine is working with animals and dogs and now I do volunteer work with a shelter taking care of dogs which is another way I can contribute in a positive way. I [also] do a lot of volunteer work for the AFTD [(the Association for Frontotemporal Degeneration)]. My whole goal is to educate people and do whatever I can to help the future of people with FTD. I did a presentation in front of over 70 people with AFTD explaining my story with FTD just to make people aware of this disease. Also, I’m involved with UPenn for research [because it is] a way that I can contribute to the future of people with FTD and hopefully one day find a treatment and a cure.

Mara: 

That’s great that you’re staying involved in your community. What are some things that you wish everyone knew about FTD?

John Doe: 

A lot of people think that memory loss is a big part of it, and it might be, but for me, memory loss is not a big part of it, for me a big part of it is personality change. Again, I can’t do my executive functions like I used to. I’m losing very basic computer skills and orientation skills are getting really bad. I can’t drive long distances or drive to places that I’m not familiar with. I [also] don’t remember people’s names and stuff like that. As we get older, we can all say I lost my car in the parking lot or forget people’s names, but this is much more than just forgetting people’s names it’s much more than old age.

One quote that I use is that “I am who I am I am just different now”.  What I mean by that [is that] I have always been a person of high integrity, passionate, and wanting to help others. I just do it in a different way now.

Mara: 

I know that living with FTD is difficult, it can also be difficult for the loved ones of the person affected. What advice would you give to loved ones of people with FTD?

John Doe: 

One piece of advice would be that as a loved one as much as you care about the person with this condition it’s very important that you understand that this isn’t who I am, this is the disease. If I overreact or am unable to do something, it’s not me purposely trying to be hurtful it’s the disease. Any kind of personality changes or not being nice even more than just overreact, I’m not trying to be hurtful it’s just the disease that’s doing that.

One thing that I’d highly recommend is for a loved one to have an outlet so they can talk to someone else a family member or friend so that they can express their feelings and express what they’re going through with someone else.

[Another piece of advice that I have is that] if [bad] days become more frequent [the loved one should try] remembering the good times and good memories, substituting those negative feelings with positive feelings. It’s important that the loved one knows that those good times are going to decrease and that there aren’t going to be as many good times and I’m starting to experience that in my condition now.

[Finally, for me personally] I don’t want people to have sympathy for me. I want people to have understanding and for me that is huge because I don’t [want] people to feel sorry for me. I want people to understand what I’m going through so that when I overreact, they don’t take it personally.

Mara: 

That advice is very insightful, thank you for sharing. Now we’re going to pivot a bit and talk about research. What motivated you to become involved in our research program?

John Doe:

This is my way of doing something positive [with] my passion to help others. One thing that I really like about the research program at Penn is that they’re looking at the future and helping others in the future for treatment and diagnosis so that’s what kind of led me to it. I was very excited to do it. And it is really helping me fulfill my passion of helping others.

Mara:

How would you describe your experience participating in our research program?

John Doe:

I would describe it as exactly what I’m looking for. There was absolutely no pressure put on me by anybody in the program they were very helpful in me participating. With that, once I walked in the doors, they were all ready for me and somebody came and took me every step of the way. [They] took me to where I was going, spent time with me, explained everything that was taking place, didn’t rush me or try to influence me. [They] just really helped me, and that’s with everyone involved. Even though some of the things weren’t fun, like the spinal tap, they really helped me get through it in a great way. I am going to continue that for one reason, and that’s to help others in the present and future.

Mara:

I’m so happy to hear that you had a positive experience with our research program. Before we end the interview I want to ask you, is there anything else that we didn’t cover that you want people to know?

John Doe:

It’s important for me that I don’t give up and that I force myself to get out and do the things that I like to do. Right now, in the present I’m still able to live life and enjoy life. I can still deal with it at this present moment by doing the things that I want to do.

Mara:

That’s great. Thank you so much for your time and thoughtful answers!