Well MS World Day is finally here!   And there are over 200 events in 61 countries.

Here in the United States the MS Society is calling for National Healthcare Reform and to include the MS Society's Health Principles. In Romania and the Netherland's they are having a Global Dinner Party.  In Portugal it's a Sing for MS . In Norway it's a Research Conference. In Belgium, Luxembourg, France and Canada they having a "Roll for MS "( a cycle motorbike event )

Each country is having its own events. But they are all for the same international cause of helping to increase the awareness of MS globally .The issues that people with MS face are the same everywhere and globally. As Prof Alan Thompson, Director, Institute of Neurology, UK and Chairman, Multiple Sclerosis International Federation?s International Medical and Scientific Board correctly states:

?People with MS have complex needs and at the moment these are not being adequately met anywhere in the world.?

• Remember that Globally, at any point in time, around 30 people in 100,000 have been diagnosed with MS.

 
So what are these issues? 

The Issues affecting people with MS across the world include:

• Lack of social support
• Lack of public information and education about MS
• Lack of access to availability of disease-modifying treatments and other therapies
• Issues related to employment
• Health insurance and social security issues

 

U2 have contributed their song "Beautiful Day" , which will be featured on a global campaign film highlighting different aspects of MS. This film will be available in 10 languages. To see the film and other information on World MS day go to :             www.worldmsday.org 

Below are some of the quotes from other celebrities about MS

 

Argentina: Lionel Andrés Messi, FC Barcelona, Footballer
?Whenever I go out to the field, whenever I kick the ball and whenever I run to catch it, every step and every effort I make will be a tribute to the people who live with a much more difficult challenge, to fight every day against MS.?

India: Milind Soman, Bollywood actor
?All of us have to globally join hands to improve the quality of life of people affected by MS. We should all work in cooperation to achieve worldwide solidarity for the MS movement.?

Portugal: Mário Laginha, Pianist and Compositor
?We like to think that we are invulnerable and that we will not get a disease like MS. Nevertheless, some of us or our loved ones will be affected by it. If everybody is aware of this and shows their support, then maybe we can make a giant step towards the discovering a cure. That is what I wish.?

Spain: Josep Guardiola, Football coach, FC Barcelona
?Imagine that one day you get up and your body does not respond to the orders of your brain. Imagine fighting every day to do what you want without having to think about it. Imagine this and tell me if it is not worth supporting the fight against MS. Join us!?

USA: Clay Walker, Multi-platinum recording artist
?Join me in supporting the first World MS Day and together, through international collaboration, we will help researchers find the answer to end MS.?

Meanwhile, eight people will climb six of Ireland's mountains in 72 hours. And Lori Schneider, USA, who has MS has reached the summit of Mount Everest.  Check details on her site at :                      www.empowermentthroughadventure.com

                                                                            ellie

 

                                                                                                                                    With 7594 registrations from 125 countries as of May 23 there is a growing worldwide support for MS Day on May 27 .  This event will in the future be held every day on the last Wednesday of the Month of May.

Many thanks go to the Multiple Sclerosis International Federation and all its member MS society's for pulling this event together to unite every person that is affected by MS worldwide.

By doing this event every individual, group or organization in the world can commit to and join together in the fight to improve the quality of life of of every one that is affected by MS.

The of goals of this event are: 1). research to improve treatment of and find a cure for MS.  2). to give help to MS Society's worldwide to support people with MS. 3). to communicate information about MS to all people worldwide. 4). to advocate and  campaign for the rights of all the people with MS worldwide.

Using the latest data from The Atlas of MS www.atlasofms.org   with data from 112 countries MSIF estimates there are about 2 million people world wide with MS. MS is a worldwide disease but more prevalent in northern Europe, North America, Australia and New Zealand, This has led to a speculation that the Vikings who colonized Northern Europe brought the genetic tendency to Scotland. And as England was a big colonizer they spread it around the world. For more information on its epidemiology see PDF in             www.worldmsday.org          

I will share more on this event post in my next post on my blog      

                                                                                       ellie

      In my blog on hope I mentioned that I was in a remission.  And now three months later I am still in a remission. In fact this is the longest and the most extensive  recovery I have ever had in a remission. My last remission that would have come close was seven years ago.

Whenever a remission happens there is a real nervousness that I always feel. That if I love the new me too much when I lose it which I always do it'll hurt too much when I go back downhill again.

So to prevent this I've tried to live for each moment in each day appreciating what I have now. And everyday do something that I can now do. And luxuriate in that wonderful sensation of feeling so well.

So I have had a lot to share that I haven't because I didn't want to Jinx it!! And also of not wanting to put too much importance into it that it will hurt more if and when most likely I lose it again and go into a relapse.

