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05/25/11

Permalink 03:40:00 pm, by eleanor Email , 897 words   English (US) latin1
Categories: my life, exacerbations, Thoughts

MY TV SET JUST HAD AN MS ATTACK

Well not really, but as I was in a small MS relapse I guess the similarity struck me.  What similarity ?  Basically it was a conduction problem.

We had had a lot of problems getting our HD channel's and finely we couldn't get them at all. This happened after we changed our yearly subscription with our cable co. Time Warner.  We had had a special deal for a year when we added the telephone to our Time Warner package. That special deal was over so to save money we attached their box that would give us our HD channels.  But then we started having problems. 

So we called the cable co. and they sent a technician. He took out his diagnostic tools and found that our signal to the TV was much too low. Yet he could see that I was having no problems with the computer. So he figured it must be something in the dividing area that split the TV and the computer.  After going down to our basement checking out the cable connections several times he finally discovered the problem.The problem was a conduction problem due to a short P3030001circuit.

Coaxial Cable (the type that transmits TV signals), works via two separate conduction paths, the central copper wire, and a conductive mesh surrounding it.  However both conductive paths have to be kept separate or else electricity will leak from one to the other creating a short circuit.  In this case one strand from the mesh was accidentally pulled into contact with the copper wire. As a result, the two conduction paths came together causing the signal to leak.   Hence the signal looked like it had traveled down 600 yards of cable and was too weak to reliably produce an HD picture.

Sound familiar to us with MS. We who have our own shorts circuits in the  conduction of the nerve impulses of electricity coming from and to specific centers in our brain. Those nerves traveling down our spinal cord conducting the nerve impulses from our brain when affected will cause us to be clumsy, be slowed in our  walking. unable to walk only very short distances or not at all.  And that was exactly what was happening to me at that time.  It's interesting because when I asked the technician what was wrong and he explained it to me I understood immediately.

I understood because it was conduction.  And all he had to do was find that one part and  replace it and it would be perfect. I jealously thought how easy that was. Now for me in my small relapse I would have to wait until my body healed itself. The attack on the myelin sheath surrounding the nerve would have to stop. Then the inflammation decrease and my body remyelinate the areas. And the word (areas is key) because MS attacks more than one place on the nerve and in the body during the attack.  See my previous blog MS AWARENESS  from 3/11/10 which explains this in more but understandable detail.   click here for the information

My son who wrote the part about the coaxial cable and I started to think of ways how we could maybe use technology to replace this damaged myelin and speed up the process of healing. And laughingly we suddenly  thought of nanotechnology. We could take some nanobots with codes to locate and mark demyelinated nerves and inject them into my body. Then follow up with more nanobots with codes to stimulate the nearest oligodentrites (the cells that produce the myelin) to the marked sites.  They would be programmed to speed up production and get to work remyelinating those nerves.

When I was in bed that night half asleep I started thinking about it. And my imagination took off. I was lying on a treatment bed and they were injecting Nanobots into me that would locate my demyelinated or poorly myelinated nerves. The room had an old MRI machine and the latest new MRI machine with a wall computer and monitors like on NCIS . And I was in a balloon shaped helmet from my head  down my chest to the end of my spinal column . This was the latest MRI feature. They were turning it on and off but it didn't feel as strong with it's bang-bang-bang as on previous MRI's I'd had.  I also didn't feel as encased as my eyes were not covered and I could watch them tracking everything . I was able to watch them moving information all over the board.

Then they announced that it was time a to do the new round of Nanobots. Up popped a life-size 3D nervous system replica of me which they extended even larger. This was similar to what one would see on the TV show Bones. With this they were tracking the stimulation of the Oligodendrocytes which of course they could magnify to infinite levels. It was mind blowing! At that point I fell asleep. So I don't know what happened after that.

However I woke up feeling great!!

It might have been just the positive energy that I felt from letting go feeling down.  Or perhaps it was the creative act of imagining outlandish possibilities. Whatever, my burden was lighter and I was ready to move on. To begin again within the limits that this crazy disease MS imposes on me.

Wishing you a lighter burden too!                                 Ellie     

Permalink 03:39:00 pm, by eleanor Email , 908 words   English (US) latin1
Categories: Announcements, Advocacy, Thoughts, Adapting Activities, information

WORLD MS DAY-2011-EMPLOYMENT

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The first World MS Day was launched on May 27 , 2009 to increase awareness of Multiple Sclerosis and to help people with MS live fuller lives. This year they are highlighting employment as a means to help people with MS live these fuller richer lives. See   http://worldmsday.org/

Why employment ? Because although many people who have been diagnosed with multiple sclerosis are able to work after their diagnoses many more others have to give up work.

