Thursday, September 26, 2013

Using Yoga for Mental Wellbeing

Yoga helps me to stay focused and in-tune with my body.  So often I will find areas of tightness which need to have the courage to “let go.”  If you are wondering if I mean this physically or mentally, it’s a bit of both.  Unless I’m listening to a yoga instructor who has the class doing something which I absolutely am incapable of doing, I am traveling within with my mind.

The yoga class I’ve most recently attended locally is called the “Gentle Yoga” class.  We do a lot of stretching and gentle movements.  After a 90-minute session, I always feel better.  My joints seem to have more space in them as does my mind.

To be honest, it’s the calming the mind aspect of yoga which I find more challenging.  I am not one to not be thinking about something.  I’m always thinking about something.

Read this post in its entirety:
Living with RA: Get Up and MOVE IT! Exercising with Yoga to Stay Centered

Sunday, September 22, 2013

Treatment Decisions: Is Your MS Stable?

New research suggests that it may be safe to stop taking disease-modifying medication if your MS has been stable for an extended period of time.  In a recent study published in the the journal Arq Neuropsiquiatr, researchers in Brazil followed a group of 40 patients with relapsing-remitting MS for whom their disease had been clinically and radiologically stable for more than five years and who voluntarily chose to stop using disease-modifying therapy.

Patients included in the study had continuously used one of the following immunomodulatory disease-modifying drugs - Avonex, Betaseron, Rebif, Copaxone - for more than 5 years and up to 14 years.  To be included in the study, participants had to be disease-free for at least 5 years while on therapy.  Disease-free activity was defined as no clinical relapse, no sustained increase in disability as measured by EDSS (expanded disability status scale) score, and no new gadolinium-enhancing or active lesions as seen on MRI scans.

Read this post in its entirety:
MS and Medication Decisions: Can I stop taking my disease-modifying drug and still be okay?

Thursday, September 19, 2013

Carnival of MS Bloggers #148

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

By Miss Chili's Hot Stuff

Next week, I'll be off to MS camp. What it's really called is something more like MS hospital-university. At any rate, it's only 4 weeks, which is why I think of it more like camp than anything else.

Four weeks of living in a small room with WiFi, with 20 or so other people of different ages, different lots of things that I'm not, including Danish-speaking. Ugh. More on that later, I'm sure.

Per and I were there on Monday for an introduction day. We went through the main building, saw the layout of the rooms, found where different activities took place, introduced ourselves to the rest of the 'campers' (*snerk*), and had a meeting with the woman who is my contact-whatchamacallit. During this meeting, we talked about what I could and couldn't do physically to what I would/wouldn't eat or what time I could possibly get up every morning to what I wanted to get out of my participation or what was reasonable to work towards -- not that they expect anything out of me, but this is something that many other MS-afflicted folk want to participate in, and not just once but as often as there is space available.

Going through the various rooms, from dining rooms to exercise rooms to patients' rooms, Per wheeled me through and, when we were in the exercise room with the enormous Pilates balls, he wheeled me on towards a ball, so that I had no choice but to kick it. That's my story, and I'm sticking to it.

from Miranda's MS Blog

Hello! the madness of the summer is over (which I thoroughly enjoyed!) and at last I manage to blog about this amazing experience.

george Jelinek et al, breakfast OMS meetingSo in July, I attended the first UK retreat run by the Overcoming MS UK (OMS) organisation,  (now a registered UK charity), who allowed me to go so that I can hopefully help them to run workshops etc in the UK, to help people with MS understand the effects of diet and lifestyle modification on MS.

From left to right, this is Linda Bloom, patron & founder of OMS UK, who has MS herself and is very well, Sandra Neate, Prof Jelinek’s wife, an emergency medicine consultant in Australia, Professor Jelinek, professor of emergency medicine and author & founder of Overcoming MS ( & very fit & well with MS), Gary McMahon , head of OMS UK, all round top bloke, with a business management background, but utterly committed to health, having helped his wife recover form serious illness using dietary & lifestyle measures, Dr Craig Hassed, an Australian GP and  medical  university lecturer, author & international speaker on mindfulness, and me.

