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05/28/14

Permalink 12:43:00 pm, by eleanor Email , 134 words   English (US) latin1
Categories: Announcements, Advocacy, Thoughts

HAPPY WORLD MS DAY

World MS Day 2014

Today May 28 is World MS Day.  Today is a day for people with MS  to reflect on their life experiences and what they appreciate has gone so well and what they would wish could have gone so much better.

So today people with Multiple Sclerosis around the world are sending wishes from their heart what they wish could happen for every young adult who will live with MS the rest of their lives. 

My wish is that people with MS could live in an environment that is understanding and allows them to adapt to modify their environment. That way they too with MS limitations can use what they have to better their life conditions and have a happy long life.For more information on World MS Day and other people's wishes go to : http://worldmsday.msif.org/en#home

ellie

03/06/14

Permalink 11:22:00 am, by eleanor Email , 138 words   English (US) latin1
Categories: thoughts, Paralympics, Adaptive Sports

THE WINTER PARALYMPICS OF 2014

 

SOCHI, RUSSIA - MARCH 05: The Paralympic Agitos at sunset in the Olympic Park ahead of the 2014 Paralympic Winter Games on March 5, 2014 in Sochi, Russia. (Photo by Justin Setterfield/Getty Images

This Friday March 7, the opening ceremony starts the events which will take place from March 7 to 16.  Here in the USA NBC will carry 27 hours of live coverage.The Opening Ceremony  for the 700 athletes with a physical or visual impairment from 45 countries will be covered at 11a.m. on NBCSN.

NBC will also cover all five of the Paralympic winter sports with NBCSN providing 48 of the 52 hours For more information on the events and the NBC schedule for us in the USA go to . .

http://www.teamusa.org/News/2014/February/19/Television-Schedule-Set-For-Sochi-2014-Paralympic-Winter-Games

Live stream is available at Team USA.org

http://www.teamusa.org/News/2014/February/19/Television-Schedule-Set-For-Sochi-2014-Paralympic-Winter-Games

And also at Paralympic.org's You Tube channel.

Don't miss these events. If your suffering from low spirits due to our crazy winter just 15 minutes of seeing these amazing athletes overcome their disability will bring instant relief. And you'll be caught up in the spirit of the Paralympics.

ellie

Stephen Lawler

02/23/14

Permalink 12:04:00 pm, by eleanor Email , 1269 words   English (US) latin1
Categories: thoughts, The Law, Advocacy, Technology

DOES INCOME INEQUALITY PRODUCE WIDESPREAD INEQUALITY AND POOR EMPLOYMENT OPPORTUNITY FOR PEOPLE WITH A DISABILITY ?

Does it? And if that is so why and what are the ramifications of it?

Token Loss

by Kay Ryan

TokenLoss

The other night I woke up in the middle of the night and realized I had had the strangest dream. I dreamt that there were partly robotic mechanized dragons walking down the street looking in the windows of the houses. And looking up I also saw some smaller dragons flying around them . They seem to have Logos or some kind of writing on their sides that I couldn't make out and then I woke up.

It seemed so real that I got up to look out the window and of course there was nothing there. But, I kept thinking about it later in the day and in the next few days too.  I figured that it must have related to what was bothering me lately.  

I receive a daily poem from American Poets.  A few days earlier the above poem had started me thinking. I put it in a circle around the dragon because the author had felt that it belonged in a circle around a dragon.

Looking for a meaning In my bizarre dream I thought maybe I was becoming like a dragon holding on to everything too tightly. I wasn't letting go of activities and it was time to let go of due to the progression of my MS. 

But on further thought I think that it must have been about my concern of inequality increasing in the United States and the lack of mobility that is occurring  for individuals. And the devastation to our democracy if we lose our middle class. 

I was born in the depression and grew up in World War ll, Korea and the Cold War . But when I graduated college and came onto the workforce in the late fifties and early sixties as a Physical Therapist it was a time that everybody expected their children would do better. I expected that I would get married eventually and I wouldn't work or only work part time when our children were young.

The culture was not like it is today when most family's economy depends on 2 incomes. In my first position I had 10 days of sick time and one month vacation. That's also a contrast with workers today.  Now being a woman I was not paid equally with my male Physical Therapists that's better today but not fully. I believe its 76% today.

Our country was not perfect but there was a change for the better in the wind.  And there were expectations that you could do well if you worked hard. After the veterans returned from WW ll there was a big increase in college graduation thanks to the GI Bill. Job security was quite universal. People stayed with a company and were promoted upward too. Health care was increasingly covered with labor organizations growing.

Under President Nixon wage limits were started so Health Care and Pensions were ways of sharing productivity gains. There was a universal nationalistic feeling that carried over from the depression and World War II that we were a society to be proud of. In fact when the USSR sent sputnik up we rallied and increased math and science standards in our schools . And of course NASA was formed and we were the first to the moon. We had a can do attitude.

I remember being on the subway in NYC when the news of Sputnik was in all the newspapers. And the can do attitude was overwhelming.

