I believe that if we feel strongly about something we have a responsibility to advocate for it. I do most of my advocacy online. However occasionally I do write a letter or make some phone calls. I have many issues I feel strongly about. But I advocate only for those that are closest to my heart felt concerns. These of course are for the disabled,multiple sclerosis, senior citizens and young children. I leave the environment,education,the war and many others issues to the other members of my family.
As the Obama Administration and the 111th Congress prepare to convene, they have given us an early opportunity to advocate for what we think is most important in Health Care. The incoming Administration wants us to engage our family and friends in a dialogue about comprehensive health care reform. They advocated forming groups to discuss the issue in a very organized comprehensive way. However, if you could not form a group you were invited to send in your own ideas and concerns regarding comprehensive Health Care issues. I would not have been able to form a group but I did want to send my ideas in to advocate for them.
All the components of my letter came together this Thanksgiving, however I was extra tired in the month of December due to my MS and a bad cold. This caused me to delay my advocacy letter. But I finally did get a letter off to "change.gov" President-elect Obama's website. I went through the MS society's web site connection but I could have gone just directly to "change.gov". When I sent it I found out I had missed the deadline by two days. But with a sigh of relief after all my thought and work I appreciatively read their note that they would read late entry's eventually and include them also. Below is what I sent to change.gov on health issues.
We had a big old fashioned Thanksgiving this year. Three generations came from the south, east and west to upstate New York. We were democrats, republicans and independents. Our larger extended family which is spread across the United States ranges in age from 2 to 89. But this Thanksgiving we ranged from 18 to 78. As we all have very strong opinions when conversation turned to Health Care under the Democrats I was a little nervous.
Surprisingly, we were all in total agreement that we had to get rid of the excessive profit in Health Care. There was also total agreement that we should have an independent nonprofit agency run the Health Care in our country. However there was mixed feelings about government total control of universal Health Care. But all agreed strongly that everybody in the United States should have healthcare from birth to death. And it should be fair! It should not cost more where you live or if you have preexisting conditions. When the topic of electronic records, prescription writing etc. came up we were all puzzled why it was taking so long. The thing is we know we are spending a fortune in Iraq. Why can't we spend it here on our own Health Care in this country?
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. "o 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
This is a question that I am I asking myself lately . We live on a tree lined street in Saratoga Springs . Most of the homes were built in the late eighteen hundreds to early nineteen hundreds. All of these homes have front porches .These big beautiful trees look great when you drive or bike down the street or walk down the sidewalks .They also provide cooling shade not only for us for porch sitters but for those bikers in the streets and walkers on the sidewalks. Having MS I need shade but I also need interaction with people . This is why maintaining shade on my front porch, the street and sidewalk is so critical not just for the shade but also the interaction with the people going back and forth past my home.
When we moved here 30 plus years ago the trees were mostly older . Except the trees in front of our house. We built full span window boxes on the railings of our wraparound porch. In them we were able to grow geraniums, petunias and Swedish ivy. And we also had sun loving plants in pots on the front and side porch steps .
Over the years the trees in front of our houses have grown up spreading their branches ving us more and more shade.This was fortunate for me having MS. Unfortunately the older trees across the street were dying . Sadly one by one these big beautiful trees had to be cut down. It changed our view dramatically looking across the street while sitting on our front porch. But we were fortunate in that the house's across the street had big beautiful trees and shrubbery around them .
I expected that when we lost those big beautiful maple trees we would also have lost shade on our front porch . But in fact the shade increased. We gradually had to replace our sun loving plants with shade plants. And even though we have German Ivy and hanging begonias flourishing the plants in our window boxes were not. But my biggest concern in the front was a branch from one of the tree's that was hanging so low you almost had to duck to go by it.
So last week when I was awoken by the sound of trucks and chainsaws in front of the house I pulled myself up out of bed and threw on some clothes. I grabbed a container of coffee put it in my cup holder on my electric wheelchair and sped out to my front porch to check it out .The City was taking down a very big beautiful sugar maple tree two houses up. They had removed several dead branches but sadly the tree was past saving. Before they left I asked one of the city workers if they could trim the branch that was so low at the side of our house. As the big truck that had the equipment with the bucket to trim the tree had already left he said he'd try to get them to come back another day .