What did I expect?
Well, I expected that I’d already know it all ( how arrogant!) …. I expected that I’d enjoy meeting the Professor and crew, but might shy away from too much socialising, not wanting to feel different as an MS nurse…. I expected I’d be bored in the evenings and took lots of work to do…. and that I might get a bit hungry on the fully vegan diet provided, and took a big loaf of bread for my bedroom… and I expected that 90% of the focus would be on diet & supplements, with a sliver of meditation thrown in for good measure….

What actually happened?
a) I didn’t know it all… & I’ll share my new understandings here,                                b) I enjoyed meeting every person on the retreat, was inspired by the company of so many intelligent, stimulating individuals and couples who dare to think differently and think for themselves,  had a lot of fun, was never once bored, never did any work (!), and am actively staying in touch with the group via an email group because I want to!                     c) Was absolutely stuffed, because  the food was tasty, vibrant, delicious and really ‘stuck to your ribs’.
d) I got my focus back through meditation, and realised how powerful the effects of even a boring daily grind of meditation that you don’t even want to do can be !!
for this, it helped having a little cell, with no TV or internet connection….

Prof Jelinek & his wife SandraSo, first impressions happened the evening before the retreat, when I went out for a meal with the OMS staff/trainers. Firstly, the Professor is seriously fit and healthy looking, and runs or swims daily more than I do in a week ( if not 2), and comes across as genuinely lovely, thoughtful, intelligent, educated, and kind person. He is obviously ably supported by his wife Sandra, who shares his qualities, diet & lifestyle, and took on the sessions about the structure & role of different fats.

During the meal, in conversation, the Professor talked about how he would like to slow down his international work running the retreats ( he does already have his full time academic medical work), and I felt honoured to hear him relate this personal anecdote, with some emotion. He said that he had recently experienced a relaxation of the drive to always be working to get his message out there, and that it had caused him to wonder and reflect. For some reason his age suddenly became very meaningful to him, but he couldn’t work out why — until he suddenly realised that he had now passed the age that his mother had been when she died, severely affected by MS (she took her own life). And so somehow, he had ‘made it’ , and proved to himself the value of the work he’s been doing all these years.

I’m not going to re-iterate all the points of the OMS approach here, as I’ve talked about it many times, and its all available for free on , there’s the books, and also a forum on the website where people can discuss points; I’m just going to go into some of the things I hadn’t quite nailed.

We sat in a circle around the outside of a large room, or on beanbags in the middle, and there were about 40 people. Most people had come with their partner, and some on their own. Teaching was very good quality, and we had lots of time to ask questions and discuss fine points.

prof jelinek teaching UK retreatHere’s the Prof teaching, and Linda in mid leap… she & Gary had organised and were running the show, she had her new baby in attendance, and during the week was constantly jumping up and physically running, fetching, carrying, leaping over boxes & beanbags, & looking radiant throughout.

Flax seed oil – in the most recent research carried out by OMS ,taking this trumped fish oil for having reduced disease activity. The best amount and way to take it is 2 dessert spoons drizzled over food ( or used to dip bread or in salad dressing) daily, and apparently, the best tasting is from  I just got some, and can confirm, it looks like sunshine and tastes… nutty but fine. Going to see if I can get a discount for Bedford MS Therapy Centre….

I’m no stranger to meditiation, having taken it up in my 20s, however, life had started getting on top of me, and when I attended the retreat, I was pretty stressed.

I was taken aback by the serious focus on meditation – every day, we started and finished the session with a half hour mindfulness meditation, led by Craig Hassed. I also did some of my meditation again in my room on a morning. It was hard! It is hard! But it is real – it has real, measurable mental and physical health benefits, and it’s worth doing every single day. By the end of the week I felt that I had met my real self again, and I was OK.

This concludes the 148th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on October 3, 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, October 1, 2013.

