Brass and Ivory: Life with MS & RA

Become a Mentor

noreply@blogger.com (Lisa Emrich) — Mon, 21 Jan 2013 15:47:00 +0000

The month of January marks the 12th anniversary of National Mentoring Month, sponsored by the Harvard Mentoring Project, MENTOR, and the Corporation for National and Community Service. The purpose of National Mentoring Month is to recruit volunteer mentors for young people and to spread awareness of the importance of guiding our youth.

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Contribute to the Future: Become a Mentor

Snuff and MS: Does nicotine protect against MS?

noreply@blogger.com (Lisa Emrich) — Thu, 24 Jan 2013 15:49:00 +0000

Nicotine may protect against the development of multiple sclerosis, according to researchers from the Institute of Environmental Medicine at the Karolinska Institutet in Sweden. In looking for possible causes and risk factors involved in developing MS, a group of researchers in Sweden have examined several possibilities, including smoking and nicotine use.

In a recent study published online, ahead of print, in the journal Multiple Sclerosis, researchers aimed to investigate the influence of moist snuff use on the risk of developing MS while taking smoking habits into consideration (Hedström, 2013). A prior study conducted at the Karolinska Institutet indicated that exposure to environmental tobacco smoke is associated with increased MS risk (Hedström, 2011). The same research group had determined that smoking, but not the use of Swedish snuff, increased the risk of MS (Hedström, 2009).

Read this post in its entirety:

Does nicotine protect against MS?

Eating Foods High in Beta-carotene and Lutein May Protect Against ALS

noreply@blogger.com (Lisa Emrich) — Tue, 29 Jan 2013 15:57:00 +0000

Amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, is a rapidly progressive motor neuron disease affecting as many as 20,000-30,000 people in the United States. ALS attacks the nerve cells (motor neurons) that control voluntary movement and strength. Motor neurons are located in the spinal cord and brain. In ALS, motor neurons gradually die which interferes with muscle control and movement, ultimately leading to death. The cause of ALS is still unknown although research has identified a genetic risk factor in familial (inherited) cases of ALS which account for 5-10% of all ALS cases diagnosed.

New research published in the Annals of Neurology suggests that the consumption of foods containing colorful carotenoids, particularly beta-carotene and lutein, may prevent or delay the onset of ALS. Previous research has suggested that oxidative stress is involved in the development of ALS and that persons who take vitamin E supplements (a powerful antioxidant) have a reduced risk of ALS.
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Eating Bright-Colored Fruits and Vegetables May Prevent or Delay ALS, New Research Suggests

Carnival of MS Bloggers #132

noreply@blogger.com (Lisa Emrich) — Thu, 31 Jan 2013 16:51:00 +0000

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

Colds, Flu and Multiple Sclerosis: Keep Yourself Healthy This Winter
by Dr. Yumi Izumisato

As we see each year, the cold weather brings a dramatic increase in the number of people catching colds and flu. When we catch colds, we often feel chills. Eastern medical philosophy explains that the body gets chills mainly for two reasons. First, when the body is weak and out of balance, it reacts by shaking to get pathogens away from body, which stick to the surface of body or enter into the body. Pathogens are always present, even when you’re healthy. But whether or not they enter the body and bring problems depends on how strong and balanced your body is.

The second reason the body gets chills is the cold is so extreme the body shakes to prevent the entrance of cold.

In either case, the body is sometimes overcome and we end up getting sick.

The influence of cold temperatures often leads to symptoms in the nose, throat and air tract. But it also constricts the blood vessels, resulting in poor limb circulation. These changes near the surface of the body are easy to feel and usually short-term. But the cold can actually reach and chill the internal organs of the body, bringing more serious consequences.

Even for generally healthy people, chills can cause a dysfunction of the internal organs. Depending on which organ the chills spread to, a number of problems can manifest, including digestive, respiratory, sexual and emotional, among others. During menstruation, pain, excessive blood loss and/or clotting, and infertility can occur.

If the initial causes of these symptoms continue unchecked, they can lead to more serious, long-term illnesses. Perhaps western medicine doesn’t recognize this, but the East goes so far as to say ‘cold is the source of all disease.’

What does this mean for people with Multiple Sclerosis?

It means that MS patients need to be particularly careful to stay warm and avoid catching colds or flu or they’ll be at risk of having a relapse.

Prior statistics have already shown that relapses occur more often after a cold or bout of flu. The question has always been, “why?” A recent Current Medicine study suggested that cold viruses could produce a protein that wakens the sleeping pathogenic T cells, resulting in MS relapses.

According to Traditional Chinese Medicine (TCM,) which sees the body and illnesses holistically, the fact you have MS means your body is already weak or out of balance. (This is likely the reason you came down with MS.) Catching cold and chills are also signs your body is out of balance, as we mentioned earlier. The combination of the imbalance caused by the cold weather and the original imbalance (that caused MS) can be too much for the body to take and may result in a relapse.

Both views indicate that viral infection resulting in colds and flu is a factor in MS relapses. So patients should be especially careful about catching colds through winter and times that these illnesses are spreading. Of course, the best way to avoid getting chilled and catching colds is to take precautionary measures.

I recommend the following to keep your selves healthy this winter:

MS patients should do their best to avoid crowded areas, make sure to gargle regularly and get plenty of sleep.

Be sure to dress warm enough, but don’t over do it. You should keep your abdomen/waist area particularly warm. Here in Japan, people do this by wearing a ‘belly band,’ or ‘haramaki.’ (hara=belly, maki=wrap) They’re especially popular with the older generation, but have been shunned as uncool by younger people in the past. Recently, though, modern versions are appearing and gaining popularity. Regardless, staying healthy should be your primary concern, so please use one if you can find it.

Also, be sure to keep your neck, wrists, and ankles warm as well.

With that being said, keeping warm is important, but getting overheated can actually be detrimental. Eastern cultures believe maintaining balance is the key to health in all aspects of life, physical, mental and emotional. Think ‘Yin and Yang,’ and act accordingly. In regards to your body, warm is good, but too hot is not. So don’t overdress or warm your body by the fire.

And finally, don’t bathe in extremely hot water. Long soaks in lukewarm water are recommended.

Regarding diet, basically you should be eating foods that warm the body. For vegetables, garlic, ginger, green onion, and leeks all have a warming effect, but tomatoes and raw vegetables should be avoided because they cool the body. Dark vegetables rich in carotene and root vegetables, such as pumpkin are especially good.

For meats and fish/ seafood, sheep, deer, shrimp, mussels, and salmon are good, but you should avoid crab. Other ingredients that warm the body are cinnamon, pepper, brown sugar, walnuts and chestnuts. Spicy foods warm the body, but should be avoided by people who are particularly dry.

Your meals should be a higher temperature than your body, so soups, stews, and pot cooking are recommended.

I also recommend limiting your alcohol consumption. But if you’re going to drink, do so in moderation. Choose red wine over white. Beer cools the body so you should avoid it, if possible. Again, balance is the key to health, and overconsumption is not balance.

