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02/07/09
HOPE
There has been so much talk about hope lately. The state of our country is so deeply worrying to all of us. We desperately need President Barack O'bama and Congress to work together to come up with solutions to get us out of the mess we are in.
The dictionary's definition of hope is: a desire for something , usually with confidence in the possibility of its fulfillment: (for example he was greeted by some as hope for further interest rate cuts.)
However, the hope that most of us feel today is much deeper and filled with much greater anxiety than the dictionary's definition of Hope. Many people are scared that they will lose their jobs, their homes and that they may never recover economically. And the situation that they are in is not totally under their control.
The poem "Hope" by Emily Dickenson, which is also one of my favorite poems describes more closely the Hope that many of us have.
HOPE IS THE THING WITH FEATHERS
by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune without the words,
And never stops at all,
And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.
I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me.
Many of us also have had or have the experience of having a problem in our own personal lives. A problem that we also do not have much control over. A problem like our nations problem which is or potentially could be limiting to our lives. But here again there is always that little kernel of Hope that somehow,some way ,somebody or something will happen to make it better.
In my own personal life MS is my personal problem. I have been going downhill for years. I still get a little better periodically in remissions from my many relapses but it's still downhill, especially for the last four years. I like to think of myself as a realist who accepts what I cannot change and deal with it. To do this in my current situation has meant that I have stressed modifications to my home and car etc. I have looked at every difficult functional situation with the philosophy of how can I modify, what can I have built or purchase to make myself more functional. And it has helped me to be as functional as I can be. And I am very proud of how I have been handling this.
But deep down in the recesses of my very being is the Hope that I would have a terrific remission and I would gain back function in my daily life that I hadn't had for years. And I would keep it, never to go badly downhill again on my next relapse. Or even better, no relapses ever again! Everything physically back that I would have had as the physically active women I should have been all this time.
Sometimes I dream of headlines like- "SCIENCE TRIUMPHS: New Drugs for MS to Remyelinate Nerves and Develop New Axons !!" "A Vaccination Developed to Prevent MS." And of course the best headline of all " A TOTAL CURE FOR MS! !" I do believe that this will happen but not anytime soon. And at 73 I need soon.
But I have had a little miracle of my own. I am now in the middle of wonderful remission. It's three weeks old. I was not be able to walk at all and needed an assistive aid to help me stand up and get out of bed independently. Now I am standing up and getting out of bed with out aids and wall walking independently 10- 30- 50 -100 feet. My legs, my trunk, my arm strength and hand coordination are all coming back.
And I am in a state of grateful,grateful thank you, thank you God amazement!!! I'm taking my wheeled walker with a seat out of cold storage along with my canes. They need a bit of cleaning up, fixing a wheel and the brakes on my wheeled walker and I think maybe a paint job. I'm celebrating my miracle by going off to visit my oldest sister in Boston. I think I'll paint my old cane that I'll bring with my wheelchair a bright red.
I feel that what has happened to me with my MS is a reminder that you should never give up Hope. Whether it's for a recovery, a remission of a disease or the economic problems so many of us have today. We must remember to keep our Hopes and Dreams alive. But while we're waiting for things to take a change we must remember to adapt and do our best to do well. Be a realist to the current situation but never give up your Hope and your Dreams that things can get better.
Maybe my husband and I will not be zipping around on a motorcycle. But just a little walk in my home and and the ability to be able to do more is a blessing. I won't be greedy!
So hang in there every one and don't give up hope. Things will get better and you'll adapt better too.
Ellie
01/03/09
Advocacy is important
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?
My family also agreed on the following:
1.We we should use the information from electronic record keeping to develop best policies practice.
2. more emphasis should be placed on preventive medicine.
3. chronic conditions require comprehensive coordinated care.
4. De- institutionalize people with disabling conditions and allow them to remain within their community.
5. Get rid of the in-house restrictions on Medicare B for durable Medical Equipment.
6. Return rehabilitation to its original intention by FDR which was to return a person with a disabling condition to their community to be actively productive.
7. Use technology as the final step in rehabilitation of those with disabling conditions. Using low tech walkers, manual wheelchairs, computers etc. to high tech upgrades and other electronic devices as rehabilitation specialist’s determine the need for them will make these people more productive.
