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Reading MS: What About You?

A person in my department at work was talking to me, excited that a scholarly article he wrote and had published, was in the top ten of a particular, well-known and respected publisher’s most read list for 2014.  He was so excited that he placed #6 on the list and 1,800 downloads had been done of this particular article since it was published two years ago.

His comments  got me thinking about the number of views, downloads and shares we get here on MultipleSclerosis.net and how each and every one of us writers easily exceed that number with each article that is posted.  Without a doubt, there are a lot more people with MS interested in reading our words than academic types who might want to read a scholarly topic, but it still got me thinking about you, the reading audience.

It’s clear some MS articles here are of more interest and generate more comments and feedback than others.  I love it when I see new  comments posted on my articles because it gives me a chance to better connect with each of you.  There are so many more of you who read our thoughts, but don’t write your reaction to our words, either here on the multiplesclerosis.net site or on our Facebook page.

The nice thing about writing for MultipleSclerosis.net is there are no rules or formula we are asked to follow.  Each of us has our own particular story with MS and how we share that through our articles is left up to us and I’m sure is very apparent to you as you read our stories.  I’ve always loved to write, and that might come through in what I share here.  I tend to mix it up on topics and although I like to write about my personal experiences, I seem to write more articles meant to education and this reflects that I have worked in education for 25 years.

Just as it is for my co-worker and his article, I like to know the audience and why they want to read what I have written. And this brings me to the larger question – what is it we do here at MultipleSclerosis.net  that brings you back to read more?

Are you interested in the research or the human interest stories?

Does it make a difference when we write about the latest drug studies  that give a look into the future treatment of MS?

Or do you prefer  the tips on daily living to improve quality of life?

Some of you share links to our articles via our Facebook page,  and I always wonder who are you sharing with?  Is it family and friends?  Do you ever read an article on MultipleSclerosis.net that you send on to your doctor so you can ask more questions and discuss the topic?  Or perhaps you are linked to other MS group sites or in person support groups and you might be sharing our articles within those groups.

I’m just full of questions and would love to hear more about what you like to read here at MultipleSclerosis.net and what you do with that information.  Would you care to share?

Wishing you well,

Laura

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • north-star
    5 years ago

    I also checked “all of the above” and “other”— my MS is MRI-stable at the moment, but, like all of us with MS, I keep running into obstacles: literal and figurative, of short and long duration. Last summer I hit a wall. I couldn’t stop being sad and gloomy, and in the unusual heat we had, I lost my ability/willingness to meet the challenges of this disease.

    I had MS fatigue on two levels: I was ready to spend the rest of my days in bed with a takeout bucket of chicken and the TV tuned to bad reality television AND I was also sick and tired of having MS. This website helped me regroup. Some things I thought were my own issues turned out to be MS related and I felt better as I kept reading new articles. I also wrote away some of my problems as I commented on articles: for me writing is a thinking, problem-solving process.

    I like the range of input from people with MS, caregivers and healthcare professionals on this site. I’ve discovered a couple of times that I’m not crazy, I just have yet another annoying symptom of this frustrating and absurd autoimmune disorder.

    Keep writing everyone! Thanks for sharing!

  • Laura Kolaczkowski author
    5 years ago

    Thanks, North-star, for making me laugh. I can’t quite picture the bucket of chicken in bed because it would make too many uncomfortable crumbs (think princess and the pea) but I could curl up with an excellent carton of ice cream and hope I don’t fall asleep and allow it to melt all over me. I think this group has done a nice job of finding diverse folks to share – I know I really appreciate reading from the other side, the caregiver’s perspective. thanks for commenting, Laura

  • Laura Kolaczkowski author
    5 years ago

    I think the poll should have also said you can still leave a comment even if you don’t select other. I really am very interested in the motivation. Thanks to everyone for taking the time to read and respond. best, Laura

  • Cherie
    5 years ago

    Laura,
    I read, but like so many of us, sometimes forget my username or password as so many sites want them modified and it’s hard to always remember which goes with which. I am most interested in “readable articles that the uninitiated can understand on MS as my client base is world wide and often there is difficulty understanding some of the more technical articles that come across my desk as an MS certified Nurse. This site tends to meet my criteria for ‘sharable” articles. Lovely meeting you in Boston in December.