Exercise moderately. You should raise your basal metabolism by building muscle. Lack of muscle makes it difficult for the body to generate heat, so it’s easy to get chilled. (It’s also easier to gain weight for this reason.)

Many people with MS have lost some mobility, thus making traditional exercise difficult. All I can say here is do your best to get some exercise. Even if you’re in a wheelchair, you should be able to do light exercises or yogic postures. There is much info on the net about this so please do some research, or consult your doctor. Where there’s a will, there’s a way. Your body will thank you for it.

During the winter, in general you should do your best to just take it easy and not do anything extraneous in work or play. Also, keep your mind stable and calm. Follow the eastern saying, ’Go to bed early and get up late.’

TCM’s philosophy is that winter is a time when things settle quietly, become passive, and everything is stored away and saved. To welcome the new spring, you should spend the winter quietly and calmly to restore your energy.

These last points are made for everyone to maintain health during the winter. But MS patients should be especially vigilant to stay healthy because we have more at risk from falling ill from the cold. I hope the above advice has been helpful for you and will keep you cold, flu, and relapse free this winter. Please take care.

Thanks very much for your time. I’ve enjoyed sharing with you and look forward to doing so again in the near future.

This concludes the 132nd edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 14, 2013. 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, February 12, 2013.

Comments for this post.

(Top image courtesy of Shutterstock)

Welcome MS Bloggers

noreply@blogger.com (Lisa Emrich) — Fri, 01 Feb 2013 17:44:00 +0000

Living Against MS - Laurie

Growing Up with MS - Jeannine

I'm not drunk...wait - Jeannine

Endless Road Tour - Paul

stargzrblog: Sometimes "MS" doesn't stand for "Main Sequence" -

Kaz Aston blog: Campaigning for MS -

Multiple Sclerosis Blog - Sanquine BioSciences

The directory of the MS blogging community can now be found on this page.

Breathing Deeply Can Help MS

noreply@blogger.com (Lisa Emrich) — Wed, 06 Feb 2013 16:20:00 +0000

Problems related to breathing in patients with MS can be caused by respiratory muscle weakness, bulbar dysfunction (involving muscles which control speech and swallowing), or abnormalities with breath control. Reduced muscle strength and spasticity can result in lower lung volumes (less air in the lungs) and eventually stiffness of lung tissue and chest wall due to diminished range of motion.

As a musician, the ability to breathe deeply and control my air flow is vital to accomplishing my job. From the beginning stages, band students learn to take in a lot of air and move it forcefully through a narrow instrument to create a beautiful sound. It takes a great deal of effort and power to do so. But outside of performing on an instrument, even musicians may breathe shallowly and fail to utilize their full lung capacity on a regular basis.
Read this post in its entirety:
Lung Volume Recruitment in MS

Carnival of MS Bloggers #133

noreply@blogger.com (Lisa Emrich) — Thu, 14 Feb 2013 21:33:00 +0000

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

Can A Cold Day In Hell Be Possible?
from Paul Pelland's Endless Road Tour

I’ve been told to go to Hell so many times, you’d think I’d own a time-share there.

Like most people diagnosed with Multiple Sclerosis, I fear going to Hell mainly because I can’t tolerate the heat here on Earth.

Temperature effect on patients with Multiple Sclerosis is called Uhthoff’s phenomenon, first described in 1890, by Dr. Wilhelm Uhthoff. An elevated core body temperature, even as slight as one-quarter to one-half of a degree can further impair the ability of already compromised nerves to conduct electrical impulses, resulting in temporary worsening of MS symptoms. Core temperature can rise with hot weather, exercise or activity (vacuuming, ironing, grocery shopping, doing the dishes, folding laundry or watching Grey’s Anatomy are big triggers for me), sunbathing, hot baths, emotions, stress, fever or illness, catching on fire, or anything associated with raising the core body temperature.

The heat stops the nerve fibers from working properly, especially if the nerve or myelin insulation has been damaged. The nerves are supposed to allow the brain to send messages to other parts of the body. Remember, in Multiple Sclerosis, the insulation or myelin sheath and the nerve it protects have been chewed away leaving scar tissue. At normal body temperature, a message barely gets through the damage pathway, and when heated up, the message will almost certainly fail to make it through. Therefore, symptoms usually get worse. If my head had fuses or circuit breakers, when I overheat, they would trip or blow. Cooling down resets my circuit breaker. This is usually not a sign of new damaged areas, and is just a temporary problem. By cooling down the core temperature, this temporary worsening of symptoms goes away. These temporary attacks by heat as well as similar ones brought on by fatigue are called pseudo-exacerbations.

By now you can see why staying cool for me and others with MS is extremely important. My issues are mostly cognitive, and a hot headed biker who doesn’t know his own name, or has trouble remembering if he should put his feet down at a red-light or not, might be a quite dangerous.

Staying cool, and controlling my core temperature while riding means staying alive.

The word cool has been used to describe many different things over the past few decades.

70′s

In the seventies, you were cool if you said, “Dig it”, wore earth or platform shoes, bell-bottoms or anything tie-dye. You were cool if you had a muscle car with an eight track player and CB radio. Cool was Smokey and the Bandit, The Fonz, Rocky Horror, Atari, pet rocks, lava lamps, Walkman radios and streaking.

You were cool if you listened to Aerosmith, Alice Cooper, Eagles, Fleetwood Mac, Billy Joel, Elton John, Led Zeppelin, John Lennon, Pink Floyd, Bob Seger, Bruce Springsteen, or The Who.

80′s

In the eighties, cool was chewing globs of Hubba Bubba bubble gum with a Mohawk, Rubik’s cubes, big hair, leg warmers, sweat bands, parachute pants, NIKE’s, black Reeboks, or tucking your 501 Levis into the tops of your unlaced Timberland Boots. You were cool if you had a camcorder, played video games (Nintendo, Pac Man, Game Boy), or used the phrases, “Where’s the beef”, “PSYCHE”, “NOT” or sang the Funky Called Madina. Cool were the California Raisins, skate boarding, baby on board signs and pretending to, ”Just say no”.

Arsenio Hall, David Hasselhoff, Erik Estrada, Gary Coleman, Heather Locklear, Andrew Dice Clay, Bobcat Goldthwaite, Eddie Murphy and Sam Kenison were cool. Cable was in full swing, MTV was a mega hit. Slam dancing, lambada, vogueing and break dancing were cool. Records were shattered by the sales of CD’s. The bigger the ghetto box, the better. ”Is that a car phone antenna?” COOL!

90′s

In the Nineties, cool was Tae-bo, in-line skates, tattoos and body piercings, Fresh Prince of Bel Air, rat tails and AOL chatrooms. The cool actors were Michael Douglas, Joe Pesci, Tom Hanks, Tom Cruise, Sigourney Weaver, Meg Ryan, and Michelle Pfeiffer. You were cool if you could dance the Macarena without spilling your beer. Grunge was cool and Gangsta too.