But here I am visiting the Coho's falls with my husband. And I am using my wheeled walker.  You'll notice it also has a seat.  This is the first time that I have used this outside my home in about five years. I have been using it at home gradually increasing the amount of time as I am capable of walking.  I just keep getting better.  I'm having difficulty just believing it.  Well I'm off for home.  Maybe I'll do some raking tomorrow.

More on my remission later.

                   Ellie

 

 

 

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There has been so much talk about hope lately.  The state of our country is so deeply worrying to all of us.  We desperately need President Barack O'bama and Congress to work together to come up with solutions to get us out of the mess we are in.  

The dictionary's definition of hope is: a desire for something , usually with confidence in the possibility of its fulfillment: (for example he was greeted by some as hope for further interest rate cuts.)

However, the hope that most of us feel today is much deeper and filled with much greater anxiety than the dictionary's definition of Hope. Many people are scared that they will lose their jobs, their homes and that they may never recover economically.  And the situation that they are in is not totally under their control.

The poem "Hope" by Emily Dickenson, which is also one of my favorite poems describes more closely the Hope that many of us have.

 

HOPE IS THE THING WITH FEATHERS

by Emily Dickinson

Hope is the thing with feathers

That perches in the soul,

And sings the tune without the words,

And never stops at all,

And sweetest in the gale is heard;

And sore must be the storm

That could abash the little bird

That kept so many warm.

I've heard it in the chillest land,

And on the strangest sea;

Yet, never, in extremity,

It asked a crumb of me.

 

Many of us also have had or have the experience of having a problem in our own personal lives. A problem that we also do not have much control over. A problem like our nations problem which is or potentially could be limiting to our lives.  But here again there is always that little kernel of Hope that somehow,some way ,somebody or something will happen to make it better.

In my own personal life MS is my personal problem. I have been going downhill for years. I still get a little better periodically in remissions from my many relapses but it's still downhill, especially for the last four years.  I like to think of myself as a realist who accepts what I cannot change and deal with it. To do this in my current situation has meant that I have stressed modifications to my home and car etc.  I have looked at every difficult functional situation with the philosophy of how can I modify, what can I have built or purchase to make myself more functional. And it has helped me to be as functional as I can be.  And I am very proud of how I have been handling this. 

But deep down in the recesses of my very being is the Hope that I would have a terrific remission and I would gain back function in my daily life that I hadn't had for years.  And I would keep it, never to go badly downhill again on my next relapse.  Or even better, no relapses ever again!  Everything physically back that I would have had as the physically active women I should have been all this time.

Sometimes I dream of headlines like- "SCIENCE TRIUMPHS: New Drugs for MS to Remyelinate Nerves and Develop New Axons !!"   "A Vaccination Developed to Prevent MS."  And of course the best headline of all " A TOTAL CURE FOR MS! !"   I do believe that this will happen but not anytime soon.  And at 73 I need soon.

But I have had a little miracle of my own.  I am now in the middle of wonderful remission. It's three weeks old. I was not be able to walk at all and needed an assistive aid to help me stand up and get out of bed independently.  Now I am standing up and getting out of bed with out aids and wall walking independently 10- 30- 50 -100 feet.   My legs, my trunk, my arm strength and hand coordination are all coming back.

And I am in a state of grateful,grateful thank you, thank you God amazement!!!  I'm taking my wheeled walker with a seat out of cold storage along with my canes.  They need a bit of cleaning up, fixing a wheel and the brakes on my wheeled walker and I think maybe a paint job.  I'm celebrating my miracle by going off to visit my oldest sister in Boston.  I think I'll paint my old cane that I'll bring with my wheelchair a bright red.

I feel that what has happened to me with my MS is a reminder that you should never give up Hope.  Whether it's for a recovery, a remission of a disease or the economic problems so many of us have today. We must remember to keep our Hopes and Dreams alive.  But  while we're waiting for things to take a change we must remember to adapt and do our best to do well. Be a realist to the current situation but never give up your Hope and your Dreams that things can get better.

  Maybe my husband and I will not be zipping around on a motorcycle. But just a little walk in my home and and the ability to be able to do more is a blessing. I won't be greedy!

So hang in there every one and don't give up hope. Things will get better and you'll adapt better too.

                                       Ellie   

 

When Michelle Obama talked about her father and his living with Multiple Sclerosis she mentioned his difficulty walking. She remembered him struggling with two canes just to cross the room to kiss his wife.  But what she talks about the most is the fact that he had to get up 1 hour earlier to allow him to get ready to go to work.

 

  People with multiple sclerosis and other disability's can relate to this.  Everything takes longer and with multiple sclerosis the fatigue itself not just the decreased strength, coordination, vision loss etc. makes it more difficult.  You and your family find that you can't do it all. With time MS can become  progressive and what you can do becomes less and less. Many of your children's, spouse's and family events as well as special events of your own are canceled or given up due to your multiple sclerosis and it's disabilities. 