The next day I was out back on our deck when I heard a commotion of trucks out front . Looking around the side of the house I realized it was the city's trucks. They had come back! In my Electric wheelchair I sped down my back ramp and around the block to the front of my house. There was the city worker that I had spoken to. He said "I said I'd be back and here we are ". I was asked if I was sure I wanted the branch off as I would lose some shade. Knowing that I had a lot of shade at the other end where I sat and on the side I had no hesitation and said yes! But I watched them apprehensively cut higher then I thought they would and the branch come down! They then asked me if I would like them to continue trimming the tree and the other two trees in front of our houses as the branches were pressing on our porch roofs. I said yes please and so he continued and then dropped two dead branches from the tree. That really upset me and I told them" I do not want to lose my trees." They reassured me that the trees were healthy!!
When they finished I thanked them and was very please with how they had done it . That afternoon I went back back out to the porch . And the area where they had trimmed the branch looked so barren.... I thought ,"oh what have I done ?" The big tree they were taking down was already opening up the space at the side of our front porch door. My family and my next door neighbor reassured me that I did the right thing. But it did remind me how much shady trees provide cooling. And having MS heat is my enemy . As everyone with MS knows.
There are all kinds of cooling devices like vests, hats, scarves,bracelets etc. Some are fancier but others are simple like gel crystals In the band of hats . I've used them and they work but they don't continue cooling for long.
That started me thinking about some of my old patients who had no trees around their house's. They hardly ever went outside in the summer. I talked to them about cooling devices and going out early in the day which I do but I never told them to plant a tree or a bush or vines. Of course some of my patients did not live in their own home but even so.
I've always lived with shade tree's and bush's giving me shady areas. In fact right now out back things are really over grown. And I've started thinking about making changes. The biggest change will be in the fall when we will have our large old butternut tree taken down .The tree is dying and has quite a few dead limbs on it. And there's a tree that we had cut down years ago that grew back in our neighbor's yard with large branches leaning on the fence shading our backyard.
To prepare for planning all this in the backyard and where the shade will be I've been checking the internet. I found an interesting site. http://www.epa.gov/hiri/strategies/vegetation.html If you're planning ahead for shade down the road or need to reassess your outdoor activities and shade it's worth looking at even though It's focus is on the environment and saving heating and cooling costs . Of course that's a good thing too!
Meanwhile back to my front porch... my window boxes are doing better . And I put up a large sun loving petunia hanging basket on that barren side of the porch where the branch was cut off ... It looks great! Even though I have to water it and dead head it daily. That's my arm exercises of the day . (Actually my family helps too)
Any suggestions or experiences of your own to share please do !
When I woke up this morning I felt confused. Somehow there seemed to be something I should have remembered or known. I think I had a dream last night. But there was my husband wishing me Happy Birthday with boxes of goodies.
After a few sips of my coffee I started to open the packages. My presents were lovely and thoughtful. But, I was really down, tired and depressed like I was when I went to bed last night.
So after a few morning exercises I went into my bathroom to take my shower. As I was brushing my teeth I looked up to my shelves and there was my green glass fairy perched haughtily on the shelf. Suddenly the dream that I had last night came back to me.
I dreamt that I woke up and there was that fairy sitting on a box on my bed. She wished me a happy 73rd birthday. Stunned I asked her what was in the box? She smiled and said: “Guess.”
This must be a dream, I remembered thinking, so I might as well go for it! “A magic drug to cure me of MS?”
“And what would you be doing with this new body at 73?” She sarcastically replied.
“Oh, that’s easy I’d be playing tennis with my husband, biking, climbing mountains again, and going out visiting people and places everywhere every day.”
She smiled again and responded, “I’m afraid not because that would not be possible.”
“Then should I just guess again?” I replied.
“If you want you can or you can just open it.” she said.
