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Fri, Nov 16 10:53am · Patient Spotlight: Celebrating the one year anniversary of completing HABIT (and our page!) in Living with Mild Cognitive Impairment (MCI)

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Patient Spotlight

In honor of the 1 year anniversary of the Living with Mild Cognitive Impairment page, I’m delighted to be able to introduce a couple who is celebrating their 1 year anniversary of completing the HABIT program. Denny and his wife Bonnie participated in our October 2017 HABIT session and they have written the following reflection on their lives one year later. I was honored to work with them in HABIT and they continue in our follow-up support once a month so I get so see them regularly!

Denny and MCI

Since the first day I heard of Mild Cognitive Impairment – my life has changed in many and unexpected ways. I had been struggling with my inability to complete tasks that I could previously do and others that seemingly could NOT even start, much less complete.  In earlier times I had a successful computer analyst career with a major Military Contractor.  I had several international assignments in Australia, Korea and Norway.

Then my wife and I left our respective professions.  We bought a 100 campsite KOA Campground in Illinois. We made many major improvements, including a new swimming pool, the addition of 6 Camping Cabins and cottages, and new Owners quarters and remodeled Camp store.  After the first year and every year after we won a number of KOA quality awards.

We then retired from the Campground industry and moved to Grove, Oklahoma.  This was a great retirement town and we made many friends.  We are Square Dancers and so naturally we joined the Local Square Dance Club.

When I had unstable angina, it was quickly determined that I needed heart surgery.  We drove to Tulsa the next morning, but not before participating in a demonstration square dance in our small town.  They were short of experienced dancers.  The next day I had open heart bypass surgery.

After a recovery period, I have been able to resume normal activities.  We continued our international travel adventure trips and we also enjoyed our RV travels here in the United States.  We did, however, decide to move to a larger metropolitan area, Mesa, AZ.  It seemed prudent to have heart and other related medical services closer at hand.  After all, we had grown up as city kids in Minneapolis, Minnesota, far too cold for us now.

The love and support of my wife is the key to our current life style.  I do the majority of the driving and am driving safely – No accidents in over 15 years.  I do use a GPS when driving in new areas.

We have 2 cats and 1 dog that really light up our lives.  I try to do chores related to having pets.  I admit I do have trouble keeping up with many other household chores.

My father was a World War I vet.  He used to play in Admiral Sims Flagship Band.  His major instrument was the Baritone Horn.  When he passed, I inherited his horn.  I am now taking lessons on his instrument.  This results in lots of practice sessions between lessons.  I am having fun and making progress.

We have started an exercise program where we do 45 minutes of reasonably strenuous activity 3 times per week.  We use stretch bands, weights and balls (Plastic about 7 inch in diameter).  This activity seems to have a real positive effect on my general outlook.

I believe the Habit program, with lots of help from my wife is making a real difference in my/our quality of life.

Meet Bonnie and a partner’s perspective

As the spouse and partner of a person with MCI I would like to share a recent experience; I’m so proud of our journey this past year.

I just returned from a special trip to babysit great grandchildren. I flew out of Phoenix on a Wednesday morning and returned the following Monday night. Not just a couple days, but 6 days, leaving my husband who was diagnosed with MCI three years ago home with our two cats and dog. Somehow I had thought the ability to make such a trip was a part of our past life. My biggest lesson was being able to let-go and give him the space to safely be independent.

He managed very well and I am so proud of him. Did he eat every meal left for him in the fridge? –NO. Did he waste away? –NO. He attended events on his memory support system (MSS) calendar, solo or with neighbors. The animals were healthy. The house was in order and all was well. Did he park at the wrong terminal on my return?–YES. But with phone connection he found me 2 terminals away, walking and by airport train. We found our way back by train and walking to the car! Life is good.

We celebrate that he functioned in a reasonable manner and seemed to thrive on the independence of my being away.

We both have the gift of confidence in how to live with MCI thanks to the HABIT program.  In fact my question is how often do I create a co-dependent atmosphere; too helpful and protective? I loved my time with the kids. And together we will return to GA this month for a family graduation celebration.