The cool music artists were Mariah Carey, Boyz II Men, Selena, Hootie & the Blowfish, Alanis Morisette, Janet Jackson, Garth Brooks, Celine Dion, Madonna and the Spice Girls.

00′s

What is cool is forever changing and staying on top of what is in and what is out, what is hot and what is not, becomes less important to most of us the older we get. I have no idea what was cool in the 2K’s, I guess being cool doesn’t really matter to me anymore, except when I’m riding.

I Really Want to be a Cool Biker

Bikers may be considered cool, but a running motorcycle is very HOT. How hot? Open the hood of your running car in the summer and sit on the engine. I don’t care how fast your spouse drives around, your ass and thighs are going to burn. Even riders without MS need to stay hydrated and cool. Here is a great read from the IRONBUTT magazine regarding riding in hot weather.

As someone who rides with full gear (see my last post here), riding suit, boots, gloves, full face helmet, anytime the weather gets above 75 degrees, I have to be careful. If I get stuck in traffic at any temperature above 40 degrees, it could begin to effect my symptoms. For quite a while I have been using a little trick when the temperature creeps up and my memory starts to go to mush. When I am not looking, I switch the ambient temperature reading on my dashboard to Celsius. Instant cooling! It seems to work for a while, but lately I’ve been catching myself doing it. Another trick I learned years ago was to toss my helmet in the ICE cooler outside gas or convenience stores when I stop for a break. Ten minutes on ice really can help out for a while, but not sure what my sweat dripping, bug splattered brain bucket does to the ice in the cooler.

Riding a million miles, I really needed to find a better system.

There are many commercial options for staying cool. I have tried many different types of passive or phase-change cooling garments like ties and vests, the type you soak in cold water, or that use frozen cold packs, but as I tend to ride many hours at a time, They just didn’t work. I need a product that would last for many hours on end, without a lot of fuss or maintenance.

I think if BMW twins can finally be allowed to get a liquid cooling system, by Jack, I should be able to get one too. COOLSHIRT is the world leader in personal cooling, offering systems tailored for emergency personnel, industrial applications, athletes, race car drivers, pilots, motorcyclists and surgeons. Their therapeutic division Miller Therapeutic Cooling Products, was one of my very first sponsors and will indeed help me reach my million miles for MS. I received a COOLSHIRT personal cooling system recently and as it is winter, have had a little difficulty giving it a real test. The idea is a fairly common one, cold liquid circulating around a hot surface, removing the heat from the surface and flowing back to the cooling source. All of our cars use a radiator, and the COOLSHIRT system functions very similar. The system contained a 24 qt cooler with a circulating pump, insulated hoses with automatic shut off, and quick release connectors to an anti-microbial moisture wicking compression shirt. The shirt has 50 feet of medical grade tubing sewn right into it. Here is a video from Modern Marvels on the History Channel. For motorcyclists, they have fanny pack systems, backpack systems, smaller thermos systems, as well as a 12 or 24 qt system like mine. I picked the bigger cooler because I will have plenty of room for it on my touring bikes, and when filled with block ice, it should give me 6+ hours of relief. Until they have an affordable bike system that that doesn’t require ice, this is my best option. I’m sure I will add to this after the summer season, but I just had to test it out!

Here is my system.

And on the bike, the testing really wasn’t fair, I did stay very cool though, I didn’t even have to turn it on.

I felt as though ice runneth through my veins, even though I never put ice in the cooler. This winter is really getting long. I believe Winter is just a season created entirely by big box stores to sell more ice melt and shovels. I thanked the officer for the escort home, and promised to check the weather forcast next time.

I thought long and hard how I could simulate riding in hot weather, and holy blazing saddles, I had a a great idea. In order to really test the system, I needed to get HOT.

My first brilliant idea was to sit and type this post in front of our home’s heat source, a Jotul wood stove. The stove temperature reached 500 degrees, and I sat for half an hour in front of it before noticing my boot sole melting. I used a 12 volt power source to run the cooler, and had a bag of ice and water in it. Fully suited up, I never overheated or felt my symptoms were getting worse. It kept my core cool, and the ice was not even melted during the short test.

Brilliant idea #2 for simulating getting over heated involved waiting until the lifeguard was no longer on duty, and possibly a couple of Sam Adams. At 103 degrees, a hot tub clearly would simulate a hot motorcycle ride, wouldn’t it?

I also had to wait until my neighbor went to work, as explaining why I was in their hot tub at all, would have been hard enough.

Despite this brilliantly JENIUS idea of how to test the cooling system, the hot tub test was a semi epic fail, due to not remembering to hook-up the cooling system prior to the conclusion of the test  as well as destroying my notepad with all my observations which was in my hip pocket. I spent over an hour just covering up the melted snow prints that suspiciously led back to my house.

Brilliant idea #3 would involve not only a heat test but also a stress test with full cardiac work-up. I did wait until the Aerostich suit was dry, but the boots were still a bit squishy. This was fool proof and possible fully legal. The system was running with ice cubes and water, I suited up and hit the treadmill. In normal exercise attire, I usually can jog a mile or two before really getting overheated. In full heavy riding gear, I should have lasted about one minute before summoning the EMT’s. I strapped my emergency contact information onto my dog, and went at it.

I was able to jog as much as I do in shorts and sneakers before taking a break, and that was quite amazing! If you have never seen a Pug applause with joy you have not witnessed a happy dog. The COOLSHIRT system will be a great addition to my summer riding and as long as I get ice before I have reached the point I need to cool down, I should be ok. Knowing the ice will last for many hours in the large cooler lets me plan ahead.

I decided to continue, to see how far I could push myself. (This is sign #1 my cognition was getting affected by my exercising, I lose the ability to make sound decisions) I blame the dog for not stopping me sooner. I eventually get fatigued and my body temperature did slightly increase and I began to lose my balance.  The rest is pretty easy to guess!

In conclusion, when getting hot or overheated would normally prevent you or I from taking part in something we enjoy, there is an assistive technology solution. An active cooling system.  Check it out.

However, now that I am COOL once again, the rules have changed so……..

Give me a damn hand-basket,

I now have no fear of going to Hell!

Ride safe, and keep cool!
Longhaulpaul

This concludes the 133rd edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on February 28, 2013. 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, February 26, 2013.

Comments for this post.

Hearing Problems and MS

noreply@blogger.com (Lisa Emrich) — Tue, 19 Feb 2013 16:22:00 +0000

When one experiences prolonged exposure to sounds greater than 85 decibels, the tiny hairs in the ear which help transmit sound can become permanently damaged. So I have had a good excuse for any “what did you say?” moments.

But I’ve noticed something which has changed since I developed MS. I can’t hear well although I have extraordinary hearing. Doesn’t make sense, I know, but it’s true.