But this was not a time that prosperity was shared by all. And as increased awareness of this came about we demanded a change. A change to not exclude any American from equal opportunity.

And gradually with much shame and distress our Congress  passed Civil Rights Legislation. Medicare and Medicaid were also added to Social Security which had passed in 1935. Poverty programs were started and finally the ADA was passed in 1994. And at long last a growing awareness of equal rights including equal pay for women. And now homosexuals are progressing on their historic journey to equal rights.

But with the current recession exacerbating the slow regression of the average person's wages and opportunity for employment, the ability to climb up the ladder of  income and social status is becoming apparent. And more people could see the progress that we've gained for the average American including those with disabilities stalling and actually declining.

People with disabilities entering the workforce are now able to take advantage of  the new technology. With the advance in wheelchairs, vision and hearing aids along with computers their entry was so natural. But with this job market the last to enter can be the first to leave.

 Currently 1 in 5 Americans have a disability and 51% of Americans have a friend or family member with a disability. However, 70% of working-age Americans with disabilities are outside of the workforce (compared to 28% of those without disabilities). This statistic has remained unchanged in the 24 years since the passage of the Americans with Disabilities Act (ADA) of 1990.

Of those working adults nearly 1/3 earn an income below the poverty level. People with disabilities constitute the nation's largest minority group, and the only group that any of us can become a member of at any time. And due to our advances in medicine people are living with disabilities not dying.

Therefore the number of Americans with disabilities is increasing. In fact from 1990 to 2000 the increase was  25% . But the number of jobs is decreasing and especially the number of good jobs that Americans once had.

It looks like we made a very big mistake in this country with NAFTA and the laws by congress for corporations to be able to send jobs overseas as well as hiding their profits there too! Workers were already dealing with technology taking their jobs. And also the latest Wall Street philosophy brings it to a triple dynamo!

Over the past 1-2 decades big corporations are also using the false idea that their only requirement is to make profits for their executives and stockholders. Sharing gains in a company's business by the labor of it's employees no longer exists for many of the big corporations. In fact many don't pay a wage to allow people to rise above poverty and they encourage their employees to apply for food stamps and Medicaid.

In an article by Mark Schmitt in the New Republic he mentions the  Princeton economist Angus Deaton who putt in the conclusion of his recent book, The Great Escape, "The political equality that is required by democracy is always under threat from economic inequality, and the more extreme the economic inequality, the greater the threat to democracy."

http://www.newrepublic.com/article/116285/problems-inequality-debate?wpisrc=nl_wonk

Two-track future imperils global growth. "Globalization has made the world a more equal place, lifting the economic fortunes of billions of poor people over the last quarter century. Here's the rub: At the same time, it has made richer countries more unequal--squeezing the incomes of the poor and the middle class...Branko Milanovic, a former World Bank economist now with the City University of New York, says data from household surveys show that, from 1988 to 2008, real incomes of the poorest 50% in the U.S. grew just 23%. Their counterparts in the bottom 50% in Germany and Japan fared worse, the poorest Japanese seeing their real incomes fall by 2% in real terms. Meanwhile, incomes of the top 1% of Americans grew 113%, a figure that other studies suggest may be an underestimate." Stephen Fidler in The Wall Street Journal.

I still believe in the American philosophy of "Can Do" I'm just waiting for it to happen!

snow rainbow-2

But look..there's a rainbow!!

ellie

01/10/14

Permalink 03:27:00 pm, by eleanor Email , 294 words   English (US) latin1
Categories: my life, exacerbations, Thoughts

DEPRESSION AND MS AND DISABILITY

Gold mask of Agamemnon 

 

Inscribed on a marble column In Greece  dating from around 200 AD, is a haunting short song of four lines composed by Seikilos. The words of the song may be translated as:

While you're alive, shine:

never let your mood decline.

We've a brief span of life to spend:

Time necessitates an end.

It has been close to three months since I wrote my last blog.  In my last blog I mentioned how I had been doing so great and then went into an MS relapse Emotionally I just fell apart.  I've slowly been getting better and now I am really almost back to a level I was pre relapse.  I felt guilty that I was letting my relapse get me down especially at Holiday time.

IMG_20131225_162333 

Thanksgiving  and Christmas were here and I decided I just wanted to have a happy holiday season . So a blog was out as were a super house and Christmas cards. I couldn't even get energy up to think of putting up a Christmas tree. Oh, but when I said, "maybe" my son and  hubby brought home a winner which we all decorated.

IMG_20131229_175501

And then my son's put out the lights on our porch which shone thru the Pampas grass my husband had previously placed in our window boxes.

 

 

 

 

IMG_20131229_175534

Hubby and I went out to a craft store to buy a ribbon so I could to make a bow for the wreath he had made with pampas grass.

They say that people's natural happiness is 50% intrinsic and the rest is situational. But the strongest element for happiness is close ties with people who love you and who you love, no matter what !

