Martyn Sibley's answers

Martyn Sibley

Martyn Sibley lives in the UK. He has Spinal Muscular Atrophy (SMA). However, he has a Masters degree, has travelled as far as Australia, drives his own car and lives independently in London.

He is a blogger, entrepreneur, speaker, creator of disability webinars, master of disability e-courses, co-editor of online magazine http://disabilityhorizons.com/ and a cheeky chap! Through his blog, Twitter, Facebook and other social media tools; Martyn discusses work, leisure, travel, care, relationships and life generally.


° When did you know that you aren’t quite healthy?  - I do not remember this as I was only 18 months old. I know from my parents that they noticed I did not move as much as my cousin and so they took me to see the doctor.

° Did doctors give you the right diagnosis at once or after several false tries? - The local doctor referred me to a specialist at the local hospital. The usual specialist was away and so a doctor saw me who would not normally have been there. For some lucky reason they had read up about SMA and felt it was likely I had it. I then went to the specialist clinic for SMA in London and there I had a muscle biopsy (I still have the scar) which confirmed I had type 2 SMA.

° How old were you when started using your wheelchair? - My parents knew of a cool outdoor wheelchair that raised the chair and enabled standing in the chair too. The chair cost a lot of money so after months of local friends fundraising I received this wheelchair. I was only 3 years old! It scares me to think I drove such a powerful machine so young but the independence was so important. Without this I used a childs buggy or was carried everywhere.

° Do you get any medical treatment? Did you feel better after some of them? - I stuck to my standing, swimming and physio routine which helped maintain my movement and joint range. When I was 15 I had a spinal fusion for my scoliosis (curvature of the spine). This operation left me hospital for 3 week, with a lot of pain and some years to fully recover. However, it meant I sit up more comfortably and am more healthy if I get the dreaded winter chest infection! All in all it was the right decision.

° What kind of exercises does help you? Any system? - Now I just have my PAs stretch my hips and knees after a shower, and go swimming when possible. I am a lot tighter and weaker, but it is hard to find the necessary time and as one gets older the effects of SMA are harder.

° Have you been in a rehabilitation center? - No I haven't participated in this type of project.

° Have you passed any course in hospital? - No.

° How long can you stay sitting during a day? - The whole day. I get hoisted in my wheelchair and stay there until bedtime.

° Do you need any help during the night? - Yes, I phone my personal care assistants when I need help. They wake up, come to my room, turn me over as instructed and leave again.

° Can you sleep on your back? - Only for a short time.

° Which food do you try to avoid for not putting on the weight? - My diet is not the best but I am lucky I do not put weight on. My favourite food is curry!

° Do you get any help from the social services of your country? - I have a 24/7 care package funded by my local council. I also receive the Disabled Living Allowance for the additional costs of equipment, and I have an adapted car which I drive with my hands.

° Have you any possibility to work? - I was employed straight after leaving university. I worked for a disability charity in fundraising. Then, in June 2011, after working on some great projects, I left to start my own company. Now I run a magazine and e-learning company for disabled people worldwide. Visit www.martynsibley.com for more information.

° How often do you go outdoors? Do you travel sometimes? - I often go out for work meetings, the shops, restaurants and clubs. I am also a keen traveller and have visited parts of Europe, Asia, Australia, USA and Mexico. My online magazine www.disabilityhorizons.com also shares other disabled peoples travel tales.

° What helps you to cope living with SMA? - Swimming, stretches, sunshine and sex :-)

° Who helps you with toilet and bath? Do you pay for this? - I have 2 full time care assistants who hoist, wash, dress and cook for me.

° Have you got a hoist? Did you buy it or get for free? - My hoist was provided for free by my local council.