I want this
site to be a comfy meeting place to exchange thoughts,
advices, and resources about life
with or without SMA. Wherever you live, come here and see
that we have a lot of things in common.
Russian, English, Italian, Polish, French (2 last
understand but don't write)
Psychology, Literature, Music, History, Culinary, Art.
Everything not connected with technics and numbers.:-)
Hi, I'm Irina from
Russia. My hometown
stands on the west bank of the Volga
River. I'm sure the name of my town is as unknown for the
majority of you as the name of spinal muscular atrophy (SMA) for
the many happy people who have nothing connected with it. If you
are reading these lines, it's possible to assume that you have
been "blessed" to live with spinal muscular atrophy or some of
your relatives/friends has it.
Why do people create sites? Some feel
they have many things to tell the world. Others just
want to become famous and are ready to do anything just
to reach their goal. Well, I am quite a different case.
I started this site for the simple purpose of showing
other people with my condition that they aren't alone.
Until recently I lived in absolute isolation from the
world of people with SMA and it seems that I'm a kind
of dinosaur not only among healthy people but the disabled
as well. A lot of effort from my friends was needed
to make me open my eyes and start searching for information
about my rare disease. I was sure that nothing useful
would be found because it was quite clear that there
weren't any medicines or treatments for SMA. All variations
of equipment were merely magic things from a fairy-tale
which had nothing in common with my reality. Occasionally
a story from an unknown person's life can help better
than an entire truck load of medicines. It was
easy to say, "I'm going to make a site" but
after the initial enthusiasm disappeared the numerous
doubts crowded into my head. There are quite a few sites
for disabled people, where it's possible to find answers
to nearly any question. What new and important things
could I say? If you are looking for articles written
in serious tone with plenty of medical terms then this
page isn't for you. Sorry, save your time and search
some other place. I'm tired of feeling lonely and isolated;
there is no possibility of leaving my "prison"
on the fourth floor without an elevator.
But thanks to
God there are two things (my computer and my imagination),
which combined can give me a slight chance to create
an illusion of communication. Let's pretend that you
have come to see me just now and we are sitting at the
table with couple of cups full of
(tea or coffee?
By the way, what do you prefer?)
a hot drink.
The best way to know each other is by asking questions.
Feel absolutely free to ask, please, touch any subject
you feel the need to discuss. Do ordinary people, by
whom I mean people besides doctors, ever speak about
medicine as it is described in scientific articles?
Even if you do like to speak like that, such speech
would add nothing to my understanding. My poor English,
not native and not excellent, doesn't allow me to play
the part of an expert. Besides I'm sure even the most
difficult subject could be talked about the simplest
way and without any damage for the depths of its understanding. First
of all let me introduce myself. To make you feel more
comfortable I'll tell you about my life up till now.
Please help yourself to some of the biscuits my sister
has baked. (Well, sure it's all virtual, but what is
your imagination is given you for?) if would have patience
enough to read my Home Page through to the end perhaps
some questions could appear. Go ahead and ask me! But
first, please, write few words about yourself in my
Guest Book. I say 'a few words" for those who hate
writing, but if you feel the need to tell your life
story it would be greatly appreciated. I'm a very curious
person and every detail about you is interesting to
me (and other people, as well). Then it will be my turn
to ask you questions. In such a way, bit-by-bit, we
would communicate not like speakers from the tribune
but like friends. You have my apologies for using the
word "friends" if it is too soon for you.
good neighbors. What will we talk about?
Our lives, of course! I mean, daily life with all it's
troubles and problems, funny and merry things, our family
members (what is better? To have them or to live alone?
Everyone has his/her own answer, that is part of what
I hope to know.), perhaps your travels (help me see
the world with your eyes!),
OK, I guess, you
get the main idea. Write about any thing you find interesting.
Have you ever seen a person who doesn't like to give
advice? It's harder to find a person that who really
needs advice and then uses it in life. Here you can
feel absolutely free to teach others how to resolve
some practical problems. Let's share our every day wisdom!
I'm sure you have some secrets about how to cope with
weakness and impossibility to do this or that. Open
the page with advice and you'll see more clearly what
am I talking about. Well, it's enough to torment you
with this lengthy introduction. Your tea is getting
cold while I'm chattering on endlessly. Have a good
time and read only those pages that you feel the need