brokenclay.org/journal

Multiple Sclerosis

what is it?

Multiple sclerosis is an auto-immune disease of the central nervous system. Every once in a while your immune system decides it would be a good thing to chomp on myelin, which lines your nerves much the same way insulation lines electric wires. During the chomping (inflammation), the transmission of information from your brain to your { muscles | eyes | bladder | fill in the blank } is disrupted, causing { fatigue | tingling | numbness | painful sensations | blurred or double vision | muscle weakness | impaired balance | spasticity | tremor | cognitive changes | speech and swallowing problems | fill in the blank }. After the inflammation, the myelin may more or less repair itself, or there may be permanent damage.

MS comes in several flavors:

  • Benign – one or two attacks with complete recovery (i’ll take door number 1, please!)
  • Relapsing-remitting – multiple attacks with partial or total recovery in between
  • Primary progressive – no distinct attacks, just worsening symptoms over time
  • Secondary progressive – a relapsing-remitting course that has become progressive

why do i care?

I was diagnosed with relapsing-remitting ms in 1994. I enjoy fatigue, vertigo, spasticity and occasional paralysis.

what do i do about it?

Read, read, read, read. Hunt through the internet for information. cope. ignore it…sometimes. always hold on to the hand rail when going down the stairs.

equipment:

I know it’s hard for many people to use mobility equipment. I was terribly embarrassed when I first started using a cane – it just wasn’t practical to hold onto walls to walk anymore! Using a cane transported me back to 2nd grade when I got my first pair of glasses – I was so nervous about what everyone else would think that I got to class very early and hid my head inside my desk. Once I’d gotten semi-comfortable with the cane, something more became necessary, and I got to go through the whole process again with crutches, and then again with a wheelchair.

Although each of these changes was difficult, the increased freedom I got more than made up for it. When the choice is between sitting at home without a wheelchair or going out to work, to be with friends, to do the things I want to do with a wheelchair, there’s no contest!

For more on wheelchairs in particular, see what little i know about wheelchairs .

travel:

There are a lot of resources on the net about vacations/cruises/leisure travel for the disabled, but very little about business travel. I’d be interested in any information you might have – drop me an email. I’ve written a short article on the subject for About.com’s Business Travel forum.

I get cranky when I see cars without a permit parked in handicapped spaces, so I carry around a bunch of signs in my glove compartment and put them on the windshields of offending cars.

Anyone who flies and is disabled needs to know about the Air Carrier Access Act .

coping:

It’s kind of presumptuous of me to tell any one else how to cope with a life altering chronic illness, but what the heck. When I was first diagnosed, I coped the same way I coped with everything else: by distancing myself from the problem while simultaneously learning everything I possibly could about it. I bought books, went to the library, did MedLine searches, and of course, spent hours and hours of time researching on the internet. I also lurked in the alt.support.mult-sclerosis newsgroup, which I found very comforting, because obviously I wasn’t the only one with my problems and symptoms.

As time has gone by, I’ve discovered, of course, that I can’t just ignore it. I’ve made a couple of decisions on how to live my life with MS. I won’t abandon my entire life in order to “beat” MS. That means I don’t go chasing what I consider quack treatments, and while I’ve made a number of modifications to what I eat, I won’t be a slave to supplements and highly restrictive diets. When MS starts to interfere with things I want to do, I look for a way to do it anyway, whether that means going to a concert in a wheelchair, or making time to nap on the weekends. I recognise that fatigue is a real, significant factor in MS, and I’ve educated (and continue to educate) my family about that, since fatigue isn’t something they can see.

a request:

Please do not write to me about bee vemon, faith healing, aspartame, or whatever your hobby horse happens to be. The likelihood that I’ve already investigated it and made my own decision on the matter is very high, and I appreciate your respecting my intelligence. Thank you.

12 Comments

  1. nancy

    hi
    I,door number one sounds good to me to,
    not the type I have,thanks for the site
    im sad other people have it, but feel better im not alone

    Reply
  2. Renee

    Having MS has been a difficult journey, these 10 years. MS is the name of all the complications of the disease you have been suffering. After 18 surgeries and 32 hospitalizations, I am determined to live my life on my terms!!

    Reply
  3. Stacy Dhon

    I have primary progressive MS, and as I’d like to start doing triathlons an article I read about (by?) you was very inspiring to me. I live in Overland Park, KS and was would like to know how you picked your handcycles and racing wheelchair and found people to handcycle and train with. Thanks! Please excuse my typos; I have the joy of nystagmus, which helps my typing.

    Reply
  4. Katja

    Stacy, thanks for commenting! I’ve sent you a reply via email.

