I founded the Carnival of MS Bloggers in 2007 to connect the growing MS Blogging Community. My vision was to become the central hub where bloggers could find each other and to feature a collection of independent patient voices.

As larger MS organizations have also begun to feature patient voices on their own websites in recent years, the Carnival of MS Bloggers is no longer the single driving force in serving this wonderful community. For that we should all be grateful.

Thank you for continuing to support me in this one-person labor of love over the years. As of now, I will be taking a break from hosting the Carnival of MS Bloggers.

Please feel free to continue to email me to alert me to new MS blogs to add to the comprehensive MS Blogging Community index.

Sincerely,
Lisa Emrich

Thursday, September 27, 2012

Carnival of MS Bloggers #124

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

MS Hug, Montel Williams, and Massage
 
by Estizer of MS Open Mic

 I read a blurb in the NMSS Magazine that stated African Americans with MS are less likely to use any of the disease modifying drugs than people of other races. That got my attention although I do think its a matter of personal choice,I choose to do drugs! I set out to find the nearest African American support group to check this out. That was 1.5 hours away in Philadelphia.  Like any other group I’ve come upon, I talked more than anyone in the room. Except this one guy, he was pretty cool. I brought up the article and as it stated most of the people in the room were not on medication. But what the article failed to address was how many people in the room had insurance or co-pay issues.  As I looked around the table I was far more concerned with the level of obesity and a host of other health issues that must only complicate MS.

Everyone went around the table and talked about what bothered them last month and then it was the cool guys turn)At first he had a burning pain in his leg JUST LIKE MONTEL but when Montel said it I thought it was totally BOGUS DUDE and he just wanted to smoke some weed, but now I believed him! (Sorry Montel) Next the cool guy said he had an MS Hug and EVERYBODY in the room was like “oh yeah, oh yeah…they’re the worse right? Hahaha, oh yeah” EVERYBODY except ME! All of the sudden I felt like I forgot to put my drawers on. I just sat really quiet so nobody noticed.

Now… how cool was I when two years later I felt an intense tightening around my chest, along with a pain and burning sensation. I clutched my chest… awashed in fear! This was it! Did I go to the emergency room? Because these were all the signs of a heart attack. I DID NOT. Why you ask? Because this was an MS HUG like the cool guy at the support group had described…just like it…right…everybody said so, right?


by Eddie at Multiple Stupidness

Montel Tells

When I first became ill, I scoured the internet for information on MS. Of course, this included YouTube, and there are probably hundreds of videos there concerning MS. Some are informational, some are testimonials and some are interviews or excerpts from programmes. Some are depressing and misleading, some are interesting and informative, and some are absolutely inspirational.

One of my favourites is the interview on Larry King Live of Montel Williams. I hadn't heard of him before I saw the interview, but he is an American talk show host who himself has been diagnosed with MS. As I watched it, it was wonderful not only because here was a man describing very, very similar symptoms to my own, but he was able to express things about MS that I felt, but had never been able to adequately verbalise.

An example of this is the injection I take every other day. I hate taking my injection. I hate it! Why? It doesn't hurt particularly. It's take less than five minutes, and I don't really suffer side effects from the betaferon like I did in the beginning. So why do I hate taking it? Montel Williams explains it beautifully, and very quickly I started directing people to these videos if they really wanted a clear, articulate expression of what MS is like and, because my illness felt so similar to his, a little of what my experience is like.

[Please go to Eddie's blog to view the videos.]

by Caroline of the Girl with MS

Many folks have asked about the benefits of massage for folks with MS.

Bottom line, I prefer spending my money and health on massage than on many of the Western "medicines" created for MS. Which don't seem to be true medicine. They are drugs that cover up the symptoms. So how do we reduce the symptoms and treat MS proactively?

Massage! Among other ways to live healthy including nutrition, exercise, and spiritual well being, massage is a great physical way to remove toxins from our bodies. Whatever caused our MS or whatever exacerbates it, the one thing we can do is keep our body as clean as possible.

