Thursday, March 28, 2013

Carnival of MS Bloggers #137

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,, 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:

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.

Autoimmune Diseases in Families

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?

Wednesday, March 27, 2013

Finger-Tip Balance and MS

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

Wednesday, March 20, 2013

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

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.

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.

Sunday, March 17, 2013

Pets Help Patients Deal with Chronic Disease

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

Thursday, March 14, 2013

Carnival of MS Bloggers #135

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

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.

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.

by Katie Brind'Amour of

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, 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.

Tuesday, March 12, 2013

Bright Fruits and Vegetables are Good for You

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