Living with Multiple Sclerosis – Naomi’s Story

In this video from the MS Ireland, meet Naomi Donaldson and her personal journey living with Multiple Sclerosis.

Learn more about Multiple Sclerosis here: http://bit.ly/1PBLn0c

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  1. April Hunt says:

    I am happy for Naomi that she has a positive attitude about her RRMS. However, I found myself getting a little disappointed when she made comments about educating people about MS (when they make comments about being in a wheelchair you should educate them on MS).
    Well….I truly believe people diagnosed with MS need to educate (first off) themselves about the TYPES of Multiple Sclerosis.
    People don’t just get diagnosed with multiple sclerosis…ever!
    Each person will get diagnosed with a type/form of multiple sclerosis on the onset. Your either diagnosed with a type of MS ranging from RRMS (the most common dx of the disease), RMS, SPMS, PRMS, PPMS (and PPMS & its severity…I have Malignant Primary Progressive Multiple Sclerosis (also known as, Marburg Variant Multiple Sclerosis), Marburg Variant is a particularly aggressive form of the disease (only 3-5%).

    My suggestion when someone says to you (or anyone else diagnosed with RRMS, especially) that you take the time to educate them properly. Saying, “Well there are different types of Multiple Sclerosis and some may very well end up in a wheelchair or disabled in some way. I have Relaping Remitting MS and there are a variety of steroids and treatments available to me allowing me to potentially lead a somewhat normal life. And somewhere down the road I may or may not advance or progress to a cane, walker or wheelchair. But my type of MS may not be the type that the person (persons) you’ve seen, known or heard about. They may have a more progressive type of MS”.
    Then it’s up to you if you choose to educate them on what RRMS Stands for and means for you. Or educate them further on what the other types of MS mean and so on and so forth.
    But please be mindful of those of us who have been hit with the more aggressive forms of our shared “namesake” disease. MS is multifaceted and not a blanket diagnosis. And if we truly want to spread the word and educate others about the disease, let’s be sure we ourselves are educated on the types of MS and what the differences are.

    I was diagnosed just three months after you, Naomi (August of 2011). My diagnosis was Malignant Primary Progressive Multiple Sclerosis (also known as, Marburg Variant Multiple Sclerosis). Thankfully my type is very rare, it’s a highly aggressive form defined by its swift and relentless decline to significant disability often within a few weeks, months or a few years, after the onset of the initial attack. This rare form of MS takes a progressive form from the outset with acute attacks throughout and no relief from accumulated symptoms. I was diagnosed in mid August (13th) of 2011. I went from walking, to a cane, to a walker, to a wheelchair all within a 3 month period. Then moved into a custom wheelchair to support my neck, back, buttocks, legs. And now am 90% Bedridden in a medical bed at home (thankfully with my husband who’s a wonderful primary caregiver!!). I’m completely dependant on others to have showers in a chair in my bathtub. I’m also now an 8.5 on the EDSS (Expanded Disability Status Scale), with Lassitude (extreme fatigue – a separate diagnosis from just fatigued), dysphagia (swallowing) and on a mostly liquid (very soft foods for the most part). Also having Dysphasia (speech) issues, recently hearing loss in my right ear, horrible eyesight. I often have a hard time not just seeing but focusing my eyes..they have a mind of their own! My family will joke with me & say “I don’t know what eye to follow, or who your looking at ? (joking to keep me from being serious all the time…we try and make light of things happening/out of my control). Cognitive issues are exacerbating and one of the worst things has been my coccydynia (which has me unable to “sit”). I have to lean on my hips really – going from side to side (thus causing me pain in my hips) & finally spinal cord atrophy which is specific for PPMS.
    I often find myself quoting a saying I said a few times & it’s now developed into my personal slogan “I may be Alive, but I’m far from Living”. Now others in my PPMS Support Group have adopted my saying & passed it around to others dealing from this “hell hole of MS”. This MonSter we live with day in and day out.
    YES!..even people with MS don’t know there’s different forms/types and we aren’t all diagnosed and/or treated medically the same.
    It’s a roller coaster – that’s for sure!
    And truthfully as much as I like this encouraging piece….I have a difficult time relating to it. I truly feel like my “storm” will go on and on (as it has the past 4 years with no plateau) and the darkness won’t end for me until the Lord in His mercy, finally calls me home.

    I just hope that people will read this and if you have MS – PLEASE, get educated first on the type of MS you have and then educate yourself on the other types. So that you can then TRULY pass on accurate information to others and then the world might start to understand that Multiple Sclerosis is diagnosed with different types/forms and they all have differing treatments – to NO treatments at all.

    Thank you for sharing your story. And I hope you do get to experience the joy of having children and that your MS journey is as smooth as it can possibly be.

    Sincerely,
    April

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