The pieces of the amber...or living with SMA.

After staying at home during many years I see my life like a  scene from a movie. When someone is falling from a huge cliff and the very last moment has a  luck to catch a dry, dead bush hanging not too far from the edge.  Sure, it isn't very comfortable to hang there as a pear but it's much  better than to lie on the bottom of this abyss. Making a little effort  it's possible to see normal people's life and from time to time  some of them come closer to talk about their problems. They sit down  on the edge dangling their legs down and start telling what a hard life they have. Of course I haven't all diversity of their  problems (love affairs, kids, work, travels), my only one is to be able hold myself hanging.

Russian cartoon "Masha and Bear"

Merry Christmas to everyone! And here is a small part of my favorite Russian cartoon "Masha and Bear". No need to translate the song...sure it's about holiday.

The making of Claire Bear by Karen Wheeler

This painting was started in January 2011 and completed in June 2011. Incredibly alive image.

The genealogy.

My great-grandfather Timophey...before 1917 year.

A  far relative has found me suddenly. He lives in Moscow and he tries to  build  our  family  tree just like me. Our great-grandfathers were brothers and their father had 10 children. A lot of people to find! ;-) I'm  just  curious about old times and it's interesting to see unknown people's  faces  knowing  that  we have the same ancestors. My closest relatives  don't  understand such strange hobby. Why wasting my forces and  time  not for earning my living but useless things. But I'm not a robot who is created only for work. At least something pleasant should be.

Folic acid

Folic acid (also known as vitamin B9) is not biologically active, but its biological importance is due to tetrahydrofolate and other derivatives after its conversion to dihydrofolic acid in the liver.
Vitamin B9  is needed to synthesize DNA, repair DNA, and methylate DNA. It is especially important for people with SMA. Children and adults both require folic acid to produce healthy red blood cells and prevent anemia.

Dreams.

Every summer I spent at my table painting for days one picture after another. Usually it lasted about two weeks and a thick album was full of my attempts to relax. It was so charming process to put the paints on the paper and wait what kind of image would appear. If my sisters were great in copying so I was on the contrary  unable to create something enough close to the original, it was easier to use my imagination than any real things or images. While painting I felt absolutely free to invent a story about those people who appeared from the brush. My mother told, " Again your dolls!" I just traveled in time and painting a woman in the ancient dress pretended to see all her life. National costumes also gave me a possibility to look into the other people's life with different customs and traditions. Lack of alive people around me crowded my pictures over norm.

The operation.

 The most of people with SMA are operated on the spine during their teenage period. If one still could walk, so after getting the straight back one is unable to stand or make a step. When I was 14 y.o., I was very close to such operation, but it didn't happen. For good or for bad but I was able to walk almost 20 years after that and till now I'm able to stand by pole. To pay for such ability I kept myself from long sitting. So...there is a choice to sit all day long or to save possibility to walk longer but without many hours at your desk. How was it in your case? Would you tell?

From time to time some doctors used to come to the boarding school where I studied for check-up. Once it was a young woman just after the medical university. She had prescribed me some injections and started to wait when I would feel better. During her studies she read in the textbooks that they were supposed to bring relief.. Well, I knew from the long life experience that nothing gave such effect. Meeting me on the stairs or in the canteen she asked every time with imploring look,"Do you feel better?" She was so nice and I felt pity to disappoint her so I always said,"Just a little better. Thank you."  :-)

Answers of Natasha Wood

I've sent  letters with my questions to some people with SMA and it was a nice surprise to get their answers.  Natasha Wood was among the first ones.


"Hello again and thank you for your kind words...
Am afraid no Russian history to the name, although my dad used to tell me a tale when i was a kid that my name was suppose to be Natalie but the vicar sneezed at my christening and said "n...aaa...t..iiisha". My dad is totally nuts and funny.

Bright persons with SMA

 When something goes wrong in your life the easiest way to calm down it's to blame your destiny. If I was healthy, I would... Everyone can continue the phrase as one did many times. But there are a few persons who live free and reach their dreams. Nothing stops them. I'd like to tell about 4 strong women who are enough brave to go forward in spite of the SMA.

Back pain

The back pain can come for a variety of reasons. One of the main is long sitting. I can tell about my method of fighting with it. First of all I avoid long sitting, so I use computer in my bed. Usually I sit only during my lessons and while eating. But sometimes it happens that you forced to sit for hours and after you feel quite broken.

My English Language.

In the Soviet Union the most of school children started to study a foreign language in the age of 11. Usually there were only two options to choose, German or English. French was learnt in a few of schools. In my first school I studied German. Almost all the girls had made such choice thanks to a very sweet teacher, who was a kind of our tutor a year before.