Let me describe what it feels like. Sound waves traveling through the air that reach my ears first are the sounds which I hear most prominently. If the TV is on and you want to talk to me, then you’ve got to talk more directly to me and much more loudly than the TV so that your voice reaches my ears first.
Read this post in its entirety:
Turn it Down Please: Hearing Loss and MS

Vitamin D Deficiency and RA

noreply@blogger.com (Lisa Emrich) — Tue, 26 Feb 2013 15:49:00 +0000

Reduced vitamin D intake has been linked to increased risk of developing RA and vitamin D deficiency has been found to be associated with disease activity and musculoskeletal pain in patients with RA. In a recent study, researchers evaluated vitamin D status in 44 patients with RA and looked for any relationship between vitamin D serum levels and disease activity. A control group of 44 persons was evaluated as well.

Vitamin D circulates in the body in two forms. The liver converts vitamin D to 25-hydroxyvitamin D3 [25(OH)D3], also known as calcidiol. The kidneys convert calcidiol to activated vitamin D, also known as 1,25-dihydroxyvitamin D [1,25(OH)2D] or calcitriol. When measuring vitamin D levels in the blood, the recommended test measures serum concentration of 25(OH)D3, reported as nanomoles per liter (nmol/L) and/or nanograms per milliter (ng/mL).

Persons who have serum concentrations of 25(OH)D3 less than 12 ng/mL are considered deficient in vitamin D. Levels between 12 and 20 ng/mL are considered inadequate in healthy persons. Greater than 20 ng/mL is considered adequate in healthy persons. According to NIH, levels greater than 50 ng/mL may cause undesirable adverse effects. However, some rheumatologists (including my own) recommend serum concentrations between 50-80 ng/mL in patients diagnosed with autoimmune disease.
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Vitamin D Deficiency Associated with Disease Activity in RA

Carnival of MS Bloggers #134

noreply@blogger.com (Lisa Emrich) — Thu, 28 Feb 2013 17:45:00 +0000

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

Ignorance is Bliss
by Alison of Beauty and meaning in a broken world

When I was 28 I was living up a steep flight of stairs, and I noticed that my one leg was weaker than the other. It carried on for a while so I went to the doctor to have it checked out. The doctor looked puzzled and told me that if it carried on she would like to have me tested for MS. Well, I was horrified and felt that she must be a terrible doctor, rather than thinking that it may be true. For of course I could never have MS, not me! The obvious course of action for me was to never see her again }: (

I then forgot all about it.

Well of course I was wrong and she was right, but in some ways I am glad that I didn't know until my 40's as there was not much that could have been done back then and it saved me a lot of anxiety. I didn't have many problems, mainly tiredness. I found it hard to ski or skate but I just thought I was unco-ordinated and it wasn't a problem. I also suspected that I had a problem with my immune system, but put it down to having had a bad case of mono as a teenager.

Now MS is affecting many things and I have come to terms that this has happened to me. But I am glad that I had less to worry about and that I was able to tackle some other tough things while oblivious to the time bomb that was ticking away. I do feel for those that have know for much longer and have had worse symptoms than me. MS can make life such a struggle and I know that I have been spared from something that could have been much more difficult.

This concludes the 134th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on March 14, 2013. 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, March 12, 2013.

Comments for this post.

Bright Fruits and Vegetables are Good for You

noreply@blogger.com (Lisa Emrich) — Tue, 12 Mar 2013 14:52:00 +0000

Eating brightly colored fruits and vegetables are actually very good for your health and can help to prevent disease. In fact, a new study published earlier this year suggested that eating foods containing colorful carotenoids, particularly beta carotene and lutein, may prevent or delay the onset of ALS (amyotrophic lateral sclerosis or Lou Gehrig’s disease).

Another study published in the European Journal of Nutrition (Boeing, 2012) provides a critical review of the role of fruit and vegetable consumption in the prevention of chronic diseases including rheumatoid arthritis. Researchers undertook a comprehensive analysis of prior studies evaluating fruit and vegetable intake in regard to several chronic diseases including obesity, type 2 diabetes mellitus, hypertension, coronary heart disease (CHD), stroke, cancer, chronic inflammatory bowel disease (IBD), rheumatoid arthritis (RA), chronic obstructive pulmonary disease (COPD), asthma, osteoporosis, eye diseases, and dementia. The level of evidence, number and size of studies, and quality of the studies were considered.
Read this post in its entirety:
Nutrition is important in the Fight Against Chronic Disease

Carnival of MS Bloggers #135

noreply@blogger.com (Lisa Emrich) — Thu, 14 Mar 2013 21:28:00 +0000

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

Lucky Girl

from A Little of Everything

I constantly see a lot of posts about lack of support for some people with MS. I guess I've been very lucky, my family and friends have been nothing but supportive. I think it's very important for people in our lives to be educated about MS and the effects can have on someone.

Someone can look perfectly fine, but could be having muscle spasms and pain, that they just aren't calling attention to.

The most important part, in my opinion, is trying to keep the persons stress level as low as possible. Also family and friends understanding that. It's not always possible,
but I have found cutting out negative people or situations have helped a lot.

I don't think I would have been able to get through this far without the support system I have. And also knowing the people I don't talk to everyday, or for a while, sometimes give me the space I need. And still love and support me regardless!

I'm a very lucky girl.

With a Grain of Salt

from Needle Fatigue

This week was a slow week for news on the MS front. Only one article in my Medical News Today-Multiple Sclerosis news feed: Salt May Play Role In Autoimmune Diseases

Anyone in my family would know why that headline got my attention. It’s because — with maybe two anomalous exceptions — my people are… salt monsters.

When my clansmen go to the Chinese restaurant with the saltiest hot and sour soup in the world, they add soy sauce. The only thing I think I have ever seen spared from the salt shaker is ice cream, and I’m not actually sure of that. So one might think I’d be a pretty damn good candidate for a study of salt consumption and MS.

But the thing is, if you ask my family, as an adult, my devotion to sodium chloride has been pretty weak. (It may be worth noting here too that I’m the only person with MS anywhere in my family, that we know of.) I’d say that for the last ten years — and well before I had my first attack — my salt intake has been half of what I consumed as a wee salt monsterette. All of my snacks are indecently raw and healthy. I use low-sodium soy sauce. But not all the time.

Recently I’ve read some interesting books on “intuitive eating” (if you’re interested, try this one) and found that that’s pretty much how I already go through life. I figure if I crave a nice bloody steak (which isn’t often), there’s probably a good reason for it. And sometimes I shove aside the low-sodium Kikkoman and reach for my jug of tamari. I’m less happy about the sneaky items in my kitchen that seem healthy but probably aren’t — that innocent box of rosemary-olive oil quinoa, with the sinister “spice sack” inside…

If you have MS, you probably get asked this question a lot: “So are you on a special diet to treat that?” This is something I’m still investigating, but I’m pretty sure the scientific consensus is that there is no diet that will prevent the progression of MS. There are diets that might make you feel better — generally speaking — and I plan to write about some of that stuff here — but if there was an actual diet that could stop MS, or even better reverse the damage, I think we’d have bloody well heard about it.

