It is MS Awareness Week. As many of you know my Bookman received an official diagnosis of multiple sclerosis in January of 2006. MS Awareness week seems to have turned into a time for me to stop and step back from being in the trenches for a minute and reflect on things. I’m sure Bookman would agree it has been an up and down year. There was an exacerbation over the summer (that’s what an active MS episode is called) and a medication scare. There have been lots of nights when sleep was illusive and sometimes still is. The frustrating thing is how unpredictable it all is. How there can be two days exactly the same in every way but for the MS symptoms. There is a really good day and we think, wow, if Bookman does this and this and not this then everything will be great. So the next day he does this and this and not this and it ends up badly. MS is a continual lesson in how to take one day at a time however it may come wrapped.
One of the things about MS that makes treatment difficult is that no two people have the same disease. Sure, the basics are the same, but the way the disease moves and progresses and reveals itself in one person’s body is completely different for the next person and the next and the next. There are currently about 400,000 Americans living with MS and each week another 200 people are diagnosed. Worldwide there are about 2.5 million people living with MS.
No one knows what causes MS though there a many theories. The disease is thought to be immunological because the symptoms are a result of the person’s immune system attacking myelin, the protective insulation around nerve fibers. MS is not considered a fatal disease. Nor is a person with MS always going to end up in a wheelchair. In fact, 2/3 remain able to walk though they may need the aid of a cane or crutches to do so.
Some of the most common MS symptoms are – and these can occur continuously, daily, or only now and then – fatigue (often made worse by heat), numbness, balance and coordination problems, bladder dysfunction, vision problems (often one of the first symptoms), pain, cognitive impairment (like forgetting words for things, inability to concentrate or becoming easily confused), depression and spasticity issues such clonus.
There is no cure for MS, there are only a handful of disease modifying drugs that slow the progression of the disease. In 2009 there was huge news in the MS world when the FDA approved the very first oral MS medication. This medication is for people who are experiencing mobility problems, not an across the board treatment. The main treatments remain injectible only.
If you are interested in learning more about MS, visit the MS Society FAQs about MS page.
If you are interested in finding out more about William, the neurologist in the photo who has MS, or the stories of other people living with the disease, or various ways that you can help make a mark against MS, visit the MS Awareness Week website.
On an entirely different note, this is my last week of class for the semester and the professor has seen fit to only just now give us our final project assignment in addition to a week of regular schoolwork and a group presentation. Nice. Therefore, posting will likely be a bit sparse this week. Hopefully once I get a handle on things I can tell you all about Haroun and the Sea of Stories by Salman Rushdie. I just finished it last night and I absolutely loved it.
Oh wow, Stefanie – I didn’t know about your Bookman’s diagnosis, but I’ve known some other folks living with MS and I’ve heard how frustrating and difficult it can be to live with. Glad you shared this, and good luck with your busy week.
No, having only joined the blogworld less than a year ago and therefore not knowing your blog back then, I didn’t know either. It is certainly a b****r of a disease. I know two people who’ve been diagnosed – one 30 years ago, and one around 8 years ago. Both are going pretty well, but both have their ups and downs. Do you have the Ms Readathon over there? It’s a pretty big fundraiser over here and my kids always took part. Good activity (reading), good recipient (Ms Society).
Anyhow, thanks for sharing and bringing me up to date with some of the current thinking.
There have been several new drugs produced lately, only most health care systems are slow to pick up on them and use them, often because they are expensive. I signed a petition just the other day for my friend that was destined for the NHS which is refusing a new drug that apparently works fantastically well. It’s a good thing we don’t know the half of what goes on in the medical world, I think. We’d despair of health care if we did.
MS is such a frustrating disease. But there’s also lots of hope that your Bookman will not be affected so badly by it for years and years. I’ve certainly got my fingers crossed.
