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05/30/12

Permalink 02:37:00 pm, by eleanor Email , 219 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities

THE MESSAGE FROM WORLD MS DAY

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World MS Day (WMSD) is the day in which global awareness rises to help the people of the world to understand this young peoples 's disease which lasts their lifetime and impacts it so much.

This is the only global awareness campaign. It was started in 2009 because all of the organizations for MS worldwide and people with MS knew there was a need for people to understand the effects of this disease better. In its first year in  2009 there were 200 events in 67 countries. By last year  that number had risen to 73 countries.

In each of these countries they still have their own events like here in my hometown in Saratoga Springs NY.

 P1010086                                          The yearly MS Walk to raise money for research and projects to assist people with MS took place at the Saratoga Raceway on May 8, 2012. For more information on the event and more pictures go to : www.wiltonreport.com

But the global awareness day fills a need world wide. This year the theme is Living With MS. Go to : http://www.worldmsday.org/wordpress/

To find out more about individual people with MS world wide go to this site also. It has 1667 postcards from people living with MS with their messages to us.  http://www.youtube.com/user/worldmsday2012?feature=watch

And ending my blog with the inspiring song on video" WE Believe" sung by Mariah Carey and Whitney Houston.

ellie

05/15/12

Permalink 01:39:00 pm, by eleanor Email , 672 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities

WHY BULLY A PERSON WITH A DISABILITY

Or why bully anyone at all. I've never understood why some people belittle or bully other people. But when they do it to a person with a disability to me it's beyond being mean it's cruel.There was a recent article "Children With Autism Are Often Targeted By Bullies " in NPR recently .  http://www.npr.org/blogs/health/2012/04/23/151037898/children-with-autism-are-often-targeted-by-bullies?ft=3&f=111787346&sc=nl&cc=es-20120429      

This article is about a personal experience of a child with Autism who wanted to make friends. But all she found in return to her overtures to be friendly was to be bullied back. Her concerned mom pulled her out of the school, quit her job and home schooled her for two years. Then concerned about her daughters socialization needs placed in a school for kids with autism. And it's been a successful fit. Her daughter is happy and making friends.

Being able to socialize and have a few close friends is critical for good social development, mental health, self esteem and physical health. And bullying a person can thwart this opportunity and can do long lasting harm to them. Many people think of bullying as just a short term hurt.

Teasing someone is a short term hurt. You can tease a friend or relative as well as someone you don't like. But its usually someone you have good feelings for.

But bullying is well beyond teasing. It's a method to amuse yourself by putting down another person who you see as weaker. And it is used to increase your own sense of power.It can be both verbal or physical.

People with disabilities seem to be a favorite choice of bullies. Lets face it people with disabilities can be seen to be different. And to some people the first response to different is a negative emotion. With time that response to something different in that person may be modified to liking, respect or indifference.

But unfortunately some people do not appear to be capable of moving beyond that negative response to curiosity, understanding and empathy. Instead of extending a hand they extend hatred and vitriol.

Why some people are like that I do not know. Do they learn it at home or go along with friends to be popular? The article was talking about a young school child. And this is one of many articles. In fact the statistics show that  80-90 % of children with a disability are bullied.And this is world wide. A very good article on learning disabled children from Great Britain shows that 82% are being bullied. For more information go to this article from The Guardian in Great Britain. http://www.guardian.co.uk/education/2007/jun/18/schools.children

Now we all know sadly, bullies do not always outgrow this addictive negative behavior. So these disabled children may experience many more episodes throughout their life. These children have to learn to have a thick skin and strategies to counteract the negativity as they continue to be in society. There are organizations that help with this like the Bully Free World. Check out their extremely helpful website below.

http://specialneeds.thebullyproject.com/toolkit

And on a personal level promise to never bully a person and never turn the other way either. Go that extra mile to learn about other people with disabilities, befriend some and benefit from taking the time to get to know them.

Friends of the Handicapped
                                          
           Author Unknown

Blessed are those who take the time
To listen to difficult speech,
For you help me to know that
if I persevere,
I can be understood.
Blessed are you who never bid me to hurry up
or take my tasks from me
For my failures will be outweighed
By the times I surprise myself and you.
Blessed are you who asked for my help
For my greatest need is to be needed.
Blessed are you who understand that it is
difficult for me to put thoughts into words.
Blessed are you who with a smile encourage
me to try once more.
Blessed are you who never remind me that today
I asked the same question twice,
Blessed are you who respect me and love me
just as I am.

ellie

04/23/12

Permalink 12:21:00 pm, by eleanor Email , 385 words   English (US) latin1
Categories: thoughts, Coping, adapting activities, Gardening

I NEED MORE GOOD NEWS AND MORE FUN IN MY LIFE !!!

