I was feeling a litte creative today. While viewing the great MSAA website and looking at thier list of MS symptoms... this prayer/poem/wish came to me and I wanted to share.
What amazing people you all are. Every day we face one or more of the many symptoms that come with MS. Yet WE NEVER GIVE IN, WE ADAPT to our situations. I truly Pray everyday for a cure for all of my SecureACure4MS family and everyone affected by MS in the world.
I dont know about you, but 2012 went like a flash. I hope you all enjoyed the holidays and celebrated with your family and friends. I have a lot to be thankful for that MS has brought me.... Heather are you nuts.... you are thankful for your MS...why would you be thankful?
I am not thankful for the disease itself, but it has brought me blessings i would not have had if it werent for this disease...
I am thankful for my amazing MS sistas Elyse and Jen... they make this journey so much easier for us all. They are the most amazing people.
I am thankful for ALL the amazing people in the MS community that I have had the honor to meet either in person, or in our support groups.
I am thankful for all of the SecureACure4MS followers, blog readers, blogtalk radio listeners, twitter followers and those in our Facebook group.
I am thankful for all the amazing friends and people that joined my life. Everyone has made a difference for me.
Most of all, I am thankful for my best friend who has become my sister. 2 and half years ago we were just 2 people on facebook that had MS in common. Today we are the BEST of friends and we look at each other as sisters. MS does have its blessings..Sharon is proof of that. Together we had an amazing year with our not-for-profit SecureACure4MS (which would not have been formed if we had not been put in each other's lives)
2012
In 2012 the MS Community had a new Oral therapy hit the market.
We have a highly anticipated MS Therapy that should have FDA approval at the end of March. This is an oral medication called BG12 made by Biogen (makers of Tysabri) - Be sure you are following us on Facebook and Twitter as we will be providing updates as we receive them.
The FDA has approved Rebif Rebidose and it should be available for purchase in 2013
-Rebif RebiDose was designed with the objective to assist with ease of use and to offer patients an alternative delivery option. In the US, it will be available in a monthly pack in two different doses, 22 micrograms and 44 micrograms, and in a titration pack
Marijuana is still heavy in the news. I have a feeling we will see more legalization of medical marijuana in 2013
Revalesio's RNS60 Protects Myelin and Halts Multiple Sclerosis in Mice
Wikipedia lists the following as Phase 3 therapies in clinical trial... this is exciting to see so much research in its last phases
It excites me to see all of the new therapies on the horizon. I look forward to all the discoveries that are found in 2013.
Just remember...Never give in to your MS... ADAPT!!! Most things can still be done, dont limit yourself. ADAPT... most things can still be done, we just do them a little differently. ADAPT
Wishing you all a Happy and Healthy 2013. Thank you all for being part of the SecureACure4MS family.
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
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 ]
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
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
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
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.
