Age has its rewards. Now that I’m in my late fifties, I have a wealth of experience to draw on when dealing with new situations—whether a celebration, a job interview, or seeing a doctor for the first time. Each time it gets easier as I learn to draw on my past.
Drawing on our experiences is essential when building a healthcare dream team. It starts with your general practitioner, who plays a central role overseeing all aspects of your medical needs. That’s why I keep my GP informed of any changes in my MS, my prescriptions, and appointments with other doctors.
After diagnosis, that first step into the neurologist’s office takes more courage than you may think you possess. When you enter prepared with questions and a willingness to take charge of your disease, you are already a winner. You, after all, are the reason he or she is there. The neurologist analyzes the tests done by nurses and physical therapists, performs his or her own tests, prescribes medication, asks and answers questions, makes suggestions, and sets the course of your treatment. Maintaining a dialogue with your neurologist is central to building your team.
The nurse, who takes your blood pressure and weight, checks your gait, and performs other tests, is another building block. Nurses act as a resource for call-in questions and are a vital communication link between you and your doctors. Starting a dialogue with your nurses gets them on your team. That’s why I always ask them the reason for the tests. If my gait is being tested, for instance, I make sure I understand in advance how far they want me to walk and whether or not to use a cane.
My relationship with nurses became particularly important when bladder control was a concern. When I called for an appointment, she asked me to come in at noon the next day so she and another nurse could check me out. “Drink a full bottle of water, before you arrive,” she advised. I followed her instructions, and while all the rest of the staff were at lunch, the two nurses did an ultrasound test of my bladder. My bladder was full, and when they were pressing on it, we shared a moment of laughter. At my next doctor’s appointment, the nurse suggested that I should go to the bathroom more often rather than wait until the last minute. The time spent with those two nurses proved to have been time well spent.
A few years ago, my neurologist recommended physical therapy to undo some bad habits I had developed while trying to cope with spasticity. I had been using a cane in my right hand, since my right side is weaker. When the therapist suggested switching the cane to my left hand, my walking improved immediately. I also learned how to identify the weak spots in my legs and hips, and I discovered new exercises that increased my strength. Learning is a step-by-step process.
When dealing with your doctor, the office staff are the first and last people you see when you visit. So it’s wise to learn procedures for all aspects of appointments, such as ordering prescription refills and getting to know what the staff needs you to do at each appointment. Take time to watch them in action so you can learn the office dynamics. This knowledge will help you and the office staff work efficiently and productively together.
In 1987, the Internet was nonexistent and very few books were available on MS. During those months that the doctor was watching my symptoms, I was in limbo, without a name for my odd physical symptoms. When he asked if I knew anything about MS, I had to admit that I didn’t. Afterwards, I went to the library and looked it up. Naturally, I found nothing.
The situation today is very different. And, although I warn people about information overload, information is power. We learn to sift through what applies to us and are better informed for future experiences.
Also, as you adapt to the changes in your body, new questions begin to arise. When I started experiencing leg spasms 15 years after my diagnosis, I was taken by surprise. I had never experienced spasticity or pain before and didn’t even know what it was called. All I knew was that my legs were like rubber bands that were unable to unfurl and relax. When I called my doctor, he explained what was happening and prescribed a muscle relaxant. Once I had a name for the symptom, I was able to research it on the Internet and find out about treatments and exercises that could relieve the stiffness.
Looking at the large picture of our lives, we spend most of our time without a doctor or nurse nearby. Therefore, during the remainder of the day, it’s up to us manage our care. So when building your dream team, it’s important to keep in mind that you are a key player. Taking an active role in your medical care keeps you at the center of all activities. Ask questions, answer questions fully, gather information, make suggestions, and listen to the suggestions of others and keep track of progress and setbacks. Life is full of surprises, and when one slaps us in the face, we need to know where to turn for guidance. If we have our team in place, we won’t face challenges alone.