ELLIE'S BLOG on Living Well with Disability

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

Last week my husband and I decided to go to a couple of new garden centers.  We have several close to us that we have used for a lot of our gardening needs.  But it's fun to go to a new place as they usually have some different flowers or other garden paraphernalia.  I guess we've been spoiled because the local garden centers have the paths that are easy for me to use in my wheelchair.

As heat is a problem for people like me with MS we started early before it heated up. The first garden center we went to was recommended by a friend who works there part time.  Pulling in we realized it was heavily graveled with large stones. We looked at each other knowing this could be a potential mobility problem for me.  But as we are not people who give up without  effort we took out my electric wheelchair and yes the large stone gravel was limiting.

However, the people there were very nice and brought me a chair to sit on as I had to use my cane to get around where the electric wheelchair couldn't go. As my walking distance is quite limited there were many areas that I could not get to. But we did find several plants we wanted and bought them. By the time we were finished I was beat but we still had one other place we had planned to go to. So I rested while my husband drove us there.

The second place was also all covered with gravel. Knowing I would be limited in my electric wheelchair I figured I'd try using my large wheel wheeled walker with the seat. I knew my husband or I could lift it if I got stuck and I could sit when I needed to immediately on the spot. It was easier to get around and I tried to find shady spots between my short distances that I could walk. However it was later in the morning and hotter and suddenly I could no longer walk.  So after resting I found I could take a few steps and added my sideways- backwards walk which brought me further. Normally my next step would be to sit on the seat of my walker and push myself backward. But due to the gravel that was a no go. However with my husbands help and time we made it back to the cashier with our purchases and then to the van.

As we left I looked back with longing as I did with the former garden center. Longing for the sites with flowers, bushes and trees that I could not get to. But I checked out what we had purchased with great satisfaction. They were plants that should fill spots that needed them perfectly.

But as I was planting them with my husband's help in some cases I felt such a sense of sadness. There were some areas I wanted to put some more perennials in. And I have to admit I was really tired and angry when I thought of all that impossible gravel impeding my shopping adventure for my garden.

And as I continued to ruminate on that awful gravel I pictured myself going places where they had gravel in the following wheelchair.

                                                      This is called the TANKCHAIR. This chair was created and built by Brad Soden for his wife who broke her back in an accident. Confined to a wheelchair her life was changed dramatically. She and her husband and their 5 children loved to camp. An incident on a camping trip compelled her husband to create a chair for her. For more information on the TANKCHAIR and why and how it was built go to  http://www.tankchair.com/ 

In this crazy wheelchair gravel would never be a problem for me. I could also go hiking on trails that are inaccessible to me now and just ride across open fields or along the beach. I wonder if I could even climb up sand dunes, hill's or even mountains ?  

My electric wheelchair is meant for going over floors, sidewalks, grass or very fine gravel.  There are standard electric wheelchairs or scooters with larger wheels that could go over larger gravel and some limited open terrain but they are expensive and not in my budget.

But this wheelchair is the max. It's certainly not in my budget. But what a wheelchair !!

                                                                               Look at that expression of utter joy on Pam Soden's face.

What a husband!

What full fun day's of camping this young family will have!

After having fun picturing myself in this TANKCHAIR  going all kinds of places unhindered suddenly my anger at the gravel diminished.           

I glanced over to the chaise area (my special shady nook) on my deck to the plants I had just added there .                                                     The realization that I had almost forgotten the pleasure that I felt from what I did see and had purchased hit me. There's nothing wrong with wanting things to be better. But again the important lesson of appreciating and getting pleasure from what can be can never be forgotten. 

To find current information of new ideas to increase mobility by adapting your wheelchair or a innovative new products go to the Wheelchair Diffusion Blog  http://www.usatechguide.org/blog/category/wheelchair-weird/

Live well and don't obsess on what you can't do.

                                               ellie

Last year my sons put in a raised salad bed.  And then I asked them to write up a detailed description with picture's here on my blog so I could share it as it was just so great.  It can be found on my blog  of 7/29/2009 "How to Make A Raised Salad Bed".

last summer I was able to able to plant, grow and then pick my salad greens most days by myself.  It was so successful that we did not buy one salad green till October. And at the end of the summer we composted the bed to put it to sleep for the winter.

Over the winter we just watched to make sure the snow was not piling up too high on the top of the bed. Periodically we just cleared off the top of it a bit.

This spring (which came early this year) we assessed its condition and it was good.  However my sons decided they didn't want to risk any chance on long-term unsteadiness as it was a keeper. 

So they raised each end, poured in cement for it to rest on to give it utmost security.

Then they prepared the bed for planting our salad greens this year.

This is the fantastic result. 24 different wonderful greens in a patchwork quilt pattern ready to eat in Mid-May. Who needs flowers for beauty! (Oh we have flowers too.) And now with the new ramp they built for me to go down off the bridge "I'm independent no matter how my legs are every day.           Bon Appetite         ellie

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More than 1,500 athletes and coaches from across the state will attend the games of the Special Olympics in Utica this year.

The games begin on Friday June 4 with the final leg of the statewide torch run through downtown Utica. The opening ceremony will be in in the evening at Utica College.

On Saturday June 5 competitions will include aquatics, basketball, bowling, power lifting, gymnastics, tennis, volleyball, and track and field.  These games are open to the public and they are free.

It will be the special day.  If you have never attended a special Olympics event and you are free and in the area- go don't miss it.

