Inspiration, Acceptance, and Erasing Stigma

Sep 29, 2020 | Dr. Dona Locke, HABIT AZ Director | @DrDonaLocke | Comments (9)

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A couple of weeks ago, we reposted an article about sharing a diagnosis of Mild Cognitive Impairment. This is always a topic of discussion in our HABIT Healthy Action to Benefit Independence and Thinking program. In addition, many of our patients also discuss the changes they see in their abilities when MCI enters the picture. All of these discussions are important and though we try to guide discussions around the pros and cons of sharing a diagnosis and provide support for adapting to cognitive changes, in the end the decisions to share (or not) and adapting to change are really in the hands of the person living with MCI. I see bravery in every single one of my patients as we work together, and they inspire me every day.

In my personal life, my husband and I started watching a television show called The World's Toughest Race: Eco-Challenge Fiji. Have you guys seen these races?  They are insane one week+ races that involve pretty much every kind of terrain and every kind of racing--Biking, running, mountain climbing, swimming, rafting--you name it, and these teams do it.  My husband could probably actually do a race like this, but I enjoy sitting on the couch marveling in the achievements of these teams.

A few episodes in, we were introduced to Team Endure and Mark Macy. Mr. Macy is apparently an eco-challenge legend, but he reveals that he's recently been diagnosed with early Alzheimer's disease. He participated in this race with his son and other supportive team members, and it was AMAZING to see him. He was so open, honest, and determined. His team adjusted their race plan to be sure Mr. Macy got a good night sleep every night (rather than racing without sleep as the teams normally do). They adapted and along the way did their part to erase the stigma of cognitive impairment and prove that you still CAN to the things you love (although probably with some adaptation) even with a cognitive impairment diagnosis such as MCI or early Alzheimer's disease. In the end, they had to discontinue the race due to a back injury, but his story was an inspiration to watch.

So, I hope that Mr. Macy might inspire you to be open about your MCI, to join him in eroding the stigma that comes from a cognitive diagnosis, and to keep pursuing your passions--whatever they are--even while acknowledging that how you pursue those passions may have to change.

Thank you, Mr. Macy, for inspiring me (and likely many other viewers), just like my patients inspire me every day.

 

Who inspires you in the face of cognitive impairment or illness? We'd love to hear!

 

 

 

My husband inspires me, he is open about his MCI diagnosis, he is able to maintain his sense of humor, he has a positive attitude and together we approach the changing landscape as a team. He’s willing to share his thoughts and feelings with me and this makes it possible for me to be supportive, loving, and positive. Thanks for motivating me to put this into words.

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@mmp

My husband inspires me, he is open about his MCI diagnosis, he is able to maintain his sense of humor, he has a positive attitude and together we approach the changing landscape as a team. He’s willing to share his thoughts and feelings with me and this makes it possible for me to be supportive, loving, and positive. Thanks for motivating me to put this into words.

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Thank you so much for sharing! I'll bet he inspires those around him as well!

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A small note to thank all who responded to me. I have gained important information from you and am working diligently to put it to use. I, too, am fortunate to have a wonderful partner who is letting me work with him as he confronts this disease. He is amazing! Together we are planning for whatever lies ahead. Our outlook is to prepare for the worse and hope for the best. I treasure each and every moment we have together. Wishing an abundance of those moments for each of you.

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@ann59

A small note to thank all who responded to me. I have gained important information from you and am working diligently to put it to use. I, too, am fortunate to have a wonderful partner who is letting me work with him as he confronts this disease. He is amazing! Together we are planning for whatever lies ahead. Our outlook is to prepare for the worse and hope for the best. I treasure each and every moment we have together. Wishing an abundance of those moments for each of you.

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My first response since our HABIT session in Aug 2019 in LaCrosse, WI. We are also blessed that Virginia is very understanding of what is going on and we both are talking about how we adjust to changing behaviors. We have played lots of golf and walk the dog daily. Gardening is about over for the year in Minnesota and we are getting ready to shovel snow, something Virginia really likes to do. A local ALZ chapter has on line support group and that has been a help for me. Before the pandemic they had a coffee group that we both went, but that is on hold. While the future is uncertain, we continue to be thankful what we can continue to do together

