Living Well With MS & Disabilities: Ellie's Blog

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

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.

                                                                                                                               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.

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

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.

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!

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

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!!

   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

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.

I was  looking out my front window the other day and remembering  the Run For The Special Olympics that occurs down my street every July. Then my mind traveled to all the runs, bike rides, walks, hikes and so many other events to raise money for research to push knowledge ahead for cures for so many diseases. And also to help those who are dealing with disability from the disease or condition to manage it.

Being a resort town (Saratoga Springs) with a famous race track we have an extra amount of events in the summer months. But a lot happens here in the colder months to help people to manage their disabilities too.

We do not as yet have the knowledge to cure most diseases and conditions that cause disabilities.  Hopefully in the future we'll all be able to celebrate when cures are found. But until that happens there is much we can do to help those with disabilities to lead a fuller life at home and out in the community.

In December of 2011 our local State Senator Roy McDonald with our Congressman Chris Gibson supported a Disability Awareness Day  at our local  Mall in Wilton. On the Mailer that was sent to our homes there was a message from Senator Roy McDonald.  He is the joint chairman of the New York State Senate committee for mental health and developmental disabilities. In the mailer he stated that " taking care of individuals with disabilities and helping them to persevere is the most important responsibility for elected officials."

The event used one corridor of our local Wilton Mall through the co-operation of the management of Wilton Mall . The corridor was filled with many long tables which seated people from 36 local non-profit organizations whose mission was to assist those with specific disabilities. The atmosphere was open, relaxed and friendly . This enhanced the ability of visitors  (those with disabilities, parents, spouses, children and other's ) to talk to the appropriate organization's representative about their concerns and receive help and advice as needed.

Both State Senator McDonald and Congressman Gifford were present along with NY state Assemblyman Tony Jordan.  Wilton Supervisors Art Johnson and Matthew Veitch were there also to answer questions and offer help from the Federal, State and Town perspective.

For  someone like myself who wanted the opportunity to talk to the many  organizations who provide services to individuals with disabilities it was informative and re-assuring.

I went with my husband who also wanted to do a story on it for the Wilton and Geyser-Milton Reports. to read his report Click Here

When I saw of all the people sitting there to help other people I was really touched and felt so upbeat about our society.  Then I went down the corridor to talk to each and every one of them. And as I did I felt in so many ways that I knew these people who I had never met. Being a Physical Therapist I was in their world indirectly for many years.

The first person I spoke to was a young disabled (due to brain injury) veteran. A Wounded Warrior. He and his wife were there representing STRIDE an adaptive sports program for the disabled also proudly connected with the Wounded Warrior Disabled Sports Project. If you have never watched the Paralympics or events that organizations are doing with adaptive sports make it a priority to do so.

The next organization that I spoke to was the Autism Society of the greater capital region. Their representatives were also very helpful in explaining their mission. I learned a lot of information that I did not know. And one of the facts was that as many as 1.5 million Americans today are believed to have some form of autism and unfortunately it's on the rise. The statistics from the U.S. Dept. of Education has it growing at a rate of 10 to 17% per year.  As yet there is no definite cause of autism but of course research is ongoing.

I went on to the next one and it was the March of Dimes.  The organization that we all know. It's mission is to improve the health of mothers and babies. But it also reminded me that there was once a disabling disease that research did not find a cure for but did find a vaccine to prevent the disease.  And that disease Polio (Infantile Paralysis) scared into action both parents and children especially after the large epidemic here in 1916.

Like autism today it was growing and there were millions of children and adults who  contracted polio that were living with the paralysis that it caused. Some were still in iron lungs others had weakened legs or arms and the country was up in arms to do something about it.

The March of Dimes (The National Foundation for Infantile Paralysis ) was founded by FDR (Franklin Delano Roosevelt) our 32'nd President in 1935.  President Roosevelt had benefited from the acute care and the rehabilitation that was available at the time after he contracted Polio in 1921 when he was 39.  He established the March of Dimes to (1) research for a cure (2) educate and establish nationwide facilities for the best acute care and (3) establish rehabilitation centers to bring people with polio back to their communities functioning at their highest level.

I remember when I was young every where we went the boxes for dimes were being filled by all who saw one. We American's were gladly giving those dimes for research for a cure. But those dimes and other monies were also being used to directly help those through the acute crisis stage and rehabilitation too. This was the advent of Rehabilitation which then benefitted those Vets returning from WW II and continues today. 

Polio is one of the few diseases that we were able to find a vaccination to prevent it. But it was not a cure. Those that had already contracted Polio were not helped by it. Thinking about the commitment of government research, the private sector and all those dimes ordinary citizens gave gives hope that there will be more vaccines to prevent diseases or cures for these disabling diseases. In fact we have continued to be pro-active about diseases and increasingly about disability since Polio.  

But just as research is critical, equally important is the continued commitment both public and private for ensuring that those with disabilities have every opportunity to lead a full. 

And this was what the 38 organizations were doing for their respective clientele. Organizations covering people from birth thru childhood to adult and seniors. They were filling the need for support on the local level.

Having disabilities, having a child or spouse or parent with a disabling condition is difficult. And families, relatives or close friends giving help is essential.  But there are needs they cannot provide and this is what these organizations do. They help fill the gap with information and support that is so important. Just as the State and Federal Government has their niche which only they can do. Think of the ADA and all the other laws regarding education and the disabled.  As well as Medicaid, Medicare  and Social Security Disability Insurance.

This is what a great society is all about to me. Caring for those who have medical problems and disabilities on all the many different levels of society.  Starting with the person and the family but moving out as more support is needed. And of course finding what is needed is there.

ellie