SLEEP!!

Short days and long winter nights, make me want to sleep!!

The more regimented my sleep routine, the higher quality of sleep I get.  I need a lot of sleep.  It's embarrassing, really.  But, the going to bed early is SO worth it when I wake up in the morning and feel rested and ready.

So, it's 9:40 pm.  Time for bed!  5:30 will be here all too soon.

Falls

I spent some time researching falls related to MS today.  The statistics are crazy!  What you see depends on what you read, but falls (causes and prevention) is a major topic of discussion within the MS community.

I am in the category of several falls per year.  It's likely that 65% of MSers have fallen at least once in the past year.  Many suffer multiple falls in that same time span.

For excellent information on falls and fall prevention, please read: Mnimizing-Your-Risk-of-Falls.pdf

My falls are mostly the tripping type.  My left foot catches something higher than level like the sidewalk, a stone or a tree root.  From there, it is an unpredictable fall to the ground.  My falls are usually forward, but backward falls are quite common.  When I practice a yoga squat, I am amused by the occurrence of a gradual, but almost certain, tip backward onto my butt.  I can't quite balance in that position!

I decided it was time to learn more about HOW to fall.  I work a lot on improving strength and balance, but the lack of feeling combined with visual impairment just inevitably leads to tumbles.  So, when I do fall, I would like to know how to improve the odds that I do not hit my head or break any bones.

I enlisted a friend who is a karate instructor and personal trainer.  Please, don't hesitate to seek out someone who knows more than you when you have something to learn!  She was a wonderful resource and got others, including her husband, involved in teaching me a few techniques.

First,  the karate studio was an excellent place to learn.  The floors are padded and have additional mats available for practice.  See if a local studio will work with you.  I'm not necessarily suggesting that you take karate classes, but you may be able to connect with an instructor that will review falling techniques in a one-on-one environment.

We started by learning to fall backward and progressed to falling forward.  We started in a seated position for falling backward and then moved to squatting.  Starting low-to-the-ground was important for me, because I lacked the confidence to otherwise let myself go.  The major things I learned were to:

• tightly tuck the chin into the chest (to minimize risk of head impact)
• throw the arms out to the sides to absorb the majority of the impact
• roll on a curved back

Falling forward was harder.  I started from a kneeling position.

• again, chin tucked into chest
• reach one arm across the chest and opposite shoulder
• roll forward onto the mid-back over the tucked shoulder
• continue the forward roll

Again, find a karate (or other martial arts) instructor to go over this with you.  It takes some guts to try, but it does get easier after a few practice sessions.  

Warning!  When doing the forward rolls, I had to endure a high level of vertigo.  Going through that motion left me quite dizzy for more than a few seconds.  The dizziness decreased after several sessions, but never totally went away.  

Interested in more information?  Comment below, and I'll happily respond with more detail.  

Additional suggestons? Would love to hear them!!  Comment!!!!

Falling Down and Getting Back Up

I have spent some time in the past few months working with a wonderful friend and karate/fitness instructor on falling down and getting back up.  Yes, literally, how to fall down and minimize injury. We have also worked on getting up from the floor.

Sound easy?

Well, it's pretty challenging for me.

Over the next several days, I will break down some of what I have learned about how to fall down (hopefully without hitting my head or breaking any bones) and getting back up when I'm down.

If you have knowledge of these or other techniques, jump right in and join the conversation.   I'm no professional at this, but I am determined to better learn to fall WELL and to get back up as EFFICIENTLY as possible.

Thanks, Arlene, Frank and Mai for the wonderful instruction on this one!  I promise to keep working hard to execute all you've taught me!

Check back over the next several days for details in technique and some safe ways to practice for the inevitable!

Snow Bonanza!

So, we did receive the snow that was forecast.  Woke up this morning to a beautiful blanket of fluffy, glorious white.

Snapped on the cross country skis and spent about 4.5 hours in the quiet, amazing forest.

While skiing, I thought a lot about what was good in the activity.  My skiing is a bit like a plod - like a little faster than 2 mph.  I stop often to look around and enjoy the amazing, winter quiet.  There is some exercise involved, but mostly it's the place that revives me.

