Shared Experiences: Things Only Someone With MS Would Understand

Posted on October 7, 2024 by MultipleSclerosis.net

Living with multiple sclerosis (MS) can feel lonely. It is hard for others to understand the spectrum of MS symptoms. Fortunately, there are communities to connect with others navigating MS! It makes the journey feel less isolating.

MultipleSclerosis.net recently posted the following:

“Fill in the blank: ______ is something that only someone with multiple sclerosis would understand.”

This question clearly resonated, as there were over 350 responses! Among the comments, some common themes emerged.

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Fear of Falling With MS

Posted on September 23, 2024 by MultipleSclerosis.net

A concern for many people with multiple sclerosis (MS) is the fear of falling. Loss of balance with this disease makes falling a common problem. But many find that slowing down, walking carefully, and learning to get up safely after a fall can be helpful.¹

MulipleSclerosis.net recently published an article that highlighted some of these trials. Given the reaction it received, it clearly resonated with lots of people! Here are some of the themes that people shared in response to the article.

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How MS Messes with Speech

Posted on August 19, 2024 by MultipleSclerosis.net

One frustrating symptom of multiple sclerosis (MS) is the cognitive impact. Those of us with MS often struggle with memory, recall, and speech. When words vanish, we get creative in communicating!

MultipleSclerosis.net posted the following prompt to the community:

“MS can mess with our word recall and speech function, making remembering the names of people, places, and things difficult. If only there was 1 word for it all. We want to know, what would your word be? Example: ‘Can you please hand me the _____ over there?’ Philadelphia natives might throw the word ‘jawn’ in there!”

There was a lot of engagement with this topic!

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To Drive or Not to Drive With MS

Posted on July 8, 2024 by MultipleSclerosis.net

Living with multiple sclerosis (MS) changes many things in life. The impact of symptoms on the body makes certain tasks more difficult. For example, driving becomes more challenging as MS progresses.

We recently asked the MultipleSclerosis.net community, “Has MS altered your driving habits?”

There were many insightful replies about how MS impacts whether and how a person continues driving. Some respondents still drive, and others do not. Here is some of the community’s perspective in their own words.

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What Others Should Know About MS

Posted on June 17, 2024 by MultipleSclerosis.net

Living with multiple sclerosis (MS) is full of challenges. Those without MS may not realize the ways the disease impacts life.

MultipleSclerosis.net recently asked members of the community to “Fill in the blank: I wish more people understood ____ about MS.”

There were many insights from the responses!

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Advice for Friends and Family Supporting Someone Receiving an MS Diagnosis

Posted on May 6, 2024 by MultipleSclerosis.net

When a loved one receives a diagnosis of multiple sclerosis (MS), learning how to support them is vital. To learn what type of support people living with MS most value, we asked the MultipleSclerosis.net community:

“What advice would you give to friends and family who want to support someone receiving an MS diagnosis?”

The community shared lots of helpful insights!

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Exercising and Moving With MS

Posted on April 24, 2024 by MultipleSclerosis.net

So much can change in the body following a multiple sclerosis (MS) diagnosis. The toll MS takes on moving the body is significant. A forum on MultipleSclerois.net asked members for their insights to several questions:

How has MS impacted exercise or bodily movement for you?
Are there exercises or movements that seem to work really well for you and, alternatively, some movements that are difficult to do now?
Have you had to modify any movements? If so, how?
How do you set yourself up for success when moving your body?

There were many valuable responses!

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How to Get Your Doctor to Listen

Posted on March 28, 2024 by MultipleSclerosis.net

Doctor visits are never easy. Appointments can feel rushed, leaving you feeling unheard and unsupported.

To find out what works best when folks with multiple sclerosis (MS) see a doctor, we reached out to the MultipleSclerosis.com Facebook community. We asked, “How do you get your doctor to actually listen?”

More than 150 community members shared some great tips for those who may be feeling frustrated at their doctor appointments.

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Engaging With Kids or Grandkids on Rough MS Days

Posted on February 9, 2024 by MultipleSclerosis.net

When you are having multiple sclerosis (MS) flare-ups or are otherwise not feeling like yourself, it can be hard to find the energy to play with your kids or grandkids. But if you have committed to watching the kids, sometimes you must make the best of it.

To find out how people in the community handle those days, we reached out to the MultipleSclerosis.net Facebook page. We asked, “What are some ways to play or engage with your grandkids when you are having a rough MS day?”

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MS Symptoms People Rarely Talk About

Posted on November 10, 2023 by MultipleSclerosis.net

Some aspects of multiple sclerosis (MS), such as muscle spasms and fatigue, are talked about often. However other symptoms are not commonly discussed.

To find out more about the people who experience those symptoms, we reached out to the MultipleSclerosis.net Facebook community. We asked, “What are the MS symptoms that no one ever talks about?”

The community was inspired by this topic – nearly 200 community members responded! Here are some of the lesser-known symptoms they shared.

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