And I don't know if it's MS fatigue, depression, reaction to no monthly IV Methyl- prednisone or the world news I'm bombarded with.  But my mood is down and being up is an effort.

I've always gone with the rule that to manage life well you need more good news than bad. I had a UTI which is now resolved and I am a little less tired but ...I just can't seem to get into happy gear. And I haven't had that itch that I usually have to write a specific blog. There are so many issues regarding disability that I care about  but I want to write them from a positive upbeat position. I'm having difficulty doing this.... so I will instead share with you what I am doing to re-wind my energy meter. Now that spring is here -it means gardening time.

IMG_0453                                                                                                                               Having a Garden you plant means every spring, thru the summer to early Fall you watch and nurture the miracle of birth and rebirth of your annuals and perennial flowers.

First it's the Crocus's then the Tulips, Daffodil's and the Hyacinths. The various ground covers grow and their flowers appear as well as the purple and white violets.When you walk by a group of hyacinths like in front of my Apt house next door their smell permeates the air you breathe. IMG_0442

lone yellow flower bed guardian

 

 

 

 

 

 

IMG_0523

The Crab Apple tree at the side front of the house blossoms and then we look to the one in the back to blossom.    IMG_0503                                                              

Then there is the Jacobs ladder, Bleeding Heart, Columbine, Coral Bells and Hostas .

Soon it will be the  Bearded Iris, Peonies, all my different Roses, Hydrangeas and Day lilies .

And all Spring, Summer and Fall more plants and flowers will be growing then dying back ..the Perennials resting till spring.

And of course my Japanese Maple Tree is one of my favorites.IMG_0436

But I must not forget my next door neighbor Michele who is the best gardener on the block. To walk by the front of her house is a treat of beauty. Here are 2 snaps to give you a flavor!

IMG_0448IMG_0450

For more information on my energizing thru gardening and how I adapt my environment to my MS and Disability go to my prior blogs.My MS Gardening Blogs, and My Disability Gardening Blogs.

Happy Gardening

Ellie

04/02/12

Permalink 01:24:00 pm, by eleanor Email , 863 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

REALLY YOU DON'T THINK EVERYONE SHOULD HAVE HEALTH CARE?

In 2010  (18.5% ) 49.1 Million people in the US were uninsured. 16% of the uninsured were children, 30% were 19-25 year-olds and 18% were adults.

And many more people are underinsured.  Actually 1n 3 Americans is in a family with a problem paying their medical bills due to high health costs and being underinsured or uninsured.

According to a newly released study by the Dept. of Health and Human Services 129 million American under the age of 65 have some type of pre-existing condition. And those 55-64 are the most likely to have a pre-existing condition. This means they can be denied insurance or pay a much higher rate. These are the people that need health care the most!!

image   We are better than this!!

 

    Aren't we? 

 

    Or are we?

We have been trying to to have a form of universal health care for 50 years! Why can't we do it?

Every other western industrial country does. And they cover everyone with lower costs than we do. And in most  cases have better outcomes.

Is it because we have made health care into a profit industry while the other countries use government directly or only non-profits for citizens basic health care?

Have we developed a health care industrial complex like our military industrial complex?  The health care workforce is the 3rd highest in the US  following retail and wholesale.  As of 2010 the health care costs were 18 % of the US GDP . And the profits of the 10 largest health insurance companies increased 250% between 2000 and 2009. Then last year they rose again up 56% more with a 12.2 billion profit. For more info go to: http://www.healthreform.gov/reports/insuranceprospers/index.html 

The costs of prescription drugs have been helped by generics. However not all drugs have generics and prices have risen generally double the rate of inflation between 2005 and 2009. Specialty drugs like the interferon used by MS patients like me have more than doubled the rate. Some have tripled the rate of inflation. For more information go to: http://www.aarp.org/health/drugs-supplements/info-08-2010/rx_price_watch.html    and my prior personal blogs on the subject here.   

Our medical services emphasize expensive diagnostic services and elective surgeries vs. good preventive care with regular care by Family Practioners.  Almost completely the opposite of those in other countries. It seems we can learn from the successes in other industrialized countries. If we would only be open to them. They have universal coverage, the costs are much less and their results are better!!

Here there are a lot of lobbyists working for the many companies that provide our health care to keep the current system profitable for their clients. These companies and many people directly or indirectly (stocks) are benefitting from our current system. So why would they want to change it?

