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Permalink 05:57:00 pm, by eleanor Email , 694 words   English (US) latin1
Categories: thoughts, Advocacy


And what role should society play when these things happen? This is a question that is again re-surfacing that must be answered if our capitalist country remains a strong democracy. I am reminded of the 60's when I was strong, active and healthy in my late 20's.  People remember different things about this tumultuous decade. The hippies, Vietnam, riots and marches etc..

I also remember that Civil Rights was becoming a large and immediate issue with the desegregation of schools. But finally the Civil Rights Act was passed in 1964.  This was the beginning of our society's awareness of the lack of civil rights for all of us including the disabled.  Although it took 30 more years for the ADA to pass.

I also remember in 1965 Congress passed Medicare and Medicaid in an amendment to the 1935 Social Security Act (the year I was born). This and the Civil Rights Act like Social Security 30 years before had been a long time coming.  There were people on both sides of the issue that felt strongly for and against.  Obviously more supported the Acts and Amendments and they passed.

If you follow the news you are aware that they are still controversial with some people as is the Health Care Reform recently passed. I myself am a very strong advocate of universal Health Care with manageable costs.

In the 60's I was front and center to see the needs of many of the people in our country. I was working for much of that time as a Home Care Physical Therapist in Brooklyn N.Y.  I lived in one of the best areas. I also saw patients in their homes there as well as the worst areas like Bedford Stuyvesant.

What I saw formed my thinking of the need for constant vigilance to protect the people who had bad things happen and then became one of our vulnerable. And I realized that in order for society to play a meaningful role, government had to be involved. I welcomed the passage of both of these Acts as I did 30 years later when the ADA passed.

We have made a lot of progress in both health care and civil rights since the sixties.  But unfortunately slowly we have lost economic equality. The rich are getting much, much richer and have increased their influence and power on our government. While the rest of us (90%) are losing. In the current recession all the past decades of  bad eggs are coming  home to roost.

We have very high levels of unemployment (where are the jobs ?) this is only going to foster tremendous problems down the line. Will we have a lost a whole generation? What about all the hope the disabled community was beginning to have?  We were just beginning to establish our civil rights as natural to our fellow citizens.

Below is a poem by Jane Mayhall that was published in a book "GIVERS AND TAKERS 2"  in 1966.    It was relevant then and is relevant now.


All evaporated, nobody real.

Yesterday was not so much better.

Then I didn't try or exert. 

When good- looking couple

made nasty fun of cripples,

I thought," oh well, the sins

of the world."  I was an easy-going

snob.  And the couple seemed to me

no more capable than worms,

I  know now, they rule the ramparts

of the sky.


To evaporate is to die.

The standards are collapsed.

Jiggling  puppets of wickedness

flay their victims, victims

flay their gods.

We are dawdling and obscene,

Slaves to catastrophism.

(Nothing was intrinsic but desire.)

What is the difference to me ?

My muscles ache like foam

bristling on the waters.  Disillusion,

emptiness conjoin.

But I feel a raging impulse:

"Listen to me, world.  Now you

Must change. "

   And change we can. We can do so much better.  We have to think beyond ourselves. We have to accept our responsibilities to our fellow citizens. We must remember we were once a society. Most of us once felt that we are all in this together. I hope and pray we can do this again.                   ellie



         A female Black Swallowtail Butterfly  visits our garden for sustenance.


Permalink 07:57:00 am, by eleanor Email , 1409 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, Gardening


At least for those of us with multiple sclerosis.  You feel sluggish, don't move as fast and tire easily when it's really hot and humid. That's one of the downsides of having MS which gives you a damaged Central Nervous System. Heat causes slowing of the conduction of the nerve impulses bringing your functioning level down to a crawl or a full stop. In fact before we had Spinal Taps and MRI's etc. Doctors would put their patients into a hot bath or container to see if it produced the slowing ,spasticity etc. to find a diagnosis.

  I was reminded of this when I left church last Sunday morning.  We  were starting a heat spell here in upstate New York.  I realize that it's nothing like what they have in the mid country, south and west but it for us it's an eye opener.