There is no doubt if there was more understanding of the disease it would enable them to stay employed.  In many ways I think of this as being a hangover from past discrimination.

Not only is it important for a young adult's self realization to be employed but also for emotional and psychological well being.  Supporting a family , starting and advancing in a planned a career requires you to be employed. Most people with MS make adjustments along the way and are practical about what they choose to pursue based on the disease and its possible progression.

There is also the question of money. MS is a very expensive disease. These new wonderful biological drugs and the other new drugs coming down the pipeline that make a marvelous difference in a person's ability to be more functional are frightfully expensive. If you don't have good Health Insurance or are not very very wealthy you may not be able to take advantage of these drugs. In many ways it's like a catch 22. If you have a good paying job the chances are you have good health care coverage too. If due to MS you can only work part time having Health Insurance coverage to pay for these drugs is rare.  Also if you change jobs and MS is a prior condition you may lose Health Insurance coverage. And you may not be able to afford to buy it yourself.

Making the necessary modifications in your home as you progress like, putting in ramps,accessible bathrooms,kitchens etc.is not cheap.  And buying adaptive equipment from crutches to wheelchairs, visual and cognitive aides etc. which you might need to be able to work takes money.

Then there is that "Fatigue" factor. And the fatigue from MS is not a normal person's fatigue. There is no specific thing you due that causes it because it is Neurological fatigue. This is why people are told to take naps. Essentially they are shutting down their CNS (Central Nervous System-brain and spinal cord nerve tracts). Then when enough time elapses letting it reboot. (Like your computer).

It's also useful to do preventive maintenance like resting before an event or using an appropriate assistive device part of the time to save limited energy due to CNS involvement. When I was employed I would go to bed at 9-930 at night because I needed a good night's sleep. I also laid out my clothes and anything else I would need the the next day the night before. Then when I woke up I didn't tire myself out before I left the house for work. And at work when I became more involved I was very careful about how I used my time.

Going away on a special event whether for business or pleasure always requires very careful planning. Resting before hand as well as packing.That way nothing will have to be done that will exhaust you before you leave the house.

I recently went to a wedding in Boston. My husband and my younger son shared  the driving and I sat in back.  This way I was able to completely rest on my way up to Boston and save my energy for the event. I used my wheelchair too when we arrived that night before the wedding so I could be well rested. 

I also smartly used my wheelchair at the wedding even though I was in a remission and could walk a distance. By using my wheelchair I was able to sit yet be part of a talking group  That way I saved my energy for walking with my cane where it would be difficult to use a wheelchair. And of course having a dance with my husband -That was special! 

Now here in the United States where we still don't have universal Health Care increasing your functional ability to be employed can be a great problem. Because if you don't have Health Insurance and can't afford these new drugs or adaptive equipment you are losing out. Because as I know from personal experience the drugs for MS basically can enable you to have more energy, have less progression of your disease and have less relapse's.  And the home modifications and adaptive equipment ensure you can go that extra mile that otherwise you could not do.

So it's a double whammy.  You don't have access to the medication and adaptive equipment that would help you be employed because you have to have employment to afford the medication and the equipment.  If you are unemployed or moved onto disability insurance or SSI you are forced into a life of a poverty. But if you were allowed to use your talents by modifications and adaptations and you could get the proper medication you could be a contributing citizen. You could be making contributions to society thru your employment. And you could be paying taxes that help the economy and other people And you could have many,many beautiful days.

Watch this Video  "Beautiful Day"video uploaded by MSIF Media

 

ellie

Permalink 03:39:00 pm, by eleanor Email , 1202 words   English (US) latin1
Categories: my life, Thoughts, Adapting Activities, information, Technology

THE COMPUTER IS AN IMPORTANT PART OF AN ADAPTED HOME FOR THE DISABLED

When I was down getting my sol-u-med IV treatment at my doctor's office this past week the rest of the people there were commenting how important our homes are to us. One of the guys  said that he almost didn't want leave his home because everything he needed was so handy. He was commenting that especially on a heavy fatigue day it saved him. In fact it was just so comfortable his whole life could almost be inside the house.

I know this is true for me. I have found that the longer I've had MS and become more disabled my adapted home environment allows me to do the things I want to do. And it's easier to pace myself. If I'm tired I can punt or take as many rests as needed to recharge myself. Without my adapted home my life would not be so full.