Now this is not always easy. Trust me! Coffee, tobacco, alcohol, artificial sweeteners, fake foods, artificial or fake anything can send MS into a tizzy.

The goal always is to reduce these toxins and increase MS beneficial foods, such as cooling mung beans and detoxing apples.

One thing we can do to remove toxins is to have a massage. And what a treat it is!

Massage seems to help in several areas: spasticity, pain, fatigue, poor circulation, and mental wellness...ahhhh.... The National MS Society has good information about massage and bodywork therapies click here. Here is the NMSS summary of how massage effects (or not) the course of MS.
"Massage and the underlying disease of MS:

While massage can be helpful in relieving stress and inducing relaxation, it has no effect on the course of MS. A 1998 study investigated the effect of massage in people with MS on:
  • relief of anxiety and depression 
  • improvement in mood, self-esteem and body image 
  • increased ambulation and improved physical and social functioning. 
The study used self-reports by the participants and found that, at the end of a five-week period, physical and social activity had improved in the people receiving massage. Those in the massage group also reported a decrease in depression. There was, however, no improvement in grip strength and only marginal improvement in ambulation." 
So, keep up the massage and add some strength training or yoga to keep those muscles strong!

Lance Armstrong's LIVESTRONG.com talks about the benefits of massage on pain in MS sufferers. By reducing pain, massage can help folks become more mobile. Less pain = more movement. Folks withnMS don't want to be in bed. Sometimes we don't have much choice.

Massage & Bodyworks Magazine has done their research with regards to MS and massage presenting us with one of the most comprehensive yet simple to digest articles summarizing MS, the disease, along with the benefits of massage.
"For the MS patient, a well-being approach for addressing body, mind, and spirit is essential to combating the effects of the disease. Helpful self-care can include a daily routine of tai chi or yoga, meditation, and attention to diet." 
They get it. They get the disease and seem to understand what we need to feel better.

Many therapists, especially in the Northwest where prevalence is higher, jphave numerous MS clients. Crowell is one of them:
"With her extensive MS experience, Crowell says she has learned the importance of balance between releasing spasticity and maintaining enough tone for the client to function. “If you relax someone with MS too much, they can’t walk when they get off the table. They use the spasticity to keep them erect.” By implementing a reflex response technique, she reduces spasms without decreasing tone. The client is better able to maintain standing balance, and for those who are not ambulatory, core stability is increased so they can sit better. “One of the things people tend to lose is control. You are working with refining the amount of contraction they use with a given movement."
Wow! This is some great stuff. A must read for all with multiple sclerosis.

The American Academy of Neurology talks about the most common massage techniques used for reducing pain in MS patients:
  • Craniosacral massage: Light pressure is applied to the head, neck, and spine to ease tension and compression. This type of massage is not appropriate for people with conditions that could be affected by intracranial pressure changes, such as acute aneurysm, cerebral hemorrhage, or hydrocephaly. 
  • Lymphatic massage: Light, rhythmic strokes are used to improve the flow of lymph (a colorless fluid that helps fight infection and disease) and get rid of waste throughout the body. Lymphatic massage is often used to reduce post-surgical swelling and to help heal sports-related injuries. 
  • Myofascial release: Pressure and body positioning are used to loosen and stretch the muscles, fascia (connective tissue), and related structures. Both physical therapists and massage therapists who are appropriately trained use this technique.
  • Reflexology: Specialized thumb and finger techniques are applied to reflex points in the hands and/or feet. 
  • Shiatsu: Gentle finger and hand pressure are applied to specific points on the body to relieve pain. 
  • Swedish massage: A variety of strokes and light-pressure techniques are used to enhance blood flow, remove waste products from tissues, stretch ligaments and tendons, and ease physical and emotional tension. 
  • Trigger point massage: Pressure is applied to trigger points (tender areas where the muscles have been damaged or where tension accumulates) to alleviate muscle spasms and pain. 
One of my favorites? Lymphatic massage...you can feel the toxins being squeegeed out of you! But I love them all. In fact, I'm off to get one now! What's your experience? Pro massage or toss it?


