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03/14/13

Permalink 02:10:00 pm, by eleanor Email , 780 words   English (US) latin1
Categories: Advocacy, my life, Thoughts, information

MS AWARENESS WEEK–MARCH 11-17 2013

What would I like people to be aware of in MS Awareness Week?

I want more than an abstract understanding. I would like to give people a picture of what the disease is and what it's like to have MS.

1.MS is a disease of the Central Nervous System (the brain and spinal cord) where the immune system goes awry and attacks the insulation (myelin sheath) of the electrical conductors (the nerves) that transmit the electrical energy though out our body that allows us to function.

2. MS can thus affect our physical movement, cognition,vision,sensations,speech,swallowing,bladder and bowel.

3. It is the top disablers of young people as it begins in the 20-40 years range. Remember this is just as these young adults are starting out in life. It affects women at a 2 to 1 ration with men.

4.There is no cure and many time it can take years for a proper diagnosis. It is a progressive disease that is different in each person with MS. However there is help with very expensive drugs to slow aspects of it down.

5. It is different in every person with MS. And that is because of the location of the damage to the nerve from the attack can be anywhere in the CNS affecting a different part of the body.

6.It is also different in intensity. Some people may have a mild form others a more aggressive form. It usually starts out with an initial attack (many times visual) then there can be a full or partial recovery. However after time it returns and attacks the same area and adds another.(This is referred to as the Relapsing- Remitting Phase)

7. After a time most people will not have any or only mild relapses. But they will  continue to progressively get worse(secondary progressive) .There are a small percentage of people with MS who start out only in a progressive phase (primary progressive).

8. There is one common factor in almost all people who have MS and that is fatigue. It is not a normal fatigue but one that is unique to MS.It is a terribly uncomfortable fatigue. It's almost painful. It can come on slowly or hit like lighting. There's medicine that has a very limited benefit for some people. Otherwise resting and time out for a time helps it to pass.

Reading this some of you may know not know of anyone who has MS or you know of  someone who does but not much about what going on with them. There are so many different conditions today we can't be knowledgeable about them all.  Yet the chance of knowing someone with MS  should be greater because they are young adults who age with progressive losses.

The estimate of people having MS World Wide is 2.5 million and here in the United States it is approximately 400,000 people.

And to make it more personal to me there  are more than 12,800 people out of 6,000,000 people living with MS in upstate NY where I live. And in my county Saratoga, 457 people out of 220,882 people have Multiple Sclerosis  So even here you can live your life not knowing anyone with multiple sclerosis.

 NYR_MSAW_2013_client_map

Now after this little synopsis of what happens how does it affect you. If you have MS I hope it can be helpful in explaining it to others. 

If you don't have MS but you know someone has MS I hope it will be helpful in understanding what they are living with. 

When I was working as a Physical Therapist I treated so many different people with MS. And they all were affected differently. It continued to amaze me and challenge me. I was told once by someone who had two friends with MS. One had cognitive problems and the other  friend had more than motor problems. Her biggest frustration with maintaining their friendships was the Fatigue and Relapse problem. With each of them she felt she was at times dealing with two different people.They would plan to do something then they were down again. 

I remember people who didn't know I had MS used to say I was like a Jekyll and Hyde. One time I would be ready to tackle the world and another suddenly just dragging myself around.

So I'm trying to emphasize you really have to have understand a bit if you want to maintain friendships with someone who has MS.  And people who have MS have to be open minded even if they're frustrated. We must remember that if people don't understand realize they don't walk in our shoes.

As I writing with an MS fatigue -Relapse time this week I'm ending this now.

I know I'll get better with time and hoping for a good spring.

ellie

02/25/13

Permalink 01:36:00 pm, by eleanor Email , 358 words   English (US) latin1
Categories: thoughts, Advocacy, Adaptive Sports

SPECIAL OLYMPICS WINTER GAMES 2013

There is so much that is dispiriting and depressing in our world today.Sometimes it can really get to me. This is how I have been feeling lately. Then on Twitter came a note about the Special Olympic Winter Games going on. I went onto sites to check out what I knew would lift my spirits and it did.Read on and I'm sure it will you too.