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For me the computer has been an important part of my adapted home. As I am a bit of an information junkie I Google, Bing, or yahoo very freely.  I don't have to lift up my books from my shelves, then find the page all I do is enter- click- scroll and find the right source.  I also use it for arm chair traveling. If the story in the book I'm reading takes place in a different country I go to the Internet and review information about the area on that site. It enables me to live in the time and that part of the world that my story is occurring in. It's also invaluable in current events.

I also search for information for my blog. It's important to me to be accurate when I write. I also do research on a subject just for my own information. Then if it's relevant I like to share it on my blog.  And of course I would not be able to write my blog if I didn't have my computer.

When I'm writing  I use voice recognition too. This way I can just sit back ( which I'm doing now) and talk into my microphone.  Then go back and edit my ramblings to make a more finished product.  This allows me to not overtire my hands and arms.

I also use an ergonomic keyboard which makes it very very comfortable for me to type.  And to also use the keyboard shortcuts which save energy and time. Oh yes I do use my mouse also.  Or rather my trackball.  My family took the time to find a good trackball mouse that's good for me to use.

But for many things the keyboard shortcuts are the best. With the mouse you have to take your mouse pointer bring it up click it here click it there etc. I definitely  have cue cards so I can remember my shortcuts. I put them on my smaller monitor and bring them up when I need them.

If you see the picture  with me here you can notice that I have two monitors. One  very big screen and a smaller one. Most of what I'm using I was given or as a hand-me down by my sons or my husband. The only thing I've really Insisted on was a non- glaring screen and a decent keyboard. But then when I read about speech recognition I wanted that too for a Christmas present!

The size of the monitor is very helpful because I do have some loss of visual acuity with multiple sclerosis, cataracts and moderate macular degeneration. I'm also getting older and this way I can be tired and keep going by enlarging the type and it stays on the page. This also helps to lower my cognitive fatigue. Another thing that I find very helpful is a program called Readability. This program allows you to eliminate all that stuff on the sides of the page that you're reading. If you have a problem with not being able to zero out visually distracting items like me Readability will save you tons of energy.

Being organized is absolutely critical when you have MS or any other disabling condition. It's not just physically that a disability can be limiting but it  can also be due to fatigue, cognition, visual or auditory or all of them. So not wasting energy is critical to having a full life.

I am learning to use my computer to keep much of my life organized. I use One- Note which is part of Office 2010.  And it has been a wonderful addition. I aids me enormously in storing in an organized program all of the information I want to be able to access quickly. I use it for all my health information, the purchases I make, recipes, books I have yet to read, as well as DVD's and movies that I would like to see. One big use I have it is for a listing of all of the plants that I have put into my garden as well as my houseplants.  I also have the information related to the care of each one of them.

I also bookmark sites that I want to return to and try to keep them listed so they are easy to find. Of course there are some articles that I think would be better saving as documents so I do that for them.

To the right of my table is a scanner. Using this I can scan pictures or articles from books or magazines into my computer. Once saved I can add the pictures to documents, or use One-Note to automatically extract text. Or I can modify it with Paint.Net as needed and then e-mail it or print it up to give to somebody.  It's been very helpful in scanning and cleaning up our old family pictures, which I then loaded onto an online family history.

Anther example of this is my doing the hymns for my church. I found that holding the very heavy hymn book and reading smaller print and standing and singing was just too difficult for me. So I decided to request them to send me a list of the hymns that they would be using. For several years now every month I receive a listing of the hymns they will use in the Sunday Service that month. I scan them into my computer and clean them up in Paint-Net, and save them as documents in my Document Hymn folder.  Each month I print the hymns I need and put them in a binder to use in church. I make several other copies besides my own for the other members of my congregation. I pick up the folders after each month and place the hymns in one of 2 large loose leaf notebooks to use another time.

By doing this I help myself to be able to more fully participate in the Service and help others with needs too. With MS there are many things I cannot do for my church . Being able to do this little thing is important to my sense of belonging.

The NMSS has many useful (288) articles regarding the use of technology . On my search I  came to page  http://www.nationalmssociety.org/search-results/index.aspx?q=computer+technology+&sitesearch=&x=25&y=9&start=0&num=20   To find their info. Do check it out.

Ellie

Permalink 03:36:00 pm, by eleanor Email , 476 words   English (US) latin1
Categories: thoughts, adapting activities, Gardening

BACK IN THE GARDEN AGAIN

The bulbs my family helped me plant in the fall are all coming up. It started with the crocuses in the middle of April. Then the Siberian Squill and the small Purple Irises poked up to welcome the big ones. The Tulips, Hyacinths and Daffodils.

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Every time I walk past a hyacinth I bend over to breath in their lovely fragrance.

Watching the tulips and Daffodils unfold their petals to the welcoming sun will

never stop amazing me. And of course the different colors grouped together is so pleasing to the eye.

