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.


What kind of exercises does help you? Any system? - You can read here.

Have you been in a rehabilitation center? - Never.

August 2003. My relatives and Italian friend.

Have you passed any course in hospital? - Yes, several times...without any result.

How long can you stay sitting during a day? - About 2 hours...if longer so my back hurts badly.

Do you need any help during the night? - After my recent trip to England I've understood how happy I am. My simple metal bed lets me feel independent. I don't need anybody's help during the night. But while my visit to the UK I was sleeping in an electric bed which made me feel trapped...no movement without other's help.

Can you sleep on your back? - No.

Which food do you try to avoid for not putting on the weight? - All kind of sweets, floury things, too fat and fried.

Do you get any help from the social services of your country? - Absolutely nothing. Only help they can offer it's shopping, but my dad still is able to go to shops and market.

Have you any possibility to work? - I should work very hard or wouldn't survive. I give private English lessons ($10 per lesson), create sites and banners when I find customers. In past I translated from English, Italian, Polish and even German which I know with dictionary. Now I can't earn such way because it's hard to type in my bed. This is a photo of my "working place".


 
How often do you go outdoors? Do you travel sometimes? - During last 20 years I could go outdoors 1-2 times per year. The only trip I had was in November 2011. I have no possibility to go to doctor or somewhere else. I've never been in restaurant or club. Last time I went to the theatre when I was 12 y.o., last time in cinema, when I was 15 y.o. I have never been dating, no sex...just like a true life imprisonment.
 
What helps you to cope living with SMA? - I haven't choice....so I should fight.

 
Who helps you with toilet and bath? Do you pay for this? - My neighbour comes to help me with toilet and dressing every morning and evening. I pay her $130 per month. I also pay to a woman who cleans my flat once a week...$50 per month. I must pay for electricity, water, heating, Internet...over $200. I need eat sometimes and buy medicine....all this from my pension which is $320. If I need help of a personal care assistant...this would cost me about $1620. Cool mathematics!
 
Have you got a hoist? Did you buy it or get for free? - No, I have never had one. My dad raises me to wheelchair risking to break his back. After returning from England I searched for a hoist. Well, it costs $9678! Here in Russia none can get it for free. We get wheelchairs but not hoists. When I asked a director of the shop how to be, he said smiling: Look for sponsors!