Good Job...Complimentary Medicine

As MS patients we have all gone into Neuro's office to review our lab tests and been told some of our levels are low.  For the majority of us it was probably Vitamin D...for others it could also be B12, Magnesium, or many others.

I know for myself when I was first diagnosed with MS in 2010 my Vitamin D level was a 4.  normal is 30-70.  Needless to say...i was SEVERELY low.  With a doctor monitored regiment of higher doses of vitamin D, my level today is around 36 and although its normal, we are working to get it higher.  my doc wants me closer to 60.

What are common Vitamin Supplements that we take as MS patients?

• Vitamin D3 - Vitamin D is thought to help reduce relapses and help slow progression of the disease.  If you have not had your Vitamin D level tested, ask your doctor.  Its a simple blood test that can be done
• Calcium
• Magnesium  - those with low magnesium can have troubles with spasticity.
• Omega 3's - these are great for the heart and immune system
• Vitamin A   helps rebuild a leaky gut.
• B12, B6, B1, B2, B3, B5, folic acid -
• The release of energy from food.
• The normal functioning of the nerves and brain.
•  Maintaining healthy skin, repair and maintenance of tissue.
• Needed for a healthy myelin sheath, nervous system and bone marrow. Lack of B12 can impair the processes of the immune system. People with MS may be deficient in B12 due to malabsorption in the gut or to a disorder in binding and/or transport of the vitamin.
• Vitamin C -  Needed for a healthy immune system, repair of tissue and production of collagen.
• Vitamin E -  Enhances immune response, slows down the degenerative process, regulates platelet aggregation.

• Mineral and Trace Elements
   
  • Zinc .
  • Copper
  • Selenium .
  • Manganese
   
• Antioxidants They are vitamins, minerals, and other nutrients that protect and repair cells from damage caused by free radicals
• Grape Seed Extract/Pycnogenol (super antioxidants), - Helps deal with free radicals and strengthen the blood brain barrier.
• Alpha-Lipoic Acid  - A very potent antioxidant which can travel across cell membranes to find free radicals both inside and outside cells.- this is a very costly antioxidant 
• Gingko Biloba - Helps maintain healthy peripheral circulation, including blood to the brain. Helps memory and cognitive functions.  Also has positive effects on platelet function. 

• L-Glutamine - helps protect against a leaky gut, which is common in MS. Glutamine is the most important nutrient and fuel for the mucosal lining of the small intestine and the colon. It is also essential to proper function of the immune system

HERBS

1. Ginger
2. chamomile
3. myrrh (its not just for Christmas)
4. cannabis (hope one days its legal in all states so everyone can benefit)
5. St John's Wart - depression -don't take if you will be outdoors and it could cause issues for those who have heat tolerance issues

 ***ALWAYS - TALK TO YOUR DOCTOR FIRST BEFORE STARTING A VITAMIN or HERBAL REGIMENT TO ENSURE THEY ARE NOT HARMFUL FOR YOU OR THE MEDICATION REGIMENT YOU ARE ON.

Mindy Body and Soul

• Meditation (with aromatherapy) 
• Yoga
• Massage
• Acupuncture
• Tai Chi

Exercise and Diet - regiments, no matter what they are should always combine a healthy diet and plenty of exercise.  For those with mobility issues, there are adaptive exercises or some use aquatic therapy to help.

There are many other Vitamins and minerals out there that I didnt list.

information in this blog provided by msrc.co.uk,  nih.gov, and mayoclinic.com

Say YES to help this Holiday Season

We have officially entered the Holiday Season.

I hope the only thing people are facing is the Tryptophan coma from all of their leftover Turkey.  Thanksgiving is a time to give Thanks for all the blessings in our life - not material things but gratitude's that have blessed our lives. This year has had its highs and lows for many of us.  But one thing stays forever, our SecureACure4MS family.  Family is forever.  Sharon and I are blessed and truly thankful to have you all as part of our family.