Friday, September 6, 2013

NIH Funds Genetic Research into Cause of Nerve Damage in MS

The Benaroya Research Institute at Virginia Mason (BRI) was awarded a $1.9 million grant from the National Institutes of Health (NIH) to study molecular changes in the human genome which may be responsible for damage to the central nervous system as seen in multiple sclerosis.

Researchers aim to explain how and why certain white blood cells contribute to the development of MS.  “We want to understand the factors that make these cells target the spinal cord and brain to cause disease,” said Estelle Bettelli, PhD, BRI Assistant Member and co-principal investigator of the study in the August 4, 2013 press release.

"With Dr. Bettelli's research advances and with the new technological innovations in genome research, we can look at specific marks present in the genome of these cells and understand how they are generated and how they can be controlled," says co-principal investigator Steven Ziegler, PhD, Director of the BRI Immunology Research Program.

Read this post in its entirety:
NIH Awards $1.9 million to Find Genetic Markers to Explain How White Blood Cells Cause Damage in MS

Thursday, September 5, 2013

Carnival of MS Bloggers #147

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

By Jennifer Digman

Not so long ago, it really would puzzle me when someone would tell me what an inspiration I was. Generally, I would smile, say thanks and think to myself, “You really should strive to find inspiration in something a little higher than me and my Multiple Sclerosis.

I mean, has anyone ever told you what an inspiration you are? An inspiration not because of your latest accomplishment but because you’re living with MS or some other illness.

Really, like you had a choice in that matter?

It wasn’t as though some great mystic force said, “How about living with a chronic illness for the rest of your life?” and your reply was, “Why, yes. That sounds good like a good plan.” And your inspirational life began.

But it was my amazing husband, Dan, who made me realize people are not inspired by my just having Multiple Sclerosis: it is how I live with the disease that inspires others. My choice to move forward optimistically and with purpose regardless of what the disease dishes out may inspire some. I don’t live hoping to be an inspiration, but what a nice side effect to the decisions I make.

Honestly, there are times when my positive attitude tank gets a little low, too. Fortunately I’ve realized that inspiration can be found all around us. For example, after finishing my graduate degree and unburying my nose from textbooks, I’ve rekindled my relationship with my neglected television and have found some great sources of inspiration.

The Sundance Channel program Push Girls follows the lives of five women who have been paralyzed by either illness or accident. The reality show chronicles the day-to-day challenges and triumphs that Angela, Tiphany, Mia, Auti and Chelsie each encounter. Since my becoming wheelchair dependent, I had never seen such honest, accurate depictions of life with a chair.

My beautiful niece Elizabeth joins me on my Standing Frame
My beautiful niece Elizabeth joins me on my standing frame.
These ladies are role models, inspirations and my peer group all at the same time. When Mia or Chelsie used a standing frame, they were strengthening their muscles—not thinking, “Hope this inspires someone.” But it did inspire someone – me. After buying my own used standing frame, I now stand 2 to 3 times a week for 30 minutes at a time. My circulation and breathing has gotten stronger. I feel more powerful and better about my abilities.

Just as the summer season ended for Push Girls, I slipped into Lifetime’s hit fashion show Project Runway another one of my other TV favorites! But never did I expect this program would introduce me to a designer who inspires me in my life with MS.

Justin is a 27-year-old fashion designer who is deaf. He is incredibly talented and lets his work speak for itself. As he has gotten closer to his fellow designers, Justin has taken the opportunity to gradually educate them about his deafness and the deaf culture. His opening up to others about his realities is the same way I aspire to help others understand MS and what it’s like to live with this chronic illness Dan and I share.

This is why he and I advocate, blog, speak and lead a self-help group. In addition to helping to better our lives, these activities also provide opportunities to help others move forward with theirs.

Like all five Push Girls and Justin, I don’t believe any of us are trying to be inspirational. We are just living our lives as best we can—much like so many of you who are inspiring so many others just by the way you live.

Do you ever think you are an inspiration to others? Whether or not you realize it, you are.

Every day.

This concludes the 147th edition of the Carnival.  The next Carnival of MS Bloggers will be hosted here on September 19, 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, September 17, 2013.