Our MCI Journey

Summer 2015 found my husband and I relocated to Mesa, Arizona. We had been winter visitors with our motor home for three previous winters. My husband’s parents, when living, had enjoyed a home for many years in Mesa and we had spent time with them. The first winter of 2013 he expressed concern about memory issues, also a symptom of low thyroid and his blood tests were abnormal. He was started on thyroid medication and we accepted our “new normal”. By our third winter we had decided to relocate to Mesa as year around residents. Our 1st retirement in 2006 to our “forever home” was a small town in northeast Oklahoma. Major medical and cultural options were 70 miles away, fine when younger, but not looking good for aging in place. Our Arizona choice was a home in a 55+ community and we moved in late spring. With no summer visitors or winter visitor family in town, few neighbors here and everyone indoors we really missed our OK friends. I read a newspaper article about a clinical study being done that needed people.  In memory of a friend who had recently died we decided to volunteer for the study.

During orientation testing we were seated in a conference room and informed that my husband showed signs of MCI and could not be in the study.

That started a quest for information on line and in books. That research started us on a three day a week exercise class and we attend faithfully, healthy eating knowledge which we attempt to follow and the realization of the need for socialization activities. With annual visits to our family Doctor he was testing at the same “memory” level fall 2015 and 2016.

A year later, I was searching on line for clinical studies information. Fortunately, I was told about the Mayo HABIT program and in October 2017 we were so lucky to be in the program group.

HABIT

Finally a way to learn and understand what this MCI is, and how to live with this diagnosis! We found wonderful staff, so much information and understanding brought into our daily life. And the MSS (memory support system) Calendar; so valuable.  I also appreciate the addition of our monthly support group sharing. We love to share the news about HABIT with everyone, and are so grateful for the experience a year ago. Our lives are full of activities we enjoy and the days, weeks and months fly by. Denny is enjoying Baritone horn lessons and his improvement and enjoyment is a result of hours of practice. Games like MahJong, cribbage, Rummy Cube etc. occupy afternoons and evenings. Bridge may no longer work, but other games are enjoyed by the two of us, or with neighbors and friends.

Volunteering gives us many hours of enjoyment, and a chance to give back to society. We usher at community college events, and soon at our Performing Arts Center. We have driven people to medical appointments, etc. for three years now for a local area agency. We enjoy Security Patrol in our community, and volunteer extra hours in the summer when so many members are out of town. We have become active in our local political group and joined a local Lions Club. We are active in and enjoy our church community.

Yes, there are losses in this “new normal”. Challenges with technology, financial issues, travel and life style changes; difficulty with phone conversations, writing ability, and enjoyment of reading books. What is important are family and friends who understand; his driving skills remain intact, the busy MSS Calendar for independence; our respectful and loving relationship and our physical health. Also, our animals with their daily living needs; and gift of unconditional love and affection. Our life is full and satisfying, WE CAN LIVE WITH MCI!

MSS

One year anniversary of the Living with MCI page

Our team members have been so excited to see all the responses each week to our newsfeed topics! It is hard for us to believe it has already been a year. So far we’ve had nearly 2000 visitors to our page! It is so humbling to think we could be helping and supporting so many people. We’ve had over 500 unique visitors to the newsfeed article that describes the HABIT program! Our most popular topics have been the 1 minute breathing meditation for relaxation (over 700 unique visitors!) and our recent review of a Mediterranean diet meal kit delivery service published just a month ago (over 500 unique visitors already!).  We would love to have you comment in the comments section on topics you’d like to read more about!  Just let us know!

 

Tue, Nov 6 6:50am · Dr. Locke presents in New Orleans! in Living with Mild Cognitive Impairment (MCI)

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On October 19th, I had the opportunity to present research related to the HABIT Healthy Action to Benefit Independence & Thinking Program ® at the National Academy of Neuropsychology Annual Conference in New Orleans. I was invited to present with a colleague, Dr. Sarah Tomaszewski Farias from the University of California-Davis on interventions to prevent or delay dementia. It was such an honor!

The HABIT Program presentation

For my part of the presentation I presented a summary of the Mayo Clinic team’s work on the HABIT program, extending back to our work evaluating the benefits of the memory support calendaring system. That work shows the benefit of adopting the organized but portable memory support system for those diagnosed with Mild Cognitive Impairment–specifically in helping individuals function better, have more confidence and have improved mood.

