New Terms That All Spell Respect
I’ve been working on a project in the area of mild cognitive impairment (MCI).
MCI might be a new term for some of us. MCI represents an intermediate stage of cognitive function between the changes seen in aging and those fulfilling the criteria for dementia and Alzheimer’s disease. The estimated prevalence of MCI in population-based studies ranges from 10-20% in persons older than 65 years of age. The number of individuals with MCI exceeds that of Alzheimer’s Disease and there are an estimated 5.4 million Americans of all ages with a diagnosis of Alzheimer’s disease.
The project I’ve been a small part of is a pilot class called “Optimize: Your Brain and Body Health.” It’s an eight-week course for people with MCI that combines cognitive practice and physical exercise. There have been several observational studies that show cognitive stimulation and physical exercise may be preventive against dementia and Alzheimer’s disease as well as MCI. Once we have trained trainers in this class, we expect it to be offered frequently in a variety of locations in 2014 and beyond.
I want to share some of my observations related to the new terms I’m learning through my work with Optimize. Person-centered care
is a practice that started in England the late 1990’s. The notion is that instead of someone else deciding what a person in need of care should be doing when they attend an adult day center or are placed in long-term care - i.e. breakfast at 8, BINGO at 9, current events at 10, arts and crafts at 11, lunch at noon, the person’s day revolves around what the person is interested in. This requires a lot more effort on the part of the institution. Ask Beth Meyer-Arnold, Director of Adult Day Services at Luther Manor. She has been offering person-centered care at the Luther Manor Day Center for 12 years. When people decide to take advantage of the services of the Day Center, they are interviewed about their habits, their interests, their work life and their family life. For the non-regimented folks, a snack bar with stools reminiscent of drug stores of the past offers food outside of scheduled meal time. Instead of offering the typical calendar of daily activities, Luther Manor Adult Day Center offers about 40 activities for groups as small as two ladies who enjoy knitting and chatting to a group of 10 or 12 who participate in a collaborative art project.
Person-centered care has directed my thinking about the lives of older adults and the lives of people with disabilities in a new way. I spend my leisure time doing things that I enjoy – reading, playing cards, listening to the music that I like, observing the things in nature that interest me such as birds and flowers, and so on. It would be difficult, if not depressing, to be forced to listen to music I didn’t like, to participate in discussions that I wasn’t interested in, to read a science fiction book or watch a movie about bridge building. We professionals in the older adult field and in healthcare in general are quick to tell people what’s good for them. “This type of exercise is best,” “that kind of mental stimulation is needed” is not going to result in commitment if the person isn’t engaged.Engagement
is another word in vogue. I like it. It’s the same concept as person-centeredness. The American Parkinson Disease Association’s Wisconsin Chapter has a program called Engage. APDA board member Jane Busch, who runs the program, first finds out what the person with Parkinson’s used to be engaged in – whether work or hobbies – and then discovers how to make adaptations that allow the person to still be involved. They have formed a group of guys who love fishing but can’t bait the hook or drive to the lake. Someone who has these abilities goes along. For the more solitary person who enjoyed woodworking but isn’t safe around their saws any longer, they have a bird house kit that they send to the home with complete instructions. The list goes on.
All of this equals a word that isn’t new: Respect.
A person with Parkinson’s or Alzheimer’s or MCI is a person, like all of us, deserving of respect. The diagnosis of a chronic illness doesn’t move someone into the category of patient, or Parkinsonian ( a term I detest), or “demented.” I have a 50% chance of developing Alzheimer’s by the time I’m 80. Will I then simply be “demented.” Will experts tell me what word search I should be doing to keep my brain as sharp as possible and what time I am suppose to play bingo? Or will someone, like Beth Meyer-Arnold or Jayne Busch, sit down with me to find out who I am? Will they respect me as a person, an individual with much to contribute. Because I hope for the later, I am happily giving my time to the Optimize program and the Engage program and anything that crosses my desk that will allow us to always make room for everyone.The 6th Annual Symposium for People with Parkinson’s and Their Families takes place on Saturday, September 14 at the Country Springs Hotel in Waukesha. Keynote speaker, John Bauman is a person with Parkinson’s who continues to “live well!” Numerous speakers and exhibitors, breakfast and lunch. $15 per person. To register call 414-805-3666.
Posted 1:38 PM
What It Feels Like to Think With Parkinson’s
Imagine writing your name as many times as you can in the course of 60 seconds. When people are asked to do this, they usually write anywhere from 60-250 letters in that one minute. When the same group of people are then asked to slow down and only write one letter for every 10 seconds they get frustrated. It feels weird and almost confusing. That feeling, many folks say, is how it feels to think with Parkinson’s.