For more information and directions to get to Utica and the Special Olympics go to: http://nyso.org/

                                    ellie

The Paralympics are now over and the official mascot Sumi we'll be able to rest for a few more years.

Part orca whale, thunderbird and black bear, Sumi is the official mascot of both the Olympics and the Paralympics. His name comes from the word "Sumesh," meaning guardian spirit. He acts as the guardian over the other Olympic mascots, slightly wiser and older than Quatchi and Miga.

This 2010 Paralympics had  athletes who represented 21 countries. There were 192 levels of competition producing 64 gold, 65 silver and 63 bronze medals.

The top five countries in the medal count are Russia (12,gold, 16 silver, 8 bronze) Germany (13 gold, 5 silver,6 bronze), Canada(10 gold, 5 silver, 4 bronze), Ukraine(5 gold, 8 silver, 6 bronze) and the U.S.(4 gold, 5 silver, 4 bronze).  For those of you who were not able to see these Paralympic athletes in their sporting events there is still time. You can go to the site below and see re-runs of all the games.      http://www.paralympic.org/search.html

If your not familiar with the Paralympics a brief overview of the classification system should help in the appreciation of the athletes.

The Alpine Skiing Classification System

1.VISUALLY IMPAIRED

Visually Impaired -has 3 Sub classifications from totally blind to visual acuity above 2/60

 "Vision is to have sight,an idea or a dream"

Visually Impaired Danelle Umstead and her guide and husband Rob Umstead won a bronze medal in the super combined women's visually impaired alpine event. Danelle has no central vision and is losing her peripheral vision due to retinitis pigmentosa and early onset macular degeneration.

2. STANDING

There are nine Sub- classifications .They range from severe functional impairment in both legs including incomplete paraplegia and bilateral leg amputees- to less severe like a loss of one arm or one leg .  An example in this category is: 

 Monte Meir in his 5th Paralympic alpine ski race. Monte lost his right leg in a garden-tilling accident when he was 8 years old. But it didn't keep him down. The next year he started skiing. He uses skis on the bottom of his poles (out-rigger) and his good leg.He won his 1st Paralympic medal at Lillehammer in 1993.

3.SITTING :

The sitting criteria is based on Sitting Balance.  It ranges from Poor balance due to high spinal cord injury to good sitting balance (low spinal cord injury or double leg amputee).

An example of this is Laurie Stephens competing in the  sitting giant slalom. Small in size but a powerhouse on skis!        

Laurie was born with Spinal Bifida and she started skiing age at age 12. When she went to Loon Mountain in New Hampshire with a disabled group she discovered skiing and it has been an important part her life ever since.  

The Nordic Skiing Classifications is quite similar to the Alpine.

An example of SITTING in the Nordic Skiing Classification is Andy  Soule. Andy won the bronze medal in the 2.4 km pursuit sitting biathlon. He is the 1st U.S. athlete to win this medal in biathlon in either Olympic or

Sitting biathlon skiers use a sit- ski(a seat attached to a pair of skis) and they pole their way around the cross country course with an exhausting double-pull technique. Andy's disability is that of a double above knee amputee. He sustained this injury   in 2005  when a roadside bomb exploded next to his Humvee in Iraq.

Wheelchair Curling in the Paralympics

Curling is an all inclusive sport and there is no classification system.  Any person using a wheelchair is eligible to apply.  The USA Wheelchair Curling team came in fourth at the 2010 Vancouver Paralympics. First place was Canada who won gold, silver went to South Korea and bronze to Sweden.

Jaqui Kapinowski with two of her USA Wheelchair Curling  teammates. Jaqui loves racing. She has completed 52 marathons and has crossed the finish line many ways including running with a walker and in a push rim  wheelchair. It was James Joseph (jimmy jam) who introduced her to the sport of Wheelchair Curling. James lost both his legs in 1987 when he was pinned between two vehicles. But this has not kept him down.

Another member Patrick Macdonald who is new to the sport(just two years) lost the use of his legs when the army vehicle he was riding in rolled over on the way back from a patrol in Korea.

Augusto Peres from Syracuse New York was originally from Spain.  He came over here to the U.S. for his senior year of high school and stayed. He attending Paul Smith and then LE Moyne College.  Three bouts of a rare form of cancer resulted in amputation of his left leg.

The last member of the team James Spears is also from Syracuse New York.  He came to the sport reluctantly but when he realized it's like playing chess on the ice he was hooked.

SLED HOCKEY

Sled Hockey which was developed in Sweden became an official Paralympic event in 1994 at Lillehammer,Norway.  Since that time it has become one of the most popular Paralympic events.  Sled Ice Hockey is essentially played to the same rules as regular ice hockey.  There are slight accommodations which would be needed because of the disability.  For example they use adaptive sleds and are strapped into them. This restriction of mobility eliminates the need for any classification. All are made equal by this restriction.

 Team USA wins Gold in Sled Hockey at Vancouver beating Japan 2-0.  This victory makes United States the first nation to have two gold medal winning set hockey teams.  This outstanding young team completed a five game unbeaten streak of games to bring the gold medal back to the U.S. for the first time since 2002.  For more information on the team and its members go to U.S. Paralympics http://www.teamusa.org/

And when you go onto this site and winter sports are not your main interest check out the other sports like in the summer Paralympics. Here there are many more different sports. If there's one you yourself play or have a special interest in check out how they use adaptive equipment.  The use of this equipment allows people with disabilities to use their outstanding athletic ability to also play that game that you both love.

                                         ellie