Inspiration, Acceptance, and Erasing Stigma

Sep 29, 2020 | Dona Locke | @DrDonaLocke | Comments (11)

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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!

 

 

 

Interested in more newsfeed posts like this? Go to the Mild Cognitive Impairment (MCI) blog.

@emyliander

Hello everyone, I’ve surfaced again, we are now living in NY and I have some advice. Don’t move during a pandemic. First we stayed in an apartment belonging to our sons friends, it was very nice and had everything we needed, that was in June, then we moved into our new mobile home last September and are busy arranging gardens.Everything takes twice as long to accomplish and is twice as difficult, as well as getting established with all new Doctors for our many needs. My new doctor did refer me to a neurologist and I had the testing done about 2 months ago. The result is that I have had some TIA’s, not big enough to have caused symptoms that I would be aware of. My memory certainly deteriorated as the months went by, causing me to forget many things, loose things, not able to do bills, or figure out simple tasks that should have been easy to do.but my doctor and the neurologist both think that it is due to stress. The neurologists advice is to exercise each day, follow the Mediterranean diet, keep my blood pressure under control, take a baby aspirin each day and reduce my stress. I had been having trouble with my blood pressure and was started on medication for it, it is better now. I am reducing my red meat intake to once a week, cut down a lot on sugar and salt in foods, I use Mrs Dash instead of salt. Eating more fresh fruit and vegetables. I also had a low vitamin B12 level and am getting a B12 injection each month. I have felt some improvement. I must say that I am surprised that stress could affect your memory so much.
I actually did write a letter to you Chris, but lost it before it got sent.
Another of my brothers died last August in Australia from brain cancer. We are still working on getting our daughter Kim into a day program, there are many more hoops to jump through in NY than there were in Maine.
One good thing, we have all three had our second COVID vaccines, with minor side effects.
I know this pandemic has been hard on everyone and however it is affecting you all, I hope you have relief soon, and can enjoy the summer months.

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Today is a special day. I have been watching for you to reappear @emyliander, I have missed you. It sounds like you have been very busy. Now you just have to find Kim a program and take it a bit easy.

You know, as I read your very welcome post, I settled on the memory issues that are still popping up. I have come to the realization that I am most affected when I am under stress. I had a bit of a rough winter....was the last patient at the clinic on New Year's Eve......with my constant itch. Then two weeks ago I ended up in ER with kidney stones. That will wake you up. I haven't had one in years.

I am now seeing all the clinicians for post-hospital visits to work on an avoidance plan. We (my PCP) and I are changing medications and that can be a bit scary. Here's the funny part that we can both laugh about. Urology said no more bananas or apples. Drink lemon water. The next one said yes to bananas and applesauce....no nuts though.

Have you ever made overnight oatmeal? I love it........

May you have happiness and the causes of happiness.
Chris

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