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Six things people should know about MS

Six things people should know about MS

Explaining what it’s like to live with multiple sclerosis can often be difficult…and frustrating. We recently asked our community what they wanted others to know about MS. Here’s what you told us (you can view the complete list here).

The symptoms of MS ebb and flow, and most of the time you don’t know how you are going to feel from one day to the next.

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Comments

  • sharon
    4 years ago

    Thanks for speaking up Gordy. I was RRMS, now at 65 SPMS. I REALLY believe, despite all the drug companies hype, that as you age MS disables you. For some of us it is not in a wheelchair but it does dominate and deprive you of life as you wish it was. Used to think I had MS. Now realistically MS has me. There are more bad days then good.Not depression just factual.

  • Gordy
    5 years ago

    I found ‘Six Things People Should Know’ annoying, because, predictably, it’s written with the assumption that we ALL have Relapsing Remitting MS, therefore some questions cannot be truthfully answered,and I feel a bit insulted. It’s bad enough to be sidelined by work / society, but to be ignored by your own peer group is thoughtless.
    (I have Primary Progressive MS – no relapses for me. Just relentless degeneration.)

  • Russ
    4 years ago

    Gordy, thank you for saying this. I clicked the comments section for the very same reason, simply to point out that it’s a bit insensitive to neglect to acknowledge the differences for those, like you and me, with PPMS. I didn’t think that you were “ticked off at the people who live with RRMS”, just upset that this support group would fail to acknowledge the difference. It could have been as simple as one sentence on one of the points. Something like, “And some MS sufferers, those with PPMS, not only have unpredictable symptoms, but experience a constant degradation of their abilities.” I don’t think that would have been to much to ask.

  • Laura Kolaczkowski
    5 years ago

    Hi Gordy,
    I’m glad you’re speaking up. People like you with PPMS are often on the outside looking in at all the talk of treatments, and lifestyle choices when often there are none for you. I would be pretty ticked off at the disease but not at the people who live with RRMS and SPMS. We try to acknowledge the needs of people with PPMS too, and it is now a research priority worldwide. I wrote about the increased efforts in September – http://multiplesclerosis.net/?p=5866

    These aren’t the only things people should be told about MS but they are the most frequent responses from the 300 people who did offer ideas. These six responses were gleaned as a summary from a survey in the spring time – http://multiplesclerosis.net/living-with-ms/want-people-know-ms/

    A very dear friend, along with a few other people I know with PPMS, struggle with this damn disease everyday, and I am always aware their experiences with MS are very different than mine. We have several people here who contribute regularly about their life with PPMS, and I especially hope you will read the writings of Marc Stecker, aka Wheelchair Kamikazee. You won’t find a more honest, in your face portrayal of PPMS than what he writes and shares at http://multiplesclerosis.net/community/experts/marc-wheelchair-kamikaze/

    Again, thanks for sharing your frustrations, you and everyone here is a valued member of the MS community. best, Laura

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