Interviews

This part of the site is for interviews with other duchennemen.

Here are the questions:-

Question 1, What is your name and age?

Question 2, When did you first go into a wheelchair?

Question 3, What do you do thoughout the day? (For example I'm an amateur artist)

Question 4, How do you cope with the day to day issue's of DMD?

Question 5, Do you have a positive outlook on your DMD, if so how does this benefit you?

Question 6, Many of the website readers including me have difficulty when it comes to finding girlfriends, how do manage with this?

Question 7, Do you have any top tips for other's with DMD? For example, computer gaming, accessability or places of interest etc..

Question 8, What assistive technology do you use? For example ventilators, environmental controls and wheelchairs etc..

Question 9, What is your favourite past-time?

Question 10, Do you think we'll get better treatments in the next ten years?

Answers from participants below:-

First reply from a person who wishes to be anonymus:-

Question 1- Name: prefer not to say Age: 22

Question 2- From memory 10-11

Question 3-Read, make web applications, watch tv. Some volunteer work at local hospice. Just hang out with some buddies.

Question 4- No choice just get on with it. Dark sense of humour.

Question 5- Positive, were all royally screwed so no. Well this Is more true for the older generation of sufferers but newly diagnosed cases can probably be more positive as there is more chance of better treatments coming out in their lifetime. I'm positive about other stuff but not my terminal illness.

Question 6- Stop trying , when the right one comes along You will have no difficulty. Lots of smut I suppose.

Question 7- I love games, sadly I can only use a mouse so the range of games is ****. Until I discovered a tool called GlovePIE, this little gem lets me make a control mechanism for anygame with any hardware. I tested it on Halo using mouse and voice commands. It's free, a must.

Question 8- Wheelchair, Specialist air mattress, adjustable bed, hoist, adjustable bath.

Question 9- Going to the cinema, it lets me briefly forget all the ****. Seeing people fall over (not too badly), a: its funny, b: reminds me walking isnt everything and c: see a.

Question 10- Yes, I also think it's possible Some sort of cure may come out in the near future , whether or not this is in our lifetime is anybody's guess .

Second reply:-

Question 1- Mark Iain Chapman, aged 38.

Question 2- Went into manual wheelchair aged 9, into powered wheelchair aged 14.

Question 3- A large part of my time is managing my Personal Assistants, it can involve a lot of management and administration. I also do some voluntary work with user led independent living disability organisations, namely the Scottish Personal Assistant Employers Network (SPAEN) and Lothian Centre for Integrated Living (LCIL) both of which campaign for independent living and provide invaluable support to disabled people who wish to control how they live. Leisure time is spent socialising, visiting family, regular cinema trips, occasional theatre shows, art gallery visits, walks (rolls) in the countryside, watching TV/DVDs, online and audio books, keeping an aquarium and looking after the cat. Good food is a passion, I love coming up with tasty recipes to cook with my PA’s. I also spend hours on my computer doing admin, graphic design, digital art, internet (especially Facebook and eBay!)

Question 4- I cope very well due to having the equipment and support which enables me to get on with day to day life. I've never feel like giving in to DMD, I always try to do better regardless. Obviously I have periods of being unwell which can be further impacted by DMD. The difficult part is accepting each change that comes along, easier to deal with if you have good support and equipment. The cold can be especially frustrating, I really hate when my chair driving hand freezes up!

Question 5- I think I've always been a positive person, I try to focus on my abilities and do things I'm able to do. I accepted the limitations a long time ago, things like not going to inaccessible places. One thing that keeps me going is there are plenty people without disabilities who's quality of life is far worse that mine. Also without DMD I would not be myself, it's part of who I am. Without DMD undoubtedly my life would have very different, whether it would have been good or bad is another matter. Being positive gives me the drive to get on and be active, I accept there will be bad and difficult things to cope with but along side there are the many good things that make life so worthwhile and happy. Perhaps being able to live independently giving me full control over how to live my life is a big factor towards my positive outlook.

Question 6- I haven't really looked for girlfriends on the internet. I have some fabulous friends who are girls and that's really great. Unfortunately my true sole mate who I dated on and off for many years died 7 years ago. She had Spinal Muscular Dystrophy and was my truest friend, I still really miss her. I have also struggled with my sexuality for many years and I find the lack of a sex life so frustrating at times, sometimes I can't stop thinking about it, it drives me crazy. I can certainly understand why some of us are left with little option but pay for sexual services, after all it's a normal human need.

