As a member of the PD wellness community you are interested in feeling your best. Of course what it takes to do your best, for you as individual
, will be unique and different from others. There are, however, certain overriding themes that apply to everyone facing a chronic illness wanting to feel their best. These themes can be divided into Awareness, control, proactive management, and personal wellness.
Arm yourself with information about your PD. Having an awareness and understanding of what is happening to you as a person with PD will give you the power you need to manage, adapt, adjust or reduce your symptoms. This is the first step in taking control and feeling a sense of empowerment. You can now take this knowledge and empowerment to manage your illness, improve your health and find a new sense of personal wellness.
Parkinson’s disease is a lifelong condition and you will experience changes from PD in addition to changes that occur with aging. Paying attention to your health and wellness with PD is a lifelong commitment and the path to take in this journey will change overtime as well. Many of us know what we want and ‘know what to do’. Continued motivation for positive change is an important part of living your best and adapting to changes and challenges. Research reveals that a motivated patient is more apt to be proactive in making positive lifestyle changes to improve quality of living, self esteem, emotional wellbeing and sense of fulfillment in life despite disease. Staying motivated is a challenge in itself. This can be especially difficult if you have depression, fatigue, apathy or increasing difficulty with movement. The following information can help you keep your motivation ‘alive’.
Treat depression or other mood problems. People with PD can feel depressed, anxious and apathetic (perceived as a significant loss of motivation). These symptoms color the very way we see our world and make it difficult to stay motivated when positive change does not seem possible. Depression and anxiety are treatable whether it is caused by feelings or experiences of loss and uncertainty or a symptom of PD itself. Share your feelings and concerns with your loved ones and your doctor or healthcare provider. Seek treatment if needed as the first step in accepting the possibility for positive change.
Take these steps toward motivation. Research tells us that one’s motivation for positive change will improve if the following are present:
1. Identify that you have a problem that has or can produce negative consequences.
2. Decide that you intentionally want to change.
3. Believe that the solution to the problem will have positive benefits to you.
4. Believe you have the ability to make these changes.
5. Remove any barriers or obstacles for change than exists for your old behavior (or doing nothing).
The following example illustrates how John and his doctor worked together to motivate John for success. John has had PD for 3 years. He is complaining that he is now experiencing slowness with walking. This problem now has negative consequences because he is concerned about his future when he will no longer be able to take walks with his wife (Step 1). He talked to his doctor for help because this is both a worry and something that is very important to him (Step 2). She prescribed a new medication regimen and he noticed some improvement but the problem still persisted.
John’s doctor asked him to rate how important walking was to him on a scale of 0 to 10 with 10 being most important. John stated “10.” His doctor requested that John see a physical therapist to begin an exercise program to help walking and balance. John knew from his discussions with other patients that exercise with a focus on balance would improve his strength, be good for his heart and help his balance. However, he was not sure that physical therapy would help. He reminded his doctor that he already tried physical therapy one year ago and did not feel it helped but admitted to the fact that he did not do the recommended exercises prescribed by his therapist.
John’s doctor stated, “Your rating of 10 means that the ability to walk is extremely important to you and something you would like to change. Using the same scale (0 to 10) rate how confidence you are that you can make changes to improve your walking”. John rated his confidence as 3 given his prior experience with physical therapy. Fortunately, John’s doctor understood the John needed help to make the needed changes. He did not believe in the power of exercise because prior attempts to start an exercise program were short lived as they did not lead to immediate results. Together they reviewed the positive benefits of exercise both immediate and long-term. She emphasized the value of exercise in reducing the impact of future changes in walking since this was his primary worry. John knew that exercise was beneficial; felt that he would give physical therapy ‘a second chance’ but now with the knowledge that he was ready to make necessary changes in his lifestyle (Step 4).
John, empowered by his new gained knowledge, expressed his worry that he would start the exercise but lose interest overtime. Together with his physical therapist, John identified the following barriers to exercise: he had never been active or athletic, he did not have a lot of time, experienced fatigue, had limited time, and was tired all the time. John also identified some experiences that motivated him to make a change. He stated that when he did exercise he felt a sense of improved self esteem and control knowing he was “doing something for his health and PD.” John also was inspired by an article he read about a women at age 86 who when diagnosed with PD decided it was never too late to make a difference and began a yoga class.
Since he had little time, fatigue and limited experience with exercise, John and his therapist designed a simple and short exercise program with the first goal of establishing a habit of exercise. This time he would find the support and inspiration to make this a lifelong change (Step 5). He set small goals for himself beginning with the goal to exercise 5 minutes a day and asked his wife to help support him and succeed in this first step. He found an exercise group geared towards motivating adults to exercise at his local community center. He also engaged people in his support group to share their exercise experiences offering both inspiration and support to him and the entire group. John now serves as a source of encouragement for others by organizing 5 minutes of exercise with members of his support group at the beginning of each meet.
Improve your success by encouraging those around you to find the motivation to begin and sustain their own change. Like John, you can use these steps to make your positive lifestyle change. First, rate or prioritize how important the problem is to you. Then rate your confidence in making changes to improve the problem. Identify any key barriers or motivators that exist to prevent or support change. Get as much information as possible related to your problem and its solution from your healthcare providers, written literature, community specialists and others with similar experiences. Seek the support and involvement of your family, friends or healthcare provider if you do not know where to start or are concerned that you will not be able to sustain positive change on your own. Don’t worry about getting there ‘overnight’. Begin with small changes to establish the habit and build on these changes over time. Find inspiration in the stories and experiences of others. Share your own experience so that you may be an inspiration to others!
Author: Monique Giroux, MD
Copyright 2011 Northwest Parkinson's Foundation Wellness Center