I thought for a while then I responded, “Maybe it has a magic potion to take away my wrinkles, and pump up my lips a bit … actually a whole facial uplift. And while we’re at it how about a little trimming of my increased waistline and putting the extra fat on my bum!”
Again she replied, “I can’t do that either.”
Frustrated I said, “Then why are you bringing me this box?”
“Maybe it’s time to just open the box,” she said.
“Okay,” I replied with a big sigh.
Bringing the box closer to myself I lifted it and tried to shake it like I’ve always done with presents. It kept getting heavier and heavier and I had to drop it. Now, I really didn’t want to open the box! I wanted to wake up from this dream that was getting scary. But the fairy and the box were still there.
Then, very sweetly, the fairy said, “I know you’re frightened, so I’ll tell you what’s in the box. This is your box of sorrows.”
Puzzled I asked her, “Why are you bringing me a box of my sorrows?”
She replied, “Because I could feel your unhappiness with your body and all on your birthday. And you have been so good at filling this box. Sometimes it took time but you always did put your sorrows behind you into this box eventually. That has helped to make you strong.”
Now I wanted and needed to look into the box. And there were all the unhappy moments and disappointments in my life, including the deaths of my parents and two of my brothers and my sister. And I could remember the feelings I had at the time. So I looked up at the fairy quizzically and asked, “Why, why are you showing me this?”
“It’s to help you put things into perspective to help you move on.” Then I woke up.
I didn’t remember my dream until I saw my green fairy on the shelf in the bathroom. I guess I’ll always remember the message that she was trying to send to me. I just need to go into my bathroom and look up.
My husband Bill and I have been waiting for the good weather of spring to finally come. We had a teaser for a week in April but then the temperature really dropped. However, on this Memorial Day weekend the weather was perfect. It was finally time to go to our local Garden store Dehns right here in town. I’ve always tried to go with Bill at least for the initial planning and buying session. And for the last two years I have been right there picking up and taking out the flowers and veggies that we decided to use. .
Before I got my electric wheelchair going there was a bit tricky. The paths like all nurseries have gravel and areas that can be muddy. When I would use my manual wheelchair I could get stuck and have to be pushed a fair amount of the time. And then…. oh I don’t want to go into my walker or cane problems. Also, of course there were times it was MS (my constant companion) that interfered with my going or good participation.
This year we both went. We loaded up my wheelchair into the van by way of a great wheelchair lift and took off for the first pick of flowers of the season. It was such a beautiful day everyone else had the same idea too. Therefore it was a bit crowded but we knew we would be back another day for more flowers and veggies. It takes time to get everything planted anyway!
We always start with the window boxes that wrap around our front porch. When we first moved here 30+ years ago we planted Petunias and other sun loving plants. But now the trees have grown and our front porch lives in shade. It does limit our selection of flowers. But of course with MS the shade is great for me. We always start with replanting the German Ivy that cascades over the boxes both on the street and the porch side. It grows so abundantly that we always have some left over which we bring inside with our other indoor plants. Then we add in the shade plants we select. This year it was salvia and nicotinia. We also selected two beautiful hanging begonia plants.
To be honest Bill does most all of the planting. I do a little or a lot. It depends on my energy level and strength which seems to be regulated by my MS. It doesn’t matter because that’s the way it is. If I push too much and I get exhausted Bill gets were really really annoyed. Actually I try to do Zen Gardening, a little every day being fully immersed with all my senses as well as the physical part of it. That way how much I do on one day doesn’t matter!
So we held off on planting the begonia’s in front of the evergreen bushes below the window boxes on the porch. But the next day when we did the planting it gave me an opportunity to try out two new long handle tools (a rake and a shovel) that Bill picked up from a local store Allerdice for me.
They actually extend so you can use them in two lengths. And they have an easy locking system that holds them in place. I think it really did help my back. When I spend time standing or leaning forward from my wheelchair and working with my arms my back can really ache later. I have found that it has been easy to end up with a sore back for several days. It’s just not worth it! “an ounce of prevention!”
So I use Zen gardening, the right equipment and try just being sensible. Then I can just enjoy and feel good about what I’ve accomplished. And look forward to doing more the next day. ellie
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