Black Friday - for many this is a Tradition.  Retail establishments for one day (it used to be one day) put merchandise at a deep discount.  Many offer great door buster sales to the first  shoppers that come through their doors.  For many stores the offers are sooo great that people camp out in front of the store to ensure they are first in line.  Here in Florida we had some camping out a full week in advance.  Have we gone too far?  I am not going to dis those that choose to shop as I hear from many that with all the discounts they were able to complete most if not all of their holiday shopping.  Prior to my MS diagnosis I could keep up.  But now I have issues starting with the parking lot, and the crowds of people pushing and shoving.  I like to take my time and shop, not have to worry that someone is going to snatch up an item under my nose.  WHAT ARE YOUR THOUGHTS? 

BLACK FRIDAY OR NO BLACK FRIDAY?

I spent my Black Friday decorating the house.  I woke up that morning.  Had my coffee and a bagel.  My grandmother was coming over around noon to help me decorate.  I could not wait that long.  By 830 am  I became SUPER WOMAN

Stockings are hung by Fireplace.  I decorated mantles, the ficus tree, coffee tables, dining room.  Hung wreaths, swapped out towels and rugs.  I was like a Mad Woman on Friday.  I was blessed to have my grandmother come over around 1pm and she was like, "you have Most of it up, there isn't much for me to do". She brought her old village set and set it up on one of the cabinets in the dining room and helped me decorated the tree with ornaments.

My parents and brother will be in for Christmas and I want it to look nice.  The whole family is coming to the house on Christmas day for dinner (except my baby brother and his family).  I want the house to look extra special for my mom since she isn't here to decorate it herself.  (she will be in 2 days before Christmas)

I have to say the house looks great.. Between my grandmother and I we accomplished a lot.

BUT,,,,it seems with all good things there comes a BUT

And I knew it but put my "BUT" aside to ensure I created a festive environment for everyone who comes to the house.  I took full advantage of the "energy" burst I was feeling and boy am I paying for it.  I am super tired and my legs are tight and in pain...

 WHY DO WE OVERDO IT WHEN WE FEEL GOOD?

I KNOW the price I will pay for it... so why do I do it?

This is my favorite time of year.  Being a transplant from Ohio its VERY hard to get in the Christmas spirit in Florida. There is no snow and most days we are outside in shorts and t-shirts. We in Florida, well at least me, dream of a White Christmas - I love going up north for Christmas.  I think EVERYONE in the US should have snow on Christmas Day (then it can go away).  I love the music, in fact that is all I listen to until day after Christmas.  I love the Hallmark Christmas movies, old classics like Frosty the Snowman and Rudolph.  And the classic Christmas Vacation.  I just love Aunt Bethany and watched this movie 3 times already this weekend.

I love the lights, the decor.  The change in spirit, during the holidays warms the heart.  People seem to be more giving, more tolerant, more patient (except when trying to find a parking spot at the Mall)

It's amazing what we as MS'ers do and sacrifice for the love of our family and friends.  But we have to take care of ourselves.  If we don't take care of ourselves we won't be able to take care of our loved ones or may have to miss out on opportunities because of increase fatigue, pain, or more severe, a relapse. 

Ask for help - allow for help - conserve your energy - remember what you use EXTRA one day may take away from what you have the next day. 

As much as you may really love decorating.  Let people help you put up a tree, string lights, put out decorations, bake holiday treats.  All of this takes more energy than I realized. 

I really like the Spoon Theory.  Its symbolic of what we deal with.

My Christmas wish to you all  (I know its early) but my wish is for ALL of us to have a Pain free, Symptom Free, Relapse Free Holiday.

 

To Flu Shot or Not to Flu Shot...the MS Question

TASTES GREAT!!!

VS

LESS FILLING!!!!!

COKE 

                                                       VS                                                          

 PEPSI

CHOCOLATE                           VS                                 VANILLA

BACON                                       VS                                        SAUSAGE

 

 

Flu Shot or No Flu Shot...that is the big debate

1 in 5 in the US get the flu every year.  Is there a way to lesson that statistic?




ARE FLU SHOTS SAFE FOR PEOPLE WITH MS?

Many people swear by the shot and many people get "sick" from the shot.  Some believe that they get got sick worse the year they got the shot (even myself).  The flu virus that is used in today's shots are grown in chicken eggs and immediately killed off so that chances of developing the flu from the vaccine is not possible.

Ok but I have MS, can i have the shot or no?  Is it safe?