Question 7- Try to always achieve and better yourself. See changes as challenges that have solutions. It really important to keep active and busy, I try to have a few things to focus my attention. Have a hobby, for example I keep an aquarium which gives me a huge amount of pleasure and it's something that requires my attention. Get out socially as much as you can when you're well, whether that's visiting friends, going to the cinema or just to the pub for a drink. You must have a computer, it can be a good way to meet and chat with other people on web-sites like Facebook. I really enjoy the internet, reading online books and doing graphics and art. It also enables me to do some voluntary work and run my PA team more efficiently. I think it good to do something that's challenging and rewarding, for example fund raising or charity work.

Question 8- I use a NHS Quickie power-chair, this has tilt in space, an extra control at the back for PAs, a Jay 2 gel cushion, headrest, side supports and perspex tray. I'm on a Breas 403 Ventilator 24 hours a day via a tracheotomy. (In case of problems I have 2 of them and a back up battery pack. My power chair has also been altered to hold and run it.) For suctioning out secretions I use a Sam 12 Medical Suction Unit and have a portable Laederal Suction Unit for when I go out. I have an electrical adjustable bed and commode chair that's used for toiletting and showering, transfers are done with a ceiling track hoist and sling. With urinating I use a bottle at home and wear a sheath connected to a urine bag when I go for a drink or travel long distances. My home has a Steeper environmental control that operates the TV, DVD, Hi Fi, Door release, Intercom, Internal care buzzer and Community alarm. Lastly I have an adapted Fiat Multipla car converted by Brotherwood, as I can sit in my chair next to the driver instead of behind it means they are aware of any ventilation problem.

Question 9- Good food and cooking is a real passion, I love coming up with tasty recipes to cook with my PA’s. I'd like to think a healthy varied diet also helps towards a stronger immune system.

Question 10- Yes, treatments rather than a cure. We are getting better at support for DMD men, hopefully this will significant improve over the next 10 years. I am sure there will be huge genetic advances which will slow the progression of DMD but I still think a full cure is a bit further away. Technology advancement with equipment and ventilation will also improve giving those with DMD a better quality of life for much longer.

Third reply:-

Question 1- Christopher and I am 24.

Question 2: Started using manual chair on and off around age 8 and I'd say went into a powered chair about 12.

Question 3: I spend most days at home on my PC where I moderate a large Grand Theft Auto(The video game of course) based forum that also covers many other things besides the game series, anything from general off-topic chat to PC and Tech talk. Mostly I deal with reports of rule breaking, removing members breaking rules and keeping the place tidy. When I am not doing that I am, checking emails, chatting to friends on msn, checking up on the latest news, do a bit of graphic design as well as some gaming. I'll occasionally go out for lunch or a movie or just a bit of bargain hunting for good prices on games, DVD's etc.

Question 4: Overall yeah I manage to cope with everything but I do have days and times when I feel I might not be coping and feel a bit depressed but hey it makes the good times that much better!

Question 5: Yes and no, at times yeah I have positive thoughts in the form of thinking of the things I can do that able bodied people may not be able to. There is also the perspective I get being disabled but having a voice to speak up for other not so fortunate people with disabilities.

Question 6: I don't bother, I believe that its really not worth the hassle and while I cant deny I have an urge to love its something I try no to think about.

Question 7: Well try and take things one day at a time, don't think about what the future might hold for your condition because it only makes dealing with the problems of today seem futile. Deal with things as they come! Another thing I find and I am sure many other DMD guys also, is the usage of video games, movies, and books where you can escape your reality if only for a short time helps greatly. The obvious one is to get out and do things while you can, don't wait!

Question 8: For starters I've got my Roller M1 Powered chair with its tilt-in-space, electric bed that does the basic height adjustment as well as back recline so I can sit up and watch TV, I've got a ceiling hoist for all my lifting needs, commode chair and that's the major things. I've also got for my vehicle needs a Opel/Holden Combo van modified by Les Brazier Special Vehicles which allows me to drive into the back of via an easy to use fold down ramp. Its very much like most of the Renault Kangoo's and Citroen Berlingo's that are modified for wheelchair access. I guess you could call this assistive technology, I have a Logitech Harmony Remote which I've got programmed to operate my TV, Xbox, Digital Set Top Box, Air Con, Stereo etc. It's also good as with one button I can get my TV to turn on, set the right input, and then turn on the set top box or Xbox 360. Very handy!

Question 9: Probably video games the most but also reading books, watching movies/DVD's, and generally mucking around on my PC. When I go out I enjoy eating out, seeing friends and just generally having a good time.

Question 10: I think there will be more treatments to slow it down somewhat in the next ten years but as for cures themselves not for a while I'd imagine. I think its great for future DMD sufferers, as I mean even now there are things that weren't around when I was young. Its just a bit late for us oldies!

If you would like to take part, and are 18+ please email me at thebig_ian_g@btinternet.com