By grouping them it also makes it so much easier to plant them. You just dig a trench to the proper depth and put in 4 or 5 bulbs. Cover them and wait for their arrival to perk you up in the early spring.  Truly they re-enable the soul.

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And then the Spring work is needed to bring the rest into their beauty. The picture of me above is planning how I want to move my rose vines up on the trellis to start them over the arbor on my ramp. By planning ahead when my son can help it's so much easier.

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Above are pictures of our wonderful veggie garden.

My son's do this by totally organizing where they put each seed or plant. Many plants must be rotated each year as well as grown under lights or a cold frame to produce seedlings to plant. And plant they do. Once you have eaten your freshly picked vegetables all spring, summer and fall you'll know why we do it. Michelle Owen's explains this so eloquently and the why she loves her vegetable garden in her book " Grow the Good Life". For more on this inspiring gardener/author go to :http://www.michele-owens.com/index.html

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Here you'll see my son lay out the grid for putting in the seeds for the 24 different salad greens in my raised salad garden. Oh yes I helped putting in many of the seeds. With time that will be filled and beautiful like last year. UPDATE ON MY RAISED SALAD BED Planning ahead and being flexible to needed changes has been just as valuable for me to access our garden.

With ramps, raised beds and accessible paths, area's of shade as well as sun make our garden my garden too!  Depending upon how my MS is acting up on any day I can use my wheelchair,walker,crutch or cane as needed to work in or just be refreshed by being in nature right outside my door.

It truly is a Family Garden for a person with a disability too.

If you clicked onto UPDATE ON MY RAISED SALAD BED   you may have continued onto the next blog : how to make a raised garden bed 1  If you didn't you may want to check it out as it tells and shows how my son's made the salad bed.

                                                         ellie

 

05/05/11

Permalink 09:18:55 am, by eleanor Email , 529 words   English (US) latin1
Categories: thoughts, Coping, Advocacy, adapting activities, Adaptive Sports

COMMUNITY SUPPORT AND THE "GLIDING STARS"

Winter is leaving very slowly here in upstate N.Y. However the tulips are finally coming into bloom.  Soon there will be so many events of walks, runs, biking, golf etc. in the city and state parks, on our tree lined streets and at our Saratoga Flat Track and Raceway.

It seems that spring and summer brings everyone out to participate in some event for a cause that's dear to them. It makes you proud of the community you live in when you see that you are surrounded by people who care about people who have needs. And also that they are willing to expend time and energy to help meet those needs.

However running or walking to raise money for causes is not the only way that you can do something to help people who have needs. Most could also benefit from your direct and personal help.  One example of that is what happens every winter here and in other communities across the country on the ice.  The non-profit organization the Gliding Stars is an adaptive ice skating program to provide individuals with disabilities the opportunities to increase their personal potential through developing ice skating skills.

This program was established in 1994 by Elizabeth O'Donnell an accomplished figure skater.  It operates through local community Chapters. These Chapters are managed by Coordinators with the assistance of many volunteers, specially trained ice skating instructors and community donors. It's here in the Chapters where the special on- ice activity takes place. It occurs over a 12 to 26 week skating season in the winter. At the end of the season in April each chapter provides a publicly attended Ice Show.

Here in Saratoga Springs it's the Lions Club that is supporting this program.  Thimageey cover the cost of ice time on the ice rink and purchase the special adaptive equipment to match the needs of each of the skaters. This adaptive equipment is essential for people with disabilities.

The two main pieces of adaptive equipment are walkers and ice skates.  The special walkers that glide over the ice come in three different models. This way they can meet the different level of a person's ability to walk. image

And there are also three different models of adaptive ice skates. People with AFO's, SMO's and those with Down's Syndrome or surgically corrected club feet all have specific needs for their skates to give them appropriate support. 

But most importantly the Lion's Club is totally supportive of their skaters as well as the program.  Over the winter sessions you'll find the Lion's and their family's spending their time with them. You'll see them assisting them during the sessions. Encouraging them, lacing up their skates and offering all kinds of assistance on the ice and off the ice.

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"I Can Do it!  I Can Skate!"

 

Video's of The Saratoga Gliding Stars Ice Show

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Video describing adaptive equipment at Saratoga

 

 

The Gliding Stars Ice Show video taken at our city ice rink

 

For more information on the Saratoga Lions participation go to their Facebook Page at:

http://www.facebook.com/pages/Gliding-Stars-Saratoga-Lions/121491481210624

 

For more information on the Gliding Stars go to:

http://glidingstars.org/odonnell.html

 

ellie

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