Living with M.S.

"Living with M.S. is sort of like training for a long race. The harder you try, and the longer you keep at it, the stronger you become.
Eventually, looking back, you may be amazed at the power you possessed, even when you had no idea it was within your reach." (Linda Ann Nickerson)

Wednesday

It's National Women's Health and Fitness Day




Across the United States, the last Wednesday of September is National Women’s Health and Fitness Day. This annual occurrence has been recognized as one of the largest health promotions in the nation.

What does that mean for ladies living with multiple sclerosis?

Surely, that depends on each MSer. What do you do to blow off steam, burn calories, or stretch too-tight limbs?

Virtually all physicians recommend individually suitable exercise for MSers. Clearly, realistic goals are a must. But it’s important to keep moving, in whatever ways we can.

Maybe you schedule a physical therapy session. Perhaps you lift hand weights (or soup cans) a few times to build your upper body strength. Possibly you take a walk or participate in water exercises. Or you might do some yoga stretches or tai chi movements.

I’m gonna go walk my dog around the block. Today, I can. With RRMS (relapse-remitting multiple sclerosis), who knows what tomorrow may look like?

But for today, it’s National Women’s Health and Fitness Day. And everything counts.

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Tuesday

Does stress overload set you awhirl with MS vertigo?



Vertigo is a veritably vile, but fairly common, symptom of multiple sclerosis. It’s sort of like being seasick on shore. It’s something akin to the feeling one experiences after riding a swirling, topsy-turvy carnival ride.

Vertigo is nasty.

It makes the MSer reel and stagger and hold onto anything within reach.

Yesterday, I grabbed the shower rail. Boy, was I glad it was there, especially standing in soapy, slippery shower bubbles.

Earlier, I tried riding a favorite horse. (Horseback riding is supposed to be helpful for rebuilding balance and conditioning for some people with conditions like MS.)

We plodded one lap around the equestrian arena and stopped in the center. I fairly swayed in the saddle, unintentionally cuing the well-trained mount to zigzag under my shifting weight.

Standing on the ground next to this sweet equine, I began taking a quick mental inventory. (Honestly, I wished I’d had the presence of mind to do that before climbing aboard.) I ran a quick tally in my head, recounting recent excitement and exasperation, wonders and worries.

Concerns for family members and friends, overloaded schedules, ongoing health challenges, issues with finances, less-than-pleasant messages received from certain individuals, stressful interactions, insufficient sleep, sudden life changes, and an ever-growing to-do list offered a start.

Z-z-z-z-zing! The stress-o-meter rated off the charts.

High-energy and high-emotion topics (both positive and negative) can combine to take life to a stress overload level, leaving an MSer wide open for symptomatic exacerbations.

So today I am a little awhirl. I’m running in circles, without even moving.

This CafePress cap cracks me up. "Vertigo - It's the reel thing." You bet it is.

Round and round and round we go. Maybe tomorrow it'll stop.

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Public domain clip-art 
and
Vertigo cap – product photo – fair use

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Wednesday

Ever have trouble getting through a hard day with the MonSter?



Some days, the multiple sclerosis MonSter seems to have the upper hand.

Anyone who battles MS each day likely knows the feeling.

Take heart.

No one seems to know who originally said this, but it seems to offer encouragement, especially for those MonSter Mayhem days:

“On particularly rough days, when I am sure I cannot possibly endure, I like to remind myself that my track record for getting through bad days so far is 100%. And that's pretty good."


Hang on. We’ve got this thing.

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Monday

What's the worst comment or question you've heard about MS?



Maybe people mean well, when they step into a little you-know-what, just making conversation with a person who battles multiple sclerosis daily.

OK, we’ll go with that.

Perhaps they simply don’t know what to say, so they come up with pat answers, inane questions, or more-than-obvious statements.

Here are some notorious ones:

15 things never to say to anyone with Multiple Sclerosis.

I’d be willing to bet you can come up with a few more to add to the list.

Those are the moments when, although MS can make some of us physically clumsy, we have opportunities to exercise grace and poise in our responses. We may wish to issue quips or witty comebacks, but we often let things slide.
Because, if a person hasn’t actually experienced MS firsthand, it’s tough to have a clue about what life with the MonSter is really like.

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Wednesday

Can this new MS drug reverse demyelination?



Could this be a medical breakthrough for treating multiple sclerosis? MSers may surely hope this is a step in the right direction.

Neurology, Science Daily and other research journals are reporting that a new experimental MS treatment is looking promising as a possible means of reversing nerve demyelination. That’s the primary problem of MS.

Here’s the news, as it has just been released:

MINNEAPOLIS – A new treatment under investigation for multiple sclerosis (MS) is safe and tolerable in phase I clinical trials, according to a study published August 27, 2014, in Neurology® Neuroimmunology & Neuroinflammation, published by the American Academy of Neurology


The phase I studies were the first to test the drug candidate in humans. Studies with animals showed that the drug, which is called anti-LINGO-1, or BIIB033, may be able to reverse the demyelination of the nerves. Anti-LINGO-1 blocks LINGO-1, a central nervous system protein that prevents myelination.


Current treatments for MS work to reduce new damage to the brain, but do not repair new or past damage. In MS, the body’s immune system begins to attack the myelin that acts as insulation around the nerves in the central nervous system. This makes it more difficult for the nerves to send messages to and from the brain and spinal cord.


In the study, 72 healthy people without MS and 47 people with either relapsing-remitting MS or secondary progressive MS were given the drug or a placebo. The healthy participants received either a placebo or one dose of the drug by an injection. The people with MS received either placebo or two doses of the drug two weeks apart. In both groups, participants received varying amounts of the drug, ranging from 0.1 mg/kg to 100 mg/kg. 

The occurrence of side effects was similar for people who received the drug and those who received the placebo. Most side effects were mild to moderate and were not related to the drug. Side effects included headaches, upper respiratory infections and urinary tract infections. There were no serious side effects or deaths. 


There were no significant changes in vital signs, EKGs or other safety tests of the drug. Doses of 10 mg/kg and higher resulted in concentrations of the drug in the blood that were similar to or higher than the concentration that was associated with 90 percent of the maximum remyelination effect in studies with rats. 


“With these results we have been able to start phase II studies to see whether this drug can actually repair the lost myelin in humans and have any effect on restoring physical and cognitive function and improving disability,” said study author Diego Cadavid, MD, of Biogen Idec in Cambridge, Mass., which developed the drug. 


Cadavid is a member of the American Academy of Neurology. The study was supported by Biogen Idec. Learn more about multiple sclerosis at AAN.com/patients.




The actual chemistry of the drug and its action on the body has not been published at this point. However, MSers and those who care for them are watching and waiting for additional reports on the safety, efficacy, and potential governmental approval of this new medication for MS.
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