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@stul

My first response since our HABIT session in Aug 2019 in LaCrosse, WI. We are also blessed that Virginia is very understanding of what is going on and we both are talking about how we adjust to changing behaviors. We have played lots of golf and walk the dog daily. Gardening is about over for the year in Minnesota and we are getting ready to shovel snow, something Virginia really likes to do. A local ALZ chapter has on line support group and that has been a help for me. Before the pandemic they had a coffee group that we both went, but that is on hold. While the future is uncertain, we continue to be thankful what we can continue to do together

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Hi @stul, thanks for your comment to the MCI blog. As a HABIT alumni, you are also a member of the private MCI Partners group. I invite you to introduce yourself to fellow alumni here: https://connect.mayoclinic.org/group/living-with-mci-partners/

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@stul

My first response since our HABIT session in Aug 2019 in LaCrosse, WI. We are also blessed that Virginia is very understanding of what is going on and we both are talking about how we adjust to changing behaviors. We have played lots of golf and walk the dog daily. Gardening is about over for the year in Minnesota and we are getting ready to shovel snow, something Virginia really likes to do. A local ALZ chapter has on line support group and that has been a help for me. Before the pandemic they had a coffee group that we both went, but that is on hold. While the future is uncertain, we continue to be thankful what we can continue to do together

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Hi @stul – I want to add my welcome to @colleenyoung – please do come over to the private group. It's a great place to share concerns, victories, and questions. And it is private – which means we HABIT alumni can ask some questions and discuss some issues that we don't want to share with the world – or our spouses. Would you like to join us there?

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@DrDonaLocke

Thank you so much for sharing! I'll bet he inspires those around him as well!

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Hello. This is my first post.
I am a 54 year old man who has been diagnosed with MCI in December. Since then I have had over 40+ appointments with my PCP, two neurologists, neuropsychologist, speech therapy, occupational therapy, cognitive behavioral therapy, mri testing, sleep study testing, and soon a PET scan. Can there be such a thing as doctor burn out?
I just want to be left alone and live my life.

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@mbadlose

Hello. This is my first post.
I am a 54 year old man who has been diagnosed with MCI in December. Since then I have had over 40+ appointments with my PCP, two neurologists, neuropsychologist, speech therapy, occupational therapy, cognitive behavioral therapy, mri testing, sleep study testing, and soon a PET scan. Can there be such a thing as doctor burn out?
I just want to be left alone and live my life.

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Hi @mbadlose, welcome. I can totally understand where you're coming from. Enough with all the medical appointments. You've got life to live.

I'm sure the specialists want the best for you. Have you expressed to your team that you'd like to reduce the medical burden or at least slow things down and see them less often?

If you'd like to connect with others living well with MCI, you might wish to join this discussion group with @helenfrances @emyliander @artscaping @jimwilson4 and others:
– New to Mild Cognitive Impairment (MCI) https://connect.mayoclinic.org/discussion/new-to-mci/

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@mbadlose

Hello. This is my first post.
I am a 54 year old man who has been diagnosed with MCI in December. Since then I have had over 40+ appointments with my PCP, two neurologists, neuropsychologist, speech therapy, occupational therapy, cognitive behavioral therapy, mri testing, sleep study testing, and soon a PET scan. Can there be such a thing as doctor burn out?
I just want to be left alone and live my life.

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Good evening @mbadlose, Welcome to Connect. This is a special post and your first one. Are all of these appointments relative to your MCI condition? How will further evaluation help with your MCI issues?

I am going through several appointments this week for post-hospital stay follow-ups. Today, I had a perfect session with my oncologist. We made several decisions about how invasive further testing might be and if there was value in seeking additional information. She found out that I am not a die-hard searching for a needle in a haystack.

I came away knowing what to pay attention to in my body, how to avoid irritants and practice self-care. As you may realize, learning the ins and outs of this new website has been challenging. I solved it a bit by just printing out Colleen Young's blogs and directions instead of relying on my cognitive abilities or lack thereof to follow directions.

We know that stress causes anxiety which then wipes our memory clean and useless. So, yoga and mindful meditation are very important, So is medical cannabis in the right dosages. I also give myself memory challenges. Right now, because I go to a clinic for UVB cabinet treatments twice a week, I practice finding my car in the parking lot after purposely parking it in a different
area.

Another group I meet with at Mayo Clinic is studying patient burnout. Too many appointments, too much to monitor, long medication lists, daily must-dos and can dos. What happened to live and let live?

May you be content and at peace.
Chris

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