So, the salt issue is something I’m just going to look at as one more of those nutritional areas I can improve on. And after all, if it’s just being considered as a cause of MS, the horse is kind of out of the barn there. And as the studies in Nature point out, it’s only one of many. It reminds me, on the day I was diagnosed officially, I asked my neurologist: “So you said there are all these ‘environmental triggers’ that cause MS — what are they?” His answer was “If I knew that, I’d have a Nobel Prize.”

And on that note, hot and sour soup sounds really good right now.

YouTube Therapy: Making MS Manageable with the World Wide Web

by Katie Brind'Amour of Healthline.com

Although progress in the treatment of MS has been slow, individuals with this condition can at least be grateful for one of the best free resources now available: the Internet. This venue for at-home treatment clearly should not replace treatment advice from your own physicians, but things as simple as YouTube videos can offer a new world of simple symptom improvement advice that can improve your daily life.

According to Healthline.com, the type of MS you have or the degree to which your MS has progressed will impact the type and severity of symptoms you experience. Always remember that your own at-home treatments should be tailored to the severity of your condition—start small, and work your way up!

Use YouTube advice to get a handle on bladder control problems. These Pelvic Control Tips offer viewers five strategies for keeping it in. By doing exercises daily, you can both prevent some bladder problems and improve symptoms you may already have.

Get your balance with simple home-based exercises. For those in early stages of MS or with periods of total remission, more advanced balance exercises may be appropriate. For those with more difficulty balancing or a more advanced stage of the condition, balance techniques designed for seniors may be more comfortable. Regardless of your ability level, start all exercises close to a bed, countertop, or wall that you can use for support and stability in case of a totter or fall. Check out the video instructions for guidance!

If you want to avoid losing your hand-eye coordination as long as possible, YouTube has an answer for that, too! Try early preventative exercises (that require agility) to hone your hand-eye skills. Start with a basketball (sitting, if needed), and work your way up to the tennis ball as shown. For those with more difficulty, try one of the numerous videos for children to rebuild your hand-eye coordination. Stringing beads or foam onto a pipe cleaner can be tough at more advanced MS stages!

Another problem that commonly accompanies MS is depression. Use YouTube videos for a little meditation-like pep-talk or learn tried-and-true strategies for fighting depressive symptoms naturally. If fatigue is a problem for you, consider searching out freebie videos like this little clip of using yoga to fight fatigue.

Finally, we all know that MS can negatively impact both concentration and memory. Although options abound, try this video to learn a single exercise that may improve your ability to concentrate during a task. Memory techniques may be good to mix up from time to time, but advice on starting to improve your memory can be key to getting your at-home training off the ground.

No matter what you choose to focus on—just one symptom or a bit of everything—it seems like a bit of a blessing to be living in such an electronic age. Take advantage of everything YouTube has to offer for making your at-home preventive efforts as effective as possible!

This concludes the 135th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on March 28, 2013. 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, March 26, 2013.

Comments for this post.

Pets Help Patients Deal with Chronic Disease

noreply@blogger.com (Lisa Emrich) — Sun, 17 Mar 2013 15:25:00 +0000

Sunday afternoon, St. Patrick’s Day, I’m trapped under a kitty and can’t get up. Send help. ;) No, wait, that’s not necessary. In actuality, my cat Oscar and I are rather comfortable enjoying some simpatico time on the bed.

Of our three cats, Oscar is the closest to being a “lap cat.” He likes to sleep on the back of the couch just behind my head during the day and at night, he likes to curl up in the crook of my arm and lean into my torso. He is my feline snuggle-bear.

Last weekend, Rob and I traveled out of town for four days. Reports from home were that my little girl kitty, Musette, cried out, meowing through the house, looking for me/us. She is very attached to her “mommy” and I to her.

Oscar didn’t seem to miss us while we were gone, but he did keep me awake nearly all night our first evening back with his demanding need to be pet and hugged during the night. He needed his mommy lovin’.
Read this post in its entirety:
My Pets Help Me Battle MS

Carnival of MS Bloggers #136 - When I Walk Special Edition

noreply@blogger.com (Lisa Emrich) — Wed, 20 Mar 2013 05:53:00 +0000

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

Note to Readers: Today's special edition of the Carnival is dedicated to getting the word out about a fantastic documentary film maker, Jason DaSilva, who lives with primary progressive MS. Jason's latest film, When I Walk, premiered with rave reviews at the Sundance Film Festival but Jason needs support - financial support - to get the film seen throughout the country.

Our friend, Marc Stecker, has provided an excellent summary and review of the film on his blog. See Marc's post below. I also had the privilege to view When I Walk and thoroughly enjoyed it!

More reviews are available on Jason's Kickstarter fundraising page. While there, be sure to read more about Jason's secondary project, the AXS Map, a free and easy way to rate and review wheelchair accessible places in any neighborhood which is briefly featured in the film.

Bits and Pieces: Getting On with Life Edition

from Marc Stecker, the Wheelchair Kamikaze

♦ First up, a chance to help a fellow MSer and become a mini movie mogul, all in one fell swoop. Jason DaSilva is a young filmmaker whose work has been seen at film festivals around the world. About eight years ago, at the age of 25, he was struck with progressive MS and decided to turn his camera on himself. His new documentary, When I Walk, chronicles the first seven years of his struggle with PPMS in unflinching fashion, showing the effects of the disease warts and all even as it exposes the heart and soul of the man at the center of the storm. When the film opens, Jason is having some trouble walking; by its end he’s using a scooter full-time, his vision is increasingly affected, and the disease is attacking his hands. In between, we experience the physical and emotional roller coaster of MS as Jason searches for answers and possible cures, and though one might think this would make for gloomy subject matter, the film is an inspiring testament to Jason’s courage, the power of love, and the enduring nature of the human heart. Even as Jason’s body betrays him, he manages to find his soulmate, a woman special enough to love him despite all of the trepidation and uncertainties that come with MS. When I Walk had its premiere at the recent Sundance Film Festival, and received rave reviews (click here).

Here’s the When I Walk trailer:

So, it would seem all is well in When I Walk land, right? Unfortunately, that’s not the case. Though the film got a big reception at Sundance, it really needs to be seen in cities around the country and around the world. It shows the side of MS that the public rarely sees, not the sanitized version most often portrayed on television and in the news media, but the Full Monty of ever advancing disability and its effects on the body and mind, capturing the jumble of emotions of the human being trapped inside an increasingly faulty body.

The realities of independent filmmaking today requires that filmmakers themselves raise the funds needed to get their works onto movie theater screens around the country, and Jason has started a Kickstarter campaign (click here) in an effort to do the necessary fund-raising. Kickstarter is a website allows individuals to contribute as little as one dollar to a wide variety of artistic, altruistic, or business endeavors. Jason’s goal is to raise $27,000 by April 3, and as of this writing has almost $19,000 to go. He’ll use the funds to do marketing, advertising, and promotion for the film, as well as pay for printing and duplication costs of the film and its trailer.