I also shared some early evidence from our latest research trial, in which we left out one of the five components of the HABIT program each time we ran a session to determine what the impact of that loss was on our patients and their partners. Our patients consented to being part of this research and knew they would be missing something from their version of the HABIT program, but the did not know what would be missing. So far, when we look at patient outcomes including quality of life, self-efficacy, depression, and anxiety, it looks like all of the components except cognitive exercise contribute to outcomes in our patients in some way–However, one outcome we have not yet evaluated is actual cognitive functioning on cognitive testing. We await the results of that analysis as this could be an area where the cognitive exercise class is beneficial. When we look at partner outcomes such as quality of life, burden, depression, and anxiety, it appears that the wellness classes and our yoga classes are providing the most impact to these outcomes in our partners in HABIT. We continue to evaluate the data and plan a number of academic papers for review by our academic peers on the topic. That’s when we’ll know the final results, so stay tuned!

What’s happening at University of California-Davis?

Our neuropsychologist colleague Dr. Farias has been working on an intervention for older adults who do NOT currently have objective evidence of memory impairment or MCI. Their Brain Boosters program aims to help older adults engage in healthy behaviors expected to impact brain health, specifically physical exercise, cognitive exercise, and stress management. They also teach organization behaviors, including use of a calendar, and have begun including the memory support system tool utilized in the HABIT program in their brain boosters program. They found that they were able to increase these health behaviors in those who participated in their program (they exercised more cognitively and physically and engaged in stress management techniques more) and utilizing the organizational structure of the memory support system helped with adhering to those behavioral plans. The older adults in their study showed improved functioning at the end, which is remarkable given that these individuals were all functioning well to start!

What’s next?

Dr. Farias and I have been applying for grant funding to collaborate on a pilot study of her Brain Boosters program with some features of HABIT at Mayo Clinic in Arizona. I continue to collaborate with Dr. Shandera-Ochsner, Director of HABIT in Minnesota, and Dr. Chandler, Director of HABIT in Florida, and we are all interested in this possibility that we can bring a HABIT-like program to older adults without cognitive impairment but who may be worried about cognitive health and interested in what they can do to protect their health. A HABIT program for healthy-aging if you will!

 

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Tue, Aug 21 9:10am · Behavioral Strategies for Adjusting to a CPAP After a Diagnosis of Sleep Apnea in Living with Mild Cognitive Impairment (MCI)

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As a psychologist, behavioral change to impact health IS my area of expertise. So, while I’m not an expert in the range of device options for you, assuming you’ve explored all that with your physician or medical device provider (see last week’s post), here are some behavioral techniques that may help you adjust to your device if you are still struggling.

What is your reason for even trying?

For all of us, it is more meaningful to make a difficult lifestyle change if we have identified why this is important. This also sets a positive tone to even trying. So, what is your reason for wanting to adjust to the CPAP when it clearly is a challenge for many? The answer isn’t “Because my doctor told me to” or “Because my spouse says I snore.” Of course, your physician wishes it was as easy as telling you to do something, but meaningful change comes when you identify a personal reason that is meaningful for you. Is it perhaps because you are so sleepy you can’t have meaningful interaction with our spouse in the evening? Is it because you know you have other risks for heart disease, and you want to be around when your grandchildren graduate from high school or college or get married? Is it that you want to have more energy during the day because you love restoring antique cars, and you notice you’ve been too fatigued to do that lately? Whatever the reason, make it personal. You’ll be more likely to be successful, and you’ll have a more positive attitude about making the change.

Wear your mask during the day while awake

This strategy is effective for many problems with CPAP adjustment. Do you feel claustrophobic? Do you just feel that you are so aware of the mask that you can’t fall asleep? Do you find you’ve taken the mask off at night and didn’t realize it (also see additional tip below)?

If your problem is claustrophobia, you may need to start very slow. Consider starting with a relaxation exercise  (such as this 5 minute guided relaxation exercise) or a mindful breathing exercise (such as this 3 minute mindful breathing exercise). Then, just hold the mask up to your face during the day, multiple times per day. Hold it there for progressively longer periods of time. Eventually, strap the mask on. Do all of this  without even turning the machine on. When you move through these steps, keep in mind your personal reason for wanting to do this. Visualize watching your grand-daughter get married or that next antique car you wish to restore. When you are able to tolerate wearing the mask with strap, then trying turning on the device during the day when you are awake. Read a book, try a relaxation exercise, watch TV, do a brain fitness exercise on the computer. Eventually, you’ll find you adapt. If you do not really feel a significant claustrophobic feeling but you are just aware of the mask, you can use the same process, but perhaps you can start all the way with wearing the mask during the day with the machine on while awake.

