VICTORIA STATION

What happens to someone with ALS?

In ALS, nerve cells that control muscle cells are gradually lost. In most cases, the cause is unknown. As these motor neurons are lost, the muscles they control become weak and then nonfunctional. Eventually, the person with ALS is paralyzed.

Death, usually from respiratory complications, typically comes between three and five years after diagnosis (some studies say after symptoms are noted, so the timing is unclear). About 10 percent of those with the disease live more than 10 years, and some survive for decades.

Modern technology has allowed people with ALS to compensate for almost every loss of function to some degree, making it possible even for those with almost no muscle function to continue to breathe, communicate, move about and use a computer. Longevity statistics may be somewhat out of date because of changes in supportive care and technology. For example, British physicist Stephen Hawking has had ALS since the 1960s and is still able to write and practice his profession.

It’s important to note that the involuntary muscles, such as those that control the heartbeat, gastrointestinal tract and bowel function, bladder and sexual functions are not directly affected in ALS. (However, prolonged inability to move and other effects of ALS can have some indirect impact.)

Pain is not a direct consequence of the disorder, although moderate pain can certainly occur as a result of immobility and its various complications.

Hearing, vision, touch and intellectual ability generally remain quite normal. Some people experience loss of control over emotional expressions such as laughing or crying, a phenomenon thought to be directly related to the disease process.

Of course, in such a devastating disorder as ALS, it’s natural for people to feel angry, sad or depressed, whether or not they experience unwanted emotional episodes.

I am not one to ask people for donations of money, no matter how worthy the cause. It is simply not in my nature to do so. In this case, however, because my husband has ALS and any money raised by donations to the MDA will directly affect his quality of life and the research needed to find a cure for ALS, I am asking you for your help. Most people donate $25, $50, or $100, however, you can give whatever you are able.  It is unlikely that a cure will be found in Martin's lifetime but having seen what this disease can do I pray that a cure will be found to help all those who come after.

Simply click on the link at the beginning of this post or click on the link shown on the right side of this page under 'MDA Lock Up' to make your donation on line.

Thank you.

It must have had some effect on me because I found myself feeling better. After watching the video I went to get Martin some lunch, which he attempted to feed to himself, but after only a few minutes his arms grew tired. So I sat and fed him Fritos while we talked and I looked at the latest issue of Artful Blogging. I found that I suddenly felt totally at peace. It was a rare moment. Oddly enough, so many of the things that Martin can no longer do and that I have to do for him have made me feel so protective of him. Watching him struggle so valiantly to do a simple thing like put a piece of food in his mouth makes my heart ache and for some reason I cannot explain, endears him to me even more than anything he has done for the last 30+ years.  For so many years of our marriage it has been Martin who took care of me. Now it is my turn to take care of him.

Do not dwell in the past, do not dream of the future, concentrate the mind on the present moment. ~Buddha

Windflowers by John William Waterhouse

Forget not that the earth delights to feel your bare feet and the winds long to play with your hair.

~Kahlil Gibran

The Pretty Baa-Lambs by Ford Madox Brown

She walks--the lady of my delight--
a shepherdess of sheep
Her flocks are thoughts;
she keeps them white
she guards them from the steep
she feeds them on the fragrant height
and folds them in for sleep.
THE LADY OF THE LAMBS
Alice Meynell

The Bunch of Lilacs by James Jacques-Joseph Tissot

The spring is fresh and fearless
and every leaf is new,
the world is brimmed with moonlight,
the lilac brimmed with dew.
Here in the moving shadows
I catch my breath and sing --
my heart is fresh and fearless
and over-brimmed with spring.
Sara Teasdale

When Flowers Return by Sir Lawrence Alma-Tadema

When Flowers return
And all the woods are alive
with the murmur and sound of spring,
And the rosebud breaks into pink on the climbing briar,
And the crocus bed is a quivering moon of fire
Girdled round with the belt of an amethyst ring.
Wilde

Spring by Jean Leon Gerome

The naked earth is warm with Spring,
and with green grass and bursting trees
leans to the sun's kiss glorying,
and quivers in the sunny breeze.
Grenfell

Les Fleurs du Printemps by Arthur Hacker

Sitting quietly, doing nothing,
Spring comes, and the grass grows by itself.
The Gospel According To Zen

Flora: Spring in the Gardens of the Villa Borghese by Sir Lawrence Alma-Tadema

Now Nature hangs her mantle green
on every blooming tree,
and spreads her sheets o' daisies white
out o'er the grassy lea.
Robert Burns

The Return of Spring by William Bougeureau

No matter how long the winter, spring is sure to follow. ~~~ Proverb from Guinea