Friday, February 27, 2015

Break time

Sometimes the greatest gift, or the finest destination, is the permission we give ourselves to rest or play or be.

Thursday, February 19, 2015


I was asked to be the keynote speaker for a national conference today.


Time to start working on a message!

Tuesday, February 17, 2015

Public Support Groups?

I am on Facebook a little bit here and there.  I've chosen not to be a very active participant in that realm, but I watch my friends and my families post about their doings.  It is an interesting way to connect with people from the "way back" - like HS, college...

One trend I've noticed is a multi-level marketing concept where people (women?) post information about a product they are selling in conjunction with the promotion of healthy eating and exercise. People in these groups tend to encourage one another on their journey, which, at least from the outside, appears to be mainly about weight loss.

I have no idea if the model is successful, but it sure is prevalent.  Of course, there is a product to sell, so I'm sure that motivates the promoter to be actively engaged with the potential customer base.

Is there a space, like this, that would work for MS support (sans the product sales and promotion of body image)?  Could people bond together to encourage one another on the choices of every day life? This blog is not generating much comment, so I have no idea if it is of any use to anyone.  Perhaps a more interactive forum would be better?

Yes or no?  Let me in on your thoughts!

Friday, February 13, 2015

Another Day on the Treadmill

It is better than nothing, but being on the treadmill does get monotonous after a few weeks.  Really craving some outside (and WARMER) air!  The sun did shine here today, and it was lovely, but I had to make a decision between the indoor treadmill and close to 0 F outdoors.  Indoors, it was.

For me, one thing that makes the time spent on a treadmill worth it is the amount I effort I put into it. Strangely, the harder I work, the more bearable it is.  I guess I'm too engaged in surviving to think about what I'm doing.

Spring is coming; it always does!

Tuesday, February 10, 2015

The Body You Have

"Everything changed the day I understood that if I was to become a runner, I would have to run with the body I had."  - John Bingham, "The Courage to Start"

Substitute whatever fits for "runner:"  walker, dancer, yogi...

Every day I must choose to exercise the body I have.  That body can improve, but if you are deterred from exercise by limitations, it never will.

Sunday, February 8, 2015

Mandolin Day

I always thought my small hands would be great for playing a mandolin!!  Then, I got a mandolin last February and realized my hands aren't big enough!!  It's been a fun journey to mess around with this instrument.  I have no musical background, so this is all new and exciting for me.

It's a great new skill that works on finger strength, coordination, my brain, and my soul.

Relaxation can be hard to come by, and playing a little music sure seems to help.

Do you play an instrument?  Sing?  Is music a part of your personal expression and life therapy? Maybe you can give me a few lessons.  I need them!!

Pick on!

Thursday, February 5, 2015

A Negative in the Research??

Continuing the theme of research on MS and exercise outcomes, and I have found a few references to something that is making me quite uncomfortable.  A "negative" of sorts...

I stand by everything in my previous post.  The tested and measured outcomes for exercise programs are positive.

BUT this is not true across the board, and, hence, I pause.

There were two sub-groups that had very limited or no measurable gains from exercise programs: persons with MS who had high BMIs and those who were in later stages of progressive MS.  This news is alarming to me because these are two of the groups who stand to gain the most.

I searched high and low for the WHYs behind these limited outcomes.  No clear answers.

Somehow the combination of high BMI and MS and/or the advanced stages of the disease are even bigger challenges than the general MS population,

What's the course of action, then?  Simple to say, but dire in its consequences, I believe it is a mandate to fight tooth and nail against falling into either of these categories and start the exercise regiment and healthy living and eating ASAP!  We've got to encourage each other to move.  We've got to devise and access exercise programs for people who deal with MS.  We've got to move forward with the work and the research.

Anyone with thoughts or experience with this, please JUMP IN!

Tuesday, February 3, 2015

What does the research say?

My personal, anecdotal evidence should not be enough to convince you of much of anything.  It's time to look at some of the body of evidence from published work to see if exercise and movement is indeed tied to better outcomes in mobility, strength, and fatigue.

My first thought is that there does not appear to be an overwhelming body of evidence.  I had hoped for much more:  deeper, wider and broader in scope of investigation and outcomes. However, the results I did find were positive, and today I will share with you a summary of some recent work on exercise and MS.

Overview of outcomes:  reduced fatigue, increased mobility, reduced pain, enhanced quality of life, better balance, increased bladder control, reduced sitting time, better memory.

Some details follow if you are interested.  At least now, you are not just taking my word and experiences as truth.