  The  night before I  used my wheelchair in the house as the fatigue from the heat was getting to me. But when I went to Church the next morning I used my wheeled walker as I knew my husband could  drop me off in front of the church. My latest drug AMPYRA helps me to walk a longer distance so I am using my wheeled walker with a cane for going to Church as well as some other places.

However, as I left the church the blast of hot air hit me. There was no lemonade,cookies or chatting for me. There was also no walking.  As my husband had parked not that far away I sat on my walker and pushed myself slowly backward resting in the few shady areas as my husband guided me.  This was not a new situation but it seems that heat wipes out Amprya's help.

Many people were surprised that all of a sudden I couldn't walk. That's because they don't understand how and why heat and high humidity  affects people with MS so much. There is a big difference in temperature (10-30 degrees) between being in a shady area on a sunny day, a concrete sidewalk, on the street or worst of all a parking lot in the mall.  

I love being outdoors. If you've read my prior blogs  you know how much I love to be out in my garden. I use ice packs, have little shady nooks and get up and out early to garden.P1000176P1000191


Down to the Rose Vine Here I am training a rose vine to climb up my apple tree











I also have a special shady

retreat where I read by

resting on my lounge

in between gardening.

  P1000276My son's have put in a small waterfall and pond which is just so restful. I have many plants that I've used in that area but am finding new ones that love being near water. 


And then when it's really hot I go back into my air-conditioned  home and work on my computer or do projects in the house.

Now this is what I do at 76 and of course retired. When I was young and working and raising a family I gradually gave up my own special interests as I was too tired after my obligations. Gardening was one that eventually went. If I did it before work- work would suffer, if after in the heat ..well there was no garden really except for what my husband did. It was the same with other activities I loved too. I was a good tennis player and we used to play in the summer after work but I found that my legs just stuck to the court.  I would pour ice water over myself and ice my neck,wrists etc. but my timing was off and I played terribly. So eventually I had to give it up and just play tennis in the summer on a cool Saturday morning. I went swimming after work while my husband played tennis. I did the same thing for biking when I just couldn't go the distance up the hill when it was warm. For a while the mountain bike I bought to replace my regular 12 speed helped but even in the spring or fall when it was cooler that went too. It was the same way with hiking. Hiking had to be done very early in the morning and when it was cool . My last hike should have been easy (Sleeping Beauty-around Lake George) it was a killer.

And of course living in Saratoga Springs which is a resort town there are a lot of activities in the summer. I have been increasingly missing out on these days to my increasing intolerance to heat and humidity.  But I do try to adapt and go where activities are inside and air conditioned or outside when it's good.

Adapting has been something I've been doing for years. When I was working as a Physical Therapist I remember getting stuck having to walk uphill to get to a patient's house on a day that turned warmer than I expected. That's when I started planning Home Care visits at times of the day when the sun was not over entrances to homes. Especially if it meant walking over non shaded concrete or asphalt.  And of course I became extra careful where I parked my car and used cardboard inserts on it's windows.

My husband loved his Mustang Convertible and we used it all the time to go places with "the top down".  It took a while for my husband to adjust to my need for the top up and air-conditioning when we were stuck in city traffic on a hot day. I would be falling out of the car not even able to stand up never mind speak when we stopped for something. But after a while he did adapt. And it certainly wasn't the end of the world. And now we use a minivan so we can put my electric wheelchair in the back and we can still can go places. That also was not the end of the world.

There are so many things I would still love to do. But I have to content myself with only  some of them depending on my MS and the weather. I can no longer play tennis, bike, hike, go dancing, walk downtown etc. even in good weather.

But with our normal summer weather if I get up early I can still garden. My son's have helped me so much to adapt our yard so I can garden. I can't thank them enough.

 However this summer has stressed a lot of my plans to adapt. I don't know how  people with MS who live in the South and Midwest cope with very high heat and humidity. Are they able to do things outside! Or is summer mostly spent inside in air-conditioning?

I have found that the strategies that I've developed for coping with hot days in the summer are no longer sufficient. The increasing amount of the days with very high temperatures and high humidity are totally whipping me. This week I spent three days partly in bed and I never left the house. I have found that often by the end of the day I can't walk and I am just whipped and back in my wheelchair.

I tend to be a doer not a viewer so this is hard for me. But when you have that awful heat and humidity it really reinforces that I should be more of a viewer and less of a doer.

