Empowering People with MS: An Interview with Patricia Kennedy
A few years ago I worked for The International Organization of Multiple Sclerosis Nurses. It was my great pleasure to work with many dedicated and compassionate nurses who worked tirelessly for people diagnosed with MS. One of these nurses was Patricia Kennedy, a nurse practitioner, educator and programs consultant at Can Do Multiple Sclerosis (formerly The Heuga Center for Multiple Sclerosis in Edwards, Colorado.)
Pat is a true renaissance nurse as far as working for people with MS. Her talents stretch from working at a comprehensive MS Center for 25 years while working at Can Do, becoming a newly elected President for IOMSN, and now an editor of a new book entitled, “The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment.”
As I read about the new publication of the book I thought it would be interesting to interview Pat for all of us. Hang on to your hats (if you have any on!) while you read about Pat, her work, and the exciting programs she offers through Can Do! Perhaps you or someone you know would be interested in taking part in them.
(SPOILER ALERT: Pat sounded so proud and excited in her emails about each of the programs at Can Do that she requested we speak on the phone about them. Despite Hurricane Sandy interrupting our plans we finally connected, and I am thankful we did. Hearing her voice as she described these programs got me excited about how they have helped countless of patients and their support partners over the years. We sincerely thank you, Pat, for all you do for us!)
Pat, can you tell me a little bit about your background?
PAT: I am a nurse practitioner and worked for 25 years at a comprehensive MS Center. I also, during that time, worked as a consultant for Can Do Multiple Sclerosis. I joined the full time staff there about 4 years ago as a nurse educator and programs consultant. I am involved with developing programs for people with MS and their support partners. We just published a book for which I was the editor. I speak for many of our programs and speak for many other programs (Continuing Medical Education) around the country and abroad for both people with MS as well as professionals.
What is the mission of Can Do?
Our mission is to educate people to feel empowered to live their lives more fully with MS. To be ‘more than their MS.’ To change their lifestyle to promote better overall health which will make the journey with MS less challenging.
In the Foreword of your new book it says that the book ‘aims to provide a foundation for helping the person with MS to be in charge of their health care.’ Can you expand on this a bit by telling us how you believe we need to take charge of our MS?
People with MS should not feel victimized. There are choices they can make concerning how they care for themselves, care for their MS and promoting a better quality of life. Initially, most people feel they have lost control. In some aspects they have. But there are many aspects that people can regain control of which includes caring for themselves and improving their lifestyles.
What does the term ‘lifestyle empowerment’ mean?
Lifestyle empowerment means looking beyond ‘chronic disease’ and all that entails and requires. Once you can see further, you feel as if you do have control and can choose to add other things to your life because that is good for you and your quality of life.
As a nurse working with MS patients for the past 25 years, what is the biggest change you’ve seen in how physicians and nurses are able to treat their patients?
In my experience with caring for people with MS, the biggest change we have seen is having something to treat them with to gain control over the effects of the disease. In addition, we are much more apt to encourage our patients to improve many aspects of their lives and symptoms to empower them to move ahead.
Among the many ‘hats’ you wear, you are a nurse educator at Can Do Multiple Sclerosis. What programs are available there that you think other MS Centers around the country should make available to their patients? Can you tell us a little about the programs that you have available?
The programs we offer are available to anyone in the country but would be provided by us. It’s a whole philosophy that cannot be transported to be done by someone else. It’s not magic, but when you put all the parts together, it works. Our goal is to make people more aware of our programs and then to make them portable to come to a ‘city near you.'
Under the umbrella of Can Do MS we offer a number of products (called JUMP START), typically revolving around a topic with a keynote talk, and also breakout workshops with approximately 50 to 75 people. We encourage people with MS to bring a support partner – that is a very important component of our programs. The programs are a way for someone to hear a different way of looking at MS, looking at the possibilities of having MS rather than the challenges attached to it. This is a way toward improving their quality of life, to make themselves happier and to look at MS in a more positive way. They will begin to see how they can do something in spite of having MS. It’s called ‘A Jump Start”. This program typically lasts from morning until 3pm and includes a break for lunch.
There are also webinars that are offered monthly, giving another chance to become involved for people who are busy or homebound. There are typically 2 to 3 professionals on each call that may include a physical therapist, occupational therapist, nutritionist, neurologist or a nurse. They discuss how to face problems people with MS face, looking at it from a broader perspective, reviewing issues such as fatigue or what the proper diet should be. One discussion could focus on patients who are hesitant about taking an oral medication, and different approaches on that issue could be offered.
In 1984 a four day program (called CAN DO) was established for people and their support partner to gather in a hotel and attend lectures, workshops, hands on one-on-one sessions with, say, a therapist or physician. The expertise the patient receives is very uplifting. People say they now have a chance to sit down and talk to a doctor about anything from cognition to moving better to asking about better exercise programs.
Another brand new program is called “TAKE CHARGE” for people who say they don’t have four days to spend on one program. It takes place over one weekend and tries to capture some of the same results as the four day program.
The basic philosophy is that people should be empowered and can be more than their MS and step out of it and move on with their lives. If someone says they can do something, then they can do it!
The professionals we get for these workshops come from all over the country. Magic goes on when they all get together.
Cathy Chester is the author of the blog An Empowered Spirit.