Of course, I would love to think that ms.about.com is at the top of you list for favorite sites about multiple sclerosis; but in the spirit of being helpful and inclusive, I would like to know (and share with others) your favorite MS-related sites.
Do you visit the National Multiple Sclerosis Society site often, or the site of your local chapter? Are you an omnivore and read everything that comes your way or do you focus on just a few sites and read them religiously? How do you get your MS news and information? Tell us in the comments section below.
In many of the relationships that we have, there has been (or will be) the "MS Moment." This is the moment in which you tell a person, for the first time, that you have MS. I thought I would take some time thinking about how this goes down and give you some ideas around your disclosure:
- Timing: The first part of the "MS Moment" is timing; too soon and it seems to the person that you might be defined by your MS, too late and it seems like you chose not to let them in on a vital part of your life.
- Context: Most people don't catch the subtle things. You could casually mention that you can't make that lunch date because you have an appointment with your neurologist, but I'm guessing it won't work. You'll likely need to be more direct. How do you work, "You know, I have MS," into a conversation? There's no easy or always right way. You could go with a big set-up: "There's something I need to tell you," or the over-casual, "This silly leg, acting up again - it's the MS." Most likely, you'll tell someone in an explanatory situation, "I'm just not sure if I'll be able to commit to that, you see I have MS, and sometimes I don't know how I'm going to feel." Then there is the more as-needed approach, "I really would love to volunteer for three days making hot waffles for the festival, but I just can't. I have MS."
- Goal: Of course, you need to think about the goal of your disclosure about multiple sclerosis. Are you seeking help? Are you trying to explain a decision that you made? Are you looking to deepen a friendship? Do you just want to "come clean?" What do you hope to accomplish by disclosing your MS in a particular relationship?
Any stories out there of "MS Moments"? Please leave them in the comments.
The holiday season is upon us. This year, make an MS "wish list." What would you put on your MS wish list? Of course, a cure would be nice - but there is so many more things (that are more immediately attainable) that could go on a wish list, so apart from a cure, what would you wish for concerning MS this year? Here are some examples to get you started:
- That my family don't forget about the invisible symptoms like fatigue.
- That young neurologists become interested in MS research.
- That my neurologist try a bit harder to understand how things like food affect me.
- That my co-workers do a bit of reading about MS so they understand me better.
Now it's your turn - what's on your MS wish list this year? Leave your ideas in the comments section below.
The days are getting shorter and colder. That usually means that we get outside less.
This is less than ideal for two reasons: seasonal affective disorder and vitamin D deficiency. Seasonal affective disorder is when a person experiences mild depression because of lack of exposure to sunlight. There's nothing particular known about multiple sclerosis to suggest that people with MS are more or less susceptible to seasonal affective disorder (although people with MS are at a higher risk for clinical depression); however, seasonal affective disorder is preventable and I figure that if you're dealing with MS, you really don't need to deal with seasonal affective disorder as well. That great news is that preventing seasonal affective disorder by increasing exposure to sunlight will also help your vitamin D levels.
There have been links between vitamin D deficiency, MS and fatigue. If you haven't had your vitamin D level checked recently, ask your healthcare provider about it. Meanwhile, a little sunlight does a body good, especially in winter months. You just need about 15 minutes of sunlight a day on your hands and feet for your body to produce enough vitamin D in most situations (although people with MS are more prone to vitamin D deficiency and may need to take supplements). Fifteen minutes is doable and you'll be preventing seasonal affective disorder as well. A two-for-one to reduce the risk of fatigue and mild depression from seasonal affective disorder. All you have to do is go outside for a bit.
NOTE: Depression is a very real symptom of multiple sclerosis. Whether you think you may be experiencing seasonal affective disorder or are just feeling more sad than usual or less interested in your normal activities, seek help from a professional.
I'm taking a quick survey about diets and MS. It seems like most of us have tried something, if not many different things.
What I would love to know is:
- Which diet(s) have you tried?
- Why did you choose this diet?
- How did you feel on this diet?
