Saturday, May 30, 2009
MS Types – Primary Progressive and Progressive Relapsing
Let's continue looking at characteristics of Progressive MS. I already talked about the different types of MS and focused specifically on Secondary Progressive. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS. Today the focus is on Primary Progressive and Progressive/Relapsing MS.
Remember, most MSers have Relapsing/Remitting MS (55-85%). Only a small minority of MSers have Primary Progressive (10-15%) and Progressive/Relapsing MS (2-5%). There is an information void for these types. That information can be confusing to the patients, and maybe even to the doctors who see so few cases compared to the other types.
Thursday, May 28, 2009
Secondary Progressive MS is the advanced course of Relapsing/Remitting MS. I recently talked about the different types of MS. Now I am looking at the characteristics of Progressive MS. As this series continues, I will discuss research and clinical trials, medications, "a day in the life," and other topics relating to the progressive types of MS.
First, Let's take a quick look at what it means to have Progressive or Chronic Progressive MS. Most MSers have Relapsing/Remitting MS (RRMS), so that is the type most people are likely to know a little about. Because the majority of MSers have RRMS, most information, including online articles and blogs, talks about RRMS. If a type is not specified, it is probably about RRMS. However, that leaves a void where Progressive MS is concerned. Because there is little information, many people do not know about Progressive MS, and that includes MSers.
Monday, May 25, 2009
A rose is a rose, but can we say MS is MS? After all, MS affects the autoimmune central nervous system, and that is true for every person who has MS. But after that it gets a bit murkey.
Just as a rose is identified by characteristics such as color, size and fragrance, so is each person's MS symptoms unique based on clusters, reactions, time lines, the course of the disease and any number of other idiosyncrasies. So yes, MS is MS, but not exactly. There are different categories or types of MS that provide us with some degree of understanding why symptoms of people with MS differ so greatly.
Thursday, May 21, 2009
World MS Day is May 27. It was established by the MS International Federation and scheduled for the last Wednesday in May for future years. Register as an individual who has MS, who has a friend or family member with MS, or a group as a member of the MS Movement.
You can also register an event if you are planning an observation or you can donate to help.
Look at their map to see events near you or even other people who have registered.
Tuesday, May 12, 2009
Paleolithic Bulls and Other Animals Crowd Calcite Walls at Lascaux, France
Poetry is so hard
without metaphor or simile.
Nature escapes me
Rhya’s earth, an illusion.
I rub my eyes and sigh
"You know no words".
What drives this need
to sit in quietness and pain?
What need at Lascaux
to picture deer and bull?
Just a bursting!
Ah! the humanness of it!
The rapture, when words were few.
Sunday, May 10, 2009
Well apparently not. Julie Stachowiak found a survey by the UK MS Society to see how much the public knows about MS. Almost half - 40% - could not name even one symptom! Many confused MS with another condition all together. There is much left to learn.
Julie continues with a link to her previous post when she asked MSers about the dumbest thing people have said to them about their MS. These are good. Sadly, they are also familiar. Read them here.
I can relate. As I read through the comments, I thought of a couple I had heard.
- The week I was diagnosed, before I had a chance to make plans, a coworker asked me how long I planned to work. I told him I would probably go home around 5:30.
- When I thanked a woman for opening the door for my scooter and me, she said, "I wish I had one of those [scooter]. Sometimes I'm lazy, too." LAZY? LAZY, TOO?
What have you heard?
Saturday, May 2, 2009
Were I to die, no one would say,
“Oh, what a shame! So young, so full
Of promise — depths unplumbable!”
Instead, a shrug and tearless eyes
Will greet my overdue demise;
The wide response will be, I know,
“I thought he died a while ago.”
For life’s a shabby subterfuge,
And death is real, and dark, and huge.
The shock of it will register
Nowhere but where it will occur.
— JOHN UPDIKE