Five MSAA Resources for Care Partners

MSAA strives to be a leading resource to the MS community by providing free programs and services. But did you know that MSAA’s free programs and services aren’t just for individuals with MS?  Here are five MSAA resources that care partners can take advantage of, too:

  1. MSAA offers in-person educational programs about a variety of topics related to living with multiple sclerosis that are hosted throughout the country. These programs are presented with guest speakers who are experts in their fields, allowing attendees the chance to ask direct questions from the people who know best.
  2. This blog! MS Conversations features blog posts from many wonderful guest bloggers who are able to give insight and a voice to how individuals with MS experience their disease.  While everyone’s disease course and symptoms may be different, their posts offer unique perspectives that only a person living with MS can provide.
  3. MSAA’s award-winning publications are not just helpful for individuals with MS. These publications feature detailed information about various topics including: a general overview about multiple sclerosis, different therapy options, MS relapses, MS progression, and more.
  4. My MSAA Community, the free online forum where people can feel free to share information and experiences with other friendly and supportive members. Care partners are welcome to share their questions and get answers from other members of the MS community who may have had similar experiences.
  5. Feel free to also call MSAA’s toll-free Helpline at (800) 532-7667, ext. 154 to speak to one of our Client Services Specialists who are there to help answer any questions and offer additional resources if they are needed. Our Client Services Specialists can also be reached via our online chat feature, or via email at MSquestions@mymsaa.org
Share

Care of the Care Partner

For most people with a chronic disease like multiple sclerosis, the biggest piece of your support network is your care partner.  Care partners – whether they be a best friend, a spouse, a sibling, a parent, or other family member – are an essential part of any support network.  But like the people they care for, care partners need help and resources to care for themselves and prevent care partner burn out.

The Family Caregiver Alliance reports that 1 in 10 care partners has experienced a decline in physical health as a result of caregiving.  Due to the stress and daily struggles of life with a chronic disease, many care partners choose to spend their time and energy on their partner’s health and wellbeing, rather than their own.  Some small, but very important things that all care partners should do for themselves to prevent health decline are:

  • Make appointments with doctors and dentists for regular checkups and screenings.
  • Have routine medical testing done such as checking cholesterol levels, blood pressure, mammograms, or prostate exams.
  • Make sure to get enough sleep. It is much easier to focus on tasks of the day if you are well rested.
  • Maintain social interaction with friends and family who are important to you.
  • Make sure there is still some “me” time. If you have a hobby that you enjoy, be sure to keep up with it, even if only in small increments.

Most importantly, care partners should always feel comfortable asking for help.  Sometimes, one care partner is not enough and they need a break.  Sometimes, an individual with MS needs specific kinds of help that requires a specialist.  Resources are available for individuals with MS and their care partners for these situations, and many more.

To learn more about care partner resources, challenges, and care partner stories feel free to read over our cover story from the Summer/Fall 2014 edition of The Motivator, Care Partners: The People Who Make a Difference in Our Lives.

Share

Planning for a Doctor’s Visit When You Have MS

rsz_doctor_and_patient_team_graphic

Being prepared and asking questions may assist in the overall care you receive at your doctor’s appointment. Taking control of your medical care by finding your voice and advocating for your health will help you to feel more involved in your health care decisions.

Well before your appointment, get in the practice of writing down questions you wish to address with your doctor. A journal or binder can be used to keep track of these appointments. Sometimes it is helpful to have one binder for all medical professionals so that you can review notes from all appointments. Dividers or clips can help organize one doctor or specialist from the next. If questions come up for your primary care while you are visiting with the neurologist, you can add them to the section for the primary care.

Before the appointment, prioritize the questions that are more important at that time. Often appointment time is limited, so by prioritizing the questions, you will assure that what is most important to you at that time is what gets addressed.

It can be a challenge to manage the patient-doctor relationship, especially if your doctor is not used to you asking questions. You certainly do not want to come across as aggressive by demanding the doctor answer questions. Before the appointment, make the doctor aware that you would like to discuss some concerns. By being upfront with the doctor, he or she can make sure there is enough time. Some doctors may prefer to follow-up and discuss questions through a phone call or e-mail.

Asking questions is important but so is making sure you hear and understand the answers you get. Taking notes during an appointment can help to clarify things after you have left the office. Having a care partner or family member at the appointment may also help in remembering some of the details of what you heard. If writing is a challenge, perhaps try using a voice recorder (with the doctor’s permission) to help re-play what was said during the appointment.

If you are having trouble understanding or are confused, ask your doctor to explain again. Ending your appointments with a summary can help to ensure that the doctor hears that you have understood the directions or information provided to you.

If there is something you are not sure about, ask for more information. Many doctors’ offices provide brochures, or educational materials that can describe a treatment or symptom. If the office does not provide these things, ask where you may find them. Perhaps you can reach out to one of the MS organizations to learn more about a particular treatment or symptom, or ask for information to be mailed to you.

By taking a more active role in your health care planning and decisions, you may feel more positive about the control you have over the disease.

How do you plan for your trip to the doctor or specialist?

Share