Do we all have that place (or those places) that feed our souls?  Mine is most definitely outdoors, usually in a secluded or remote place.  It can be a beach as easily as a winter wonderland, but I need to be outdoors and mindfully in that place.

Today was an amazing, healing day!

Get out in the winter if you can.  Cross country skiing is accessible for many.  It's a non-technical sport if you stay on mostly level trails. Rental skis are usually cheap and the wilderness is free.  If you fall down, find a partner who is willing to help haul you back up.  If skis are too much for your balance or strength limits, snow shoes are even easier. They still carry you to those wonderful, hidden places.

Take the ride!

Snow Day

When it snows...  SKI!

What's Hard?

Tough question, right?

What's hard for you?

Your answer and mine might seem worlds apart.  I'm guessing, however, that there is more in common than differs.  I think if each of us would take the time to truly reflect on this question, then gather and share (be it in person, or online), what we would find is that the specific details may differ from person to person (and MS course to MS course) but that the deeper struggles are quite similar.

Let's be totally honest - this disease is a real kick in the pants.  It robs us of much we once took for granted.  It's quite a blow to absorb!  Add to that the transient nature of the disease with its good and not-so-good periods and the ever-changing challenges, and it is enough to push the confidence right over the brink.

For me, standing up to my fears is about meeting them as head on as possible.  I can't feel my left leg from just above the knee down through the toes.  My balance is terrible.  So, what do I do?  I try to run.  It's not always pretty and the results include falls, bumps, and bruises.  But the bigger picture results are strength and resilience and the emotional confidence to continue.  I slur my speech when I talk for a long period of time.  So, I coach and teach where I must speak in public for lots of hours.  I expose myself and push through as best I can.

What's hard?  I'll tell you what's hard for me - it's the talking about all of this.  I RARELY ever tell anyone that I have this disease, and I almost never tell anyone about the struggles.  It's a giant locked box.  For better or for worse, that's what's hard for me!  Maybe this blog is an attempt to blow out of that box and share some of what I've fought with and what I've learned.  Maybe the conversation would be cathartic for us all.

There's no pity party here - no feeling sorry for myself, but what there can be is genuine empathy and sympathy that helps us deal with loss and move on through it as a community.  Whether you have MS or love someone who struggles, I invite you to share your losses and triumphs so we can find from each other help in building the strength to answer and battle "What's Hard?"

And then move forward.

But, I Can't Exercise

But, I Can't Exercise... I Can't Walk...  I'm not coordinated enough...  I'm way to tired afterward... I hurt...  I'm too weak...  I lose feeling and coordination when I'm hot...  I don't like it...  I'm afraid...

Studies have shown that people with MS exercise less than the general population - and, folks, the general population is not exercising enough.  So, we are mopping up the basement in this category.

The CAN'Ts are real, but we have got to take steps to turn them around.  This is not a one-step process for any of us.  Small modifications can lead to additional changes in activity and so on.

There is clear evidence that exercise affects both the body and the mind.  Mood improvement/stabilization is touted as a major reason why runners self report that they do what they do and love it along the way.  The more we move, the more we benefit, the more we need to move. It's a wonderful, upward cycle.

Check out:  http://www.overcomingmultiplesclerosis.org/Recovery-Program/Exercise/ for another take on this same subject.

Don't know where to start?  Try the Exercise tab or the Training Plans tab for some get-up ideas.

Get your MOVE on!

(re)Discovering Balance: Two Tools

Today you will find an update on the Balance page of the blog.

I've introduced (or encouraged) the use of two tools for (re)Discovering Balance.  One is a Visual Focal Point, the Drishti; the other is a Sensory Focal Point, a light touch.

Give it a read!  Comment for more info or to join the conversation!

Overly Simplistic?

Let's ask an obvious question here:  Are any of these small ideas likely to lead to measurable changes?

I do not have the luxury of conducting rigorous, double-blind studies to test my theories.  I cannot lay any claim to any results.

What I am suggesting is that it is worth making small changes in activity levels to try to impact the course of this disease.

