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
The 5th Annual Symposium for People with Parkinson’s and Their Families held Sept. 15 in Waukesha was a success with 350 attendees, 20 exhibitors, marvelous food and conversation!
People heard from Andrew Feigin, MD, on current research in the field of Parkinson's, and while some folks thought it was a bit “over their heads,” they were grateful to learn about the advances in the field and all of the treatment options in the pipeline.
Christa Lassen-Vogel gave a practical and encouraging talk on taking control of Parkinson's as an individual through the committed incorporation of exercise, understanding the nuances of the disease and good communication with your provider. Patrick Dean gave a moving presentation on care-giving and grief, focusing on keeping joy in our lives despite the losses.
|Our own Karen Blindauer, MD, director of the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin, really stole the show with her detailed, comprehensive talk on just what is causing the variety of symptoms that can manifest as part of Parkinson’s. The fact that many of these symptoms develop years before a diagnosis of Parkinson’s is made makes finding a cure so very challenging.
From left, Christopher Sheridan, RN, program coordinator of the Parkinson’s and Movement Disorders Program, and Drs. Karen Blindauer and Katie Spangler.
You may have noticed the graphic at the top of this blog for the Moving Forward ride and walk. To enable us to provide community education events like the symposium to you at an affordable price we hold a fund raiser once a year. Please register to participate, donate or volunteer at the active.com website
Our young onset Parkinson’s patient, Maureen Gile, and I were on the Morning Blend
last week talking about this event.
Posted 2:57 PM
A Well-Developed Program
What does it mean to be “a program?” Let me give you an excellent example. The Parkinson’s & Movement Disorders Program
here at Froedtert & The Medical College of Wisconsin has a large, interdisciplinary team serving the needs of patients and families with Parkinson’s and other movement disorders. There are three physicians, Karen Blindauer, MD, Brad Hiner, MD, and Katie Spangler, MD. They are each neurologists who have specialized training and experience in movement disorders.
All of the nurses and neuro-rehabilitation therapists (physical therapy, occupational therapy and speech therapy) have specialized training in Parkinson’s disease. The team uses the services of a neuropsychologist, clinical psychologist, psychiatrist, registered dietician, social worker, research coordinator and outreach coordinator as well as a neurosurgeon and his team who handle deep brain stimulation
(DBS) surgeries. DBS is a treatment option for about 15 percent of people with Parkinson’s as well as for people with essential tremor and dystonia.
These people meet every week to improve service to patients, to discuss candidates for DBS and to learn about community resources for our patients both inside and outside the Froedtert & The Medical College system. Working together and supporting each other is an essential component of teamwork.
A new patient is educated about their disease through written information and a "Newly Diagnosed Orientation." Annually, there is a symposium for People with Parkinson’s and their families. Sept. 15, 2012, is the date for this year’s symposium at the Country Springs Conference Center. Over 400 people attend. Currently there is still space available. To register, call 1-800-272-3666. The program is rich again this year with Andrew Feigin, MD, movement disorders neurologist from the Feinstein Institute for Medical Research of the North Shore-LIJ Health System in Manhasset, NY, speaking on genetic therapy for Parkinson's. Christa Lassen-Vogel from the Davis Phinney Foundation will outline holistic approaches to managing Parkinson’s, and Patrick Dean, founder and director of the Wisconsin Grief Education Center, will conduct a caregiver-only breakout session on the small and continuous losses that people experience — and grieve for — when living with a loved one with Parkinson’s. Dr. Blindauer will give a fascinating look at Parkinson’s “under the microscope.” The research of Dr. Heiko Braak will be discussed along with non-motor symptoms of Parkinson's. It’s clear that there is often a lot more going on than simply a loss of dopamine and Dr. Blindauer will explain this. There are other talks and exhibitors that provide services and goods that make life easier for people with Parkinson’s. It’s the best deal around for $10 including breakfast and lunch!
Patients and families receive support in many forms. There are 5 Parkinson's support groups, one essential tremor group and one Huntington’s disease group on campus and in the community. The services of the team social worker, psychologists and psychiatrist are utilized. Our community outreach coordinator also serves as a one-on-one contact by phone and in clinic with families that are struggling. Caregivers are of special concern for the program. If they “go down”, the whole ship sinks! The monthly caregiver support group is well-attended as is the Caregiver Holiday Tea. This year, on Saturday, Nov. 10, the program will present “A Survival Training Workshop for Caregivers” of people with Parkinson’s, Huntington’s and other movement disorders. The program offers support for the Huntington’s Disease Society of America’s state conference and is planning a social event for people with Huntington’s in their 20s 30s and early 40s with the hope that these folks would meet more regularly. The program will be at the Country Springs Conference Center in Waukesha. The fee for the event has yet to be determined, but it will be no more than $20. Call 1-800-272-3666 to hold a spot.
Financial support is also offered to various community exercise programs for people with Parkinson’s because exercise can reduce stress, improve balance and flexibility, and hold some symptoms at bay. Additionally, group exercise promotes socialization, which is so good for the brain and the spirit.
How does all of this get paid for? The program offers the Symposium (for a minimal $10 per person); pays professional support group speakers; distributes loads of books and other written and other video materials; sends nurses and therapists for training in the latest treatment programs for Parkinson’s; makes financial contributions to four Parkinson's exercise/dance programs in the area; and this year, brings in a national speaker to work with our caregivers.
Once a year, the program raises funds. Moving Forward: Ride/Run for Parkinson’s
is a day for people with Parkinson’s and their friends and families. No one talks much about Parkinson’s. People just have fun — exercising and socializing, eating and playing, entertaining their children and grandchildren. This year, Moving Forward: Ride/Walk for Parkinson’s takes place on Sunday, Oct. 7 from 8:30 a.m. to 1:00 p.m. in downtown Dousman. This will be the 4th Moving Forward event. Each year all of the money that is raised is spent on education and support for people with Parkinson’s and their families. Consider coming or donating to Moving Forward at http://www.active.com/event_detail.cfm?event_id=2039260
. Or contact me at vconte "at" mcw.edu.
Posted 2:29 PM