How an MPN Care Partner Handles Burnout

How an MPN Care Partner Handles Burnout from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff discuss care partner burnout. Jeff is the caregiver of Summer who is living with myelofibrosis. Jeff admits to doing majority of the research so he can properly advocate for Summer’s care. In this video, Jeff talks about various outlets he uses to counteract burnout such as photography, music and improv theater.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

 


Transcript

Summer:

Wake up. I’ve finished making your bonbons, Jeff. You said you wanted these.

Jeff:

Thank you, Summer. Mmm.

Summer:

Is it delicious?

Jeff:

It’s delicious. Just what I needed.

Summer:

Well, I’m glad I could please you.

Jeff:

Well, I’m Jeff.

Summer:

I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network. We’re here to talk to you today about…

Summer:

What caregivers do, and sometimes caregivers might get burned out. So, we’re talking about what you can do periodically to not get burned out, to keep going, and being great like you are. What are some of the main things you do, Jeff?

Jeff:

Well, I…one of the main things I do is try to remove myself from worrying about myelofibrosis and Summer’s disease. And I go out into nature and I take a lot of nature pictures. I go to National Parks, and take pictures of scenery, beautiful scenery, and big mammals and stuff, which I really really enjoy doing. It sort of clears my head and really refreshes me. I recently took a trip, as a matter of fact, to Yosemite. That’s one of the things I do.

Summer:

And another thing has to do with music.

Jeff:

Yes, I love music and I play in a band. I play the keyboard and the guitar, and I do that once a week at my church and I really really…again it requires quite a bit of focus and it puts my mind in a completely different place. So I remove myself from the worries, is one of the things I do. I’m very fortunate because Summer is doing quite well and doesn’t need huge amounts of physical care.

Summer:

Right, but you do all of the medical stuff because I can’t stand to hear about medical stuff, it’s boring.

Jeff:

That’s right. I do do a lot of the research and keep up with what’s going on in the myelofibrosis area and that’s kind of what my portion of the caregiving is. We’ve talked before about working with, dealing with these disease requires a team approach: the patient, the caregiver, and the medical team.

Summer:

Right.

Jeff:

It’s very important.

Summer:

And we also do improv. That really helps.

Jeff:

That’s correct. We’ve mentioned before that we run a small theater, and one of the things we do in the theater is improvisational theater. We make things up, now you’ve got to be in the moment, so your head can’t be disclouded and worrying about other things. It takes your mind off of the disease, and in my case, worrying about Summer’s disease and the caregiving responsibilities. So that helps us. It actually helps both of us a lot.

Summer:

Right. So do you want any more bonbons or is that a no?

Jeff:

I’ll just take another bite. You know, if we keep going like this, you could become the caregiver and I’ll be the patient. So until next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye!

Summer:

Bye!

MPN Hero: Jeff Bushnell

The Patient Empowerment Network (PEN) is proud to congratulate and honor our dedicated and passionate Network Manager Jeff Bushnell, who is being recognized as an outstanding patient advocate. Jeff’s passion and enthusiasm for helping patients and caregivers navigate their cancer journeys exemplifies PEN’s mission of fortifying cancer patients and care partners with the knowledge and tools to boost their confidence, put them in control of their healthcare journey, and assist them in receiving the best, most personalized care available to ensure they have the best possible outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

 Jeff Bushnell, recognized for his advocacy through the PEN Network Manager program, has been named a Voices of MPN 2021 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Jeff, whose wife Summer is living with myelofibrosis (MF), has accompanied and supported Summer on her MPN journey and has helped thousands of patients through the Network Manager Program. Jeff and Summer  serve as a duo of Network Managers who reach out to patients in the MPN community through e-newsletters, program development, and support groups. Jeff makes connections to others through advocacy and humor presented via videos.

“My goal is to help the caregiver and the patient understand that the caregiver’s a significant portion of the team. We thought we’d try to tell our story to anybody who was listening. We make videos every month about different things. We try to make them informative and humorous and little stories, telling about the challenges that myelofibrosis presents. I’m trying to get the word across that it’s important to support these folks that have myelofibrosis. You have to listen to your patient. What does that person need? Some need significant physical help. Others just need reassurance, emotional reassurance. But at the same time the patient needs to ensure that the caregiver is taken care of and has their time. Summer gives me the time to pursue my photography interests. She understands that I’m recharged when I go to these natural places. I never thought of what I was doing as anything other than what needed to be done. Because I think if you’re involved with somebody you care about that you should do the best you can to support them.” – Quoted from  Jeff’s Voices of MPN Hero Award. See full video here:

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the U.S. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Learn how you can get involved here.

 

How an MPN Patient Resumes Exercise After Time-off

How an MPN Patient Resumes Exercise After Time-off from Patient Empowerment Network on Vimeo.

MPN Network Managers Summer and Jeff talk about Summer’s journey to resuming exercise after a shingles diagnosis.

Summer believes exercise is important and strongly helps with her myelofibrosis. She currently does a daily Zumba session and is working her way back up to 10,000 daily steps.