Just as movement slows down with Parkinson’s, so can thinking. There is a lag time between a question being asked and answered. The answer will come — if the questioner is patient — but there is a somewhat slower processing speed and retrieval of information time than there used to be. When that “slower thinking” is combined with a masking or flat affect on the face and the possibility of a softened voice, sometimes communication changes dramatically. A big “disconnect” can occur when a person with Parkinson’s meets an old acquaintance. They think their face is smiling; but it’s not. They think they greeted the person warmly; but their voice was barely heard. The old friend asks a questions and it takes the person with PD just a bit longer than usual to answer. Suddenly the friend starts to wonder, “What has happened to my friend?” Parkinson’s happened to the friend and the signs being seen are not necessarily indicative of as serious of a condition as one might think.
Friends and family need to be educated. “’That darn Parkinson’s’ can cause my face to look flat even when I think I’m smiling.” “’That darn Parkinson’s’ can make my voice sound soft or raspy even when I think I’m talking loud enough.” “'That darn Parkinson’s’ can make me a bit slower in answering; but please be patient because I want to talk and share with you just as I always did.”
The fact that a person with Parkinson’s has to focus on voice, facial expression and processing and retrieval of information can result in exhaustion from doing things that someone else does easily. A person with Parkinson’s can have an identical day as their co-worker and produce identical results. The effort it takes to do so is much greater for people with Parkinson’s. Coming home feeling exhausted and frustrated is justifiable.
Friends and loved ones can make those difficult feelings less stressful. Sometimes waiting for just those extra couple of beats of the heart or ticks on the clock for an answer can make all of the difference. Feeling unable to keep up in a conversation can lead to withdrawal and isolation, and that can lead to depression. And, of course, a depressed person is much less likely to want to engage with others. Spouses particularly need to take every opportunity to set up one-on-one conversations each day. They need to commit to waiting for the response of their loved one with PD.
It’s hard to change the patterns of long term relationships. A once quick-witted loved one doesn’t become a slow-witted person. He/she is just less quick with the witty response. It is still the same person with the same information in their head. They may need some time to get that information from the brain to the mouth. Do you have the time?
Posted 1:11 PM
20-Year-Old Is Learning to “Live Well”
Dion attended the six week course "Living Well with Chronic Conditions" that I co-facilitated recently. During the first 2½ hour meeting, as we did introductions around the group, Dion cried when he described his chronic conditions which included epilepsy, a heart condition, a skin condition, being overweight and some depression. He is a 20-year-old who lives with his mom and sister and was referred to the class by his epileptologist.
Something happened when he cried. People listened. He was sitting beside a couple who have been married for 64 years. At 86, they know chronic conditions. There was another couple in their late 50’s, four single people in late middle age and one gentleman in his late 40’s. Men and women of varying ages with varying diagnoses listened to Dion and, in turn, he listed to them. That camaraderie and support is one of the essentials in the success of "Living Well" (known as "Chronic Disease Self-Management" by its authors at Stanford University).
Dion never cried again. He sponged up information. He “brainstormed.” He “problem-solved.” He set “action plans” each week that were achievable and action-specific. Dion practically jumped out of his seat at the beginning of each class to report on the success of his action plan. Dion accomplished the following and more:
- He started to eat a variety of foods with an emphasis on fresh fruits and vegetables.
- He started reading labels and realizing that “portion size” is something to attend to.
- He took out his bike for the first time in years and went for a ride with his sister. The next day he did it again and took a route with a hill that required more effort and commitment than he thought he had. He was so proud and had so much fun.
- He planned, practiced and then had a conversation with a friend that had been teasing and insulting him. He said, “I feel hurt when you say...” He reported that the friend was defensive; but Dion resolved that even if a friendship was lost, he was not going to permit that kind of bullying.
- He planned and practiced his next doctor’s visit, writing his concerns and being prepared to ask questions until he understood what the doctor was saying and the doctor understood what he was saying.
Is it possible to become empowered over the course of six weeks? On his class evaluation, Dion wrote, “This class changed my life. I thought I had no control over my life/my health. I learned that I have all the control.“
Dion acquired tools in the areas of physical activity, decision-making, breathing techniques, using your mind, understanding emotions, communication, weight management, healthy eating and working with health professionals that will allow him to break “the symptom cycle” of fatigue, poor sleep, physical limitation, pain, stress/anxiety, difficult emotions, depression and shortness of breath. These symptoms are common for most chronic conditions. People in the program learn through their classmates that a 70-year old with Parkinson’s has similar symptoms to a 20-year-old with epilepsy and a 50-year-old with MS.
And while Dion seemed to have the most dramatic awakening, everyone took something valuable away from "Living Well." Some people saw that, over six weeks, they could increase their exercise schedule and change their eating habits to realize a real difference in weight, breathing and even lab results. Some people realized that they could break a big goal into small steps to achieve it. Many people really loved the exercise on decision-making. They admitted that they often make knee-jerk decisions and then wonder how they got in the situation they are in. Stepping back and making a pros and cons chart and assigning value to each pro and con can lead to better decisions. While it was totally new to Dion, most people enjoyed reviewing the food groups and the current recommendations of how to divide up your plate.