This concludes the 124th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 11, 2012. 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, October 9, 2012.

Thank you.

Thursday, September 13, 2012

Carnival of MS Bloggers #123

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
 
FDA Approves MS Pill, MS Inconvenience, 
and Anti-inflammatory Foods to Help MS

from Lisa Emrich of Brass and Ivory: Life with MS and RA 

Late Wednesday afternoon, the FDA announced that Aubagio (teriflunomide) has been approved for adults with relapsing forms of MS.  Click through to the original blog post to find the FDA announcement, a Reuters news report, abstracts for 12 academic studies published between 2006 and 2012 regarding teriflunomide and oral medications in development for MS, and the Genzyme press release regarding the FDA approval of Aubagio (teriflunomide).

from Stax of Multiple Sclerosis & Me



i hate being sick; having MS!!

that's all; no funny stories, no lamenting or feeling sorry for myself.  i just hate it; it's a pain in my ass and a big inconvenience.



from The Girl With MS 

Nutrition will allow you to Thrive with MS! Anyone with MS should know what cooling foods are and how they affect the body and the disease.

My research began over ten years ago. Three different Chinese medicine doctors diagnosed me as being kidney yen deficient. While investigating what these doctors were telling me, I found that many of the symptoms for this 5,000 year old Chinese disease were shockingly similar to that of modern day MS and many autoimmune diseases for that matter.

When asked about the cause the Chinese doctors all responded with "Western diet and lifestyle". The Western diet contains many processed and falsly seasoned foods not to mention excess fat. Western people are known to skip meals, eat on the hoof and gorge on salte, fat and sweets with no care about their bodies.

According to Chiness Medicine there are different kinds of food: cool, neutral and heating. Depending upon our makeup and health dictates which foods are best. For an inflamed person with MS the cooling foods are desired.

(FYI - Chinese Medicine offers much more than discussed here where it's been crudely simplified. Resources linked below)

So what foods cool off the body and help my MS?



Some obvious food such as cucumbers come to mind. Apples, bananas, citrus, clams and many more. But what about sushi? Have you ever eaten the eel? Unagi? One summer there was a heat wave in Japan and a subsequent shortage of Unagi due to its cooking effect on the body.

Imagine using foods to cool off and saving that electricity bill!

Information about cooling foods and nutrition for MS has grown significantly these past ten years. Here are some places to check out:

A good primer on Chinese Medicine and food classifications

Spreadsheet of foods by class from DocStock

Heating vs Cooling Foods. A review

Food as Medicine - a look into Chinese Medicine. (downloadable PDF)

Chinese Food Pyramid for Dogs and More

Nutrition will allow you to Thrive with MS!


This concludes the 123rd edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 27, 2012. 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, September 25, 2012.

Thank you.

Wednesday, September 5, 2012

Carnival of MS Bloggers #122

Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
 
Sleep Disorders, MS, and Multipurpose Sticks
from Thomas of BiPolar, MS and still as handsome as ever 

Take a look at this picture:

On the left you see a very dilapidated golf club, a one iron of some ancient make probably used by the Morris clan (golf joke) and left in a garage sale.  The paint wasn't on there originally.  Just an added touch to being stuck in a garage by a guy who found that he could not play golf, but could hit a ball with a stick and follow it around.  I just didn't feel the need to pay some stranger for the use of their land to hit the little ball and follow it around privileges.

The club has a MS use though.  A few times a week I grab the club, stand in the grass, assume the position, and take a good swing.  If I remain standing, its a good day.  If I come down goofy or start to tumble, this is not a good day and I should be careful.  So while my one iron and its friends in the bag sitting in my garage may never see a golf course again, they do remind me of another day when I could freely play a sport I sucked at.