We would encourage you to continue and be as active as your disease allows you to be.

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.


Transcript:

Jeff:

Hi, I’m Jeff.

Summer:

Hi, I’m Summer.

Jeff:

And we’re your MPN Network Managers for the Patient Empowerment Network, here to talk to you about…

Summer:

Resuming activity after you’ve been laid up and haven’t been active for a while.

Jeff:

How many steps did you get, Summer?

Summer:

8,000. Only 2,000 more to go, so yay!

Jeff:

That’ll be great. Summer’s always been really an exercise addict. She really, truly, she’s tries to get 10,000 steps a day. She does Zoomba for an hour and she really tries to get a lot of exercise. She believes that’s really helped her with her myelofibrosis, but then something happened.

Summer:

Yeah, about the middle of June I got shingles even though I had the vaccine and shingles really made me exhausted. Really affects the nerves, it was horrible. So, I got really out of shape. I was just doing exercises laying down, mainly. So now that I am recovered, I’m trying to get back in shape.

Jeff:

And how are you doing that?

Summer:

Well I started out trying to do 30 minutes of Zoomba on my exercise tape, and that was only a couple of days ago, so I’ve gotten up to 50 minutes today. And I’m trying to get a total of 10,000 steps. When I get that goal, I’ll be back where I was before.

Jeff:

And how do…what are you working your way up to it, dear? What’s happening?

Summer:

Yeah, so many steps a day and today I got 8,000. But part of it, this helps your exercise a lot. I hadn’t been clothes shopping in those two months, so we went shopping today and I bought something to wear to a birthday party. So, that kind of renewed me and gave me energy to walk through the mall.

Jeff:

So how many steps did you get in the mall, do you think?

Summer:

I don’t know. I have now, like I said, I have 8,000 total, so I don’t know maybe I got 2 or 3 thousand in the mall.

Jeff:

So, we would encourage you to continue and be as active as your disease allows you to be. It’s sometimes a struggle. You may only be able to walk just around the block, but it’s really important and Summer knows how important it is. And, it’s been a real struggle getting back to where you were. Is that correct?

Summer:

You’re correct. That was the worst thing in my life.

Jeff:

So, that’s our advice to you for this short bit of advice is stay active to the very best of your ability.

Summer:

Right. Well, we better get back to walking.

Jeff:

We have 2,000 more steps to go. Yep. Well that’s our advice for today. Till next time, I’m Jeff.

Summer:

I’m Summer.

Jeff:

Bye.

Summer:

Bye.

How Stress Can Play a Role at the Time of a Cancer Diagnosis

How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

A Guide to Caring for Each Other: An MPN Patient and Care Partner

A Guide to Caring for Each Other: An MPN Patient and Care Partner from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer dive into how they care for one another. Although, Jeff is the sole care partner for Summer who is living with myelofibrosis admits to still having to care for him as well. Hear how our MPN Network Managers prioritize care for one another.

“Listen to each other really strongly and help give each other what you need.” — Jeff

Recording of Summer Golden’s Comedy Show Fundraiser

Recording of Summer Golden’s Comedy Show Fundraiser for the Patient Empowerment Network – April 24, 2021 from Patient Empowerment Network on Vimeo.

On April 24, 2021 Summer Golden and Jeff Bushnell—beloved PEN Managers—hosted a virtual comedy show to benefit the Patient Empowerment Network featuring comedians who have journeyed through cancer. In order of appearance: Summer Golden, Laura Hiltz, Josie Leavitt, Kat McCoy, Karin Tausan, and Mickey Zeichick.

Health Equity and Myeloproliferative Neoplasms (MPNs)

Health Equity and Myeloproliferative Neoplasms (MPNs) from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share their thoughts on how health equity can impact various MPN patients. They focus on a big factor in equity and MPN patients being location. Unfortunately, not everyone may have access to a specialist due to their geographic location. Summer who is living with myelofibrosis and her care partner Jeff both admit they were lucky to find a specialist in San Diego. Hear Jeff and Summer share The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

Advocacy Through Various Mediums with an MPN Patient and Caregiver

Advocacy Through Various Mediums with an MPN Patient and Caregiver from Patient Empowerment Network on Vimeo.

What is patient advocacy and how can you advocate? MPN Network Managers Jeff and Summer discuss the various ways in which they advocate. In addition to volunteering with PEN, Jeff actively participates in a support group. Summer who is living with MPN has decided to advocate through her humor. Make sure to watch to see a snippet of her stand-up routine! 

“Our challenge to you is, as a patient find a way to give your knowledge of how you’re handling your disease to others and you too can become a strong patient advocate.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657.

MPN Patient and Caregiver Explain How Colors Impact Their Lives

MPN Patient and Caregiver Explain How Colors Impact Their Lives from Patient Empowerment Network on Vimeo.

Are you conscious of the colors in your home? MPN Network Manager Summer and her care partner Jeff have their respective homes filled with colors that bring them joy. They prioritize mindfulness and positivity as part of Summer’s healthcare journey.

Jeff challenges you to surround yourself with colors that put your mind and body at ease.