Consider a fan or other white noise

Some people find the sound of a CPAP or other device bothersome. The noise of a CPAP has improved significantly over time such that now most devices are very quiet-nearly silent. But for some, any noise is notable. If this is an issue, consider a standing fan or other white noise in the room. However, DO NOT use a TV or radio as background noise—this is disruptive to your sleep pattern in other ways.

Use an alarm at night to get the device back on

Another common problem after conquering falling asleep with the mask, air flow, and machine sound, is taking the mask off at night without realizing it. For some, just sticking with it and putting the mask on every night when they go to bed and putting it back on if they wake in the middle of the night to find it off is enough to eventually make it through the night with the mask on. However, if that isn’t enough, try setting an alarm for the middle of the night so you can briefly wake up and put it back on. Or, if you bed partner starts to hear your snoring or gasping during the night, ask them to wake you to get the CPAP back on. Before long, you’ll find you are wearing it longer and longer until you eventually wear it through until the morning!

Keep trying!

Unfortunately, during this adjustment period, you may actually feel that your sleep is worse than when you were just sleeping with your sleep apnea untreated. My husband was convinced he was barely sleeping during this time! His reason to keep trying was that he was feeling so sleepy by 6 or 7pm that he wasn’t able to enjoy any of his off time in the evenings. His main challenge (after mechanical issues solved with the proper equipment) was taking the mask off at night without realizing it. Despite feeling even sleepier, he diligently tried, night after night. I would estimate that it took him a good six months to feel completely adjusted and sleeping well. But now, he feels great!  And I feel great knowing he’s managing this heart health risk factor, and I’m sleeping better without the snoring! Despite having to get up at 4:30am to be at work on time at 5:30, he feel refreshed enough that he is quite alert in the evenings, and we had some fun family time then! Now our problem is that he can’t sleep WITHOUT the CPAP! What a change. I certainly understand that adjusting to the CPAP or other device is difficult. But as a professional, I know how important succeeding in that adjustment is for your cognitive and physical health. So, please keep at it!

And if you have another tip that helped you, please share it so that others have lots of idea about how to make this work!

 

 

 

Sun, Aug 19 4:20pm · Cpap and sleep in Sleep Health

Thanks @colleenyoung

I would love to see some comments here! Also just a heads up that the article above is just the first in a two-part series. Next week’s post is more about how to adjust when the issues are not just equipment related. Suggestions for things like feeling claustrophobic or having trouble taking it off at night without knowing if. So I hope part two may be helpful to this group as well!

Thu, Aug 16 2:40pm · The Importance of Treating Sleeping Apnea in MCI: Getting Started in Living with Mild Cognitive Impairment (MCI)

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Why are we talking about sleep apnea in MCI?

Sleep apnea is a very common sleep disorder in the general population and also a common sleep disorder in our patients with Mild Cognitive Impairment (MCI). Sleep apnea is a sleep disorder where individuals stop breathing at night (and then gasp themselves into breathing again). Take a look at this link if you want more information on sleep apnea. My husband actually has sleep apnea, finally diagnosed after we were married, and I discovered the extent of his snoring and gasping for breath at night (in between the scary silent pauses when he wasn’t breathing at all).

In our patients with MCI, sleep problems are a significant cause of “excess disability”—it makes a person’s memory or thinking problem worse. One of our major aims in the Mayo Clinic HABIT Healthy Action to Benefit Independence and Thinking © program is to identify and treat anything that could make MCI worse. Sleep apnea is one of those that is very common.

Using a CPAP machine, or continuous positive airway pressure machine, or a related device, is a very common treatment recommendation, and CPAPs are very effective treatment. The problem is many, many individuals, including my husband, have trouble adjusting to using a CPAP machine. But treating your sleep apnea goes beyond just helping your memory: treating sleep apnea also has a major impact on your physical health. Importantly, complications of sleep apnea also increase your risk of heart problems and heart disease…Not to mention sleep deprived bed partners!