According the the National MS Society this years Flu Vaccine protects against 3 different strands of the flu.... you get a 3 for 1 deal in this vaccine (we all love a deal don't we? )

It contains the H3N2 virus, an influenza B virus, and this year's H1N1 virus

The strands are inactivated, so its a dead virus.  This means it is safe for MS patients.  here is an excerpt from NMSS website:

 " It has been studied extensively in people with MS and is considered quite safe. The injectable flu vaccine may be taken by people who are taking an interferon medication, glatiramer acetate, mitoxantrone, natalizumab, or fingolimod.

 

However it is not yet known whether the vaccine is as effective for those talking natalizumab or fingolimod." (tysabri and gilenya)

 

 

 



I know we all hate injections....so what about this FluMist® I hear about.  FluMist® is a nasal spray that is used to prevent Flu in people.  However and this is a big one...it contains a live virus strain.  NO NO NO - you should not use it if u have MS.  Our immune systems are already on hyper drive, we don't need a live virus going inside of us and causing our immune systems to work extra for that.  Or - with some medications, our immune system is deficient and the live virus can make us VERY sick.

Although the nasal spray is more appealing - just say NO

Here is what the Multiple Sclerosis Foundation Says: (sharecare.com)

"The flu vaccine is safe and effective for people with multiple sclerosis (MS). It is recommended annually for those who are susceptible to flu, likely to be exposed to flu, or who have respiratory problems or certain chronic disorders. Pregnant women who will be in their second or third trimester during flu season should also receive a flu shot. Importantly, FluMist Intranasal, the first flu vaccine in the U.S. that is administered as a nasal mist, is not recommended for people with MS. FluMist is a live-virus vaccine that may cause an increase in disease activity in those with MS"

I visited the CDC website to find out who should and shouldn't be vaccinated and here is what they say:

Who Should Get Vaccinated This Season?

Everyone who is at least 6 months of age should get a flu vaccine this season. It’s especially important for some people to get vaccinated. Those people include the following:

• People who are at high risk of developing serious complications like pneumonia if they get sick with the flu. This includes:
  • People who have certain medical conditions including asthma, diabetes, and chronic lung disease.
  • Pregnant women.
  • People 65 years and older
• People who live with or care for others who are high risk of developing serious complications. This includes:
  • household contacts and caregivers of people with certain medical conditions including asthma, diabetes, and chronic lung disease

Who Should Not Be Vaccinated?

There are some people who should not get a flu vaccine without first consulting a physician. These include:

• People who have a severe allergy to chicken eggs.
• People who have had a severe reaction to an influenza vaccination.
• Children younger than 6 months of age (influenza vaccine is not approved for this age group), and
• People who have a moderate-to-severe illness with a fever (they should wait until they recover to get vaccinated.)
• People with a history of Guillain–Barré Syndrome (a severe paralytic illness, also called GBS) that occurred after receiving influenza vaccine and who are not at risk for severe illness from influenza should generally not receive vaccine. Tell your doctor if you ever had Guillain-Barré Syndrome. Your doctor will help you decide whether the vaccine is recommended for you.

When Should I Get Vaccinated?

CDC recommends that people get vaccinated against influenza as soon as flu season vaccine becomes available in their community. Influenza seasons are unpredictable, and can begin as early as October.
It takes about two weeks after vaccination for antibodies to develop in the body and provide protection against the flu.

Please visit these sites i have mentioned to read more about the Flu Shot (there are hyperlinks in the blog to where i got the info)



According to all the research I have found, the Injectable Flu Vaccine is safe.  If you still have questions on if its right for you, speak to your Neuro/MS Specialist. 

I was one of those sceptics who felt they were sick more each year when they got the shot so i did without. I did decide this year to have it done as i want do do everything i can to stay flu free.

Here's to a Happy and Healthy winter season

Frakenstorm Assistance Needed

The East Coast will never be the same..



The famous Seaside Heights - Coney Island have all been destroyed

Coney Island

Seaside Heights

Looting is in full force- PLEASE STOP!!!!!