 

But going to work and using your skills to do something worthwhile is well worth the effort. It's being part of society, it's providing for yourself and for your family too. And if that means giving up other things you'd like to do and  having to go to bed earlier also, it's worth it.

 

But what Michelle and other children with a parent who has MS know is that time is a big factor in their family.  And for the parent who has MS choosing how to use their limited time it is critical.  That extra hour of her father's day was so he could go to work to bring home the necessary income for his wife and two children. Because of this these two children were successfully sent to college.

 

The sad fact is that MS is a debilitating disease that starts early when an individual is starting a career and a family.  As disability increases income decreases. Sending your child to college when you have become disabled can be nearly impossible.   In fact the MS Society does have a scholarship fund for this knowing the difficulty MS patients and their family's can financially face. &quoto you take expensive drugs or get an appropriate wheelchair that allows you to get out of your house to go to you're child's event at school or send your child to college?"

 

Now, I do not know if Michelle's father could have worked longer if accommodations had been made in his work place.  And I do not know if even working with accommodations would have made it possible for him to continue to work due to the progression of his multiple sclerosis. I don't know if he experienced the hassle that  applying for disability can be. (This hassle is something I just don't understand! One does not live well or allow your family to live well on disability insurance!! )

 

  But what I do know is that before the ADA passed in 1990 many many people with multiple sclerosis who could have worked with the proper accommodations were denied the opportunity to work. This was a lose-lose situation.  A loss for the person with MS and a loss for the workplace's that would have benefited from their being there.

 

And as you know the ADA did not totally solve the problem of people with MS and other medical conditions of being denied the opportunity to work. When lawsuits were brought to companies that were not allowing them the proper modifications, people with disabilities were losing in court.  Then when the issue was  brought up to the Supreme Court people with disabilities were losing there also. Unfortunately our Supreme Court was reading the Congressional ADA Act in a very narrow fashion. But the amendment to the ADA that was just recently unanimously passed by Congress and signed into law by the president should correct this problem.  Now people with conditions like MS,Diabetes and Epilepsy that were not being covered prior to the amendment should  be covered.

 

Our new president- elect Barack Obama was a co-sponsor of the ADAA (the amendment to the ADA bill).  And he is a very strong advocate for the disabled.  This was even apparent in an excerpt from his victory speech November 4th.  When he was listing all the varied people in our country he included the termed disabled along with all of the others.   " It's the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, disabled and not disabled -"   I have been listening for years to political speeches wanting to hear the word disabled included and this is the first time ever!!  I almost couldn't believe I heard it.

 

Now, this may not seem to be very important.  But the ease with which the disabled were included was momentous to me.  When people automatically feel that the disabled should have equal rights just as all of our other citizens we've made progress.  At 73, I remember when I graduated from college as a Physical Therapist in 1957 this was not the case. And for too many years we've continued to deny people with disabilities their civil rights. It was easier to continue to put children in Homes for Crippled Children, soldier's with disabilities in The Old Soldiers Home, and others into Homes for The chronically Ill.  Or just keep them in their homes and forget about them.  Or when we close down many institutions especially for mental conditions just let them be the street people.

 

  However, we should never forget how much progress has been made for people with disabilities.  In many states  children with  disabling conditions have special schools or can be mainstreamed with appropriate modifications in regular schools.  There is also this big emphasis on early identification to start therapy programs for these children.  And adults with Strokes, Parkinson's, MS, Spinal Cord injuries etc. have a lot better equipment to help them be more independent.  This way they can take advantage of the ADA's rulings on work and accessibility to public places. I can not under estimate the importance of this. The world has been opened up to so many people that were just not part of our society. 

 

Unfortunately there is still more work to do .  See the article about Texas http://www.dallasnews.com/sharedcontent/dws/dn/opinion/viewpoints/stories/DN-boatright_15edi.ART.State.Edition1.4a2b60c.html be warned, it's upsetting.  Also the current article in the Wall Street Journal on how the economic problems today are affecting the disabled and the elderly.    http://www.careerjournal.com/article/SB122714130153442755.html

                                                                                                               But there is still much to be happy about.  Remember we will soon have a President in the White House and legislators in Congress (there is an MS Caucus in both the House and Senate) that are very much behind improvements for the disabled.  Indeed even with this current economic crisis I feel it still does look promising.

Here are Barack Obama and Tammy Duckworth, a disabled Iraq war veteran who is now Illinois Veterans Affairs Director. The picture was taken in Illinois after Barack laid the wreath on veterans day. Tammy is an Iraqi veteran who lost both of her legs.  Due to advancement in prosthetics Tammy is up and about walking and very employable. Check out Barack Obama's  transition website.  Here you will see his commitment to the disability community.  http://www.careerjournal.com/article/SB122714130153442755.html