Thursday

How to Sleep 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....





Wednesday

8 Easy Yoga Moves for MS - Do this in the morning and see what happens

Many of you know how important yoga has been for my success with MS.  It is something that was practiced before getting sick and continued through my illness.  My practice may not have been the most dedicated but it has always been there in some form or another.  The calmness it brings to my life, and the fitness and strength it provides is amazing.  Basically it feels like a massage from the inside out.

Here is a very EASY faux-ga Yoga routine for MS patients.  This simple routine is all done sitting down and lying down.  No need to stand.  It can even be done in a bathtub, sort of.  There are many resources for true Yoga but these are adjusted exercises that work for me.  
1.  Grateful Breathing:  Sit, cross legged, hands at chest in prayer position, welcome this time for your practice. Let go and breath deep for the next seven minutes.  Surround yourself with an invisible hug of positive energy.  Bring to mind gratitude toward something in your life.  Acknowledge and enjoy this feeling.  Either stay here or bring to mind another grateful moment.  Savor this moment and next seven minutes.  Bring to mind your breathing.  In through the nose, exhale through the mouth. Think positive in, negative out.  Breathe deep into your stomach on the inhale, feeling it expand like a balloon.  On the exhale squeeze out all the air by pressing your belly button back toward your spine.  Think of a tube of toothpaste with all the air being exhaled.  Breathe in deep again and exhale.  Make sure you are forward on your sits bone and use a blanket if needed.  The circle of energy through your body will be most open to change and healing in this position.  Continue this for 6 deep breaths.

2. Chest Opener:  On a big inhale, open hands and stretch elbows and shoulders back, squeezing shoulder blades together behind you. Exhale everything out and bring hands back to prayer position.  Repeat this for six deep breaths.  Do not push yourself too hard.  Be compassionate and listen to the body.  Go where it's comfortable.

3.  Spine Straightener:  As your are sitting, think about your alignment. Is our chin sticking out?  Or is an invisible thread pulling the crown of your head up toward the heavens and your sacrum is stretching toward the floor?  Be aware and adjust accordingly, using this visual to continually stretch yourself open.

4.  Neck and Shoulders:  Gently pull your right ear to your right shoulder, stretching the outer left side of your neck.  If you like, place your right hand over your head, finger just above the ear and carefully help you reach the stretch desired. Gently rotate your chin around in circles and find what feel good for you.  Make sure to stretch on both sides.   Now, shrug your shoulders up to the sky, rotate them back, down and forward, making large circles,  Complete a few in each direction.  Feel the openness in these areas and acknowledge the stagnant energy leaving your body and making room for freshness and rejuvenation.

5.  Reclining Cat:  While sitting on your bum with knees gently bent and feet on floor in front of you, place your hands gently on the outside of your knees.  On in inhale, stretch up as tall as you can while sitting with body close to knees., head up, back arched, eyes toward the heavens.  Big inhale.  Then exhale it all out with an open mouth and let your back roll backward toward the floor.  Big inhale and stretch up straight and tall by your knees.  Exhale and roll back, stretching all the little and large muscles.  While in the exhale position, gently rock side to side, massaging your sacrum.  Repeat this four more times for six deep breaths in all.

6.  Sage Twist:  While sitting on the floor, legs stretched out, we are going to take our right leg, knee bent, and scoot the heel as close to you as possible.  Sitting up tall, feel the stretch this provides.  Then if you want more, place that right foot on the outside of your left thigh.  Now, if it's available, take the left leg and bend it so that the left heel is near your right buttocks. This should be called the pretzel. Where ever your foot and legs are we will begin the twist. On in inhale stretch you right hand up tall and on the exhale, gently twist to the right and place right hand on floor behind you.  On the inhale stretch the body tall, on the exhale twist to the right a little bit more.   Take 4-6 deep breaths and then unfold.  Shake everything out and do the other side.


7.  Dying Insect:  roll on to your back and take all arms/legs/tails and shake them out above you.  Be a wiggly worm and take a couple of good breaths, exhaling any last negative energy in your body.

8.  Shavasana:  Time to relax. Lie down on your back on your mat.  Legs about 18" apart and hands about 8" away from sides of body.  Let everything sink to ground and relax.  Feel the body restoring.  Allow your body to fee this as safe place.  Stay in this place a couple of minutes - as long as you want.  Enjoy and appreciate.

9.  Thankful Breath:  Use your arms to raise from the ground and seat yourself with hands at prayer position. Breath deeply, acknowledging the time and energy put forth in this simple but effective and refreshing series.  Take a couple of deep, thankful breaths.


10.  I've got this!  You can end with a prayer or a namaste but I like to say to myself, "I've got this!".

Only do what feels good and don't push your body too hard.  No pushing through pain. We are gentle, compassionate toward our bodies.