What if we made all healthcare non-profits and regulated outrageous costs like so many other industrialized countries. Would our escalating health care costs for each of us, the government and our country's economy be better?  I think so. Or are we just going to continue to go backward?

Because if we don't do something our health care costs will undo all else we as a country should be doing to progress in our evolving international global economy.  Is the answer to have our citizens use less health care even if they need it. What about the emergency room.....if you can't pay will we just let you die?

Or will we reign in the profit side of our health care industrial complex?

Right now 56% of Americans under 65 receive a variety of health insurance plans from their employer. (This started as part of a benefit package in place of increased wages which were disallowed due to price controls under President Nixon). And for the population as a whole 45% receive their health care from the Government. That includes Medicare, Medicaid, Military and Public Employees and their dependent's.  And 18 % have no health insurance insurance coverage at all.

I have been following health care and  the development of the Health Care Act for years. Here's my thoughts on the subject in 2009. 

Today I'm still very committed to health care reform and universal coverage with no limits on insurance for people with prior existing conditions. I am also committed to reducing it's costs. I was pleased to read the plans in "Obama Care" for doing just that.

The Law has been passed by Congress and I on Medicare have not had an increase except in my Prescription Drug cost on Medicare D (which Medicare cannot regulate by law) This I think should change, however I've already written about that. I also benefited by the preventive care provisions on my mammogram and colonoscopy. And many people not on Medicare are starting to benefit too. Examples are children with pre-existing conditions not being denied care and young adults staying on their parent's health plans.

This is a very complex plan trying to start to fix our nation's very complex problem. People who feel they have great health care coverage may not see the need until their costs skyrocket, or have to use it and see what's it's lacking.

Now the future of our nations health care is in the hands of the nine judges on the supreme court. I think we with disabilities and prior existing conditions all need to advocate and to pray!

ellie

 

03/14/12

Permalink 05:44:00 pm, by eleanor Email , 525 words   English (US) latin1
Categories: Advocacy, my life, information

MULTIPLE SCLEROSIS AWARENESS WEEK

March 12-18, 2012

I always like to do something for Multiple Sclerosis Awareness Week. This year I  sent in to my local newspaper The Saratogian an article I wrote to be submitted to their Readers View section. The following is the article I submitted.

As a retired physical therapist living with multiple sclerosis over many decades I have found that most people do not understand the disease and how it affects people who have it.

I find this very understandable as it is a complicated disease that affects each person differently. You may know a person that has trouble walking or someone else who uses a cane, walker or wheelchair. Or maybe it's a person who has vision or cognition problems. Or all of those problems and more.

We can seem to be very inconsistent from day to day. Yet at another time we may not be doing well at all for weeks (an exacerbation) then the next time you see us were doing much better (a remission). It can be confusing but it's hard on us too. We do not like not being able to control what's happening with our body. But we do try to do what we can when were able.

Sadly most people with MS will become more disabled over time. It's a lifelong disease that's first diagnosed in people between the ages of 20 and 50. Women are affected more than men by a 2 to 1 ratio. And it lasts for the rest of a person's life.

MS is an auto- immune disease where the white cells attack the protective covering (myelin) over the nerves in the Central Nervous System (the Brain and Spinal Cord). It disrupts the normal conduction of energy to the peripheral nerves which activate the muscles. The attack on the nerve insulation may be one for vision, cognition, bladder or anywhere on the motor or sensory nerves. Usually speech, swallowing and bowel problems come later as the disease advances. However, fatigue as well as pain is present in most people with MS from the beginning no matter where it's located.

A person with MS can eventually be limited in their working ability due to fatigue or many of their other symptoms. As MS is also a very expensive disease this is a double whammy. Assistive equipment and adaptations in their home as disability advances must be purchased and made to increase their function. Health care costs including newly effective prescription drugs can also increase. Yet Hospital admissions for MS have decreased thanks to the new drugs especially the Biologic Interferon's.

Unfortunately, these drugs can be very expensive especially the Biologic Interferon's which are most important to use if you have relapses. The average cost of one of these drugs is $41,000 a year.

Now of course this is where the type of Health Insurance that you have makes all the difference in world. And having a prior health condition preventing you from getting insurance is a killer. Unfortunately not everybody who has MS has great health insurance and can afford to have these drugs to help slow down relapses and progression of the disabling effects of MS. Hopefully this can be changed.

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Ellie’s Rules for Coping Well with MS and Disability
Get Knowledge
Admit What's Happening
Set a Functional Goal
Adapt Lifestyle
Attitude is Everything
Be an Advocate
Live Life to the Fullest
Laugh Often
Then All You Need is Love
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