In our last post we were helping people prepare for Hurricane Sandy... Being from Florida and seeing the devastation and living through the devastation caused from Hurricanes that were Category 2-3-4 over the past 13 years... Sandy was only a Category 1.  Yes it would bring problems but I never fathomed the mass destruction it would cause.  And if the Hurricane wasn't enough it collided with a jet stream that caused a LOT of snow for some of the Midwest.  This has been named the Super Storm of the Century. Frankenstorm

This storm affected everyone north of Myrtle Beach, SC.  MASS destruction at the Jersey Shore, Staten Island, Long Island, LongBeach, Tottenville Beach, Howard Beach and sooo many other places (comment on other areas i did not list so everyone is aware).

I sit here in Florida, feeling guilty.  Bad Hurricanes are supposed to be a southern thing.  I was HAPPY to hear we would only get the 45mph wind gusts and that our temps would be cooler.  I can handle that.  But in that moment of self relief, I never imagined the destruction it would cause to the rest of the east coast.  WHY didn't it just go out to sea and fizzle out? 

When i heard the news of the path this storm was taking and the fact that there was another storm it was going to collide with I got scared.  My best friend and sister as well as many friends live in Sandy's path.  The Northeast isn't prepared for Hurricanes.  Yes they were hit by Irene, but to happen twice in the same area?  I don't think anyone considered that a near possibility.

Low lying areas were asked to evacuate due to flooding/winds.  But NO ONE imagined this would effect sooo many more. Lists came out of what supplies to have on hand, what to do to prepare if you were going to wait it out "just in case you lost electric".

estimated 7.5-8.5  million lost power

The death toll from Sandy at least 149

The tallest wave was measured at 39.67 feet (examiner)

$50 billion in damage(estimate)

Some statistics from Examiner.com

The top five states which received the highest rainfall were:

1. Andrews AFB, Md.: 15.3" (unconfirmed)
2. Easton, Md.: 12.55"
3. Wildwood Crest, N.J.: 11.67"
4. Virginia Beach, Va.: 9.57"
5. Milford, Del.: 9.55"

The top five states buffeted by the highest wind gusts were:

1. Eatons Neck, N.Y.: 94 mph
2. Montclair, N.J.: 88 mph
3. Westerly, R.I.: 86 mph
4. Madison, Conn.: 85 mph
5. Cuttyhunk, Mass.: 83 mph

The top five states recording the lowest barometric pressures on land were:

1. Atlantic City, N.J.: 948.3 mb (28.00" Hg)
2. Philadelphia, Pa.: 953mb (28.23" Hg)
3. Harrisburg, Pa.: 963mb (28.46" Hg)
4. Scranton, Pa.: 971mb (28.69" Hg)
5. Trenton, N.J.: 958mb (28.31" Hg)

The top five states receiving the most snowfall were:

1. Redhouse, Md.: 26"
2. Bowden, W.Va.: 24"
3. Champion, Pa.: 13"
4. Newfound Gap, N.C.: 22"
5. Wise, Va.: 24"

Many people in Sandy's path have lost EVERYTHING.  Their homes were swept away or severely damaged.  Their vehicles are gone.  All of their possessions are gone or ruined.

  THEY NEED OUR HELP

They have no food, water, clothes, medications, money, gas, phone, electricity.  They are living with friends, family or in shelters.

 THEY NEED OUR HELP

What can you do?

If you have a friend of family member in that area, or live close by you can send basic necessities to them to deliver to the shelters (food, water, clothing, winter clothes, boots,shoes, jackets, toiletries).  If you are distanced, you can donate money (any amount you like) to the Red Cross https://www.redcross.org/donate/index.jsp.  You can text a $10 donation on your cell to 90999 and message REDCROSS.  This will be applied to your cell phone bill or lastly call 1-800-RED-CROSS

WE NEED TO GIVE HOPE TO EVERYONE AFFECTED BY THE STORM.

 

Will there ever be a calm after the storm?  I have to believe YES - I believe if we as a Nation come together we can help our brothers and sisters gain back some normalcy. 

UNITED we must stand - stand with us.

A Special THANKYOU to all our 1st Responders, our Police, Fire Department, Coast Guard, National Guard, Electric Companies, Red Cross, Shelters, Donaters, volunteers, pet relief, and everyone who has helped our storm victims.

Are you ready for a storm?