Inspiring stories on dreams and aspirations of people with Intellectual Disabilities

For eight days of competition by 3,000 athletes from 111 countries the motto of the Special Olympics "Together We Can " was so apparent. This year the Special Olympics Winter Games was held in Pyeongchang, So. Korea.

Nobel Peace Prize laureate Aung San Suu Kyl from Burma spoke at the opening ceremonies . She also delivered the keynote address on achieving human rights for those with Intellectual  Disabilities at the first Special Olympics Global Development Summit.

After the Summit when she came back to the games many people asked her why ? Her answer was "why not!" Then she  stated "for celebrating the supremacy of the human spirit they are the most touching, most inspiring " of the hundreds of public events she attends each year.

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USA Snowshoeing event

US Woman's Snow shoeing Event

USA Snowboarding Event

USA Speedskating Event

Special Olympics World Winter Games 2013

 

"By celebrating the Special Olympics we are celebrating the beauty that is in everyone, not the random standard that society is selling us to make us feel safe. We are asked to take a chance and see the amazing accomplishments of each individual. We are giving a chance for all children to enjoy the spirit of competition in sport. We are allowing all parents to cheer for their children's achievements. We are seeing the beauty that is in every living being."

Isaac Zablocki  from "A More Inclusive World " blog on the Huffington Post

For more information and inspiration from the 2013 Special Olympic World Winter Games go to http://www.specialolympicsteamusa.org/2013/team-announcements/2013-world-winter-games-complete

Save it and be inspired now and when your down in the future!!

For a prior blog on the Special Olympics go to: http://www.saratogaareas.com/ellie/blog3.php/they-run-for-the-special-olympics

Be well.  Spring is coming soon.

ellie

Permalink 09:47:00 am, by eleanor Email , 249 words   English (US) latin1
Categories: thoughts, Advocacy, adapting activities

THEY RUN FOR THE SPECIAL OLYMPICS

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Again another summer run for Special Olympics down my street! This is one of many events across our country that have been repeated for 42 years in our country.

Year by year other countries (now 180) around the world started to partipate in the Special Olympic movement for those with intellectual disabilities.   In fact the Special Olympics is fastest growing grass roots volunteer movement on the planet .  They are the world's largest public health organization serving 200,000,000 people with intellectual disabilities (3 percent of the global population).

How has this happened that one women (Eunice Kennedy Shriver) developed a sports program for the intellectually challenged in her backyard to where it is today.  Obviously a total commitment and determination on her part.

But it had to be more than that. And it was to see the joy of a sense of accomplishment on the face of one of the athletes, to watch the athletes determination to work hard to get better, to realize that you didn't have to win, it was the effort you put in that mattered. And then one could see that there was a carryover in these athletes ability to function in the community due to these events. Then gradually society itself began to have a different opinion of people with Intellectual disabilities.

In some ways there is still a long way to go for the intellectually disabled to be fully included in society with equal opportunities for a full and productive life.  But look how far we've come.

                                                    ellie

02/09/13

Permalink 03:20:00 pm, by eleanor Email , 613 words   English (US) latin1
Categories: thoughts, The Law, Advocacy

VIOLENCE-A PUBLIC HEALTH AND PUBLIC SAFETY PROBLEM

Are we a more violent nation then other wealthy countries? Or is our easy access to firearms the agent of the cost? The cost of lost lives and or physically damaged lives with its resultant emotional, social and economic impacts on individuals, families, communities and our nation.

32,300 citizens in the US have died each year due to firearms averaged between 1980 and 2007. It is the 2nd leading cause of death after motor vehicle crashes. Firearms are involved in 67% of homicides, 50%of suicides, 43% of robberies, and 21% of aggravated assaults.

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Approximately 2/3rds of all homicides are committed with a firearm. And it is a handgun that is used 70 % of the time with semiautomatic pistols being the gun of choice. 77% of the victims were males under 40 years with 54% of them between 15 and 24. In fact death by a firearm is the 2nd leading cause of death for males in that age range.

