Ellie's Blog on MS and Disability in general

I was reminded the other night how much I have changed. How my priorities and my sensitivity to certain issues are not quite what they were 10-15 years ago.   I was out last night to wonderful fundraising event for our our local nursing home Wesley. I don't go out that much in the evening due to fatigue from MS. But now that I'm in this long remission with a few mild relapses I'm taking advantage of getting out at night.  So when my husband mentioned that he would love to have me join him in going to the Wesley fundraiser which was for transfer device's it was a perfect event!

I loved being out and talking to people which I have missed a lot over the past years but what I want to talk about in this blog is dependency.

I talk a lot about accessibility in my blog because that has been a continuing problem for me.  Having a disease like MS which has been functionally progressive in my case meant that to be out and doing I had to change my assistive devices and become more aware of my environment.  But along with the accessibility changes to make my life easier and fuller it was equally important to me to be able to be more independent.  I began to really  appreciate what Franklin Roosevelt said when he started the  March of Dimes, "anyone who has not lost the ability to physically do something can never understand what that little bit of independence to do it yourself means to someone".

I could have had my husband continue to push me  in my manual wheelchair or help me out of chairs and out of bed but that wasn't me. And I have become so much more aware that dependency rob's a person of the very essence of who they are.  That doesn't mean there aren't times and situations in which help is needed or help is something that makes what you want to do just so much easier.  Or that doing things with someone together is the best solution.

 

As a physical therapist seeing patients from the late fifties to the mid nineties I have had a certain bias.  When I was assessing or teaching patients or aides proper transfer techniques with or without a Hoyer lift my main concern was for the safety of the person doing the transfer and of the patient.

   At the time I thought I was being sensitive and that I had some understanding of what a patient might feel when they were told they needed more assistance which could include a Hoyer lift. But now after having had my own problems with transferring I am very aware of the emotions involved when more help is needed.  So when I saw the trac ceiling  transfer device being shown at the Wesley fundraiser my mind traveled to all the people I saw in nursing homes and home care when getting out of bed or a chair was a problem.

The safety of patients and health care providers transferring  patients have improved very slowly over many years. Even though as far back as 1898 the importance of safety in transfers was part of a nurse's curriculum. Since that time the use of proper body mechanics has always been stressed.  This was highlighted when the documentation of the musculoskeletal hazards to nurses' became apparent after world war II.  At that time early ambulation was shown to be advantageous to the soldiers returning with injuries.  And a walking program for the soldiers who were extremely unsteady was put in place. This increased the awareness of the important of body mechanics to prevent injuries when working with patients.  It was a specially apparent doing transfers for patients to be able to get them up to increase their endurance and strength to progress to being able to ambulate .

  However  statistics showed that body mechanics alone were not enough to prevent injury transferring a patient.  Actually nurses have been identified in the top 10 ranked occupations a work related Musculoskeletal disorders.

Before WW II many different ideas for transferring patients were tried out.  Like a patented shifting device.  This consisted of a thin flexible rollable platform which was placed under the draw sheet of a patient to assist them to transfer by sliding over the platform to a second support like a stretcher or wheelchair. Obviously it was very limited.  But with necessity being the mother of invention one of the ideas which finally was appropriate was a transfer device we now know as the Hoyer lift.

The Hoyer lift to the right is also called a sling lift. It was patented in 1955.  This has been used since then with some modifications over the years. This lift uses slings which can be placed under the patient appropriately  then attached by hooks and chains to the lift.  The patient is raised or lowered

manually by pumping the lever using  hydraulics to lift the patient. The platform on the bottom of the lift is widened or narrowed as needed to position the lift to raise or lower the patient. Then the lift is wheeled to the spot where the patient is being transferred to and repositioned to safely lower the patient.  Over the years these lift's have become smaller and easier to maneuver. Now there are battery assisted Hoyer lifts. A detailed history of transferring devices including the Hoyer lift and more modern lifts can be found on wikipedia  http://en.wikipedia.org/wiki/Sling-lift 

