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May 2005. Freedom by lake. |
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.
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August 2003. My relatives and Italian friend. |
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.

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!
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