So the number one change I've decided to make is to use my electric wheelchair even when I can walk some when I go outside in the morning using my ice packs and all the other things. That way I'll save my energy for my gardening and other activities too . The 2nd change will also be hard for me. But I will ask more often for help when I'm over extending myself. And thirdly I will not give up my gardening -I'll just find new ways of adapting.

My oldest son is helping me to be more of a viewer by reviewing with me how  to use our newest camera.  I am going to take it out with me in the morning and catch all the growth and beauty of our garden and the birds and butterfly that visit.

So expect to see more pictures of my garden on my blog to lift my spirits and hopefully yours too.



Permalink 06:22:00 pm, by eleanor Email , 920 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, Gardening


I was in my garden the other day when a neighbor came around.  I had been down trimming off the dead Fairy Roses which had bloomed so luxuriously on the fence in the area where my raised lettuce bed is.  She remarked all this is so nice and as it was a very good day for me I didn't even think about my walker which I had in that area and just walked up the ramp to see her.

She commented of course on how well I was doing. I then mentioned about the new drug Ampyra my Neuro had added to my medications I take for MS. I explained that it allowed my nerve impulses to be carried over damaged myelin sheath thus allowing me to walk further etc. She then commented that it was such a shame that my sons had put in ramps for me. She went on to say that of course the ramp going like a bridge across the lawn area (which is now my son's vegetable garden) probably was ok in that you could look over and see the garden.  But she felt it was such a shame that I also had that other ramp.

This"other ramp" is the ramp that I've used with my walker and wheelchair to get down to my raised salad bed and to go out to the side of the house and out front when my walking was down.



I made no comment as I was shocked and puzzled that she would say such a thing.  Did she think I was cured and would no longer need them? Or could she see them from her upper floor windows and had been offended by them?  It was especially shocking as she always asks how I am to my family members and has stated she knows all about MS.

The morning she popped by was a very good day for me MS- wise and the weather was cool with low humidity. If, it was not a good MS day for me, hot or in the afternoon I would have been tired and used my walker back up the ramp. I might also have had to sit on it's seat and go backwards pushing and pulling  myself back was up the ramp. Or if I was really not good that day I would be using my electric wheelchair.

The wheelchair and ramps have allowed me to function at a higher level doing what I want to do. Like helping my son's painting our apt. house next door. Obviously I'm not going up on a ladder or scaffolding to do a big job.  However going down the side ramp to the side of our house I can paint the screen door if it's set up for me to manage it. And they have done that with an enclosure to shade the area. I plan to do the storm window for them too. I'm part of the family I do what I can.


  But I think the biggest thing is even if I was cured and no longer needed them I would never say it was a shame they put them in. I feel they have saved me!

  My backyard has been over time adapted for me with ramps ,raised beds, tall containers and a tall raised salad garden bed. This  has enabled me to do something that I love and which is very good for me. I was able to get out in the backyard and  garden. Without it I couldn't do it even today now that I'm better. And I would like back all those wasted years before we did adapt the back yard .

This episode reminded me again that people really don't understand.  What got me was that this is a person who seem to be so caring and supposedly knew all about MS and what I was going through.  But obviously she knew nothing as that was a very hurtful thing to say.

This is one of the frustrations of having MS you never know. So like a good former Girl Scout I have learned the best way to cope with this is "to be prepared ". You can have a bad MS day that turns into a good MS day. Or visa -versa.  So I try to listen to my body and choose the appropriate assistive device how I pace myself and rest when needed.

Actually my family can tell by what I choose to use how my walking is that day.  And if I have a lot of physical work to do I have no problem using my electric wheelchair to allow my energy to go to the project not to walking ,carrying things etc. Of course I also use my wheelchair when I go out for a long day or a long distance of walking.

And taking this further to a more universal theme with MS the inconsistency of our physical well being can be frustrating and confusing to others as well as ourselves. With our relapses, remissions, heat, fatigue and stress affecting us so strongly how can we be consistent?

We daily have to organize our life to live to our full capacity knowing that we live with a progressive disease.  Most definitely we can not let ourselves be distracted by thoughtless people.