Some people needed one topic more than another – sleep, medication management, fall prevention are good topics to study whether you currently need the help or not. This class of a dozen people with chronic conditions loved living well. They also seemed to love each other. And there was no doubt that they all loved Dion! "Living Well with Chronic Conditions" is offered throughout the year at Froedtert and is also available across the state. Visit https://wihealthyaging.org/ to view upcoming classes and locations.
Posted 2:18 PM
Missing My Mom
My mom, Mary Jane, died 8 years ago. Dec. 25 would be her 86th birthday. Several years earlier she suffered a stroke. She certainly was a candidate for a stroke. She smoked since she was 15; she handled stress poorly, mostly by drinking much too much; and her dad had died of a stroke in his early 60s. Additionally, she didn’t have any kind of a handle on other possible risk factors. She rarely went to the doctor so she wasn’t aware if she had blood pressure or blood sugar issues. She didn’t exercise, and her eating habits included a summer sausage sandwich on buttered white bread with a pickle and piece of cheese at 2 a.m. She consumed lots of salt and not many fresh fruits or vegetables.
One morning mom woke up with a terrible headache
. She never got headaches. She was alone. My dad left for church every morning long before she awoke. As she told it, she got up and was very imbalanced
. She kept bumping into the walls. She waited but nothing improved. She didn’t understand
that this was an urgent matter in which time was of the essence. Finally, when my dad got home, it was clear that mom was in trouble. 9-1-1 was called and she was taken to the hospital. Upon arrival her blood pressure was more than 200 over 110.
“Sudden” is a key word with stroke. Sudden changes in vision, speech and balance and sudden numbness are symptoms. “Time” is another key word. 2 million brain cells die every minute during a stroke. In the United States, stroke is the 4th leading cause of death and kills more than 133,000 people each year and is the No. 1 cause of serious, long-term adult disability. The Stroke and Neurovascular Program
at Froedtert & The Medical College of Wisconsin is a Primary Stroke Center as designated by The Joint Commission. It was the first such center in Wisconsin and one of the first in the nation. The Froedtert Acute Stroke Team (FAST) is ready 24 hours a day to respond to the needs of stroke patients, quickly, and if necessary, with new and emergent treatments that are not always available elsewhere. The physicians and other staff are unsurpassed. And the programs here for stroke rehabilitation include physical medicine and rehabilitation physiatrists, physical therapists, occupational therapists and speech therapists, psychologists, psychiatrists as well as patient and family support groups.
Mom did go to a rehab center. She did regain most of the physical losses she had experienced. She could walk and talk, but she couldn’t think nearly as well as she did before. She loved words and could no longer play scrabble. She watched "Jeopardy" and "Wheel of Fortune" but didn’t beat the contestants to the answers any more.
She really suffered the psychological effects that can come with stroke. About 50 percent of people who have had a stroke experience depression. Sometimes it can last for as long as three years. Her doctors tried any number of meds and even an in-patient stay for depression. Her primary care physician finally concluded that something in the area of her brain that affects mood and motivation was damaged. Her depression was intractable.
I miss my mom. I miss the way she was before the stroke: Cadillac-driving, cigarette-smoking, vodka-drinking, poker-playing, hard-driving, business-savvy woman. That was her identity and it did not include thinking about “risk factors.” It’s impossible to connect that Mary with the thin, weak, apathetic, frightened person she became.
Could it have been prevented? She could have addressed the risk factors and quit smoking, drinking and worrying. She could have stopped avoiding doctors. She could have started exercising, eating right and finding ways to reduce stress.
If she had the stroke anyway, would it have made a difference to recognize the signs of stroke and come directly to Froedtert (she went to a closer, community hosptial)? YES! Quick treatment leads to better outcomes.
As I struggle with my own risk factors including, obviously, family history, I know that I will or my loved ones will respond FAST if this happens to me. I have a large refrigerator magnet that lists the steps to take:Face
– Does the face look suddenly asymmetrical, especially if the person tries to smile?Arms
– When asked to raise both arms, does one drift downward?Speech
– Is speech slurred or abnormal?Time
– Did this happen suddenly? Time is of the essence. Note the time that the symptoms first appear. There are some treatments only available soon after the symptoms appear.
Posted 12:15 PM
The 2012 Ride/Walk for Parkinson’s started out as a chilly, overcast day; but the warmth of the participants filled everyone’s hearts! More than 350 people rode or walked to raise money for the Parkinson’s Program at Froedtert & The Medical College of Wisconsin including the three Parkinson’s specialists here in Neurology, Karen Blindauer, MD, Brad Hiner, MD and Katie Spangler, MD.
We proved that family and friends trump disease and that exercise is good for – and possible for – all of us! With over 50 volunteers the day went smoothly. We even had a Medical College anesthesiologist, Zeljko Bosnjak, doing magic tricks in the Children’s Area! The kids were spellbound! Thanks to all who sponsored, donated, volunteered, and participated.
Posted 3:29 PM