I don’t think I’ve ever before made a direct plea for financial donations of any kind on Wheelchair Kamikaze, but I was lucky enough to get a chance to preview this film, and it really struck a chord. So please, if you’re able, chip in as little as one dollar to help kickstart When I Walk into a theater near you (click here), and thus help a fellow MSer tell his story and show the world the realities of living with MS and the courage it takes to battle the disease day in and day out. Thanks.

Note that Jason now has less than $11,000 until his goal is reached. Every dollar counts!!

This concludes the 136th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on March 28, 2013. 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, March 26, 2013.

Comments for this post.

Finger-Tip Balance and MS

noreply@blogger.com (Lisa Emrich) — Wed, 27 Mar 2013 15:28:00 +0000

In my weekly research on MS-related topics, I came across an interesting study regarding balance control and the use of fingertips on stationary objects to improve postural stability. It reminded me of our group’s lunch meeting.

Researchers evaluated eleven individuals with RRMS while standing on a force platform with eyes open and closed, feet shoulder width apart and together, and with a light touch contact of the right index finger with a stable surface and without any contact. A force platform is a tool that measures force and movement as objects, or persons, stand or move across them.

Force platforms are often used in rehabilitation settings to measure specific aspects of gait and balance. They have been shown to be sensitive to subtle balance impairments in individuals with MS (Karst, 2005). You might even have a simple force platform in your home as part of the wii gaming system.
Read this post in its entirety:
Instinctive Balance Control in MS

Autoimmune Diseases in Families

noreply@blogger.com (Lisa Emrich) — Thu, 28 Mar 2013 14:55:00 +0000

Several studies have focused on an isolated autoimmune disease, often with complex genetic components, which might run in families (known as familial aggregation). When the same autoimmune disease affects members of a family, it is referred to as familial autoimmune disease. An example of this would be two sisters who both have lupus, or perhaps a mother and daughter who both have RA.

In my own family’s case, several female members have different autoimmune diseases, including RA, MS, lupus, scleroderma, and diabetes. The aggregation of diverse autoimmune diseases that occur in a family (known as familial autoimmunity) has not been studied as extensively as familial aggregation. Recently, researchers in Bogota, Colombia, conducted a systematic review and meta-analysis on the subject of familial autoimmunity, published in BMC Medicine (2013).

Read this post in its entirety:
Do Autoimmune Diseases Run in Families?

Carnival of MS Bloggers #137

noreply@blogger.com (Lisa Emrich) — Thu, 28 Mar 2013 21:21:00 +0000

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

I had the pleasure of talking with Kate Milliken recently about her current and upcoming projects. I am particularly excited about her development of the Moodifier™which is an online storytelling tool that guides patients and caregivers to share their stories via their emotional ups and downs using text, photos or video. What emerges are personal details of a user’s own journey through illness in a searchable format and a view of the user’s entire emotional experience in one glance.

In 2006, Kate Milliken was diagnosed with RRMS. Drawing on her experience as a video producer, Kate created a series of short documentaries detailing her emotional journey through the first years of chronic illness. The website where she posted her videos, katescounterpane.com, received over 50,000 visitors, many of whom reached out personally to Kate to share their own stories. Through her experience, Kate has realized the power of emotional honesty is huge in creating strong connections and she has now launched an Indiegogo campaign to build a tool that will help others connect not only by their shared illness experience but by how they are feeling. The link is here: http://igg.me/p/321295/x/2190745).

Kate is hoping to reach herambitious 75k fundraising goal and the only way she'll do it is if she can get exposure outside her own sphere. Additionally, and specifically among this audience, she wants the many peeps online with MS (and also people who support others with MS) to see what she is doing, get introduced to the concept and potentially at some point, offer to share their stories on her site.

This concludes the 137th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on April 4, 2013. 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, April 2, 2013.

Comments for this post.

Tecfidera (BG12) Approved by FDA for Relapsing MS

noreply@blogger.com (Lisa Emrich) — Wed, 03 Apr 2013 15:31:00 +0000

The long anticipated oral MS drug known as BG12 has been approved by the FDA for use in relapsing forms of multiple sclerosis. The new drug will be sold by Biogen Idec under the brand name Tecfidera (dimethyl fumarate).

Tec-fi-dera is an oral drug which is taken twice daily with or without food. Take Tecfidera exactly as your doctor instructs you to take it. Biogen states that the recommended starting dose is one 120mg capsule taken by mouth 2 times a day for 7 days. The recommended dose after 7 days is one 240 mg capsule taken by mouth 2 times a day. Swallow Tecfidera whole, without crushing, crewing, or sprinkling capsule contents on food.

What are the possible side effects of Tecfidera?

Read this post in its entirety:
Tecfidera (BG12), A New Oral Medication for Relapsing Forms of MS

Carnival of MS Bloggers #138

noreply@blogger.com (Lisa Emrich) — Thu, 04 Apr 2013 21:23:00 +0000

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

Hi All. As you may know, I'm a director on the Board of MS SoftServe (see video). The goal of MS SoftServe which is to help people living with Multiple Sclerosis to learn on their own terms is very important to me. We are very close to making this a reality. I ask you to make a donation of any size to bring this site to the Internet. Our goal to get the site up and running is $64k. Please join me in support at any level!" (link to donate)

Pussy Willow

by Laura of Shine the Divine

soft silver secret

swinging just within arms reach

what have you to teach?

Pussy willow wild and free the halo of your mane caught me by surprise, what joy! Your secret softness is safe with me; most folks drive this road so fast. I watch as cars speed by this passage between there and there forgetting the footpath here where immeasurable treasures await discovery, the silky silver sort, hidden between all the other twisted trees. Before I lost the gift of stride, then learned to walk again, I too passed you by completely unaware for years. To be honest, I’ve always been a seeker, yet it was the losing that downshifted me into the slow lane. And I choose to meander whenever I can, with intentional steps even on days I could move more swiftly, grateful for this life and the mysterious paths that guide me to everyday miracles like this pussy willow tree, unique among its companions, growing wild and free.

Or an eagle, yes a majestic eagle delighting (I imagine) in lunch, perhaps for his family waiting in a nest in an exquisitely tall tree, talons gripping “someone” on the river-side of the highway. We saw him early yesterday afternoon on our drive to my neurology appointment. This seemed a good talisman and indeed it was.

It has been a while since I’ve written about living with MS. The MRI I had last Friday evening shows no new changes in my brain. It is exactly the same as it was a year ago. A YEAR! This is the longest span between exacerbations since diagnosis in 2009. My doctor did point out some tiny black holes; yes my brain like the moon is made of Swiss cheese. Well perhaps a better metaphor would be the vast universe. Did you know scientists actually know more about the universe, even the theoretical multiverse, than they do about the human brain? She said the spaces are not new, however she’d never showed them to me before. *Aha, perfect segue. I just mentioned what I’m blogging about to my husband who informed me she had shown these to me before. I don’t remember, NOT at all.

So while there are no visible changes in my brain, my family and I are clearly noticing some cognitive shifts. I’m imagining the black holes swallowing the words that go missing, as well as events everyone swears I was in attendance for although I have no recollection of “said happenings” happening.

