Thursday, 8 November 2012

Daniel's Story - Defying Duchenne

Yesterday in part 1 we heard form Daniel, explaining about his childhood and university life with Duchenne Muscular Dystrophy. Today Daniel talks more about his life, his struggles and passions. Thank you Daniel, for sharing so much about your life, and I am sure what you have to say will help parents, professionals and young men growing up with Duchenne Muscular Dystrophy. You are an inspiration to me personally and I am sure to others. Thank you for being my friend.



What are your passions in life?

I love computers and science more than anything. Computers have always been a passion, probably because they make sense unlike the real world. That's probably part of the reason I love science too, it tries to make sense of the complex world we live in.

How do you spend your time now? What interests you? What keeps you motivated?

I spend most of my time attached to the computer, I can always find something interesting to read (usually nerdy), talk on twitter or find some project to dive into, whether it's a group thing like helping The Standby TaskForce or learning new skills like photoshop editing. There's always something to do to keep my mind stimulated.  I also have my dogs and cat to keep me amused along with the odd visit from friends.


What frustrates you about having Duchenne?

Just not being able to do the normal things really, holidays are really too much hassle and stressful. Being able to simply decide to go out for a walk in the countryside without having to plan it would be great. I'd like to be able to arrange my room myself or fix my computer without someone else having to be my hands.

You have been quite open on Twitter about your struggles with government agencies, what have been your main battles?

My main battles have been with wheelchair services and Continuing Healthcare I suppose. Continuing Healthcare fund carers and nurses to come into my home and give my Mother a break (she has back problems herself so it's not easy for her to care for me 24/7, plus she needs to sleep sometimes too!). This stops me from having to be put in a nursing home, which would probably break me if I'm honest.  CHC are always trying to save money so I've had to fight to keep the level of care I need, one particular nurse assessor was extremely unhelpful, she changed my care package without discussion and even bullied my Mother on the phone. They do listen to reason though, after I quoted some regulations they quickly backed down, but it's always a fear and fight to keep the funding I need.

My other main battle is with wheelchair services, now they are a law unto themselves. They ignore regulations and guidelines, make up rules when they feel like it they appear to have no concern for their patients at all.  I have involved my local MP, PALS and finally resorted to an advocate from the Muscular Dystrophy Campaign to help me. I triggered at least one internal investigation, of course that didn't help as the main OT who is in charge of the department and who I had most programs with actually headed the investigation (so much for independent investigators).  In the end I had to raise money through charities and donations to get a wheelchair which fitted my needs.

How can we, as a community, better support young people living with progressive illnesses such as Duchenne?

Treat them normally, that is the best thing you can ever do for a disabled person. This works both ways though. A disabled person should not assume they should be treated any differently from a 'normal person'. Yes things like making shops accessible and getting extra time in exams is needed, but it doesn't hurt to say thank you when someone opens a door for you or steps out of your way on a street. You have no right to just expect it, you are not owed anything.  I'd also add don't let the government make too many cuts, please fight against this, living with our own families in the community is really important,. Being put in even the nicest home is like being put in a prison to some extent, we have done nothing wrong why should we be punished?  

You have recently received a lot of support from your own community in fundraising for a new wheelchair, what difference will this make to you?  What would you like to say to those who helped you achieve this?

This will make a huge difference to my quality of life, it already has in fact, just getting outside is a great feeling, I hadn't realised how much I had missed my freedom, now I have to stop myself from doing too much and try to slowly build up my stamina after years in bed.  I was and still am amazed at the generosity of the people who have helped, I've been so used to being in my bedroom mainly communicating with government departments who seem to not care or make things hard just for the sake of it I'd forgotten that 'real' people actually do care and want to help.  I have a new lease of life now thanks to the community and intend to make the most of it, I will forever be thankful, not just for the money, but also for reminding me people are inherently good and kind.

Often you see it written that boys with Duchenne live until their 20s, you are well in your 30s what do you think the secret is?

I would say willpower, but that sounds arrogant and isn't fair on the boys who haven't survived. I guess there are lots of factors. I have always had great support from my family, living at home and going to normal schools is also a big factor, being treated normally makes you feel normal and I think that helps you stay strong.  I've had close calls but Mum is also a fighter and has never given up, she has fought doctors to get me the correct treatment when they are too short sighted and arrogant to talk with neuromuscular specialists.  I'll add I have never taken steroids or heart medication, I have tried heart medication but it doesn't agree with me, the only long term medication I'm on is for anxiety and panic attacks.

What advice would you give to a teenage boy who is struggling with their disease progression?