Coincidently I just received an e-mail on the 2nd part of the MS Society's 7 part wellness program . The next one is on Maximize Mobility, Achieve Independence


Go for the full life !   ellie


Permalink 04:48:00 pm, by eleanor Email , 684 words   English (US) latin1
Categories: thoughts, The Law, Advocacy


President Obama recognizing that since the Olmstead ruling in 1999 much progress has been made but much more needs to be done stated.

"The landmark Olmstead Case  affirmed the rights of Americans with disabilities to live independently," said President Obama "On this anniversary, let's recommit ourselves to building on the promise of Olmstead by working to end all forms of discrimination and uphold the rights of Americans with disabilities and all Americans"


Lois Curtis one of the original plaintiffs in Olmstead v.L.C

presents President Obama with a gift of one of her original paintings

"Girl in Orange Dress",


On June 22,1999 the United States Supreme decision on Olmstead v.L.C. changed positively the lives of many people with disabilities.

The ruling stated that unjustified segregation of persons with disabilities constitutes discrimination in violation of title 11 of the Americans with Disabilities Act.

Lois Curtis, 31 and Elaine Wilson, 47, were the two women in the the decision to reach the Supreme Court. These two women had mental disabilities and  were hospitalized repeatedly over two decades with periodic discharges to inappropriate settings like a homeless shelter and hospitals. Their last hospitalization was voluntarily at the State run Georgia Regional Hospital for rehabilitation. The mental health professionals there stated that each was ready to move to a community based program. However it was only after a legal aid Attorney in Atlanta Georgia brought a lawsuit were they moved to a small group home .

Let's be honest Olmstead v. L.C.  would not have been needed had society accepted  fully the ADA Law which was passed prior to Olmstead vs. L.C.  In fact I happen to think that most American's are not even aware of Olmstead today and more importantly why it was needed.

By now people just take the architectural changes like ramps and parking permits for granted. But there are still builders and employers and States who have yet to come around to seeing the equality never mind the humanity in following the ADA .

When the ADA was being discussed in the legislature one of the main reasons for enactment was the increased awareness that society was segregating people with disabilities and treating them differently.  And treating them differently in a very degrading way.

Representative Ron Dellums during the final passage of the ADA stated that he had seen mental institutions. He stated that he had looked into the vegetative eye's of its inmates in their sterile environments. He also stated that we were allowing them to rot in their beds. "These living dead are our imprisoned Americans with disabilities".   And "Getting people .. out of institutions" was specifically stated by Senator Tom Harkin. 

Two years ago on the 10th anniversary of Olmstead President Obama stated that even though great strides had been made we needed to do more. There were very long waiting lists for people with disabilities to get into an Independent Living Center. Therefore he proclaimed 2009 the year of Community Living.  This was a new  effort to assist Americans with disabilities.  And at that time he provided over $140 million in the Recovery Act funding for Independent Living Centers across the country.

Although the big push to pass Olmstead was to get people with disabilities out of  these terrible institutions into group homes it effects every person with a disability . For the goal is equal rights for all people with disabilities. To allow them to live and function in an environment that's the least restrictive, to be able to live as independently as possible and be able to interact with the non-disabled in the community.

"To live in my own Home, well I feel very grateful to all the people who helped me to get my own Home and I feel very good about my home.  I have a great life and I can make my own decisions.  And I can handle my own business, and I feel good about myself."

Elaine Wilson, from an interview

With the current economic situation those of us who are interested in seeing the civil rights and equality of people with disabilities maintained and bettered will have to keep ourselves well informed. 



Permalink 10:36:00 am, by eleanor Email , 121 words   English (US) latin1
Categories: thoughts, Advocacy, adapting activities, Adaptive Sports


From June 24,2011-July 4,2011 our Special Olympic athletes from all over the world have gathered in Athens Greece for the Summer Games. This year is the 13th Special Olympics World Games which are held every 2 years.  7000 Special Olympic athletes from 180 countries are competing in 22 different sports.

ESPN- 3 has shown some events and you can go on to see replays of the opening ceremonies as well as other events. This is good to know if your like me and missed many of the events.

However on July 4th at 1p.m. EST Closing ceremonies will air on ESPN-3.

I will be following up on more events that were held on a future blog.

Don't miss out on seeing this. These events are inspiring!       ellie

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