- How long did you stay on this diet?
- If you stopped this diet, why?
Thank you for answering these questions. Please leave your answers in the comments section below, as well as any other information you would like to share about diets and MS.
Read more about diet and MS:
You know just the questions that I am talking about. Yes, those - the ones that shock you so much that you don't know whether to laugh or cry.
My favorites include such gems as: "How much longer do you have to live?" and "Didn't they find a cure for that last year?"
You know your people and probably have heard some questions repeated. I suggest preparing yourself for the next time you hear them by coming up with an educational (or witty) reply.
Give it a try. It could save you from some of those "I wish I would have said..." moments.
Read the full article: Deal with Some MS FAQs
What about you? What are the questions that you hear that make you crazy? How have you responded (or wish you'd responded)? Leave your stories in the comments section below.
With the holidays upon us, many of us will be seeing people whom we haven't encountered for a long time or meeting people for the first time. Even if you see most of these relatives every year, it seems like many people may imagine all sorts of scenarios for how your multiple sclerosis might have impacted you over the past 12 months.
All of this is to say that you may get bombarded with people who really want to know how you are doing with your MS. Rather than try and produce a custom message for each and every one of the well-wishers (or those who are just curious), I'd suggest putting together a little speech with all of the elements that you would like to communicate about your MS. I tried it and it works like a charm. A well-wrapped speech may actually deflect other questions or the stories about a coworker's aunt who underwent all sorts of horrible tribulations from her MS. I wish you luck.
Read the full story: Write a 30-Second Speech About Your MS
What about you? Have you tried having a little speech prepared about your MS before going into social encounters? How did it go? Share your stories in the comments section below.
I have been cooking at home quite a bit recently. For people without MS, this probably does not seem like any big feat. However, cooking is pretty complicated when you might not be feeling physically or cognitively up to par, starting with selecting a recipe, obtaining the ingredients and doing all of the separate little tasks that come together in a culinary masterpiece (or even a edible dinner).
I wrote this article last year to capture some of the tips that made cooking not only easier for me, but much more fun: Cooking with Multiple Sclerosis
What about you? Do you cook? What helps you? Leave your tips in the comments section below.
I don't know that "dignified" is the first word that I would use to describe myself, but I certainly know that I wouldn't like it if people thought of me as undignified. However, I increasingly find myself in situations where that is a pretty accurate description of what is going on as I fumble and drop something or stutter around, trying to remember a word that I need to complete a sentence.
I maintain, though, that it is how we respond to the situations that we are less than graceful that defines whether we are dignified. At least, that is what I keep telling myself.
What about you? What is your "dignity meter" telling you these days? How do you cope with embarrassing situations or the need to ask for help? Leave your stories and tips in the comments section below.
Read the full article here: Dignity and Disability in Multiple Sclerosis
We all have a different perception of risk, based on statistics, emotions, potential consequences and/or benefits and a host of other factors, leading to very subjective, individualized decisions. For instance, I know people who drive without their seat belts, but won't take Tylenol (or anything else) for a headache. Another woman I know has smoked for over 30 years, but won't talk on the phone or stand near a window if there is lightning outside.
Now there are some new disease-modifying therapies for MS that put us in the position of weighing risk and potential benefit. Some of us have seen all of the older medications fail to help us, and these newer meds are pretty much what we have left. Others are terrified of injections, and an oral medication is sounding really good. However, some of these come with fairly severe side effects and we have to figure out if we are willing to take the chance of experiencing one of them.
Luckily, we are getting better at figuring out who is more susceptible to some of these side effects. Using this data, docs are able to tell us what our chances are for having a problem. If our doctors think these risks are too great for a certain individual, they simply will not prescribe the medication to that person.
We all still have decisions to make about our meds, but knowing the risks compared to other people taking the drug is incredibly useful information to throw into our individual treatment choice.
What about you? How did you decide on the medication that you are on? Were you afraid of side effects? Are you still? Leave your answer in the comments section below.
Read the full article here: Learning (and Reducing) Your Risk for Serious Side Effects