Living Well With MS & Disabilities: Ellie's Blog

Today May 29, 2013 is the day we remember the over Two Million people around the  world that are living with Multiple Sclerosis. And "living with" is an important description.

MS starts in the young adult (usually diagnosed in the 30's) and lasts their lifetime. Some people are lucky and they have a milder form and can remain relatively active longer. Others are not so lucky and severe disability comes much too soon. And no one now knows who will end up with what form.

However, all those of us with MS have our lives changed forever. Having lived with MS for decades this I know. They will have to learn to be strong, flexible and be able to rise above the effects of it on a daily basis. When you consider that when you wake up you don't know how you will feel and what you'll be able to do each day. Can you go out to lunch? If your still working what adjustments do you need to make? Is it a cane or wheelchair day. Can you last the full day? How can you hide that fuzzy brain due to cognitive involvement and not appear inept? And how can you let people know it's not them it's because your just so tired and it's going to get worse if you can't shut down and rest that crazy Brain!

But when you have a support system around you it makes such a difference. I think the pictures taken at our local MS Walk here in Saratoga Springs NY show the feeling I mean.

WERE GONNA LOVE YOU THRU IT!!

What more can I say except to go to : http://www.msif.org/about-us/advocating-and-awareness-raising/world-ms-day/world-ms-day-2013.aspx 

for more wonderful stories, mottos and information on World MS Day.

Cheers,   ellie

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