Give em something to Talk About - Advocacy

I was watching a college football game a few weekends ago and I was AMAZED at what I saw...I have NEVER seen this before... It was an COMMERCIAL  for MS by the National Multiple Sclerosis Society


SecureACure4MS.org, National Multiple Sclerosis Society, Nancy Davis Foundation


I wear an Orange Cure MS bracelet proudly

Some paint their nails Orange

A few weeks ago a slew of MS patients painted the Tampa Bay Rays stadium Orange by wearing Orange MS tshits

Wearing Orange Ribbons on World MS Day

Participating in Walk MS, Bike MS, Challenge MS or other events

talking to family, friends, or anyone about MS

What does all of this mean?

Thats right - these are Groups that Advocate or are ways YOU can or have shown advocay towards MS

ad·vo·ca·cy (from Bing)

[ ádvəkəssee ]

1. giving aid to cause: active verbal support for a cause or position 

"Advocacy Is Empowering
Let’s face it. All too often, we sit around and complain about how the system has failed, how the government is making poor choices, how research dollars are going into the wrong pockets, or how accessibility is lacking in our community. Becoming an advocate means having the courage to take action and do something about the many injustices we see in our world. Taking action, whether we do it alone, with others in our community, or with our support group, is empowering. Those of us who have the power to fight must do so for those who are no longer able to fight for themselves. Maybe we won’t see the fruits of our labors – but the next generation will." msfocus.org

 

 

Become an Activist

 Activist - 1 . one who is aggressively active on behalf of a cause

 

• take charge of this disease
• educate others
• lobby your politicians
• educate employers
• create awareness

WHY DO I NEED TO BECOME AN ACTIVIST AND ADVOCATE?

 

Multiple Sclerosis is unfortunately not a disease that everyone knows about.  We need to make sure that EVERYONE knows what this disease is and the fact we do not have a CURE yet.  We need you to advocate on behalf of this disease, your fellow MS'ers YOURSELF - when people are donating their dollars each year, we want MS top of mind. 

 

We can be the voice for those who are not able to.

 

without advocay our government won't recognize our needs (SSI, SSDI, Medicaid, Symptom equipment, Plaquards for our car, etc) 

 

 

 COMMUNICATION IS KEY!!!!

The Power of One - One call, one letter, one person you talk to  - it only takes ONE

 

Activists help create CHANGE

 

YOU CAN BE AN ACTIVIST

NMSS has a great toolkit for those with interest

Play that funky music

MUSIC, Makes the people, come together...

 

The hills are alive, with the sound of Music...

 

 

There's music in the sighing of a reed;
There's music in the gushing of a rill;
There's music in all things, if men had ears:
Their earth is but an echo of the spheres.
~Lord Byron

MS  affects our Central Nervous System - so why are we talking about Music, Music Therapy?

What is music therapy?
.
Music Therapy  uses music and the components of music such as melody, beat to help with many MS symptoms.

IT IS NOT A CURE AND NOT A REPLACEMENT FOR YOUR CURRENT DOCTOR SUPPORTED TREATMENT -this could be an added benefit,


Music Therapy has been used for:

• stress relief
• relaxation
• cognitive issues/memory
• confidence
• spasticity
• hypophonia (soft voice)
• dysarthria (a motor speech problem
• depression

You are having a bad day.  Everything and anything is going wrong.  How much more can I take?  My mind is spinning out of control...my head is pounding.... if someone says ONE MORE thing I think I will SCCCCRRREEEAAAMMMM - listening to music an soaking yourself in the melody, the beat of the songs, allows your mind to release all of the tention and allows you to relax.  You stress could reduce

If I say Red, carrot, pony, radio to you.  10 minutes later I ask you to repeat those words.  I CANNOT REMEMBER THEM - is this you?  Did you ever notice that you cant remeber what you had for breakfast but when a song comes on the radio you know exactly where you were when it played - what you were wearing - who you were with - what you were doing - and this was 10/20 years ago? 

Music plays such a BIG role in our life

May people who learn the English language, learn it through music.

How many of you can hear a song on the radio from the 1980's and remember EVERY word of that song.  Its not just words.  Its sound put to a beat.  that combination helps our brains recollect.  It forms a pattern. 

Music Therapy can be used for those with Soft Voice or motor skill issues.  By singing they learn how to shape their mouth to annunciate each word and how to deliver it to a crowd.

We beat to our drum -I know we have all heard this saying, but how very true that statement is.

Our first introduction to "music" is our beating heart.  Ba dum,,,ba dum...ba dum.... it beats at a steady pace.  when we are run or get excited, it starts racing...it gets faster.  Just as in a song...when there is excitement in the song the beat gets faster. 

Music gets you moving.  Music is being used by MS patients with Walking and Balance issues as well as spasticity.  The beats that MS patients here are assisting patients with steady walking.  MOVING is helping some patients with Spasticity issues





                                                    WE HAVE TO MOVE IT..MOVE IT

 

 

 

Here is a link to check out if you want to know more about Music Therapy

 

http://www.musictherapy.org/

 

Sharon and I had the honor of having Michael Ricucci - CEO/Founder of Tera Rising Records on our Radio Show.  In case you missed it here is the show

 

 

 

 

Check our what Michael and his group at doing to showcase Music Therapy at

 

 

http://www.terra-rising.com/

 

 

 

 

 

 

 

 

 

 

New Oral Med -Aubagio (teriflunomide)

Exciting news launched this week for those in the MS community,,,

Its not the cure that we all want...but its another option that we have in the fight against Multiple Sclerosis

Aubagio (teriflunomide) was Approved For Multiple Sclerosis Treatment by the US FDA.

So what is Aubagio anyways?

Aubagio (teriflunomide), is a daily oral medication for those with relapsing forms of MS

This is the 2nd Oral Medication that has become available for Relapsing MS.  (Gilenya being the first).

FDA's Center for Drug Evaluation and Research, said

"In a clinical trial, the relapse rate for patients using Aubagio was about 30 percent lower than the rate for those taking a placebo. Multiple sclerosis can impair movement, sensation, and thinking, so it is important to have a variety of treatment options available to patients." FDA

From Genzyme website  www.aubagio.com

AUBAGIO has shown significant efficacy across key measures of MS disease activity, including reducing relapses, slowing the progression of physical disability, and reducing the number of brain lesions as detected by MRI.


Potential Risks/Side Effects

• Aubagio could cause Birth Defects (teratogenicity)

• You should not get pregnant on this medication, You should be on effective birth control while on this medication.  This can stay in your system for up to 2 years after stopping drug (consult your doctor)

• If you are a male - your partner should take effective birth control

• AUBAGIO may decrease your white blood cell count, which may mean you could have more frequent infections 

• AUBAGIO may cause serious liver problems, which can be life-threatening (hapatotoxicity)

• Renal Failure

The most common side effects:

• abnormal liver test results
• hair thinning
• diarrhea
• flu
• nausea
• a burning or prickling feeling in your skin.

SO IS AUBAGIO RIGHT FOR ME?

RESEARCH!!!!! 

Before you start ANY medication you should know the pro's and con's.  You MUST know all the potential risks.  I myself is on Gilenya, the other Oral Medication and it too comes with a library of potential side effects.

Should I switch?  Only you can answer that.  But I like the saying "If it aint broken, dont try to fix it"

If your current DMD is working, why change?  Yes this could mean no more injections.  But as with EVERY medication out there - they don't all work the same with with everyone.  If what you are on is working, you probably should stick with it.  TALK to your MS Specialist if you are considering this drug.