Thursday, April 22, 2010

Carnival of MS Bloggers #60

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.

SPMS, Spring, Extraordinary Lives

Secondary Progressive MS: What Your Doctor Won't Tell You
by Diane J Standiford of A Stellarlife

Ok, 1.) Approx. 90% of people with relapsing/remitting multiple sclerosis will become a person with secondary progressive MS. That means YOU, unless you are in the lucky 10%. Since most people start with relapsing/remitting MS, YOU, like ME will join the secondary progressive club one day. No matter what drug you have been sold on, 90% of you will progress and become disabled. Now, take a deep breath. Rejoice that you do not have primary progressive MS. Rejoice that you will have RR for about 20 years after diagnosis. Rejoice that you were able to walk and stand up to at least 15 years after diagnosis. Rejoice that you could still hold a job, start a family, and hold onto that hope that you were the 10%. If in those 20 years you ONLY had MS to deal with and no other diseases or conditions---rejoice. Many of your peers were not so lucky. No doctor knows how much any drug slows the natural progression of MS (not if they do 1 million MRIs), OR if it has slowed your natural progression AT ALL.

All the King's scientists and all the King's doctors can't put the MS puzzle together yet.

NOW! That is the bad news. The good news is very good.

2.) Once you have the secondary progressive diagnosis, you will probably stop having new exacerbations. If you never had bladder problems, you probably never will. Cool, huh? I think so. There is now less unpredictability in your life. If your left leg is bad, it will stay bad or slowly get worse---YOU KNOW WHAT TO FOCUS ON!! That is why I can't say it enough, what I wish someone had told me, start now if you are in RR, to work on your relapsing areas. Maybe your right hand will remit and be normal for the rest of your life, but why gamble? NINETY PERCENT

I was told that how I was doing after 5 years would predict my course. At 5 years I was doing GREAT! I was driving, shooting hoops, working 40+ hours a week, WOOT. But, the doctor and common MS knowledge was wrong. By 13 years I was pretty much secondary progressive. Normal MS progression. Today, with all the ways and all the push to diagnose sooner, get you on an MS drug sooner, stats will show that people will go longer years before they become secondary progressive---you do the math---smoke and mirrors. I would have been diagnosed with MS 8 years sooner. I would have gone on the new drugs sooner and been told "LOOK how well you are doing thanks to this drug!" By the age of 53, I would be right where I am. (Except with the added stress of having MS for 8 more years, doctor appts., high drug costs, and all the anxiety I read on the blogs of the newly diagnosed.

Here is some more doctors won't tell you because they don't know---you can improve your functioning. Just don't ever give up on your body or brain and don't let yourself be labeled with duct tape as "Secondary Progressive." Don't rest just because "why bother?" Bother. Bother because you are still alive and something of your brain and body works great. Seek that which makes you laugh. Breathe deeply every day. Make breathing an exercise. Get your diet together, toss the junk food, corn syrup, additives, sodas, cigarettes, all those evil doers.

Here is something else your doctor won't tell you: plan now to live with disability. If your MS is benign--woo hoo! If it follows the NINETY PERCENT , you are prepared. Now, I have heard that there are still crazy doctors out there who tell people just diagnosed to quit working and buy a wheel chair---AARRGGH That is worse than pretending you will never need a wheelchair, staying active as long as you can is the best drug. You have possibly twenty glorious years before you will need a wheelchair. And please don't feel guilt if you want one before 15 or 20 years, these years are not written in stone. Learn to listen to your body. It will speak loud and clear. (If you don't believe me, hit your thumb with a hammer.)

Why do so many neurologists not tell you about the true and time-proven state of MS? I can guess many reasons, but none are good excuses. Five days ago I played the piano. I played the piano with both hands. Thank goodness I had a friend with me to witness it or no one would have believed it---INCLUDING ME! When I imagine what it took for my brain to do that and my deformed fingers---AMAZING.

Reinvent YOU. There are so many activities I have been unable to do now, but many I never considered doing, and life goes on. Modern technology is a wonder boost for people with disabilities. Computers, the doors to the world, can use voice recognition to operate. Audio books can take you to more worlds. If you have saved enough money or have long term care insurance, you can buy "people" to help you; if you do not have either of those then the good old U.S. of A. is full of organizations that will find a way for you to get the help you need. There are also many people who will love to help you. Seek them now, familarize yourself now, BEFORE you are duct taped! Talk, talk, talk, to your family and friends about the fact, FACT, that MS is a chronic, progressive disease. My friends and family (including co-workers) were prepared for what happened to me and they were there to help me every inch of the way. (Well, when I say family, I mean my partner, she has been my only family as we think of family, for many years. I had to reinvent a new "family.")

What you won't be told is that you will most likely go into the secondary progressive state and you can survive it. It is even possible to do amazing things. Don't be afraid.