The latest transferring device  the Ceiling Track Systems {which is shown above at the fundraiser} that Wesley has purchased also use slings which are similar to those used in the more conventional lifts.  The advantage to this latest system is the ease with which the transfer may be done.  There is no positioning and repositioning of a large Hoyer lift.  The ceiling track is placed appropriately to allow the safe transfer.  One nice advantage is that the patient can use the control to transfer themselves.  This device can also be used in Home Care just like a regular Hoyer Lift can.  Again it is also a step up for the caregiver and the patient.

As I stated above when transferring a patient every bit of safety for the patient and caregiver is essential. But the patient's emotional needs should not be forgotten in the process. Finding ways like using the control goes a long way to decrease their feelings of dependency. 

Many kudos to Wesley! !               ellie

To know

There has been tremendous progress over the last 15 years for people with disabilities.  Since the passage of the ADA in 1990 more people have been helped and our communities at large have become so much more aware of the fairness it creates.

I remember talking to a member of my church congregation about the recent modification of the ADA and her response was I can't believe it took us so long. (see my 10/19/08 blog Bush signs ADAA into Law) Indeed I remember Senator Dole commenting at the 10th anniversary of the ADA  on how people in Congress make great speeches about the plight of the disabled but that they do nothing to help them get out into the community. And he went on to mention that they can't even get into the Congress or other important government buildings here in Washington.

But that is all changing! The MS Activist blog reported on May 21 the exciting news that a              http://msactivist.blogspot.com/search?q=  commitment has been made by the House of Representatives to make the house more accessible to the disabled.

On May 20 they released the CAO 2OO9 Disability Report. This report shows the changes that will be enacted in the House of Representatives. At a press conference on its release House Majority leader Steny Hoyer remarked: "last year we strengthened the ADA, helping the law live up to its original promise of inclusion for all Americans with disabilities.  Here in the people's house, we must live by the letter and spirit of that law-and what's more, we can be an example to all Americans who come here from all over a country and the world."  For more on this report go to : http://majorityleader.house.gov/in_the_news/press_releases/index.cfm?pressReleaseID=3053      

In this report they had major changes including ramps,enlarging doorway's and building an access for the disabled to get to the speaker's rostrum. But they also included the simple things that we encounter every day.  Like not putting the clutter of boxes in hallways that interfere with people in wheelchairs,walkers canes and of course the visually impaired..  Having handicapped parking sites near the doorway's that a person would use to go into the building.  And of course curb cuts close by.  Also curb cuts everywhere where street crossing are.

Now there's no doubt that the people with disabilities who work in the House  of Representatives glass is being filled on their access ability.  I hope that in each of their individual homes and in their immediate community and other places they access their accessibility glass if not full is filling also.

How about your accessibility glass? Is your glass half full or half empty?  Is your family putting  things in the hallways that makes it feel like you're going through a jungle gym to get by?  Do you have the railings,ramps, bathroom modifications,wide and easy to open doorway's in your home? And all the other things including visual,auditory and technological tools that increase accessibility in your own home?  It's so easy to say "Oh I can manage, I can get around that"  You don't want to be a bother. You don't want to spend family money unless it's absolutely past ?."I must have time".  I understand I've been there! But let me tell you that every time I have made an increased accessibility change.. I can do more ,I am less tired and I am a much happier person to be around!

So is your accessibility glass half full or half empty? Think about it. Do you need to make some changes too?

                                                                                    ellie 

The past couple of weeks we have had major changes in our backyard.  We had a very shady backyard which had become too shady and grassless over time. But with my poor heat tolerance and my MS progressing it was easy to delay making changes.  And as we were still able to garden in containers upon sections of our deck we felt we could continue to live with it.