A new film about Vladimir Vysotsky

"Vladimir Vysotsky was and remains the icon of the 20th century Russian culture. More popular than Elvis Presley, more acclaimed than Bob Dylan, more worshipped than The Beatles, he was the most revered singer / poet the Soviet Union has ever known."
It took five years of work, a crew of 850 professionals and a $12 million budget to bring to screens the long-awaited movie about Vladimir Vysotsky. The movie tells about the last year of his life. The name of acter who plays role of Vysotsky is kept in secret. The makeup plastered on the actor to make him into an identical twin of Vysotsky reportedly cost $30,000.

• Vysotsky: Thank you for Living  Russia (1 Dec. 2011 ) Color; 2.35:1

• Official  site of the film

How can one fight depression?

Can you imagine a person who never feels sad? It’s easy…an idiot ;-) Well, and if to think better, all people live the main part of their life with sharp feeling of lack. One needs more free time, another needs better work, everybody does need money. People with SMA mostly are used to keep under control all wishes. There is too long list of impossible things. Just start thinking about walking, swimming, dancing, dating, traveling…and you get a perfect reason for falling in depression.

What kind of exercises can help you?

I tried to find a way to keep my muscles alive as long as possible. It’s really difficult without professional help. For people with SMA it’s very important don’t exercise to exhaustion. Wishing to get improvement you can lose even lack of your forces. The first rule: be careful!

Here are some methods and exercises which I tried and got good results.

• The method of Valentin Dikul
• The Vojta Method 
• Mental exercises
• The exercises with a helper

The despair.

   It's impossible to find a human being who never was in despair. May be it wouldn't be a big mistake to say that disabled persons more often have hard moments. Perhaps I'm making a wrong step touching this subject but it's a part of my life, too. Once I have started to describe my memories, the picture must be complete to be true.

The Boarding School.

    When I was 12 years old my mother had to leave her work at the restaurant where she was a chef cook. It was necessary to take me to school and meet after lessons, an arm was needed to hold during walking. She went to the factory where my father worked and they went to work such way that at least one of them was with me. One day one worked from 8 o'clock in the morning till 8 o'clock in the evening, the next was night  shift and afterwards two free days. It was very comfortable but soon I've become too weak for running from the one school floor to the other between the lessons. My four-storey school gave big problems to my slow legs. So my parents started looking for something more suitable.

The Winter

Saratov winter streets

The winter. This word makes me feel shiver. It isn't by association of ideas with the cold, sometimes really hard frosts and snowstorms. I clearly remember my eternal fear of falling walking the slippery road. In winter all roads are slippery. By sure there were some pleasant moments connected with this season but that image is the brightest of all. The short way up to school became impassable after a warm day and a cold night. Ice-covered ground made every one look like a clown, if it would be as funny as in the circus. After climbing the school hill poor creatures were tired and glad, a kind of alpinist's happiness. Every day's little victory didn't fill me with the joy, there was only constant fear of the falling and grave consequences. I couldn't allow myself "the luxury" to have the fracture. It could stay me without moving and my muscles would die forever. So many people have come to the wheel chairs thanks to the consequence of their fallings. Even an ordinary cold or flu could kill a person with such disease. 

The sanatorium

It happened that four early springs I met far from my home town in Caucasus. The sanatorium (health centre) stood at the edge of the huge forest, that covered the Mashuk mountain. It was 5 stored new building that has appeared among very old, or it's better to say antique buildings few years ago. Children from all parts of the Soviet Union came there and were provided with all the possible facilities. There was the myopathy health center on the second floor. I think, it was the only one in the USSR. There was enough place for 35-40 children from 6 to 16 years old. Can you imagine what an exploit should parents do to give their beloved child the chance to get that place 4 times? When I heart about going to the sanatorium for the first time, I was 7 years old, and hadn't an idea what did this word mean. Most of all I was afraid of operations, which I never had, and injections, which were made in plenty. I was told that nothing of those things threatened me. A little lie of grown-ups, like usually.

My answers.

May 2005. Freedom by lake.

When did you know that you aren’t quite healthy? – Just before going to school doctors said to my parents I have an incurable illness.


Did doctors give you the right diagnosis at once or after several false tries? – During 4 years the doctors tried different forms of myopathy on me. At age of 11 I was taken to Moscow where I’ve been given SMA III.

How old were you when started using your wheelchair? – For the very first time I used my wheelchair outdoors, when I was 30 y.o. It could happen earlier but during 6 years (before that date) I stayed at home without any possibility to get downstairs from the 4th floor. At home I use my home made wheelchair since 2005. A normal wheelchair doesn't go through the doors of my flat. I use an office arm-chair for sitting during my lessons.

Do you get any medical treatment? Did you feel better after some of them?- Yes, some medicine helps to feel stronger but every country has different names.