I feel like medical intervention can be a wonderful, life-saving modality.  However, I see health care intervention as a spectrum, a ladder, if you will.  My theory is to test and exhaust the least risky and least invasive approaches first, and move up the ladder to more expensive and risky interventions as the lower level approaches do not yield satisfactory results.

Are you willing to try some minimal exercises and lifestyle changes for a short time and to test and measure if there are results for you?  If not, please move on to the bigger things right away.  BUT if you are willing to try some other approaches, I have a few suggestions to lead you to reasonable, non-technical, non-medical trials.

Worth a try?  It sure is for me.  Your path is fully up to you!

Foot Drop

New Page Added:  Foot Drop

I've added a super simple exercise to address foot drop.  Check out the page for more details.

Thought for today:

Keep up the good fight!  It's worth it!

Walking Cadence (and that Journal you now have!)

Ever notice you tend to habitually do things at the same rate time after time?  It likely takes a similar amount of time each day to tie a shoe or brush your teeth.  Habits make activities more efficient.

Your walking cadence is likely affected by habit.  You have found a place where you are comfortable and that is your predominant turnover rate.  This is not to say that you don't sometimes walk faster or slower, but this rate is your typical cadence.

Do you know what it is?  If you use a smart phone you can download a simple metronome app.  Use this tool to explore your typical cadence and record it.  Occasionally, check your cadence and if you are really motivated chart it.  Watch for changes and try to understand why those changes have occurred.

As an exercise, try setting the metronome to a small percentage faster than you are used to.  Walk for two minutes (on a level, safe surface) at this pace.  Tune in and see what changes you notice in your gait.  Can you relax and go with the increased rate?  Do you have more trouble turning over one foot than the other?  Are you more stiff?  Can you do it at all???

Over time, play with this exercise.  Try slowing the cadence down and being more deliberate with each foot strike.  Balance issues may enter the picture at some slower rate.  You may notice foot/toe drop or a tendency to "slap" your foot instead of rolling heel to toe.  Can you overcome the foot drop or foot slap if you intentionally slow things down?

Try faster exercises.  Try variable rates.  Advanced:  try marching in place with progressively higher knees.  Walk sideways or backward.

Are you willing to practice all of this - maybe twice per week for 5 or 10 minutes?

As with most things MS,  just because you can't do something today does not automatically mean you can not do it in the future.  Try and try again.  Even if you are not fully mobile, this exercise may still be within reach.  Hold on, use an assistive device, hold someone's arm, slow down and be patient with yourself!

Get out that journal and record your experiences!!  Be mindful of your cadence and be willing to play with your limits.

See the training plan for this post (Cadence on the Training Plans page).

I wish you all the best in testing this one!  Comment below.  We need more voices!!  :)

Music and Movement (and a Journal)

"Backwoods folks is old and brittle
 But they sway like a tree to the sound of a fiddle"
Michelle Shocked  Lyrics from "Contest Coming"

Ever seen those crazy YouTube videos of someone dancing enthusiastically at a wedding reception.  It all starts out really good, but usually ends in a major crash.  I'm always amazed at how well some of the people are able to dance - looks alone tell me they should be much less agile.

What is the role of muscle memory in MS?  Those long-beaten neural pathways become scarred and impede the motions that were once so fluid.  BUT do the muscles "remember" how to do what they once did?  Can we burn new neural pathways to access those memories?

Here's a challenge for today.  When you have some down time, go into a room all by yourself. Listen to some music that really moves you or evokes a strong memory.  Turn the lights down a bit. Now, just stand or sit and sway to the music.  If the ability is there, walk to the music - or just take baby steps in place - or even shift your weight.  Attempt to progress in any way that feels accessible, side to side steps, marching, dancing, lifting one leg...  Let your mind and body lead you.

Then, add some arms.  Sway like that tree.  Reach up, out to the side, do curls, swim...  Again, whatever moves you.  Bend, twist, reach (from a standing, sitting, or even prone position).  Explore the movement...

Focus on the music and let the movement come from a deeper, less intentional place.  When the song is over, stop.  Smile - no matter what the outcome of the experiment.