In 2008 47 % of firearm homicides occurred in a house, apartment or area surrounding.  25% occurred on a public street, 10% in a vehicle, 8% in a  commercial area and 4% in a school or rec,sports center.

In 2009 2000 law enforcement officers were shot at . 8.8% were injured  and 48 were killed.

Suicide is the 11th leading cause of death among Americans. In fact more people die by suicide with a firearm than homicide.  Suicide attempts with a firearm result in death 70 to 90% of the time.  By contrast only 10 to 15% of suicide attempts by any other means for example hanging , monoxide poisoning , cutting are fatal.

Unintentional firearm deaths mostly affect children. 16% of the unintentional deaths occur among youths under the age 20.

 

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Screen clipping taken: 1/30/2013 7:06 PM

 

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Firearm homicide victims are disproportionately young Males . In 2007 77% of homicide victims were younger than 40 years. 54% of victims were between 15 and 29 years. Black Males and black females are more likely to be the victims of firearm homicide than their white counterparts.

In the United States someone commits suicide with a firearm every 17 minutes. In fact a suicide is the 11th leading cause of death among Americans. And handguns are the most frequently used type of firearm. In the year 2007, 80 percent(13,986) of firearm suicides were by white Males. There are two incident peaks of suicides -13% under the age 25 and 22% over the age of 64.

 

For every person who dies from a firearm injury, at least two others will survive..

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Surviving a firearm injury is better today than it has been in the past. Due to trauma centers civilians just as our military personnel have increased chance of surviving. But they do survive with disabilities. The most serious disabilities are results from an amputation, traumatic brain injury and spinal cord injuries. Nationally 16.5% of  spinal cord injuries are caused by gunshot injuries. And 12% of all Traumatic brain injuries are due to gunshot injuries. And less serious but also disabling costs of nerve damage, vascular and bone fractures.

And the financial costs to society are also high. Taxpayers pay about half ( $1.1 billion) of the total lifetime cost of treating gunshot injuries, with private insurance, victims, and other sources covering the rest.  These survivors of a firearm injury lose in productivity ,ongoing medical cost, long-term disability as well as physical and psychological problems.  Considering all of this the price tag of these injuries including quality of life estimates reaches $100,000,000,000 annually.

We have a problem here in the USA that's needs to be solved. The horrible shootings in Newtown on top other mass murders have awakened us . We who live in safe middle class neighborhoods must look further into this problem affecting other less safe neighborhoods as well as our own. Maybe we need to be more pragmatic and follow the money.

Who is profiting from all these guns in our country?

Who is paying for it?

ellie

 

01/11/13

Permalink 10:17:00 am, by eleanor Email , 1213 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities

NEW YEAR RESOLUTIONS FOR A HAPPY NEW YEAR

 

http://www.click2crop.com/postcard/big/hny0556.jpg

 

From an Old Soviet Christmas Card Collection

 

I hope everyone had a very Happy Hanukkah, Merry Christmas, Happy New Year and all other joyous celebrations during this past holiday season.

New Year seems to be the time we set ourselves up for the eventual failure of those New Year's Resolutions.  Making resolutions with each New Year is very appropriate as we can all do better.We  can try to lose weight, read more books, study harder, make more money, stop smoking, be kinder to our spouses, children, dogs, parents etc..

I hadn't made any specific resolution until a few day's ago. I was sitting in my recliner reading a book on my kindle. As I paused before starting the next chapter I became increasingly aware and then grateful of how good I felt. None of that damned MS Fatigue hanging around me! It was such a wonderful moment..mentally sharp and not tired. Such a feeling of well being that I didn't want to move I just wanted to wrap my body and emotions in it and treasure that feeling.

And this is when I decided that my New Years Resolution would be to spend my days with less fatigue!