Just fight it, never give up, things can get bad but there's always something good to live for.  Things can be tough especially with all those hormones rushing around in your system as a teenager, of course what you will want most is to be normal and have a love life. I haven't had that but that's because of myself I suspect more than anything and not my condition. I was always extremely shy and self-conscious, but I know for certain now it's possible for someone to love me and have read of people with Duchenne who are happily married with healthy children of their own.  You can live, be happy and make a positive contribution to this world, don't mope just get on with life and remember there are always people far worse off than yourself.

To those doctors and other professionals who didn't expect you to still be here now, what would you say to them?

Never make assumptions. Scientists are supposed to know nothing is ever certain, just do the best you can for your patients and ask for help from other experts when you are not sure of something.  Also please don't tell parents their children will only live x amount of years, explain to them they may die young but also tell them about people like me who are still going strong past their late 30's, hope is  important.


What one advice would you give parents who have been given a Duchenne diagnosis for their child?

This is hard to answer, I guess just never give up hope, it's not a death sentence, your child can live a long and happy life, they can give you and others so much love and also give something back to society.

Thank you Kylie for asking me to write this post, it has been very therapeutic, and to be asked by someone as brave, caring and kind as you to do a guest post is an honour.

You can follow Daniel on You Tube here

For more information on Muscular Dystrophy in general you can visit Muscular Dystrophy Campaign  

For more information on campaigning visit Action Duchenne specifically the Boys to Men Campaign.

If you would like to support financially, please consider sponsoring this brave lady as she "swims around the world" next week for Harrison's Fund. 

 


9 comments:

  1. What an inspirational young man you are Daniel. Thankyou for taking the time to write this post and sharing so much with us. I take my hat off to you! xxx

    ReplyDelete
  2. Thanks for sharing your story Daniel. I didnt really know that much about Duchenne Muscular Dystrophy before. You are truly an inspiration. Hope to hear more from you again soon x

    ReplyDelete
  3. Thank you all, I really appreciate your comments they make me glad that I opened up and wrote the post, I have always tried to avoid making a fuss about myself or my condition but Kylie pushed me and gave me the strength to do this, and I think it was the right time in my life to do it. I really hope this helps encourage others with a disability to live life to the fullest, and people without one to understand a bit more about living with one.

    Thanks again to everyone who has been so kind on here, facebook and twitter it means a lot to me.

    ReplyDelete
  4. Thank you so much for sharing your life with us - my nephew was diagnosed with Duchenne Muscular Dystrophy when he was a young boy and by the age of ten he too was unable to walk and had to use a wheelchair. His life was a happy one though and he enjoyed his school and holidays. Sadly he was taken ill with chest problems aged 19 and didn't recover. He was such a large character and he too enjoyed his life despite his disability and was much respected by his friends and family. It is wonderful to hear of someone with Duchenne living a rich life and reaching his thirties and I wish you many more happy years. Your story is really an inspiration to other families living with this cruel disease and I am sure they will be heartened by your bravery. xx

    ReplyDelete
  5. I am so proud of you for sharing so openly. I know that you have just always got on with it and focused on your passions and tried not to give in to your condition, but its been wonderful to hear about that side. I do think what you have to say will help others understand, and will very much help parents and young men with this condition too, to live life to the full and push at their limitations as you have. You really are an inspiration, and I am so grateful to have you as such a close and trusted friend.

    ReplyDelete
  6. charlotte.cheshire9 November 2012 at 20:06

    Thank you Daniel for sharing your story so openly, I'm really touched by your passion for life and amazing achievements. Clearly you face great challenges in life and yet they don't define you. You are a man of strength.

    ReplyDelete
  7. I'm really happy he had a good life, sad too that he didn't live longer, chest problems really are the worst worry of having Duchenne, I've had some close calls and always have to be vigilant it's so easy to get a chest infection or other problem and it usually happens so quickly too! Thank you for posting your comment, we shouldn't forget those we've lost and can learn from them, he was obviously very loved by you and others which is what we all need deep down. x

    ReplyDelete
  8. What an inspirational interview.

    ReplyDelete
  9. Thank you Daniel for sharing your story. My son Alex was diagnosed with Duchenne Muscular Dystrophy when he was 4 years old - he's now 7. It's so nice to hear your story and it's great that you remain so positive! I have big hopes for my son and like your mum will never give up hope, he's my little super star and always will be - I just we make the right choices for him in terms of medication, etc. He's in normal school and that is something we will always continue to do, we too treat him normally and will always aim for him to have as normal life as possible - I think that's really important. I hope you don't mind I have shared your story on our charity facebook page - Alex's Wish - which we set-up last year to raise vital funds for research into DMD. If you get a moment, please take a look https://www.facebook.com/alexswishcharity1
    Thanks again and best wishes for your future :-)
    Emma Hallam - Alex's mummy X

    ReplyDelete