However our shade was being provided by tree's that were eventually going to have to be cut down.  The biggest tree was a very large old butternut.  It had provided wonderful shade for us for over 30 years but it was dying and had to come down.  And on the other side we had four trees that were not growing in a healthy way so we figured might as well have them down too!

The picture shows the big production this was.  You can also see in the picture large branches coming over the fence from my neighbors that were starting to break the fence.  This had been from an old tree we had had cut down 15 years ago and our previous neighbors had let it grow back up. It gave us shade but was ugly and our new neighbors wanted it down so she could plant some cherry trees. So yesterday they had those cut down too!

When I looked out this morning and walked down our ramp bridge to our deck I was just overwhelmed with the desolateness of our yard! I mentioned this to my husband as I was very upset.  His response was, "you'll get used to it".

Now, that sentence is a loaded sentence to me. To say to a person with  Multiple Sclerosis or a disability "you'll get used to it " brings back memories of all the times you have been told you'll get used to things.

But overtime I like so many others realized that with a little bit of adaptation, environmental and emotional support these situations could be handled so much better. I knew that the back yard was not going to stay the way it is now.

Actually, I had tentative plans already in place to take advantage of the sun we now have. My sons are going to build me a raised bed for my long desired salad garden.  They are also going to enlarge the area where I've grown herbs on the railing of my ramp-bridge.  And now that we have all this sun their going to plant a garden for themselves.

But looking around outback I knew that was not going to be enough.  So I walked around outside and sat and thought about it.  Why was this so upsetting to me ? What was so important about losing those trees?

After while I had my answers. What I loved about my too shady backyard was that it replaced my much loved jaunts out into nature.  The long walks in the woods, the hikes up mountains, the bike rides along beautiful shady fragrant lanes that are now things of the past. The smell of the forest floor and the light shining through the leaves are etched in my memory so deeply that I can re- live them just by sitting out in my backyard.  And the wonderful surprise of suddenly finding a new, unusual or an old favorite wildflower has always been such a treat. Truly being out in nature nourishes my soul.

But being a 73 year old women who has lived with MS for many many years adaptation is secondhand.  So if I add a Japanese maple where those overhanging branches were and have climbing Vines up over the ramp-bridge (roses would be the best). And then add some wildflowers ,sunflowers etc.  We should be getting on a good track.

And maybe I should make plans also to get out on a nature trail soon. Two years ago I went with my older son up to the Adirondack Park Visitor Center at Paul Smith College in the Adirondacks. www.trails,com/tcatalog_trail.aspx?trailid=H  They had a nice exhibit and trails I could travel with my electric chair. We had planned to go up to John Dillon Park also in the Adirondacks last year but I was not up to it. John Dillon Park is especially for the handicapped. Check out their site for more information   www.johndillonpark.org  

If I'm not in my garden maybe I'll see you there! Be sure to let me know if you do visit.

                                             ellie

Well MS World Day is finally here!   And there are over 200 events in 61 countries.

Here in the United States the MS Society is calling for National Healthcare Reform and to include the MS Society's Health Principles. In Romania and the Netherland's they are having a Global Dinner Party.  In Portugal it's a Sing for MS . In Norway it's a Research Conference. In Belgium, Luxembourg, France and Canada they having a "Roll for MS "( a cycle motorbike event )

Each country is having its own events. But they are all for the same international cause of helping to increase the awareness of MS globally .The issues that people with MS face are the same everywhere and globally. As Prof Alan Thompson, Director, Institute of Neurology, UK and Chairman, Multiple Sclerosis International Federation?s International Medical and Scientific Board correctly states:

?People with MS have complex needs and at the moment these are not being adequately met anywhere in the world.?

• Remember that Globally, at any point in time, around 30 people in 100,000 have been diagnosed with MS.

 
So what are these issues? 