Because when I'm not fatigued everything in my life is better. I'm a nicer person and I like myself better. I'm more fun to be around, more friendly, laugh freely, mentally sharper, move better and have an upbeat positive attitude about life. This is when I finally make those phone calls to old friends and family and make all kind of (tentative plans). I have to be careful though because I usually overdo and really crash. And unfortunately I have found that lately recovering from this overdoing is taking a longer and longer time.

Remembering this at this time gives me more impetus to resolve to try to do better with this fatigue problem. I think conquering or managing the fatigue from MS is now everything to me.

I can use assistive devices, make accommodations and adaptive changes in my home but..if I'm still stuck with fatigue life is a bummer. When I'm in a fatigued time I can get totally overwhelmed so easily. And at times I even feel like I'm going to fall apart. Which is scary to me as I am a bit of a self control freak. But at times lately just simple things seem to trigger that reaction.

So I'm throwing out the window all the other things I should resolve to do and focus on managing my fatigue better. I know that  if I am not so fatigued and leave more time for fun and laughter I'll be able to manage this life of mine much better.

Then I can slowly add more of those things I should do and want to do. Like get my blood sugar under better control as I am also a Diabetic and keep urinary tract infections away as they add to my fatigue.  And then I can start adding the obligations I feel toward my family and keep up contact with old friends and new friends. Then maybe I can slowly add all the other things I want to do..Whoa!! I will then be right back with heavy fatigue again...

Periodically over many many years I have had to decide to scale back my desires to what I could reasonably handle.This is so hard for me to do. When I'm too tired to want to do things it's easier . But when I start to have more energy and less fatigue I have to admit I always either overdoing  or I am miserable that I'm not doing more.

Years ago a neurologist that I was seeing was in a hospital and it was a distant walk up to his office.  One day I arrived with my cane obviously exhausted and he said to me."You should not be walking up here take a wheel chair." My response to him was "I'm not taking a wheelchair I will never need to take the wheelchair or use  a wheelchair."   (Remember I'm a physical therapist) And then he said to me "when you decide that you need a wheelchair and start to use one for longer distances or if your tired you'll find your life will be 100% easier."  Well I didn't get a wheelchair right away. I did get a wheeled walker with a seat which was great . After a year I got a manual wheelchair then three of four years after that I got myself an electric wheelchair. So I wasn't exactly the quickest person to admit I needed assistive devices. But I'm so glad I was able to change as they have made my life much fuller.!!

I also have been told that I am too much of  Type A  personality and it would  be easier if I was more of a Type B. I know what they mean but it's hard to change your whole basic personality. But I have been learning to accommodate my personality to change.

But it was the readings of a Buddhist Monk that helped me to make changes. He stated that unhappiness is caused by people hanging on to what is no longer appropriate for them. And they do this because they don't want to give up what was right for them at an earlier time. But when you do stop pushing away change and accept and welcome the new you are open to find new ways and new things that can give you pleasure and satisfaction too!

So no more doing things till I drop (which I've called pacing myself).

I'm going to take a short nap as I need it before real fatigue sets in.

And if it's all day fatigue just rest and stop fighting it.

I used to meditate more often I'm going to reschedule it in my day.

10 minutes of dancing in the morning  [where I have close walls to reach for] to my favorite tunes as well as my other exercises. This will give more pleasure therefore a better way to start my day.

Take time every day to reorganize things and throw away what I am not going to be using or need.  That includes eliminating emails.

Restart making entries into a book I have of Gratitude for things that happen day by day.

Take time to enjoy my indoor plants and bulbs I've planted and put my feet up and read more good books.The hell with the dust.

I feel these decisions above should give me a start on deciding what's most important to me and what I should spend my time on and  eliminate things that are not.

At 77 going on 78 I do feel increased urgency that by my eighties I probably won't be able to do as much and I have to do it now. But what's the point if all it does is make me tired all the time. So by doing the above I really think I will be able to help identify what is really the most important things that I must spend my time on and just chuck everything else!

              "It is not

                   the mountain

                   we conquer,

                   but ourselves."

                 Sir Edmund Hillary

The first person to  reach the peak of  Mt. Everest in 1953

Be Well,

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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