Want to connect with Jeff and Summer? Email them at question@powerfulpatients.org

Patient Advocates Turned Award-Winning Network Managers

The Patient Empowerment Network (PEN) is rolling out the red carpet to congratulate and celebrate two of our dedicated and passionate Network Managers, who are being recognized as outstanding patient advocates. Their enthusiasm for helping other patients navigate their cancer journeys exemplifies PEN’s mission of ensuring all patients have the resources they need to access the best possible healthcare and achieve the best possible health outcomes. We are proud of our growing team of Network Managers and grateful for their engagement in the PEN community.

Summer Golden, recognized for her advocacy through the PEN Network Manager program, has been named a Voice of MPN 2020 MPN Hero. The MPN Hero award is given to those who have demonstrated a strong commitment to making a difference in the lives of people with myeloproliferative neoplasms (MPNs). Summer, who lives with myelofibrosis (MF), understands the MPN journey and has helped thousands of patients through the Network Manager Program. She, and her husband, Jeff Bushnell, who became her care partner when she was diagnosed, reach out to patients in the MPN community through e-newsletters, program development, and support groups. Summer makes connections with others through compassion and humor. Yes, humor. She says, “Everyone deals with this diagnosis differently, so whether it’s through education, support, or in my case, comedy, it’s important to face your disease head on and know you are more than a diagnosis.”

Jeff/Summer 2020 MPN Hero Red Carpet Debut from Patient Empowerment Network on Vimeo.

 Dr. Gerri Smoluk was a PEN Acute Myeloid Leukemia (AML) Network Manager and was recently named a finalist for the Reuters Patient Champion Award in the Patient Advocate category. Gerri was a drug development scientist and patient advocate who was diagnosed with AML in 2016. She made it her mission to help patients ask the right questions of their care teams. She used her knowledge to help patients learn about medications for and the latest information about their disease. Using her science background, Gerri developed tangible resources to help other AML patients. She felt she had an advantage and made it her mission to use that advantage to help empower others to make better decisions. Gerri passed away July 27, 2020. Her legacy lives on inspiring other Network Managers to help more patients become empowered.

Gerri Smoluk – PEN AML Network Manager from Patient Empowerment Network on Vimeo.

 The PEN Network Manager program is a volunteer group of patient empowerment ambassadors from around the country. Designed to further enhance health literacy, the program was launched in March 2020 and has grown exponentially. The volunteers engage with PEN’s network of cancer patients and families with the goal of providing support and navigation on their path to empowerment. Find out how you can get involved here.

How an MPN Patient and Caregiver Make the Most of Life

How an MPN Patient and Caregiver Make the Most of Life from Patient Empowerment Network on Vimeo.

 MPN Network Manager Summer who lives with myelofibrosis and her care partner Jeff discuss the importance of not putting your life on hold. Summer continues to work on her comedy routine and Jeff has been enjoying ZOOM photography classes. Watch to hear how else Summer and Jeff continue to make the most of life despite any challenges that may present itself. 

“We have not put our lives on hold during COVID or as a result of Summer’s MF diagnosis. Our challenge to you is to do the same.” 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

Counteracting MPN Fatigue and Finding Adequate Rest

Counteracting MPN Fatigue and Finding Adequate Rest from Patient Empowerment Network on Vimeo.

MPN Network Manager Summer Golden who lives with myelofibrosis, and her care partner Jeff, discuss how they handle her fatigue. From tracking sleep on smartwatches to choosing optimal dinner and travel times — they do not let fatigue boggle them down. Watch as Summer shares her personal experience with fatigue and provides tips to overcome. 

“We challenge you to find a way to make changes in your life that you get adequate rest. It’s really, really important.” 

 Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org

Tips for Traveling During COVID with a Blood Disorder

Tips for Traveling During COVID with a Blood Disorder from Patient Empowerment Network on Vimeo.

PEN MPN network managers Summer and Jeff take us on the road for their annual camping trip in the Julian forest in Southern California. What are some of the challenges of traveling with a blood disorder?

Both share tips on how to make the best of traveling during COVID.

“Planning is key when you are traveling during COVID.”

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist

The Importance of Finding a Myeloproliferative Neoplasm (MPN) Specialist from Patient Empowerment Network on Vimeo.

How can MPN patients find a specialist? Patient Empowerment Network MPN managers Summer and Jeff share how they met their myelofibrosis specialist, Dr. Tiffany Tanaka, who gave them confidence about their path to empowerment.

Listen as Summer and Jeff share specific valuable tips for connecting to the best resources.

How to Be a Good Care Partner 101

How to Be a Good Care Partner 101 from Patient Empowerment Network on Vimeo.

 What is the most important aspect of being a good care partner? MPN Network Managers, Jeff and Summer give tips on best practices for being a phenomenal care partner. Jeff breaks down his strategy for managing Summer’s myelofibrosis, including modifying their schedules due to Summer’s fatigue.

Most important tip?
Jeff: “To be a good caregiver, you have to take care of yourself.”

Want to connect our MPN Network Managers, Jeff and Summer? Email them, question@powerfulpatients.org