Social support and maintaining a positive attitude are crucial when facing a diagnosis of a myeloproliferative neoplasm, according to a caregiver and health care provider.
This video features Kerry Fraser, a retired NHL referee and patient with an MPN, who hosted the 2021 MPN Heroes® program, as well as, Jeff Bushnell, an MPN caregiver and former MPN Heroes® recipient and Dr. John Mascarenhas, of the Icahn School of Medicine at Mount Sinai in New York City.
Fraser: Jeff, as a caregiver to your wife who has myelofibrosis, for you, what does it mean to be a caregiver, and how does it feel to receive recognition for your devotion and care to Summer and the MPN community? As a retired airline pilot, I know I’ve got to tell you this — Air Force, colonel, I mean, we got to thank you for your service. But I must tell you that you're a guy that has done an awful lot throughout your career, is a leader of men, and has an awful lot of responsibility that you've experienced throughout your Air Force career. And did those experiences in those roles help prepare you for your wife's journey? And what did you take from those years as a caregiver?
Bushnell: It’s really funny that you ask it in that manner. Because to be a leader, an effective leader, you have to be centered on your troops, the people under you, if you take care of them, they will take care of you …
I help started an airline and a training company. And to be a leader in those things, what you have to do is get the people to understand what you're trying to do, and the boundaries that you're willing to let them work within, and then set them free. Because everybody wants to feel that they are contributing to the success of the operation. And if they can feel it directly, so long as they're working within the boundaries that you set, the organization will be extremely successful, and you as the leader, will reap the benefits just kind of as a as an afterthought. And that's the way I lead and believed.
As a caregiver, it's the same thing: you're caring for somebody that's your spouse, or someone that's a relative, or however you're involved with that person. And you really have to center your efforts on what that person needs and wants. And if you do that, you can give the best care possible, you can't force some kind of care that you're believing in on them, you got to listen to what they're looking for.
One thing that has really struck me — and maybe get into it later — as we got involved in this community, quite a number of people who have this disease, their significant other or the person that should be their caregiver is not really a help. The disease often doesn't manifest itself physically, a person doesn't really look sick. And yet, they have a life-threatening cancer. But, and I saw that, I've seen that numerous comments in some of the groups that were involved with, and so that the person that shouldn't be the caregiver is not willing to be the caregiver as it were. And that just blew me away, I couldn't believe anybody would act that way to somebody they loved and cared about. So you need to listen to the person you're a caregiver for, and respond to their needs.
That ties in with how I was successful in leadership positions elsewhere, I listened to the people that I worked with, and they took care of me.
Fraser: That's an amazing testimony. And I, you know, just looking on this on the sidelines, into the cockpit, I would suspect that in your role, you had to give orders. So if that's how the military hierarchy is sustainable, as you move up the ladder, and you have more power, to other people to do certain things that you know, are right and good for them. But what you're saying is that you've got a patient that you have to bring to the table in a certain way … they're not going to accept the orders, right?
Bushnell: The bottom line is a military leader or airline leader, you can't order somebody to do something, if you're not willing to do it yourself. The very successful military leaders were the folks that lead from the front. You can't be a general or a colonel and lead from the back. Your people will never follow you. And when you're working with your person that's got the disease and you're a caregiver, it's really important to listen to how they respond to it.
Summer and I approach this disease completely differently. I take care of all the medical aspects of it … I went to the ASH conference (American Society of Hematology), and I read all the latest papers on it. And when I go to the appointments with Summer, and I'm conversing with Dr. Tanaka, it's out. It's almost like two doctors conversing.
But that's not how Summer approaches it. She approaches it completely from a mental headspace. I believe that by mental, she believes, and I agree strongly, that her mental approach to it can affect her physical body. And so, she keeps an extremely positive attitude, and believes she's got to just keep going and doing things to the best she can and enjoying her life. And the combination of the two makes for a very powerful drug, if you will, to work with the disease and extend or put things back in check or however you want to look at it. And that's how we approach it.
In the work we do for the Patient Empowerment Network, we stress both ends of it so that people can understand that, and we give testimony to how it affects our lives.
Fraser: Well, Colonel, do I ever subscribe to that and the mental strength. The lessons that I learned throughout my career in the National Hockey League for over 30 years and having to deal with the somewhat hostile environment. I wasn't I wasn't having bullets shot at me but 100-mile-an-hour slap shots with bucks on occasion that hit me in the face and elsewhere from aggressive players was something that I think prepared me a little bit to push through stuff andyour are bang on with the mental approach.
Dr. Mascarenhas, can you lend some thoughts on what Jeff has just shared?
Mascarenhas: One thing that Jeff mentioned, which I've noticed myself, and I think is really an important part of the discussion is, when you have an MPN, whether it's ET, or PV, or even myelofibrosis, often, there is a lack of appreciation or recognition by those around you — sometimes your closest supporters and family members — about what it might mean to you physically and emotionally. And I see it countless times where patients who are not alone in the sense that they have family feel alone, because they aren't, they aren't engaged or supported in the way Jeff supports his wife, which is crucial … If you're alone, it's really difficult to go through these diseases, and when you have a loving spouse or involved children, or you know, close friends, it makes a huge difference. When people look at you and say, “Oh, you look fine,” but you don't feel fine, it can be very discouraging, and very challenging to convey to people what they actually feel like when they when they may not have a classic look of feeling ill and sometimes the symptomatology can be quite vague and can be quite varied. So that's a challenge.
I think being able to have that life partner and that support is really huge. And patients, I think definitely do better when they have that kind of support. And I think the positive thinking I could not agree more people who have that positive outlook. They do better. You know, and it has it has almost a medicinal effect. So I totally agree with you.
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