Now as for the stick in the middle of the photo, that's my new walking stick.  On Friday, Jackie and I went to the Southern Vermont Craft Fair in Manchester, Vermont.  This has been a tradition for many years and we'd stay at local B & B's and go to the Craft Fair at the rolling lawns of Hildene, the former home of Robert Todd Lincoln and his family.  Highly recommended. Well, the bed and breakfasts closed.  And this year the Craft Fair moved to the other side of Manchester.  Ch-ch-ch-ch-changes, said Mr. Bowie.

Time to turn and face the strain.  The Craft Fair is in the midst of a field, a Vermont field, meaning rocks and little gullies and tiny holes, and if you have any problem with coordination, and I believe lots of MSers do, here was a challenge.  If I held my wife's hand I could move pretty well, going from booth to booth, but the moment she stopped to look at jewelry or whatever and I continued on my own, any quick turn or "excuse me" step out of the way might send me reeling into any booth anywhere, and I'd find myself staring at a piece of crockery that would only set me back three hundred bucks.  I'd mumble some excuse like - "Astounding work. I must remind the Queen." - and move along, find Jackie and head out.

We got a drink and hit the food tent where free samples were distributed.  My favorite was the rye whiskey (butterscotch in a paper shot cup).  When we left the food tent, we headed out to the tents off to themselves on the other side of the field.  There was the temporary abode of Debi Hitter, purveyor of custom made walking sticks (Eagle Scout sticks a specialty).  I ended up with one of the those sticks, and used it successfully to move around the craft with slightly more balance.  The stick also opens up new possibilities for career options:

1. Religious leader  (i.e. Moses) - see the staff in his right hand - by the way, the statue is in Washington Park in Albany NY, and this shot was taken during the Tulip Festival held each May.  Let's see, I might  ask my former employer to "let my people go", but they would, and then try and run the Department of Social Services with trained monkeys  (a lot easier to pass out bananas than support).  And where would I lead my people anyway? Across the street for lunch? The parking lot?

2. Robin Hood - there's that scene in every Robin Hood movie and parody from Mel Brooks to Daffy Duck where Robin and Little John parry with quarterstaffs, like this.  See maybe I could become the local Jedi Knight for the Luther Forest area.  There must be an opening somewhere.  I know my first enemy, the chipmunks in the back yard. 


I figure a swing or two with my new Jedi stick (I can make the noises) and those little buggers will head off into the Endor forests.

3. Join one of those German groups with the leiderhosen, and the sticks with the jingle bells on them, but I'd probably be asleep in my chair by the second song, so never mind.

I'll try to come up with other stick uses (open for suggestions).  Right now I'll use it on tough walking days.  It's better than a wheelchair.  It's a reminder that tough days may be ahead, but I can handle them in style.  The lady who made the stick is also interested in providing others to the MS group.

From the update pile: I've got appointments with both my new psychiatrist and neuro this month, and just need to step away from my old psych (who I noticed in the newspaper today didn't pay his taxes and got slapped by the Feds), and do my paperwork to transfer stuff. Best of luck to my old neuro as she moves to New Jersey.  I found that out through a meeting of the minds of the two people who showed up at the support group Thursday.  I could not have met a more gracious lady, and I hope the group works out.

from The Girl With MS

Why can't we sleep? There is no real reason other than MS as to why I have sleep issues, but it's amazing how I can mess myself up!

Here I am in the beautiful Eastern Sierras listening to Bishop Creek as it riffles by below the cabin. My current view:



On vacation but with a few minor projects and tasks to tend. But not enough to keep me awake all morning. The first night I was exhausted and fell asleep at 9pm when my head hit the pillow, awaking at 4am, which did constitute seven hours of sleep. But I didn't want to be awake at 4am.