Did we all have a Happy Christmas. How could we not have!!

Hope yours was happy too!

ellie

11/16/13

Permalink 10:54:00 am, by eleanor Email , 1097 words   English (US) latin1
Categories: my life, exacerbations, Thoughts, Adapting Activities, information

REBALANCING MY LIFE AS I AGE WITH MS

 

" People are always blaming their circumstances for what they are. I don't believe in circumstances.The people who get on in this world are the people who get up and look for the circumstances they want and if they can't find them, make them."

George Bernard Shaw

Balance has always been a problem in my life. Based mostly by having multiple sclerosis in the relapsing-remitting form for years before I had a definite diagnosis. In those early years I was afraid something might be wrong and sometimes I had doctors tell what I wanted to hear "that nothing was seriously wrong".

When I was finally diagnosed the neurologist was amazed that I was able to adapt and just ignore my symptoms for so long . But when the diagnosis was finally made it made sense to me and it was a relief.  Remembering those times with the feverless flu's dragging myself around clumsily and becoming so incompetent.  I also was constantly beating myself up for being so lazy. Then I would become myself again full of energy taking on too much feeling I'd just been lazy, unorganized and undisciplined. And I would vow that I'd  never let that happen again. 

So I looked for sources of inspiration to solve this problem of mine. I read many books searching for counsel. There is one great book that I still have on my book shelves that I kept returning to.

The book is "Balance" by Joel and Michelle Levy.

Why Balance? For a chronic problem of ups and downs I felt the need to center myself. And for many decades after my diagnosis I still have felt the need to go back and re-center myself. Why the continuing need to re-center? It's because the fundamental nature of my body with MS means relapses and remissions and over time a gradual steady loss of functional ability. And change requires adapting to my new body limits.

Some of these changes were positive when advances in MS care came into my life. When the drugs like Betaseron for MS first came on the market there was increased hope for a better life. And when I started taking it I did have shorter relapses. But fatigue continued so I was put on Provigel to help. And it did help some of the fatigue. But after many years on  Betaseron it became much less effective and I started spending much more time in a wheelchair.

I changed  my Neurologist and he changed me to Rebif (a Beta 1A )  and soon added monthly low dose Methelpredizone IV. The improvement was amazing. !! This caused a great change in my life.

In fact this was the best 3 years I had had for a long time!! I started my garden and other projects and I went out more. I went back to my walker, cane or crutch. My wheelchair was for long walking excursions only.  But gradually after a few years it became less effective and a decision was made as I was also a Type 2 diabetic (methlpredisone can increase blood sugar levels)  and I wasn't getting the amount of response from it that warranted risking any increase in my blood sugar levels.  This had a very negative effect on my function. My walking etc. decreased dramatically.

But around this time the drug Ampyra (a potassium channel blocker) which increases walking ability by allowing the electric current to flow better over damaged myelin sheaths covering the nerves was put on the market. I was put on this drug and my walking ability increased again . It was not the same as when I was on methlprednisone however I was able to walk a longer distance with it then without it.. This is a very meaningful event for a person with MS who has a much lower functional level.

My son's had over the years made many adaptations to our home to allow me to be as safely independent as possible. So when I was in a bad time I could still do some things I wanted.

They widened  the doorways to allow me to push my wheelchair thru easily, moved my bedroom downstairs and added a downstairs fuller bath with a hand held shower,seat and safety bars. And of course ramps to go outside and raised beds to garden in.  I also had purchased an electric wheel chair to be independent when I was out and about or when my walking ability was down.

Right now I am only on two MS drugs, Ampyra and Rebif (Provigil is no longer covered by my insurance and it's too expensive). My walking and functional level is down but it's been consistent, which makes it manageable.

I know how far I can usually walk and can manage my energy level quite a bit by resting ahead of events and by taking naps. This gave me confidence to plan ahead to do things I wanted to do.

In September I took a week trip with my husband to visit my sister and her family in Virginia. A few weeks later I had a nice visit with my niece and her newborn son. Then in the beginning of October a couple we had been friends with for years came for a wonderful visit.

I was becoming so social! I was able to go out to two charity events and felt secure on my managing this MS fatigue etc. I made plans to have my nephew and niece come to visit for a day.  Oh I was feeling so in control !!

Then I collapsed. My Fall annual relapse did come after all. And per usual as I start to get better it's 2 steps back one step forward. I'm tired of these relapses.

I'm starting to wish I had straight secondary progressive with no relapses because I don't end up ahead anyway when I remit. I have no control over that just as I have no control on how well I remyelinate (heal) after an attack.  But I do have control on how I handle all this!

This is why at this time re-centering is needed and why I have re-opened my book on balance. Going thru it and following their advice and thinking has always helped me thru  bad change. As my journey thru life aging beyond my current 78 with MS continues I want to be in control. I want any changes that I need to be based on my priorities of what's important to me !

Below is a link to a very good artivle on understanding MS.

Understanding MS with it's unseen symptoms better

ellie

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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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