"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.
So nice to see your photos and to hear about you. I have type 2, as did my brother who sadly died five years ago. We were both in wheelchairs from kids and so strength was poor. However, i grew up in a cool mad house where my parents sold ladies underwear on an outdoor market. I used to use the stall as my stage and customers as my audience and would practise all sorts of accents and voices on them and write myself scripts. For example "we've got girdles, corsets, push up, pull ups, hipsters, briefs, tummy tucks or thongs lol". My dad said i could sell snow to escimos and i think he was right. So from a kid i always wanted to be on the stage. I took drama at college and then became an actor in London, this was in the late 80s but like all struggling young actors there were few parts for everyone let alone someone in a wheelchair. So I decided if i can't work in front of the camera i'll work behind and so i got a job at the BBC doing live TV shows. I was a broadcast assistant. I ended up staying, becoming a manager and my final post was running the BBC New York office. During this time i met a fab guy and married for 14 years. We were together young and sadly divorced a few years ago, very amicably. It was after that i accepted the job in America.
Anyway after a year in NYC i decided i wanted to fulfill my dream of being on stage, so i quit, bought a American car, had it adapted, drove across America and enrolled into a film school in Los Angeles. It was there that i wrote and began performing the show.
I'm very lucky as i have both a beautiful home in England and an apartment in New York where i go for the summer months. In terms of my care, when am home and working from home i have a team of care assistants that come in the morning, lunch, early evening and evening and when am away or working on set I take someone with me. I do prefer being home though now as i can manage in between calls and i drive both here and in the US.
Ok, to your questions - see below:
When did you know that you aren’t quite healthy?
My brother was 2 yrs older than me so by the time he was 18 months old and not standing my parents were getting concerned. This was 1969 and little if anything was known about SMA. However our local doctor knew off a specialist called Dr Dubowitz. He was based in the north of england but was on his way to London to become a Professor in neuro muscular disorders. He took one look at my brother and diagnosed it. By the time i was born a few months later they knew i had it straight away.
Did doctors give you the right diagnosis at once or after several false tries?
As above
How old were you when started using your wheelchair?
It was straight away. I never stood.
Do you get any medical treatment? Did you feel better after some of them?
There was never a treatment, just physio and calipers and body bracers to keep our back straight until spinal surgery when we stopped growing when we were about 13. We both had them. We didn't bother to much with calipers.
After my spinal surgery i don't think i saw a doctor for 25 yrs. Now because of winter colds and flus and respiratory i'm under a specialist who keeps an eye over me twice a year. Last year i had pneumonia and ended up in hospital which was a shock. I try to be more careful now in winter months.
What kind of exercises does help you? Any system?
I'm a massive swimmer now and have just build a fitness room to my house last year with a jacuzzi pool. I began swimming 10 yrs ago and lost 4 stone in weight and developed muscle tone doctors said shouldnt exist. But it is hard getting to the baths in and out of cold during the winter so last year i decided to build my own. I go in 4 nights a week and use the jacuzzi as a hot bath tub doing a 45 minute routine. I go on my back using a head collar and i do 1000 kicks and my version of 100 sit ups and 100 pull ups using handle bars. I finished the pool in Feb so got a good 4 months before i left for New York in June and so now am back into the swing of exercise for the winter. It helps me keep trim.
Have you been in a rehabilitation center? If yes, which one?
No
Have you passed any courses in hospital?
No
How long can you stay sitting during a day?
At the moment I'm busy so my morning care begins at 6am so am in my chair from around 730 am till 930pm on pool nights or 11pmish on other nights.
Do you need any help during the night?
No but my best friend lives in the house next door so if i get an emergency loo call i can telephone her. I don't like people living with me if i don't need it. In america i usually employ someone to come with me so there they have to be on site.
Can you sleep on your back?
Yes, I do and have had a special cubed shaped pillow made with cut outs. I could send you a picture if you want me to?
Which food do you try to avoid?
I've been on a protein only diet since eating to many carbs this summer in the US and over the last 10 weeks ive lost 10 pounds and am thrilled to be back in shape. I only eat one meal at lunchtime and then a small snack early evening. It's very important to me. I do however love deserts and will allow myself a treat a couple of times a week once am finished with my current diet in two weeks. Am very very stricked and friends say i have amazing will power. My brother was very big and i know he struggled a lot because of it.
Do you get any help from the social services of your country?
I get a care package from social services, not 24/7 but it is amazing and allows me to totally live independently and i have a hoist and shower chair.
Have you any possibility to work?
As you know, i do TV management work and i'm also now a TV and Screenwriter. I also do speaking engagements.
How often do you go outdoors? Do you travel sometimes?
I have to admit, am very lucky in the winter that most of my work can be indoors. I'm not a big social animal nowadays. I love movies but am an oscar voter so am lucky enough to get movie screeners sent to me at home from the movie studios. It's Oscar season starting now and voting begins january so my Decembers are filled with movie watching. Am very lucky. As for travel, I always live somewhere warm for the summer, never england as its to unpredictable. I'm learning Spanish at the moment so after a month in NY in July im off to Spain for Aug, Sept and Oct next year. I'm looking to rent somewhere x
Well i hope that helps answer your questions. I hope you and your dad have a wonderful xmas xx"
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