    Reply
  5. Kelley

    I’m so glad I’ve found this site with your encouraging outlook. I’m way behind you in how I’m embracing this disease. I’m fighting the disease with one of those restrictive diets you mentioned. It’s disruptive and discouraging for sure. I’m investigating wheelchairs and evolving in my wheelchair preferences. I can soooooo relate to your travel and remodel experiences. Nice to find out I’m not alone,

    Reply
  6. Katja (Post author)

    Hi, Kelley, thank you for commenting.

    We all are where we are, and there’s no question but that something like MS, no matter how it manifests, is both disruptive and discouraging. I’ll be thinking of you on your new journey, and wishing you strength and acceptance.

    Reply
  7. Elys

    Hi Katja,

    I am so excited I surfed across your site. I was diagnosed with MS at the end of April. It is so wonderful and comforting to see someone who has been living with this for a few years to be so strong and powerful. That’s my goal now too. Get strong.

    :)

    Reply
  8. Katja (Post author)

    Elys, I’m excited to have found you, too! Thanks for commenting and making yourself known.

    Reply
  9. Thaddius

    Great information. Good to see someone else embracing the disease with such vigor. Fight on fight on. I’ve been fighting since 2005. I won’t let it win.

    Reply
  10. jonathan Simpson

    The promise of a better future, free of chronic disease has remained so for the past 50 years. Why is it that these more advanced treatments always remain ‘future therapies?’ It’s because there is too much at stake for the current pharma-based medicines to be superseded by something better. The IGHR is actively working to bring better health solutions into practice — NOW.

    We already know that more and more medical solutions are becoming biologized. That is, not many diseases or conditions in the future will be treated only with drugs. For example, within the next decade, new body parts will be created on 3-D printers or grown in molds using the patient’s own biological materials or stem cells. Biological heart valves made in a laboratory are already in use. Within 5 years human hearts will be beating where these valves were grown in laboratories outside of the body, then implanted into the body, replacing a faulty valve. Within a decade, entire hearts made from the patient’s own tissue will be implanted. These ‘personalized’ approaches to treatment are not solutions that remain in the realm of science fiction. These are certainties as long as the appropriate support mechanisms are in place – and they are solutions that are illustrative of comprehensive cures, not symptomatic treatment, which is the ‘one size fits all’ approach of pharmacy.

    But we also know that there are already effective therapies for chronic degenerative diseases that are being proven as highly effective in clinical trials. Why isn’t more known about these trials? And why isn’t more replication of these trials occurring once the data is published?

    The pharmaceutical industry, by far the largest sponsor of medical research, focuses on developing and testing new drug solutions that will return huge profits in ever-shorter development cycles. Private industry concentrates its spending on applied research, where economic returns are guaranteed. Big Pharma’s interests are directly opposed to the research that must go into more complex solutions that take decades to develop. Alternative funders such as foundations play an important role in advancing new medical techniques because of their ability to fund research overlooked by the other sectors. However, gaps remain in this infrastructure. Barriers, including lack of qualified investigators, regulatory burdens, and active disruption of promising research constrain discovery. Funders, researchers, advocacy groups, and the patients themselves need to collaborate to address these constraints and to create new sources of funding.

    http://globalhealthresearch.institute
    Latest from jonathan Simpson: The Need to Perform Effective Research is a Human Rights Issue

    Reply
  11. Malia Litman

    The 10 From 10 Challenge is a charitable vehicle to fund the research of the only physician in the world to identify a treatment that prolongs the life of A.L.S. patients(typically by two years), and improves the life of M.S. patients. Dr. Karussis is a Greek Doctor, practicing in Israel, treating patients from around the world who suffer from ALS or MS. Dr. Karussis, the Rock Star of Stem Cell Therapies, has received international recognition for his revolutionary treatment of both MS and ALS patients, using the patient’s own stem cells from a bone marrow extraction. Mass General has replicated and verified his incredible results.
    The urgency now is to bring this revolutionary research and treatment to patients around the world. Please help by accepting the challenge. For a mere $10.00 you can give hope to patients who had none.
    To learn more, or accept the challenge, go to the web site:
    http://www.10from10.com/

    Reply
  12. Rosie Barraza

    Hello, you may have seen our post on other pages. I hope it is appropriate to post here.
    The Henne Group is a research organization based in San Francisco. We are looking for individuals interested in joining our panel and participate in future research projects about their experience living with Multiple Sclerosis (MS).
    If you are interested or know of someone who would be, you can follow this link to sign up: http://bit.ly/THGMSstudy
    If you have any questions you may call 415 – 348 – 2936
    Thank you for your help

    Reply

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