First steps to adjusting to a CPAP

Some individuals take to a CPAP or related device right away. For others, it is a struggle. I will get to some behavioral strategies for helping yourself adapt next week, but first, it is important to be sure you’ve done all you can to be sure you have the equipment that is the right fit for you. Sometimes, all it takes is the right mask and voila! CPAP and (quiet) dreamland are all yours. The variety of device options is not my area of expertise, so first, be sure you’ve explored with your physician or device supplier the following:

  1. Have you tried a variety of different masks? For my husband, he finally needed to move from a mask that covered his nose to a “nasal pillow” type mask that fit at the bottom of his nose.
  2. Have you confirmed that the pressure is set optimally for your needs? This is typically done at your sleep study visit, but it never hurts to ask if you feel that the pressure is too much or too little (if you feel it is too much, but your physician has confirmed it is correct, I’ll be providing some behavioral options next week).
  3. Have you explored other device options that may help ease the adjustment? For example, does your device offer a humidifier? Do you even need a humidifier? Does your device offer a “ramp up” period so that the pressure gradually increases when you turn it on? Perhaps you could benefit from a BiPAP rather than CPAP. A CPAP has the same continuous air pressure all the time while a BiPAP has two levels of pressure—one that is harder when you breathe in but lower when you breath out. Do you need a chin strap to help keep the mask on through the night and your mouth closed?

These are just a few observations as a spouse of a loved one who had to explore lots of equipment before finding what was right for him. Turns out, he needed the pressure ramp up because he couldn’t tolerate the full pressure right away. He also really needed the humidifier. We live in Arizona, and his first machine didn’t have one. Talk about a dry mouth in the morning!

Now that you know why it is important, and some important first steps to try with your doctor, check back next week for more behavioral strategies if adjustment is still difficult.

Tue, Aug 7 10:28am · Summer Recipes! in Living with Mild Cognitive Impairment (MCI)

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In the Mayo Clinic HABIT Healthy Action to Benefit Independence and Thinking © program, we typically recommend a balanced, Mediterranean style eating plan for brain health. One of the recommended food groups in that plan is BERRIES! This is my favorite food group on the plan, so I wanted to share a couple of refreshing summer recipes with you.

These treats come from the Mayo Clinic Dan Abrahams Healthy Living Center. The strawberry sorbet is so cool and refreshing in this summertime heat! The summer salad is light but full of flavor. I also include my favorite berry—the blueberry! I enjoy the milder and crunchy daikon radish rather then the red radish (which I find a little spicy!) Also, if you go for a leafy green like spinach as the base, you’re also getting in a second recommended food group on a Mediterranean style eating approach—GREEN LEAFY VEGETABLES.

Strawberry Balsamic Sorbet

Ingredients

-3⁄4 cup balsamic vinegar
-2 tablespoons basil, finely chopped
-4 cups strawberries, hulled and halved,
-plus 5 berries, coarsely chopped
-1 tablespoon dark honey

Fresh Summer Salad

Ingredients:

-12 oz baby greens
-2 oz goat cheese
-2 cups assorted fresh berries
-1/2 cup julienne red onion
-1/3 cup Balsamic vinegar
-1/2 cup julienne red or daikon radish

I hope you try these and enjoy! Also feel free to post your favorite healthy berry recipe to share with the readers!

Thu, Jun 21 12:30pm · Living alone with Mild Cognitive Impairment in Living with Mild Cognitive Impairment (MCI)

Hi @user_cha272278. I’m so glad you asked! Mayo Clinic has the HABIT program, which is solely designed as a treatment program for those just diagnosed with MCI. Please take a look at the Program Overview tab on the Living with Mild Cognitive Impairment page for more details on what we do. Feel free to ask more questions after that!

Thu, Jun 21 12:23pm · Living alone with Mild Cognitive Impairment in Living with Mild Cognitive Impairment (MCI)

Hi @1gusto. My recommendation is that if you have concerns about your memory or possible Mild Cognitive Impairment that you start with a conversation with your primary care physician. He or she can then arrange an evaluation which often includes medical evaluation, sometimes a consultation with a neurologist and ideally a comprehensive neuropsychological evaluation.