Now, take a minute and write down your observations.  "I found I could..."  "I was surprised I could..."  "I was limited by..."  "I would like to..."  "This could progress to..."  I am upset that..."
and "Next time, I will..."

Then, after a day or two repeat.  In fact, repeat this exercise.  Do this 4 or 5 times in total.  Always include the journal entry afterward.

What did you notice?  Patterns?  Increases:  Decreases? Joy? Frustration?  Freedom?   Journal it!

After some time passes (I usually aim for the next season) - repeat the entire exercise.  Move and journal a few times each season of the year and see where this small, intentional journey leads you.

I am NO dancer, but this exercise has led me to explore limits in my motion and areas where I would like to improve.  It has led to tears of sadness as I deal with what I have lost, and tears of joy as I celebrate what I can still do.  It is a physical exercise with a strong emotional component.

I hope you "sway like a tree!"

Log your thoughts here.  I'd love to hear your reactions!!

Is This Blog Worth Checking Out?


If you are looking for general information about the disease, in all of its many forms, there are many sites with fantastic information.  The National MS Society is fantastic.  A quick Google search will give you the basics.  www.nationalmssociety.org

If you are looking for advice on living with MS,  check out:  http://debbiepetrina.authorsxpress.com/

If you are looking for stories and reflections about people's personal experiences, try:  http://www.msbloggers.com/p/ms-blogging-community.html

With all these great resources and amazing people who have put in countless hours researching, organizing, and writing, why, oh why, should you stick around here?

LOL!  I'm actually asking myself that question as I type.

I'm hoping I can offer you this:  I have somehow lived through 20 years of this disease and come out in a pretty desirable place.  My MS is best categorized as relapsing/remitting, but even in remission the damage that has been done imposes limitations.

Through this blog I hope to share some of the hope and positivity that have come with victories, large and small.  I would like to encourage you to be active in understanding your disease and your body. Finding real limits - without assumptions - is crucial.  Any time you assume you cannot do something, you are doomed to not be able to move past that limitation.  I fully realize there are boundaries, immutable lines, but I want to know where they are without any errant assumptions caused by fear or hopelessness.

If you would like to join the conversation, you are SO WELCOME here!  If my ideas are too much - challenge me.  If my ideas challenge you, we have found a reason for you to visit this site!!

Day of Rest

Today, for me, is a day of rest.  These re-grouping days are a great change of pace from a life filled with kids activities, work, and basic tasks.

Rest, of mind and body, gives us a chance to refocus.  I find I need more down time than almost anyone I know.  People tend to see me as someone who goes non-stop, but what they don't realize is how that comes from rest:  sleep at night, naps during the day, and days of rest.

Take some time for rest and rejuvenation as you are able.  Enjoy!

Unpredictability of MS

Today, I am thinking a lot about how unpredictable this crazy disease is.  The outcomes vary wildly among individuals and degree of disability seems like a crap shoot.  This leaves everyone affected with MS wondering the BIG "What if's..." and can truly take a toll on psychological well being.  I'm convinced that the stress of worrying about what will happen wears us down and makes matters worse.

How do we live each day fully without the worry of what tomorrow will bring?  Wow, wouldn't it be great if I had the answer to that one!  :)

For me, taking control of what I can control is a major part of building security and emotional well being.  If I am able to exercise today, I do!  And, I believe it will help me have a better tomorrow.  If I have a food choice to make that I think can tip the scales in my favor, I try to make the right choice. If I have the chance to reach out and help someone else, I do.

All of this is no insurance policy against the disease!  I do not believe the choices I have made have determined my course of MS.  I do not believe the choices others have made have led them to more or less disability.

What I do believe is that I should do everything I can at every juncture I recognize to tip the scales in my favor.  What harm can there be in this?  If I am wrong, I will be healthier and happier in my mistake.  If I am right, I might just make my life a little less challenging.

I would love to hear your story about how you deal with the emotional challenges of MS.  Successes? Share them!  Questions?  Ask them.

On the journey...

Exercise?

YES!

Yes, to exercise - as much and as often as you are able.