Are you Ready for a Storm?

 

 

Hurricanes, snow storm, ice storm, torrential rains, tornado's, etc.

 ARE YOU READY??

Do you have mobility issues?  Cognitive issues?  Heat or cold issues?

For those in the Northeast baring down for Sandy (lets hope it fizzles out) or any other storm - here are some things to keep in mind that I have seen posted.  Please Comment if there is anything that was left out!!!


most of these shared by our co-founder Sharon

1- make sure your meds supply is up to date and you have all you need.

2-Flashlights- keep all flashlights in a specific spot so you know exactly where everything is.

3-Batteries- make sure you have different size batteries AAA, Double AA, C'S & D'S

4- Candles and Butane lighter ( the long ones you can use to start up your BBQ grill)

5- Gas up your cars/make sure your tires have proper air
 • Car charger for your cell phone. If your cell loses "juice" you can always run out to your           car and charge your phone.

6- Buy non perishable items to have on hand, soup, peanut butter, dry cereal, crackers, spam,  etc.

7- Get a "old school phone"  - a phone with a cord. If you lose power you can remove the battery powered phone from the jack and use the phone with a cord - put that into the jack which doesn't require batteries and you'll have phone service.You can go to a pharmacy, a 5 & Dime store they usually have them for under $10 (she sadly learned this during 9/11 so she could have phone service)

8-THIS IS KEY!!!!! Make sure your power company knows you are disabled (they keep that on file) and USUALLY if you lose power they attend to those first listed as "disabled"

9- Have distilled and regular bottled water.

11- Hand crank radio/flashlight (I found them at RadioShack) I have seen them run $40-$200 - but the one time investment is so worth it, especially when you need light or access to hear what is going on in the outside world (you can use it while camping too)

 12- Make an emergency bag. Extra clothes for you & your family ,tooth brushes toothpaste, brush, feminine items, spray shampoo, medications, and personal items. A list of meds, doctors names addresses. Also in this emergency bag keep all of your important documentation IE birth certificates, passports etc.

If your in a low lying area highly important in case of evacuation.

put this in a liquid tight bag or liquid tight plastic bin

13- DONT FORGET ABOUT YOUR PETS!!!! if you have pets make sure you have enough food and water for them, if they take meds for aliments make sure you have their meds on hand as well

14- if you have kids, charge their Nintendo DS, Nooks (even your own Nooks or Kindle) if you lose power you make sure the kids are occupied

15- I have bags of ice in my freezer. If you lose power put the bags of ice in your frig/frigs it will help keep things from spoiling. Don't open and close the door to the frig, keep it closed so the cold air doesn't escape. this is important especially if your medication require refrigeration



16 - fill your bathtub with water. if you are without power for extensive period of time you may need this for bathing - brushing teeth - during storms your running water can become contaminated and you wont have power to boil it first

17 - get cash out of the ATM - if no power  - no ATM's or Credit card machines will work

 

18 - if you have a portable AM/FM radio make sure batteries are fresh (if you don't have a hand crank radio)

19 - if you have a generator make sure it works. if its gas powered be sure you have gas for it (a few cans as backup)


20 -make sure you have gas/charcoal for your grill - if you lose extensive power and the ice runs out you can grill your meats and other foods before they spoil

21 - if you have portable/non electric powered fans/heaters make sure they work and if they take batteries you have enough strictly for them

22 - update your First Aid Kit

In Florida as most of our storms are hurricanes, we board up our windows - if the storm coming your way allows time for it, it may be a good idea.

if you are approaching a devastating storm, GET OUT!!!  Call a friend of family member in a different area or go to designated storm shelters

If you can - reach out to one person after the storm is over and let them know you are ok or if you need help  and have them spread the word. 

Join our Fundraiser to Support Multiple Sclerosis (click above Logo)

Be a Take-Charge Patient

Award Winning Author Martine Erhenclou , patient advocate and speaker joined our SecureACure4MS Blogtalk Radio show on Friday October 5th. Her first book the critically acclaimed Critical Conditions~The Essential Hospital Guide To Get Your Loved One Out Alive, received 15 awards. Martine empowers patients to become pro active and well informed participants in their own healthcare. Upon further research Martine wrote another highly acclaimed book which we will be discussing this evening the title of this book is The Take Charge Patient.