This mini routine is a great way to get started and keep motivated.  Not too difficult but easy and gently on the MS.

#takethatMS 

Tuesday

Erasing MS the Nancy Davis Way!

Belle of the Ball

                 at least for one night.
MS Advocates: @Longhaulpaul & @thegirlwithMS
And boy was it worth it!

In just two weeks, Gala ticket in hand, it became game on for this girl with MS.  Complete with orange carpet, the 24th Annual Race to Erase Gala is an event not to be missed.  From Hollywood movie stars to MS Celebrities, the Beverly Hilton was packed with folks wanting to make a difference.  And make a difference they did!

MS Advocates: Caroline Craven & David Osmond
A variety of celebrities attended the Gala, including Marg Helgenberger, emcee Kathy Griffin, Medal of Honor awardee Jamie Lynn Sigler, David Osmond (living with MS), Kris Jenner, Paris Hilton and so many more wonderful supporters of the race.

The actual money raised for Nancy Davis' Center without Walls MS Research is not yet known, but one car went for $290,000 at the silent auction.  Wowza!

My escorts were amazing. As the MS took hold of my legs and made me weeble and wobble, out of the blue came an arm and a voice, "Here, walk with me."  Whew!  I thought for sure I'd topple over at any moment.  And who was this voice?  None other than MS advocate Paul Pelland, aka @longhaulpaul.  Well this was convenient.  Two MS advocates walking the orange carpet.  Woot woot!  Yes, we are in La La Land.

And then walks down David Osmond, who I got to meet on the phone during an interview a few months ago.  But we had not met in person. Finally!  And well worth the wait.  David who lives with MS does so much to help build awareness.




When Chicago is playing for a private party at the Beverly Hilton a good time can be expected.  Add the bonus of Quincy Jones, David Foster and Siedah Garrett.  It was the tops!



Not only does this Race to Erase MS raise awareness for MS but it raises a significant amount of funds for MS research. On Saturday, the day after the Gala, there is an MS Forum which has become one of my favorite events. Ever.

The MS community is family.  The hope and inspiration found at the MS Forum is contagious and is greatly appreciated by this MS patient.

A lot of great information was shared by the MS Forum.

The panel included medical specialists:  Peter Calabresi, M.D., Adam Kaplin, M.D., Ph.D, David Hafler, M.D., Daniel Pelletier, M.D., Nancy L. Sicotte, M.D., Emmanuelle L. Waubant, M.D., Ph.D., Howard Weiner, M.D., Vijayshree Yadav, M.D.

Those living with MS on the panel included Nancy Davis, David Osmond and Arnetta Hollis.

Claudia Hurry Hill, living with MS for over 32 years, was the moderator.  More on the forum to come.
____

The Gala was quite amazing. And prepping for it was even more entertaining. After arriving at the Beverly Hilton we ventured over to Neiman Marcus for their amazing popover, consommé and glass of rose before moving on to the Chanel counter to replace some make up. Natasha from Chanel worked her magic and provided my face with a much needed professional touch as well as replenished some product for later use.

In prepping for the Gala, much fun came from the dress shopping and the hunt for accessories.  Just the right look was of importance.  Orange is the color of MS but it's not necessarily the best color for me.  Also, when one is searching the internet for gowns and evening wear, there are a lot of choices.  Especially when one starts looking at designer and/or vintage gowns. But where was that one dress that would work the best?

Several friends and family in the industry suggested looking at Rent the Runway.  After a simple search, several orange gowns were found. And while my body is usually quite easy to fit, the thought of not being able to try it on was a concern.  So a dress that fit easy and was soft and fluid would be perfect.  And a dress in a softer shade of orange would be even better.  It did not take long for RTR to produce the perfect dress. Easy to wear, and comfortable!  Thank you RTR and Solani dresses for this optimum look.

Once the dress was chosen, time for the accessories.  OK, if the budget matched the choices, I could have spent $1000's of dollars getting ready for this gala.  Tinsel town was on my mind. But instead went for a slight bohemian feel, allowing for fun, costume jewelry.

A friend and I hit the stores. She's also my stylist and I highly recommend her.  Contact me and I'll connect you two.  We hit almost every TJ Maxx, Ross, Zara and H&M within a ten mile radius and found everything we needed and wanted.  We even found back-up options and a back up dress incase they are needed.  Whew.  This is coming together quickly and easily.

The Gala was extraordinaire!  Of course staying at the Beverly Hilton is a treat in itself.  Love this place.

After a lovely day, and an even lovelier evening of food, drink and good cheer, this Girl with MS is inspired and energized.  

I can not thank Nancy Davis enough for all she does to help everyone with MS.  The research provided by her fundraising is invaluable to our wellbeing.  

#takethatMS