Living Well With MS & Disabilities: Ellie's Blog

Last week my two wonderful sons put up  a ramp off of the bridge going over our back yard which runs from our house to the deck.  This ramp allows me to go down to our garden to where my raised salad bed is.

  So on days when climbing down           those  steps to the garden and standing and walking is not that good                                                       I will always be able to pick my own greens from my raised salad bed.

  It's easy for me to go up and down the ramp with my wheelchair or my new walker.  If my walking is gone after I've been out front or I'm not good I can go back up the ramp by sitting on my walker and  push myself up backwards very easily.

In every way this new walker was a wise choice. The larger wheels make it easier for me to go over grass, gravel or bumpy dirt.  This walker also has a basket with space to carry my gardening equipment.  And of course I also can more easily check my plants like my Climbing Fairy Rose Bush and other plants on that side of the garden.

In addition it allows me easy access to the side of our house to check on the plants there too.Then I go around to the front where I garden also. As I have also  put in a lot of time and thought there too. So it's important for me to check that out just like I do in back.

And Rejoice and welcome each plant that reappears or newly appears. Or like the tulips opening up! Have a wonderful Spring

ellie

My son's will be putting together a slide show on how they made the ramp. So be sure to check back if your thinking of putting up a ramp, They put mine up in 2 days!        ellie

Last Tuesday I was down at my Neurologist's office having my monthly IV Sol-u-med treatment.  There were four other patients there also. We were all of a similar age and had had MS for years. We had adjusted to our losing function by adapting to continue to have a good life.

I was feeling good coming out of my last relapse and a bit chatty. The room has low light a very easygoing nurse and comfortable chairs which produces a restful environment.  We started talking about things that were of mutual interest and found that the ways we have been accommodating multiple sclerosis in our lives was quite similar.

For example: we started talking about how much we like using the computer. And we found that we were all dependent to quite a degree on the information given to us by our children and grandchildren. Then laughing we shared that they all were giving us too much information too fast!  They didn't do it on purpose. Their brain's just worked faster than ours now did.

We also were finding similar ways to compensate for this too. We unanimously agreed that having them write it down so that we could do it at our own speed was the best.  And it was a unanimous very strong no- no to giving us two or three Windows Shortcuts at the same time.  One at a time is our speed.

Then we moved on to talk about gardening which was a love of us all.  I had just recently received three Rose Plants from the Antique Rose Emporium in Texas.  I shared how I want to use them as a bower over part of my bridge that goes across my yard to get from my house to the deck.  One of the group there had a husband who loved planting roses so we shared information on roses.  And when we talked about our vegetable gardens I had to share my raised salad bed too. One person was going to try the upside down tomato plants as her dog was into everything. As we all had dogs at some point,we understood.

And of course the conversation came around to the heat problem. In the summer for all of us it was early to bed and Early to rise so that we could get out before it got hot. When we went out we all brought our cell phone's with us so if we stayed out too long and couldn't move we could call to get help back into the shade.

I've been thinking about this conversation throughout the past week. I've been trying to figure out why it seemed to be so satisfying and meaningful to me.

Could it be that over the years we had had to face and learn to live with most of the same problems with MS. And over these years we had all learned to adjust to our losing function by adapting to continue to have a good life. None of us were giving up on finding ways to continue in some fashion doing things that we love to do. I think it was because of this there was a real emotional connection of similar problems we faced . 

For example most times when I mention heat being a major problem limiting how much I can do outside in the summer to non-MS people I feel a sense of disconnect. There's no gut emotional connection that you feel they understand. But this is what I was getting with the other women from our talk .

But then when someone talks to me about their divorce or the loss of a spouse or child I can't that say I have a gut emotional understanding of their situation either.

You can understand other people's issues on a much deeper level if you have had a similar experience. You can try even if you haven't had the experience but it will not be a gut emotional connection with that person.  I'm sure that this is the reason why support groups are so popular.

I know of people whose only friends are those in their support group.  I haven't done much with support groups and when I tried it didn't meet my needs.  However this casual conversation with like people was very important to me.

It was also a reminder to me not to expect the impossible from people who haven't walked in my shoes.   ellie

This is a don't miss event.  We have no coverage in the USA on the major networks of the Paralympics during the events.

But there is going to be a recap of the highlights this Saturday from 3 to 5 PM ET on NBC  If you already have plans- tape it to watch later.

  NBC did a similar program after the summer Paralympics in Beijing. I watched it with my family they all agreed it was marvelous, inspirational, would not have wanted to miss it.

                                                         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