  • Strength Training and Fitness.  A new study has found that people with multiple sclerosis may reduce perceived fatigue and increase mobility through a series of combined strength training and fitness exercises. A first phase of general fitness was followed by a personalized intervention program based on each patient’s maximum force. The scientists assessed the effects of training and found that the experiment group gained "a fair amount" of functionality while the control group remained stable.The study also includes an analysis of motivational aspects and an interview on the perception of the effects of sport. This part is especially interesting as it shows an improvement of the participants’ quality of life, although the University will continue working with the MS patients to see the long term effects.  Source: Science 2.0 © 2014 ION Publications LLC (01/10/14)

  • Yoga.  Specialized program improved quality of life, decreased pain and fatigue.  A specially-designed yoga program for these MS patients not only improved their physical and mental well-being but also enhanced their overall quality of lifeWhat they discovered at the end of the eight-week trial was that those who participated were better able to walk for short distances and longer periods of time, had better balance while reaching backwards, fine motor coordination, and were better able to go from sitting to standing. Their quality of life also improved in perceived mental health, concentration, bladder control, walking, and vision, with a decrease in pain and fatigue.Source: Rutgers Copyright 2014, Rutgers, The State University of New Jersey (02/09/14)

  • Taking steps.  In the overall group and after adjusting for baseline differences, the mean daily sitting time in the intervention group at follow-up was 7.2 hours (SE 3.3), compared with 8.8 (SE 3.3, P<0.05) for the wait-listed controls.  For the peer-protocol group, mean daily sitting time at follow-up was 6.8 hours (SE 3.5) with the intervention versus 8.9 (SE 3.5, P<0.05) for controls, Klaren reported.Primary source: Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis
Source reference: Motl R, et al, "Does the effect of a physical activity behavior intervention vary by clinical characteristics of people with multiple sclerosis?" CMSC-ACTRIMS 2014; Abstract RH05.

Additional source: Consortium of Multiple Sclerosis Centers and the Americas Committee for Treatment and Research in Multiple Sclerosis
Source reference:Klaren R, et al "Efficacy of a behavioral intervention for reducing sedentary behavior in people with multiple sclerosis" CMSC-ACTRIMS 2014; Abstract RH04.

Source: MedPage Today © 2014 MedPage Today, LLC (04/06/14)

  • Moderately Intense Activity.  Study finds short bouts of moderately intense activity can have big impact on tiredness levels of people with MS.Multiple sclerosis sufferers can reduce the fatigue that accompanies their condition by undertaking short bursts of moderately intense exercise, such as walking or cycling, according to new research.Source: The Guardian © 2014 Guardian News and Media Limited (15/01/14)

  • Yoga.  Objectives: Yoga has been found to be effective for addressing problems with strength, flexibility, balance, gait, anxiety, depression, and concentration. Varying degrees of these problems occur in individuals with multiple sclerosis (MS). This study examined the effects of a comprehensive, 4-month yoga program on strength, mobility, balance, respiratory function, and quality of life for individuals with MS.   Methods: Twenty four individuals with MS participated in an intensive Ananda Yoga training followed by 17 weeks of home practice.   Results: Significant improvements in functional strength, balance, and peak expiratory flow and a trend toward improvements in mental health and quality of life outcomes were detected following the intervention. Conclusions: The results of this exploratory study suggest that yoga can have a positive impact on physical functioning and quality of life for persons with mild to moderate MS.

Salgado BC, Jones M, Ilgun S, McCord G, Loper-Powers M, van Houten P.Department of Physical Therapy, California State University, Sacramento, CA.
Sources: Int J Yoga Therap. 2013;23(2):27-38 & Pubmed PMID: 24165521 (08/11/13)

  • Aerobic exercise can boost memory in people with multiple sclerosis (MS) by up to 54 per cent, a new study has found.Aerobic exercise resulted in a 16.5 per cent increase in hippocampal volume, a 53.7 per cent increase in memory, and increased hippocampal resting-state functional connectivity.  Non-aerobic exercise resulted in minimal change in hippocampal volume and no changes in memory or functional connectivity.
Source: Neuropsychology & Neuroscience Research at Kessler Foundation. The India Express Copyright © 2013 The Indian Express ltd (04/11/13)

Sunday, February 1, 2015

Bigger Than Me

Some ancient part of my brain says that the grammar gods want me to say:  "Bigger than I (am big)." So, please forgive me if my title is grammatically incorrect!  LOL.

Today is a "my-body-is-wrong" day.  I have little energy and a fair amount of pain.  Just can't seem to drag myself through most of the normal steps.  Hate these days.  I did not exercise.  I am not going with the rest of my family to watch the Super Bowl (on TV).  I find that on days like this I tend to not only lay low, but also to hide.  Sometimes when people find out about the MS - they proclaim that they never would have known.  Well, that's because I hide on these days so as not to let you know.

Hmm.  Healthy or not so much?  If you haven't figured it out already, I have a lot of pride.  Too much, perhaps.  I don't want others to see me struggle.  I don't want the judgement or pity that might come with that.  It's easier and more comfortable to just stay home.

Often when I run in 5k races I am at my most exposed.  It's all out there if you want to see it.  The vision loss, the uncoordinated gait, the loss of muscle control, the tripping.  I'm not the least bid winded, but I can't get the legs to go.  I hang out in the back of the pack and quietly work my way through the last quarter of the race.  Some days are better than others, but there is never a race without a struggle.  I've run thousands of miles in the past few years, and still can't drag myself to a respectable 5k time.  So, why do I bother?

What I do find in the back of the pack is a community that is desperately in need of each other.  First timers, young and old, folks battling illnesses, coming back from cancer, battling weight/body image issues,   They are all there, in the back of the pack, working so very hard to accomplish this small but real goal.  And, there is a lot of encouragement back there!  I've encountered amazing spirits and healing words that make every step worth it.  Yes, I've been beaten by a 6 year old and an 84 year old!  BUT I've bonded with people everywhere in between and opened myself to their victories!

Victory is yours - even on a "my-body-is-wrong" day!