Anyone else out there…?

As we’ve just finished a very active MS Awareness Month here at MSAA we wanted to take some time to talk about support networks and positivity for this month’s blog theme. When dealing with an illness like MS, its helps to create and focus on connections to others within the community, to know that one is not alone in what they’re experiencing. From our Ask Me Anything events in March we saw lots of similarities in what others were asking when it came to their MS symptoms and disease course. On MSAA’s Helpline we often receive calls from clients asking ‘Am I the only one who’s experienced this?’ ‘Is this normal for MS?’ ‘Does anyone else have this issue?’ And we consistently find ourselves validating all of these questions and concerns, because the fact is that individuals are not alone, as there are many others out there wondering the same things.

I think the feeling of knowing you’re not alone in a challenging experience can help to quiet the fears, concerns and anxieties that accompany it. Asking if there’s anyone else out there going through the same thing and learning that there is, can make someone feel more validated and less isolated. This is why having a support network is so vital, and not only to connect with during difficult times but also to share good times with as well. It’s comforting to vent, cry or scream in times of strife and have others listen, but it’s also important to relay positive experiences, humorous moments and celebratory occasions with those in your circle. Life will have its ups and downs as these inevitably come with the ride, so sharing in the ups when they do occur can help combat the downs. If you find yourself feeling alone and asking questions just keep in mind that you’re not, and there are others out there asking too.

Share

My MS Journey – Jessica’s Story

One of the hardest things about unexpected change is suddenly having a ton of questions and not enough answers, particularly when you are newly diagnosed with MS.  Questions can range from: “what is multiple sclerosis and what are its symptoms?” to “how is MS treated?” to “what does having MS mean for your life?”  However, these questions are never limited to someone recently diagnosed with MS.

My MS Journey is a resource for people at all different stages of their life with multiple sclerosis.  There is “Just Starting Out” for the newly diagnosed, “Staying On Course” for people who are more familiar with how MS affects their body, and “The Seasoned Traveler” for anyone who has lived with MS for a longer time and may be looking for different information.  All three sections of My MS Journey offer a listing of resources including videos and articles to help answer questions as life continues to change around us.

Check out Jessica’s story above for how she felt after being diagnosed with MS.

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