Thank you for reminding us about MS Awareness Week and for sharing what is obviously a painful and frustrating experience for you and your (our) Bookman. Ever since I first read about his bout with MS, he is the person I think of whenever I hear about advances, or attempts at advances, being made in the treatment of MS. Even though I’ve never seen his face (except for the darling picture of him in a dog mask), he has become the “face” of MS for me. I urge everyone to make a contribution, as I will, toward research for a cure.
Thanks for the information about MS. Hope this year will hold more ups than downs.
You and your Bookman are excellent spokespeople for living well with a frustrating disease. Many hugs and good health to you both. (and restful nights! Good sleep is so essential and also can be so difficult to come by for people with mysterious immune disorders!)
I’m sorry to hear it was a rough year for the Bookman. I can totally understand your frustration with the seemingly random fluctuation of symptoms. I would have to say that’s the most annoying part of my disease (also neuroimmunological) too. It makes it so difficult to make plans, and it’s also hard for other people to understand that what you could do on one day is impossible on another. Here’s hoping for a lot more fruitful research on what make our immune and nervous systems behave badly!
One of my best friends’ father has MS and I know it is very frustrating. Wishing you both good health, good luck and a lot of patience!
Thank you for putting the information up about MS Awareness Week. I was diagnosed July 6, 2001 and since then have had lots of ups and several downs. I’m actually home on disability as a result of the symptoms of my MS. I can definitely relate to the problems & issues facing Bookman. I commend you for being an awesome supporter! As much as this disease sucks, it is possible to survive and thrive through the pain, the numbness, tingling, blindness, deafness, memory loss, etc. etc. Humor goes a long, long way. Wishing you both the very, very best.
Thank you for posting about this, Stephanie, it’s quite brave to talk about something so personal. I am so sorry to hear about the Bookman’s diagnosis. Several of my friends and friends’ family members have recently been diagnosed, as well. I’ll keep the both of you in my thoughts, and wish you many, many more ups than downs.
Also, best of luck with your last week of classes! I’m sure it will be a relief to get all of that work out of the way, and just in time for spring!
You and your Bookman are heroes to me for living so steadfastly (and with senses of humor) with this oh-so-unpredictable disease. Thanks for spreading your honest awareness to others.
Emily, thanks for your kind words and wishes. It is a challenge and some days we are better at meeting it than others but most of the time we do okay
Whisperinggums, I am glad to hear the people you know who have MS are doing pretty well especially the one diagnosed 30 years ago. There wasn’t much in the way of medication back then. We don’t have an MS Readthon here. I wish we did. We have a walkathon and there are several cycling events, one of them is something like a week long 300 mile trip around Minnesota.
Litlove, I always wonder how your friend is doing. I hope her petition is successful! And thanks for the crossed fingers. Everyone of them helps
Grad, you are such a sweetie! Thank you ever so much. I can’t begin to say how much your words mean to me. And maybe one of these days I’ll get my Bookman to smile for the camera without a dog mask on
Jenclair, thank you for your good wishes!
Daphne, I could say the same about you and Terri! Thanks for the hugs and good wishes
Sylvia, chronic illness sucks doesn’t it? I know you can completely relate. And yes, here’s to hoping for more fruitful research for your sake for Bookman’s sake and for the sake of everyone whose immune system is behaving badly
Smithereens, thanks for you good wishes! I hope your friend’s father is doing well!
Stacy, you are right, humor goes a long way. I’m sorry to hear you’ve had so many ups and downs. I think researchers are making some great discoveries right now and I hope that they lead to something big in the coming years. Thank you for the good wishes. All the best to you too. Take care!
Rebecca, I’m sorry to your friends and family members with recent diagnoses. I hope it was caught early and they have good success with the medication. Thank you so much for your good wishes. And yes, spring fever is upon me so it will be nice to have a brief break from school to enjoy the changing season
Emily B, you’re such a dear! Big hugs
Thank you for sharing information about the disease and about how your Bookman is doing. I hope this year is a very good one for him, and for you too. And I hope, also, that your schoolwork is going okay!
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