  • Laura Kolaczkowski author
    5 years ago

    Readability is so critical, Cherie. If I start using all the big scientific words so many of us would be lost, but especially me! I am still struggling with the difference between B cells and T cells. I am so thankful for the internet because I am always translating words from research just so I can understand them. I’m glad to know you are a reader and sharer here. -Laura

  • chalknpens
    5 years ago

    Hi Laura,
    I sometimes read but don’t respond with a comment because what I might write has already been written. I voted “other” in your survey; what I am looking for currently is not so much more research on suspected causes or study group theories … but trial treatments, pros and cons, truths and disappointments. I’m tired of all of us just accepting pharmaceutical inflation without reasonable changes in actual treatments. I’m discouraged with FDA and Insurance Plans acceptance of high-risk and side-effect-laden treatments. I’m disappointed with physicians who continue to prescribe medications that have been shown to be ineffective in meeting their semi-promised goals. I haven’t the energy to take this on myself in writing, and look for those who have a niche in this subject to do so.

    I began the survey but checking each one … until I got to ‘submit’ and read that I could choose only one. Please don’t interpret that as my not enjoying all of the topics listed as choices.

    Wishing all of you a Happy New Year.

  • Laura Kolaczkowski author
    5 years ago

    Thanks, chalknpens. I try to question those same things in my writings. If you need your blood pressure elevated a bit, and if you haven’t already read it , take a look at my article on the escalating drug costs. Unfortunately I see no end in sight, either. Thanks for your thoughtful response, Laura

    http://multiplesclerosis.net/news/cost-can-continue-treat-ms

  • Michele
    5 years ago

    OMG! I once told my kids to, “put the sandpaper in the truck,” when I meant they should put the chicken in the refrigerator!
    While the “Brain Farts” you are talking about are frustrating, for sure, and humorous, at times they can be right out career-destroying. As a high school English teacher, it was not really the most educating point to call an apostrophe a “doot-ta-lou thingie.” After 29.4 years it was time to hang up the red pencil and call it a day!

  • chalknpens
    5 years ago

    Hi Michele,
    I also reluctantly resigned after thirty years of teaching – five years before I intended to retire, and two years before I had the thirty-two years required in my state for a maximum pension percentage. But as a social studies / language arts teacher, stumbling over words was a career detriment, and an affront to my self-confidence. The day a student came to my desk and asked to schedule a test re-take and was met by my blank stare and my unspoken thought “Are you one of my students?” (this being the seventh month of the school year) was the day I knew the end of my career was at hand. I was able to close the year with two months of saved sick time (and I forfeited the other eight months of time … no sick leave buy back in our system … I ought to have gone back for a day and then continued sick time, but i didn’t want to cause the town to hire only a ‘permanent sub’ at a low rate to replace me … so I resigned in June, opening the slot for a professionally qualified teacher at a higher pay rate. I guess it ought to have been expected that they would go with a first year low pay teacher instead … who lasted only six months on the job before being let go and replaced with a permanent sub and the next year another first year low pay teacher. Live and learn. I’m sorry it happened to you, too. But in retrospect, i don’t know how i continued doing all that I did during those final few years. I just know that i believe i did it well.

    Have a nice new year, Michele.

  • Bmisenti
    5 years ago

    Because I don’t have an “MS team” through my medical insurance to advise me, I’m interested in reading everything I can about MS. I always find your articles interesting and informative.
    There is a lot of erroneous information out there but I think I can believe what is on this site.