Listen to internet radio with SecureACureForMS on Blog Talk Radio

The Doctor-Patient relationship is very important for you and your health.  Here is what Martine suggests we do when seeking a doctor:

Find a doctor:

       • who you like;

       • who you can talk to and who listens to you;

 

       • who you can collaborate with in a partnership;

       • who respects you;

 

       • who will reach out to other physicians for more information, putting

         ego aside

       • who returns phone calls;

 

       • who is invested in your health and well-being.

 Be mindful that our Doctors are not House - they are not mind readers, we need to communicate with them about what is going on so they can effectively help us.  With holding information is a disservice to you, your doctor and your health.



When you see a doctor, at the end of your visit, get your medical records for that visit!!!!  You have a right to them.  Get write up of visit, any test results, copies of MRI's or other scans.

Tips from Martine to prepare for a successful doctor’s appointment:

1. Prepare a list of questions for your doctor. What do you want addressed in the office visit?
2.  Create a brief health summary that includes:
-your top three medical concerns
-your list of current medications and their dosages, over the counter medications, herbs and supplements
-any symptoms you’ve been having, when they occur, what makes them worse or better (for example: exercise or eating) and what you have tried for symptom relief.
-List any medical professionals you’ve seen for your current condition or for other conditions that pertain to your visit.
3. Prior to your appointment, obtain copies of any test results and reports that were done by other physicians. Bring these copies with you. Never rely on a doctor’s office to send them as medical offices are very busy and your request can be easily overlooked.
4. If you are seeing this doctor for the first time, create a brief health history including major medical events such as surgeries, serious illnesses, medical conditions and more.

Please know it is OK and encouraged that you get a 2nd opinion's or more.  We know our bodies and know when something isn't right.  Don't just settle if in your gut and with your research you find more information.  Talk to your doctors about what you find.

Being a Take-Charge Patient means you are knowledgeable about your condition. RESEARCH RESEARCH RESEARCH!!!!!

Please don't do what a lot of people do (including myself at one time) and just start typing your symptoms into Google:
1 - you are going SCARE yourself
2. - you are more than likely not get the information you need
3 - you wont receive credible information

Research at sites that end in .edu, .org. gov

Go to the Disease's specific websites, such as National Multiple Sclerosis Society (www.nmss.org), Multiple Sclerosis Association of America (http://www.msaa.com) Nancy Davis Foundation (http://www.erasems.org)

Make sure your Sources of information are credible - for your sanity and health.

There are too many times that we hear about Medical Errors in health care.  What can we do to help prevent them?

One of the most common medical errors is in prescription medicine. Its important that EVERY doctor or medical professional you are seeing knows what drugs you are on to avoid double dosing or prescribing something that will cause a bad reaction due to other medication you are on.
when you receive your prescription for the pharmacy - verify you have the CORRECT medication. Sadly, its been know that the wrong medication is filled or you are handed someone else's prescription.


Martine recommends:

Every patient should carry a Medical ID card.  This will list information that is needed in case you are not able to speak and it allows others to see medication and illnesses you have been diagnosed with.  As well as Emergency information.  Below is a snippet of the card

 

Martine has available on the Take-Charge patient website a FREE download of the Medical ID card template.  Please go to http://thetakechargepatient.com/pdf/MedicalIDCard.pdf

Martine has provided to everyone on her website resource to assist us such as:

Sample Questions to Ask Your Doctor and Yourself

Questions to Answer Before You See Your Doctor

Questions to Ask Before You Select a New Doctor

Questions to Ask Your Doctor about Your Diagnosis

Questions to Ask about Your Health Insurance Provider

Questions to Ask about Medications

Questions to Ask Your Doctor about a Surgery

Questions to Ask Yourself about Your Symptoms

Questions to Ask Your Doctor about Tests and Procedures

Questions to Ask Your Doctor about Your Treatment Plan

 

This is such a small portion of what Martine's provides.  This is a resource we strongly encourage EVERY person to pick up. You can get more information at www.thetakechargepatient.com

 

BE A TAKE-CHARGE patient

 

 



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.