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Timothy L. Vollmer, MD
Department of Neurology
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Department of Neurology
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The support from a nurse is often invaluable for those living with relapsing MS

Claire Mayone

Nurses are critical to patient care and with more than 3.1 million registered nurses nationwide, they make up the largest component of hospital staff in the United States.1 This incredibly demanding job is performed by arguably the most dedicated, compassionate and hardworking men and women in the healthcare industry—and Claire Mayone, RN, is no exception. Claire works as a multiple sclerosis (MS) specialty nurse, and has devoted her career to helping improve the lives of people living with the chronic disease. Claire’s passion for teaching others how to manage their MS is also personal—her husband was diagnosed with the disease and she had to take on the role of care partner in addition to MS nurse.

MS, an unpredictable and often debilitating disease, affects the central nervous system, disrupting the flow of information within the brain, and between the brain and body.2 Claire advises her patients that while relapsing MS is a very different disease for each individual, symptoms can take a dramatic toll on everyday life, sometimes causing people to lose their ability to read, think clearly or even walk. In some cases, such challenges may require constant care from others.

No matter how serious one’s symptoms are, all people living with relapsing MS can benefit from some type of support. MS One to One®, a free program by Genzyme, provides 24/7 personal attention for people living with relapsing MS through one-on-one conversations with MS nurses, including Claire. MS One to One nurses give tailored tips and information to people living with relapsing MS and their care partners. They also help people understand what they can expect from their Genzyme treatment and how to manage treatment expenses.

Claire and other MS One to One nurses provide expertise, support and understanding to patients and their care partners by developing real and personal relationships with each member of the program they meet. “There is a lot more to relapsing MS than just the physical part—there is also incredible emotional stress. I am often able to read between the lines and help validate what my patients are feeling, and then we go from there,” says Claire. “I have their best interest at heart. I’m there to answer questions, offer advice, and act as a close friend who is familiar with their MS.”

Receiving a diagnosis of relapsing MS can also be an overwhelming experience. Claire often works with newly diagnosed patients who are struggling to understand and accept their diagnosis, and wondering how best to manage their disease. Here Claire shares her top five tips for people newly diagnosed with relapsing MS:

  • Knowledge is power – Educate yourself about the illness and about the disease modifying treatments (DMTs) available to help treat your relapsing MS. Do some research, reach out to other people living with relapsing MS, and talk to your healthcare provider about what works for you. Keeping a positive attitude works wonders.
  • Make the most of your medical appointments – Make sure you are prepared for all appointments. Keep a journal to jot down your symptoms and questions or concerns as they come up, and take it to the meeting so that you don’t forget to bring it up. Take notes when speaking with your healthcare provider, or ask if you can record them. Bring a loved one to the appointment with you for extra support.
  • Speak up – You are the only one who knows what works for you. When choosing a DMT, make sure your doctor understands your treatment goals. Are you currently working full time? Are you planning to have children? Tell your healthcare providers what your plans are and the commitments you are willing to make for treatment. Be honest and let them know the puzzle pieces to your life so that you can work together to choose a DMT that is best for you.
  • Be patient with your family and friends – Recognize that relapsing MS is difficult to understand if you are not the one living with it, but that your family and friends are there to support and love you. Communicate regularly and tell them when you are and are not feeling well. Once they know how you’re feeling, they can be more aware and sensitive to your needs and wishes.
  • Get connected with the MS community – In my experience, the MS community is one of the strongest and most supportive groups out there and it is incredibly welcoming. Get online and find your local National Multiple Sclerosis Society chapter—don’t be shy about attending meetings and events! Social media is also a great way to get connected with other people living with relapsing MS and learn about how others cope with their illness. Sign up for MS One to One and open the door for professional support. Sharing your experiences with people who understand what you’re going through can be extremely gratifying.

Story Source: The above story is based on materials provided by BUFFALOREFLEX
Note: Materials may be edited for content and length

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