***I am no doctor. I am a woman living with secondary MS for 6 years. I was DX MS in 1990. I took Copaxone from 1997 to 2005. Seek professional advice and do your own research too. Because MS can cause different problems in each of us, no suggestion will fit everyone. But, after reading many MS blogs, I see many more similarities than differences. Most importantly: Be unafraid, you are not alone.***

Feeling Groovy 
by Maryann of Azoyizes and MS

Yesterday, Arnie went to a Civil War gathering outside of Appomattox, VA, so Monty and I had the day to ourselves. I cleaned out one more of my little gardens and got the soil ready to plant in May. In the afternoon, I took Monty for a walk. It's a little hard on my own, but we managed. Then, we came home and I opened all the windows because it was 70 degrees. Finally, I opened an ice-cold beer, and sat and read while Monty took a nap.

Friday, we had Zipper over for the day. Zipper is a Saint Francis career-change dog. She was being fostered by Monty's foster family and hurt her leg, requiring surgery. That meant that she could never be a service dog. So, Kim adopted her. Monty and Zipper lived together for over a year while he was going through training. They get along great, still. We took them for a walk, played ball, and they chased each other around the yard. Since it worked so well, we're going to make it a regular thing.

I got a call from Nikki, the advertising director at SF. She said that since Arnie and I do so much for the organization, they want us to go to Putting on the Dog as their guests. This is the largest fundraiser SF has, and I was thrilled to be invited.

Today, I made Monty cookies, and then we took him for a walk. Cut it short though, because today it's 80 degrees without a breeze. Way to hot for me with MS and Monty in black fur to be out walking, not to mention Arnie who is just three weeks out from chemotherapy!

We have our lawnmower in the shop for repairs. The yard was looking awful, so Arnie asked our neighbor if I could borrow his riding mower. Ten minutes later, Jerry was out mowing our yard! I must point out that Jerry is two months out from a heart attack and open heart surgery, and two weeks out from hernia surgery. Amazing guy.

We had a wonderful Passover in NJ. Our son and one grandson flew in for the occasion. The weather was beautiful, and we all had a wonderful time. My BIL and SIL went with me to see Clash of the Titans in 3D. I loved it! It's been years since I've been to the movies!

My Daffodils are spent, but my tulips (see picture) are still beautiful. Our little Chinese Fern tree is covered in leaves. I worried about it surviving the winter, it's so small. I think all the snow we had acted as a ground saturation, and helped all the plants. Bye for now.

The Extraordinary Life
by Dawn from AnonyMS

Did you ever feel as though your life were meant to be extraordinary?

That something special was going to happen in your future? A belief that nags at you, somewhere beneath the skin, someplace you can’t scratch?

As a child, you blew dandelions seeds across the lawn, watching one puff rise higher than the others, hoping it was the seed that would carry your wish to whomever made these things come true, never knowing it sprouted, days later, as another dandelion in the backyard.

Maybe you dreamed of becoming a doctor. Or a lawyer. Or maybe those were never your dreams at all, forced upon you by parents trapped in assembly line jobs.

A movie star, perhaps? Was that what you wanted? Singer? Musician? Winning awards? Topping the charts?

Did you want to be a CEO? Invent something the world could not live without?

Perhaps, over time, your wants became simpler, like a good cup of coffee every morning with your spouse, predictable, comfortable in your well-worn slippers. A house with a fireplace. Now that would be cozy. An outdoor pool. Plus someone to take care of it. A nice car, but not a minivan. Two or three children with scrubbed-clean faces and good grades.
Yes, you slathered Calamine lotion on your skin and spread Scott’s turf builder on the grass.

Maybe ordinary could be extraordinary to you.
Or maybe you’re like me. You thought you would do something extraordinary or be something extraordinary, but you never knew just what extraordinary was. It had no definition. It was floating out there, somewhere, waiting to be caught.

But now I know.
I have Multiple Sclerosis.

So this is how it’s going to be, huh, life? Now I have to be extraordinarily brave and strong to overcome a lifelong, incurable disease? Great. This wasn’t the extraordinary that I had been hoping for.

But if you’re gonna give me a lawn full of dandelions, life, then watch me clip ‘em and stick ‘em in water. They’ll keep growing back, I know, but hell, I’ve got a cupboard full of crystal vases that need filling.

This concludes the 60th edition of the Carnival.

The next Carnival of MS Bloggers will be hosted here on May 6, 2010. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, May 4, 2010.

Thank you.
Comments for this post.


  1. hi DJS,

    I just went off to comment on "your" blog, where I was waylaid by that speedbump on the Info Hiway, CATS. I swear there used to be porn, or family trees, or auctions? but now the internet is one cat cuter than the last.

    So I am back here to comment, even if if yours is just one of the month's selections:

    THANK YOU for this straight talk!

    People around me are very "oh, don't worry, plan for the best, silver linings, Jesus loves you, kittens... look; kittens on the internet!"

    Really, I could assume that a good case of MS is almost a prerequisite to the Nobel Prize, all the shiny options avaliable to me now...

    as if there were ever a cat cuter than Spackle!