Living Well With MS & Disabilities: Ellie's Blog

1936 future Olympian                                                                                                                                                                                  But who am I really ?  Am I the same person born in 1935 on Father's Day in the middle of the depression?  How much has my life experiences due to Multiple Sclerosis changed me?  These are some of the questions I ask myself.  In a month I will be 78.  Did I think this is how I would be looking back at my life at the age of 78?

No not all.  My image of myself in my retirement years when I was in my twenties before MS was a factor in my life was that I would still be quite active. I would be like an older woman I admired. I would still be riding my bicycle to pick up a few groceries like a favorite bottle of wine, gourmet  cheese and wonderful loaf of bread. Then I would stop at a favorite place of mine "Yaddo" for sitting and reading my favorite book of poetry. I would also belong to a very interesting book club with fascinating and a diverse group of people. I would have a season's ticket to the opera, ballet, the symphony, and various theater groups. And I would be involved in my community as well as working as a Physical Therapist.

Of course I would look back on my wonderful trips including hiking and biking trips and playing tennis. And most important of all I would still be doing them! I would also be sharing a lot of these with my wonderful husband and my 2 sons and maybe grandchildren. And now that I have been retired for years I would  have  the most gorgeous garden. I would put flowers in every room for all the guests I would  still  have.  Having dinner parties, women friends in for tea and still having the energy to do so much I wanted to do.

Oh MY how the reality of my life experience has changed thanks to MS. Now it is not that I haven't done some of those things I mentioned above. Or that I haven't been married to a wonderful husband and have two wonderful sons.  But the truth of the matter is when I think of MS and how it has changed my life all I can really think of is that it has been decades of fighting fatigue and loss of function.

And except for the wonderful times when I was in a remission I have been losing the battle and have been having a continual loss of function in all spheres. I sometimes feel that my life has been spent trying to accept the losses and to find ways to replace my lost abilities by using assistive devices , mobility aids and giving activities up or finding less demanding activities .

Then there has always the question of what will MS do to me in the future?  I and others with this disease have to deal with the reality that eventually we will be losing even more function due to MS.  We hope that it's slow but it makes what we can do today more precious!  Even if like me we willingly  exhaust ourselves at times because we fear that in a few years maybe we won't be able to do something we love. We have to adapt and our family has to adapt too!

I shared on World MS Day website that my motto was the Serenity Prayer.  This is a prayer that I have used for years. In fact many years ago my son put it on a poster in a frame which I have placed in the book case across from the bottom of my bed.

 

This crazy disease effects our life in so many ways. So if you meet me and I look like I must be crazy exhausting myself gardening or some other activity  there's a deep seated reason for it. I want to do what I can while I can and my goal is a lovely perennial garden by age 80. I wouldn't be me without a goal.

Or if you see me rested  and I'm really looking good and acting real social ..That's because this is a special time for me. I miss being out around people so when I'm up to it it's a precious time. But, I'm sometimes I'm afraid I'm like a person who has been inside too much and and may act inappropriate.

But this is who I am ...same person under different circumstances. And I still want to do all I can as long as I can.

Vase with flowers from my garden

ellie

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.

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

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.

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

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

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.

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.

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

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..

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