I am a perfect example thanks to my family. I’m writing this using word recognition on my large screen monitor with enlarged type. And I also have an ergonomic keyboard and mouse when my voice goes so I then type for a bit. To sum up how we feel. Quality Health Care and affordable cost for all. We are a great democracy! Let’s do it.
12/10/08
Thanksgiving with family
What a wonderful thanksgiving day I had. Again we shared the day with my nephew his wife and their children. We were joined by my brother-in law Bob from Massachusetts and my sister Naomi and her husband Mark who flew up from Virginia. It's only been for the past few years that we have been able to do this. My nephew and his wife moved nearby in Queensbury so our trip up was just the appropriate distance.
A little help getting up the steps Made It !!
I had prepared for this long day for the past week by taking it easy. I didn't go out to get my hair cut and colored. I stayed home, took extra naps and did not do as much around the house. I really do like my home to look nice and specially when company was coming. But my brother-in law who would be staying with us is family and I felt the house was good enough. What was most important to me was to have a good day with my sister and her family and mine. I had not seen my sister for two years. And in these last two years she had had one serious illness after another.
My sister Naomi and husband Mark Showing off the use of my sliding board
I like everyone else needed some relief from the anxiety caused by the problem we are having with the economy and Iraq along with all the other world situations. This is when being with family on Thanksgiving is just so important. And even with this bad economy people found ways to go home and be with their family.
Pam CEO of 2008 Thanksgiving The 2 assistants Casey and Mark jr.
We all complain about our country's political elections with its nastiness. And most of us are really spooked and worried about the economy and the world situation. But many of us do this worrying and complaining in the warmth if of our own comfortable homes and families. But invading our homes on the eve of Thanksgiving Day was the news that there were terrorist's taking over a major hotel in India and a possible coup was occurring in Thailand. And when we woke up on Thanksgiving morning to watch the news the situation in India had progressively got worse. And there was also a new report on the news about the terrible poverty in Haiti following the hurricanes we've had this season.
Mark carving and were ready to go
This year as we said grace and gave thanks for our wonderful feast there was extra meaning for all of us in giving thanks. We were very much aware of the discrepancy between our lives and many others in the rest of the world and in our own country.
And for our family we had more to be extra grateful for! My sister looked and felt wonderful and I was really good too. So me in my electric wheelchair and she with her zippy butterfly painted cane had a wonderful visit. And each member of our family enjoyed visiting with each other and the generations conversed and it was a happy Thanksgiving Day. We extended our visit after a day of rest with lunch here in Saratoga and a visit to Celtic Treasures, the Irish shop on Broadway and then back to our home.
Here we continued gabbing over coffee while my older son showed the additional adaptations they'd made here in the home for me. And my younger son showed them the adaptations he's made for me on the computer. Like voice recognition, an ergonomic keyboard, and an ergonomic mouse.
I was so pleased that he was able to show my sister and her husband this. My sister has rheumatoid arthritis and her hands are becoming more affected by it. Her husband Mark has lost all of his central vision due to Retinitis and my son had some idea's also for him specifically. He mentioned that they build articulating arms that you can mount your monitor to. Once mounted you can position the monitor on the side and move it to any position your vision would find perfect. They also tried out the keyboard and speech recognition and had fun with that. Of course this speech recognition was used to my voice. Hence there some humorous errors in the dictated words of the monitor screen. I hope everyone's Thanksgiving was as happy as our's was.
ellie
11/25/08
Multiple Sclerosis affects the whole family
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
11/08/08
Paralympic Documentary on Mainstream TV
Turn on your TV this Sunday November 9 at 2:30 PM to NBC. There will be an in depth documentary about the 2008 Paralympic games held in Beijing China. This 90 minute documentary will be narrated by the NBC sports announcer Bob Costas. This special which has been produced by the Emmy award winning David Michaels will take you on a journey into the lives of eight athletes (who are disabled) plus the wheelchair basketball team.
As you watch this special be prepared to be blown away by what you will see! As David Michaels said in all his 30 years of covering Olympic sports events never has he seen such a rich tapestry of stories in competition. It reminded him why he fell in love with sports in the first place.
So tune in to see what our team TEAM USA did at the Paralympic games in Beijing. They earned a total of 99 medals with outstanding performances by all. The American athletes who will be profiled are from swimming, track and field ,wheelchair racing ,basketball and yachting.
Enjoy, Ellie.
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