  • Laura Kolaczkowski author
    5 years ago

    My insurance company, Anthem Blue Cross/Blue shield has identified me as a special needs person and regularly call me to make sure I can take advantage of having access to a nurse and pharmacist via telephone, 24/7. I’ve never used their service but I do have a drug question totally unrelated to MS. I might give them a ring and see how this works. For my own care, my team is the group I have personally put together or doctors and other providers. best, Laura

  • chalknpens
    5 years ago

    Who has an MS team through their insurance? Not here … not anyone I know. I’ve cobbled together a group of doctors that work out of the same hospital neighborhood in a nearby city … insurance had nothing to do with that, and it took me several years after diagnosis to realize I ought to do that for my own sanity. Still, there are disconnected specialists. But my neurologist, psychologist and skin cancer dermatologist and surgeon are at least connected.

  • Intimid18
    5 years ago

    To answer your question, I like it all. The information that you provide is enormously valuable. I, for one, am an information junkie. The more I can know, the better I feel. It gives me a sense of control with this unpredictable disease. Keep up the great work! It’s truly appreciated.

  • Laura Kolaczkowski author
    5 years ago

    Thanks, Intimid18. That old Schoolhouse Rock – Knowledge is Power idea is still right. The more we know the better we can advocate for ourselves and others. best,Laura

  • kitminden
    5 years ago

    I admin a private support group for folks with MS and other chronic illness on Facebook called Living for a Cure. I often post your work to give us a starting place for the discussion of an issue.

  • Laura Kolaczkowski author
    5 years ago

    That is great to read, kitminden. I like the idea of these writings as prompts for discussions. And online support groups for people with Chronic Disease are powerful tools. Thanks for doing that work – so many benefit. best, Laura

  • Gordy
    5 years ago

    I am a 50 year old similar fellow living in the UK, I was diagnosed with primary progressive MS last year. This site has been a lifelione, infact the few sites I have visited are most useful, as I have no specialist care / support available to me . My mobility is degenerating, so these updates are keeping me in ‘the loop[‘ with research, daily living tips/ experiences etc. It keeps isolation at bay!

  • Laura Kolaczkowski author
    5 years ago

    Argh! I just now see I didn’t post the reply I put together for you. I’m sure it was brilliant but now I forget what I had to say. It was most probably about the failings of the NHS to support everyone – I read the headlines and can’t believe the changes taking place in the UK. I am so glad you found us, Gordy, and we can help to fill in some of the missing pieces for you and keep you virtual company. best, Laura

  • Laura Kolaczkowski author
    5 years ago

    I find the news about the realigning of services (fancy word for cuts) in the NHS distressing. I hope the people of your country and government come to the realization soon that there may be people scamming the system but the majority are like you, who need and deserve better care. It is the right thing to do. I’m glad you are with us, Gordy. -Laura

  • chalknpens
    5 years ago

    You are so right. You are not alone, but it sure feels like it some days!

  • Johan
    5 years ago

    I am a 45 yr. old white guy, living in West Michigan, diagnosed with 2ndry progressive MS. I started having mobility problems on Turkey-Day 2011, my father, brothers and nephews thought I was fooling around. I just quit working because of MS. I was sworn in as an attorney the end of 2009. I was just getting started. I read stuff on the internet because it is conducive to my condition. (whatever the hell that means…) Some stuff I like, some stuff I don’t. I take what I want and leave the rest. It’s kinda cool. (like Cool Hand Luke and Nina Simone’s “Sinneman.”) Thanks for the post.

    In Gratitude, JE

  • Laura Kolaczkowski author
    5 years ago

    JE, sorry about all of that SPMS and the work. It’s a tough spot to be in. And you men seem to always get dealt a different hand than us women – both in ordinary life and dealing with MS. I’m glad you found us. I hope you have read some of the things by Kim – she is quite the cinema and jazz aficionado. best, Laura

    Here’s a link to one of Kim’s articles-

    http://multiplesclerosis.net/living-with-ms/ready-for-my-close-up-disability-and-pop-media-culture-part-i/

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