So last night I aimed to stay up later thinking I could get seven hours and wake at a reasonable time. Now as the day progressed, after some time in the warm Bishop sun, some fly fishing and some creative cooking, I thought to myself, you are at 8,500' altitude, "Go fill up your water glass". Yes, I thought this often, every time I opened another beer.

I even thought of the magnesium supplement, magneleveux, in my bag, as I opened another beer.

Daydreaming, sketching, visualizing, I had a fun night, as I opened another beer.

Exactly what NOT to do with MS!

Sure, I stayed up until midnight, then woke up at 4:38am. Bing! And I'm awake. The need to pee and the incessant leg spasticity kept me squirming all morning long. The 42 degrees winding through the window bringing with it the sound of the creek was my saving grace. Ugh. I know better. I did take 1/2 a klonopin and a melatonin before going to bed. And another half of klonopin in am when couldn't fall back to sleep.

Three glasses of water later, a banana, magnalevure and some Shen Trition, and this Girl with MS is finally feeling a little better.

What I could have done:
  • Enjoyed the great healthy dinner we had (micro greens, salmon, veggies)
  • Dry brushed my legs
  • Took a not to hot bath
  • Read a book
  • Wrote in blog
Etc....

Yes, these are all better choices then the one I made. So, live and learn. Let go and let God as they say.

This all inspired me to do some researching on sleep and MS. Here is some of what I found:

This is a great summary from WebMD of what can cause folks with MS to have restless sleep: Multiple Sclerosis and Sleep

Life aspects that can effect sleep patterns in those with MS:
  • Stress
  • Anxiety
  • Eating
  • Drinking
  • Nutritional health
  • Age
  • Physical activity
  • Mental activity
  • Spasticity
  • Depression
So, how do we deal with this sleep issue?

Time to change our habits!

Food suggestions:

Small bananas are good: (they still contain sugar so small is better before sleep)

"Combining the amino acid tryptophane with carbohydrates as well as calcium and magnesium can help your brain relax and your body nod off to sleep."

And the magic of oatmeal can make the difference of a more restful sleep pattern:

"Calcium has been proven to help the brain use and process tryptophan, while magensium, a natural sedative, acts as an "assistant" to calcium helping it to be absorbed into your system."



Check out more Foods to eat before bedtime from The Health Central Network

There are other things too. This is just a start!

There is Proof that sleep patterns affect MS!

If you've been having sleep issues and feeling more fatigued, there is proof that the two go hand in hand.

Check out this study: "Treatment of sleep disorders can improve fatigue and other clinical outcomes in MS."

“@MSBuzzNews: Multiple Sclerosis Research: Treatment of sleep problems reduces fatigue: Epub: Côté et al. Impact of sleep diso... http://t.co/f68LV6M8”

Ok kids. There is more to come on this and would like your thoughts but there's a high Sierra creek calling my name....

from Lisa Emrich of Brass and Ivory: Life With MS and RA

Sleep disorders, especially sleep apnea, can cause fatigue and increase the risk of cardiovascular disease.  Untreated sleep apnea can lead to depression, heart disease, diabetes, obesity, and excessive daytime sleepiness.  Stress hormones released during frequent drops in blood oxygen level caused by sleep apnea increase the risk of high blood pressure, heart attack, stroke, irregular heart beats (arrhythmias) and heart failure.  Excessive sleepiness can lead to fatal car crashes and accidents at work.

Sleep disorders may be under-diagnosed in both rheumatoid arthritis and multiple sclerosis, according to research.  For information regarding sleep disorders, including sleep apnea, and their connection with RA and MS, please read the following posts I wrote this week for HealthCentral.

Read:

This concludes the 122nd edition of the Carnival(Apologies for the late posting.)  The next Carnival of MS Bloggers will be hosted here on September 13, 2012. 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, September 11, 2012.

Thank you.

MS Bloggers A-D

MS Bloggers E-L

MS Bloggers M

MS Bloggers N-S

MS Bloggers T-Z

MS Caregivers and Loved Ones

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