It is very strange 1. To be able to visualize an object or person, to be able to describe it or them perfectly and have absolutely no idea what it is called or what their name is. Sometimes the word or name will come to me later; other times if no one else understands what I'm talking about and can tell me, it is just gone. I mean, yeah, I know everyone has this experience from time to time, especially as we grow older, but this happens to me as though I am a LOT older than my body chronologically is. It’s weird. AND 2. Weirder still is to be told repeatedly, “But MOM you were there! What do you mean you don’t remember?” Or, “Yeah hon, she showed them to you,” kindly softened by, “but you were probably too sick at that appointment to remember.” Swallowed whole, into those tiny black holes apparently.

I have some cognitive testing scheduled next month and that’s good. Maybe there will be some helpful hints and coping strategies, although so far charades works for devoured words most of the time, and the edited/deleted events of my life calendar will just have to be an annoyance others live with. This wouldn’t particularly bother me since in my mind these events never happened anyway, but it is uncomfortable when my kids use accusatory or at the very least exasperated tones of voice when I’ve forgotten something that it appears had been important to them. ~Sigh. ~ Then again they are teenagers, so if I didn’t annoy, exasperate and inflame accusatory tones of voice through forgetfulness, there would be plenty (ha, ARE) plenty of other opportunities to stoke the flames. The word thing is frustrating. My loving husband’s example teaches me however that these irritations are chances to practice compassion toward my self, this amazing body with a Swiss cheese brain doing its very best in every moment. And truly, how awesome and miraculous is it that for the most part this broken body functions quite harmoniously? That any human body mostly functions harmoniously?

I am in remission, have been for a full year. I can walk and talk nearly every day, though by evening things start to get MS’y. I’m not complaining, just explaining the ever-changing landscape of one person’s experience with MS.

And this landscape includes awe and joy and gratitude, black holes and missing words and speech that gets mangled by dysarthria and legs that sometimes just won’t lift on their own and a majestic eagle touching down to hunt along a highway and memories gone missing and pussy willows emerging wild on a country road meandered down slowly on an afternoon when it was all systems go in this body with a Swiss cheese brain doing the very best it can moment by moment.

I met an older gentleman at the dentist office today, I’m guessing close to ninety. He was struggling to sit down. Looked me in the eyes and started to share his story even as I slipped my arms into my coat, the bum knees, his survival of kidney cancer. I said I was sorry for his troubles, told him I could understand the difficulty with a body giving out, that I live with multiple sclerosis. He asked a lot of questions, seemed surprised that I could drive, and was especially curious about treatments these days. Then he told me about his wife whose life was lost to breast cancer and his daughter's too to ovarian cancer. And I felt such deep compassion, could feel his need to connect. I didn't have to rush out the door so I stood there for quite some time listening. No one escapes loss. The losing teaches us to slow down, the losing teaches to pay attention, the losing teaches us compassion. And when you live past ripeness, like this man and many lines cross your face, you meander your way along your path.

I can't say if he sought out a kind stranger to pause with full attention, by the way he settled heavily into the chair with a tired, audible sigh, or if it was me, the open seeker catching a glimpse of the silver halo shining from his still dense mane, remembering (yes some things I do remember) today's Omer teaching from Rav Yael: "...Moshia yishrei lev. The Mystery opens the path of the heart." ~Psalm 7:11 on this the 7th day of counting the Omer. Yesod she b'Chesed, the Indwelling Presence of Love... "Notice acts of kindness and generosity that are bestowed upon you. Notice the moments you respond to yourself and others with love." Either way, we did.

This concludes the 137th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on April 18, 2013. 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, April 16, 2013.

Comments for this post.

MS Awareness: Dying from Complications

noreply@blogger.com (Lisa Emrich) — Wed, 10 Apr 2013 15:33:00 +0000

With the news this week that Annette Funicello, actress and singer, died from complications of MS, awareness of multiple sclerosis is reaching more people throughout the country. Annette is well known and loved for her appearances as an original “Mousketeer” on the Disney’s original Mickey Mouse Club and in the popular teen beach party movies of the 1960’s.

Annette Funicello was diagnosed with MS in 1987 and shared her story in the autobiography, A Dream is a Wish Your Heart Makes: My Story published in 1995. Annette spoke to NPR’s Fresh Air in 1994 about Mickey Mouse ears and why she went public with her multiple sclerosis diagnosis. You can read the transcript on their website.

Read this post in its entirety:
Question of the Week: Dying From Complications of MS

Is Abortion Common in Patients Using RA Drugs?

noreply@blogger.com (Lisa Emrich) — Tue, 16 Apr 2013 14:59:00 +0000

A new study published in the American College of Rheumatology (ACR) journal, Arthritis Care & Research, suggests that medications used to treat rheumatoid arthritis may affect abortion rates in women. Some drugs used to treat RA, such as methotrexate, may be harmful to a developing fetus.

In North America, up to 50% of pregnancies are unplanned and that nearly half of unintended pregnancies are terminated (Winner, 2012). Rheumatoid arthritis, which is more common in women than men, can affect individuals during their reproductive years, putting them at risk for unplanned pregnancies.

Read this post in its entirety:
Abortion Rates in RA Patients Using Methotrexate or Anti-TNF Drugs

Carnival of MS Bloggers #139

noreply@blogger.com (Lisa Emrich) — Thu, 18 Apr 2013 14:18:00 +0000

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

Proprioception and Balance

from Sunshine at Needle Fatigue

“I look up, I look down…”

There are many MS symptoms that will not respond well to medical treatment; in short, you’re pretty much stuck with them. Dizziness — my #1 symptom — is one of them, and so is paresthesia (numbness in the hands, in my case) and other forms of dysthesia (distortion of the senses). One of the oddest things I’ve dealt with is the latter, in particular a distortion of proprioception, which is basically how you know where you are in a given space. Ask my husband how many times I bang into doorways, with my glasses on. And this is also why I am almost never without my walking stick for any great distances; if the dizziness won’t get me, the Weirdness (as I refer to that sense that I’ve suddenly stepped into another, vaguely syrupy dimension) will. But I will say something positive here: although most forms of dysthesia may be out of your control, if you have proprioceptive issues, it is totally worth looking into balance therapy.

Sometime after that summer 2011 relapse, the neurologist suggested I give balance therapy a try. Why? Because it wouldn’t hurt. (It was a good thing I had good insurance.) But I was surprised that I really did derive some good effects from it, and I’ve just reminded myself of this lately. The exercises the therapist gave me, I will now share for free.

The first exercise is pretty odd. But it works. And it may also improve your ability to read in a moving vehicle! Take a business card or anything of that size with at least three sizes of font on it. Tape it to a blank wall. Now, keeping your eyes focused on the largest font, move your head from side to side, reading that text, for 2 minutes. (Your head moves but your eyes do not). No more than 2 minutes, but no less. Do this three times a day if you can, for a few days, then graduate to the smaller font. After a week, tape that business card to a wall with some kind of pattern (I used a map, but wallpaper should work). Do the same thing. Keep this up for a couple weeks before you start the next exercise.