The Issues affecting people with MS across the world include:

• Lack of social support
• Lack of public information and education about MS
• Lack of access to availability of disease-modifying treatments and other therapies
• Issues related to employment
• Health insurance and social security issues

U2 have contributed their song "Beautiful Day" , which will be featured on a global campaign film highlighting different aspects of MS. This film will be available in 10 languages. To see the film and other information on World MS day go to :             www.worldmsday.org 

Below are some of the quotes from other celebrities about MS

Argentina: Lionel Andrés Messi, FC Barcelona, Footballer
?Whenever I go out to the field, whenever I kick the ball and whenever I run to catch it, every step and every effort I make will be a tribute to the people who live with a much more difficult challenge, to fight every day against MS.?

India: Milind Soman, Bollywood actor
?All of us have to globally join hands to improve the quality of life of people affected by MS. We should all work in cooperation to achieve worldwide solidarity for the MS movement.?

Portugal: Mário Laginha, Pianist and Compositor
?We like to think that we are invulnerable and that we will not get a disease like MS. Nevertheless, some of us or our loved ones will be affected by it. If everybody is aware of this and shows their support, then maybe we can make a giant step towards the discovering a cure. That is what I wish.?

Spain: Josep Guardiola, Football coach, FC Barcelona
?Imagine that one day you get up and your body does not respond to the orders of your brain. Imagine fighting every day to do what you want without having to think about it. Imagine this and tell me if it is not worth supporting the fight against MS. Join us!?

USA: Clay Walker, Multi-platinum recording artist
?Join me in supporting the first World MS Day and together, through international collaboration, we will help researchers find the answer to end MS.?

Meanwhile, eight people will climb six of Ireland's mountains in 72 hours. And Lori Schneider, USA, who has MS has reached the summit of Mount Everest.  Check details on her site at :                      www.empowermentthroughadventure.com

                                                                            ellie

Dear Friend,

World MS Day GOAL:
50,000 letters to Congress
by midnight on
Wednesday, May 27th!

Demand quality, affordable health care for Americans living with MS.

Click here to send a letter to your elected officials:

your U.S. representative

your U.S. senators

May 27 marks the first-ever World MS Day and over 100 nations around the globe are joining together to build awareness for multiple sclerosis. One of the greatest overarching needs around the world is for quality, affordable health care to ensure all people with MS can lead a life of possibility, dignity and fulfillment.

Here in the United States, for the first time in nearly 17 years Washington leaders appear serious about fixing our broken health care system. Tell Congress that now is the time to fix health care. Help us reach our goal: 50,000 letters to Congress by midnight on May 27th!

We have an incredible opportunity to make our voices heard in support of accessible, affordable health care coverage for all. Our legislators need to know that it is time for the right reforms right now.

As I write this, National MS Society staff and volunteers are meeting with members of Congress about the Society's health care reforms principles. These principles need to be incorporated into new health care policies if people with MS are going to be able to move forward with their lives.

In honor of World MS Day, let us unite to support these efforts with a national wave of grassroots action. Will you help? Write your legislators and speak out for quality, affordable health care by midnight on World MS Day, May 27th.

Decisions your elected leaders are about to make will impact how we receive our health care for generations to come. We can't miss this opportunity!

Below is the set of health care reform principles developed by Society volunteers and activists. With your help, we can put these principles in front of our policymakers. They include:

• Accessible health care coverage
• Affordable health care services and coverage
• Standards for coverage of specific treatments
• Elimination of disparities in care
• Comprehensive, quality health care available to all
• Increased value of health care
• Access to high-quality, long-term supports and services

Take action now - tell your legislators to create health care policies that work for people living with MS and their families.

If we can deliver 50,000 letters to Congress by midnight on World MS Day, we will send the message that we are united on behalf of all people affected by MS.

Thank you for standing with me at this important moment,

Scott Hanson MS Activist, diagnosed in 1998

I've sent my e-mail to my legislators.  Won't you send your e-mail to your legislators too!

                                                                      Ellie

National MS Society                                                 

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