I am not a going to sell any products, plans, or endorse any one type of exercise.  The goal is to find what works for you today and DO IT.  Something else might work better next week, but, for today, find a modality that works.

Yes, I run, I lift, I stretch, I do circuits, I walk, I practice yoga, I kayak, I play soccer, I swim, I hike, I ski...

But I don't endorse any one of these - I search for the ones that work to help me meet my goals of staying strong, flexible, and active (without hurting myself).  Again, it's one day at a time.

I have found many, many modifications that allow me to get a lot out of every session.  No balance, no problem!  Low vision, we can address that!  Tight muscles, we'll loosen them! Trouble sleeping, exercise can help!  Don't be afraid to modify!!  And, if something truly is not working, scrap it and try something else.  Just because it doesn't work now, doesn't mean it won't work in the future.  Revisit the exercise at another time.

Check out the Exercise page for "First Thing's First" (new today).

Check out the Training Plans page for a Pre-Conditioning Walking plan (new today).

Feel free to comment on what works for you or ask any questions you many have about how to go about exercise.  I will try to post on a variety of approaches.  Your requests are encouraged!

TOO Cold !!??!!

Some days you just have to face reality and throw in the towel.  Temperatures outside were below zero early this morning and have now climbed to 2 F.

So, the workout for today was indoors.  I made a date with the treadmill and kept it.  All good.

Today, I will work on some thoughts about the treadmill.  If you are interested, go to the treadmill tab.

Do you have access to a treadmill?  Would you use it (if you were able)?  Can I help you get started?  get motivated?  be efficient? be safe? advance?

Comment here or check out the treadmill page for more details.

Also, I added some yoga video links to the Strength and Coordination page.  Let me know if this is useful!

Baby, It's Cold Outside

As the temperatures are set to dip into single digits, it seems timely to address how the cold affects MS.  I think it is widely understood that heat triggers a number of MS symptoms.  What those of us who have lived through some cold winters know, cold is NO friend either.

Typically, I function best when the ambient temperature ranges from 60-72 degrees F.  Outside that (tiny) range, there is trouble - with vision, gait, balance.  It goes without saying that those "perfect" days are few and far between.  So, how is a person with MS supposed to get out and exercise when facing these limitations?

Some cold-weather thoughts:

• Outside activity is not always possible - BUT it is almost always possible.  I find that if I get outside to exercise I am amazed at how positive an experience it becomes.  
• Layers are your friend.  Wear more layers than even those who are with you,  The trick is to then be flexible enough with your activity to stop and take off layers as your body temperature increases.  Crazy as it sounds, I am known for strewing layers as I go - hanging them on stop signs, tree limbs.  I have lost a few pieces along the way, but usually as I circle back they are waiting for me.  Layer up!
• That said, expose as much skin as is prudent.  Today it's too cold, but in cold (but not frigid) weather, I try to expose a bit of skin to the sun for short periods of time.  The Vitamin D is awesome and may have a protective effect with MS progression.
• Don't slip!  If your balance or gait is compromised, venturing out in icy conditions is not advisable.  Snow itself is not generally slippery and makes a fantastic running or walking surface!  Trudge through that snow!
• Invest in a good pair of boots with real traction.  I also have Gortex running shoes with substantial bottoms that are great for walking or running in smaller amounts of snow.
• Warm up before you go outside.  To whatever extent you are mobile, walk on the treadmill, hike the stairs, stand up/sit down for several minutes before you head out.  
• Carry your phone!
• Upon arrival back inside, get the cold or wet clothes off your body.  Bundle up in your cozies and drink water followed by something that warms you up and makes you feel toasty. 

Let the journey begin!

It's a cold, blustery day ...  seems like a good day to start something new!

I've never blogged before, so I hope you will bear with me as I give this a whirl.  My goal is to share some of the information I have gathered over the past 20 years in hopes of starting some meaningful discussions about Living Well With MS.  Not every day is a good day, but every day is an opportunity to take steps toward tomorrow being a better day.

My goal is to add information to the tabs listed here.  It won't all happen at once, but if you visit frequently, I hope you will find some food for thought.

I welcome you comments / ideas / questions.

Coach Ang