Exercise No. 2 seems a little more normal. But not much. Stand in a corner so that you are protected from a fall on both right and left sides. (You can put your arms out to the sides to catch you just in case. If you have someone living with you I would enlist their help too, at first…) Put your right foot in front of your left one (heel to toe). Close your eyes. Stand there for 2 minutes. You will feel like you’re definitely going to fall. But the important thing about this exercise is it’s a test of will power. Say to yourself “I am standing perfectly still; I am not moving and I am not going to fall over.” You’ll feel your calf muscles go nuts with the strain of keeping you upright, and in the beginning you will catch yourself falling. Your brain is convinced that you’re teetering on some precipice somewhere. But you know better. You say “No, brain, I’m perfectly graceful standing here looking like a Degas ballerina. I refuse to fall.” Or something like that. (If you are a man, please forgive me; I have no idea what the masculine analog of a Degas ballerina might be.) Now do the same thing with the left foot in front of the right. You will fail miserably in the beginning. But with time, you will have a smug smile on your face when the 2 minute timer goes off and you haven’t wavered in the slightest.

Exercise No. 3 always reminds me of Alfred Hitchcock’s Vertigo. In your corner, keep your eyes open. Cross your feet just as you did in the last exercise, but keep your eyes open. Now look up. Look down. Look up. Look down. Now look to the right side. Look to the left. Look right. Look left. Follow with your eyes as you go. Do this for 2 minutes. And yes, according to my therapist, 2 minutes has been scientifically verified as both the minimum and the maximum length of time to do all of these exercises.

I hope these are helpful for my fellow meanderers and weavers. If nothing else, I just saved you a few hundred bucks and several hours at the physical therapist’s!

This concludes the 139th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on May 2, 2013. 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, April 30, 2013.

Comments for this post.

Drug Responsibility on Earth Day

noreply@blogger.com (Lisa Emrich) — Sun, 21 Apr 2013 15:02:00 +0000

We’ve talked about this before, but it is just as important to keep unused medications out of our nation’s landfills and water supply. This year, the Drug Enforcement Agency (DEA) has scheduled another National Prescription Take-Back Day for April 27, 2013. There are 23 locations within 10 miles of my own home in the suburbs of DC which will be available to accept unused medications on Saturday. Find a collection site located near you.

Read this post in its entirety:
Celebrating Earth Day, April 22, 2013

Tecfidera and PML?

noreply@blogger.com (Lisa Emrich) — Tue, 30 Apr 2013 15:35:00 +0000

When headlines hit the news such as last week’s announcement that cases of PML have occurred with a medication containing the same active ingredient as Biogen Idec’s newly approved Tecfidera (BG12, oral dimethyl fumarate), I have a need to know the whole story. Fortunately, I was able to access the case studies and company’s response published in the New England Journal of Medicine (NEJM).

Only weeks following the approval of Tecfidera (oral dimethyl fumarate), also known as BG-12, for the treatment of relapsing forms of multiple sclerosis, the headlines have been scattered with mentions of PML, or progressive multifocal leukoencephalopathy.

In the April 25, 2013 issue of the New England Journal of Medicine (NEJM), two separate cases involving patients in Europe diagnosed with psoriasis who developed PML while taking different forms of dimethyl fumarate. Dimethyl fumarate is the active ingredient found in Fumaderm® (fumaric acid esters) tablets and Tecfidera™ (dimethyl fumarate) delayed release capsules made by Biogen Idec. The cases studies are described in Letters to the Editor in NEJM with a response provided by Biogen.
Read this post in its entirety:
Tecfidera and PML: Is there a direct connection?

Carnival of MS Bloggers #140

noreply@blogger.com (Lisa Emrich) — Thu, 02 May 2013 14:19:00 +0000

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

Fluttering; synchronicity

from Robert at The Gifts of MS

Well, "relapsing/remitting" is one thing, but "fluttering" is another.

There's This Day, just a day like any other, except... my air-quotes "walking" is better. I use the self-propelled wheelchair briefly as a walker (hint to others who might want to try this with their wheelchairs: be sure to lock the wheels. Then, it's just an oddly-shaped walker. With the locks off, it's a face-planter) and things work... not so bad! Not bad at all! I think, is my "walking" getting... better?

Cut to This Other Day, just a day like any other except... my air-quotes "walking" is worse. BANG, it's worse. No creeping-slow-gradual-is-this-maybe-better improvement, it's BANG worse. Fortunately, that's a metaphorical bang, although I've felt that almost any second I was going to hit the ground, it hasn't happened yet. "Yet" is precisely what I'm hoping won't happen, but you never know...

And these changes are day-to-day. Last night was bad, this morning isn't quite as bad, but it's also not quite as good as it has been, sometimes. And this isn't what I think is a relapse/remit pattern, and I'm only guessing because that's never been my experience of The Disease, it's not a multi-day or multi-week vastly better/vastly worse vacillation... It's "Dang, today's better!" followed by "Dang, today's worse!" No rhyme or reason, no "Gee, I did [x] and things worsened, I did [y] and things improved," no visible pattern of causation. Just ... fluttering.

Well, that's life. Some days better, some days worse. Us M.S.ers, we just notice it more than we used to; we think it's happening to us because of The Disease, but it's really just the noticing that's due to The Disease. "Noticing" more clearly is also a side effect of meditation, especially zazen meditation, which is a hard path but one that I'd recommend more enthusiastically than The Disease. Involves fewer M.R.I.s, for one thing.

And a cute pice of synchronicity: A friend of mine sent me a news clip, there's a study going on at the Mayo clinic involving just aspirin! Three groups, one gets placebo, one gets "baby aspirin" dosage, one gets the equivalent of four tablets a day. Well, I don't qualify (I don't have the right "kind" of M.S., I can't do a couple of other things they want someone to be able to do), but I seem already to be on the "some aspirin a day" path, thank you very much musculo-skeletal headaches, and thank you very much Excedrine for putting my favorite brand back on the market because those (for me) have always been better than pretty much anything else I've tried.

So, I'm not being "studied" (as such, at least by the Mayo Clinic), but I'm workin' the same study, kind of, by being between the "high" and "baby aspirin" dosages.

Doesn't really mean anything, statistically speaking, but it does cure my headaches. And really, what part of "makes me feel better" is a bad idea? Well, presuming it causes no "stealth" harm... feeling better is a good idea. Isn't it?

Well, I think so. Besides, thanks to sensitivity gifted us by The Disease, I'm sure I could tell whether I had an active or placebo dosage, which eats into the "blind" part of "double blind" studies. Which means I wouldn't help them, they wouldn't help me. So, I'm staying home and taking my aspirin and wacko Chinese herbs.

And for all of us who navigate the waters of The Disease... how often do we get to say "That's fine by me" and smile?

Well then, let's do it:

That's fine by me!

This concludes the 140th edition of the Carnival. The next Carnival of MS Bloggers will be hosted here on May 16, 2013. 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 14, 2013.

Comments for this post.