Many websites and charities associated with DMD are mainly focused on a parents point of view. Very few are from the young guys or men actually living with this disease, duchennemen trying to be an exception. I acknowledge the views of parents are extremely valid as generally they take care of us most of our lives. They are highly focused on that so far elusive cure. They go through tough times seeing us lose many abilities as well as worrying about all the normal parental things. They want the best for us and that means trying many different supplements and techniques of prolonging movement (standing frames etc.). Some thinking that we aren't too concerned with the normal, trivial things other kids are going through.
Then we come to what the young men think, I'll draw on my personal knowledge from here on in, but you can see many views of other men in the Interview section of DuchenneMen here.
When I was young say around 4 to 6 years old, I basically knew I was struggling to walk and that I had weak legs. I wasn't thinking cures or bad tasting supplements, I was thinking whens the next cartoon on! I didn't dwell on things I had no idea what was going on, I'd just occasionally ask "why?"
Moving on to say 11 to 14, I knew the name of my disease, Duchenne Muscular Dystrophy, but it didn't mean alot to me. What did mean alot was adjusting to long term wheelchair use and the gradual loss of ability, but I still felt perfectly content and happy, I just wanted to be like the other 11 to 14 year olds. I loved watching football and eating all the junk of our generation and rebelling against homework. Physio annoyed me and constant appointments disrupted my school life. I was highly annoyed that hydrotherapy killed off my hopes learning French. Although DMD was impacting on me really hard I struggle to remember even thinking about a cure I didn't even know steriods could be used to help keep some strength. I wasn't told anything like that by any consultants at the time. I had read on early internet sites that DMD was incurable, and to me that just stopped me thinking about it and I just carried on living my life. The word "progressive" didn't ring alarm bells, I hadn't realised my loss of ability was actually progressive worsening.
16 was when I had a huge wake up call, my breathing wasn't monitored as it should have been and I developed bilateral bronchopneumonia. This sent me to intensive care three times in 2001 where I nearly died. Thankfully I scraped through but it left me with a mini tracheotomy and requiring a non invasive ventilator every night to prevent further hypoventilation(under breathing). I was alot more worried after this set of events, worried about catching colds and flu, I became increasingly housebound and lonely, whiling away time on my Playstation 2. Yet again I didn't wallow in self pity or into thinking the cure was coming. I just wanted the latest game, pro evolution soccer, how I miss that game, or the wonderful Gran Turismo series. I would talk incessantly to my dad about the goals I'd scored or the cars I'd driven that day. I just "threw" myself into technology and nerdiness!
20-25 my current situation is very different, I do think about the possibilities of a treatment and yes that cure, thanks to Action Duchenne. 25% of me is worried about that aspect, but 50% of me is thinking about having kids and a wife, its been hopeless so far, it seems impossible that'll I ever find a girlfriend, but that is one thing some of my peers experience to. I so want to be loved by another, that special lady who is as elusive as the "cure". I long for morning hugs and cosy evenings in front of the TV. I'd need the ultimate lady who was willing to stay in and take some care of me. Yes we'd argue but lets hope we could be a team. 15% of me wants to be able to work, but its also concerned with my current volunteering work which I can do. The last 10% is my serious hobby of artwork which fills me with immense joy and I can really forget about DMD as I mess around in Corel Painter 9. I know DMD will get worse and is more than likely to kill me, but I just want fun and a quiet life until then. A cure or even a treatment will be a mega bonus, that we do all hope for.
Its not all cure, cure, cure to us older guys it's live, live, live. To that though I add a caveat we as older guys should speak up a bit more about DMD and try not to consider a cure beyond us. Remember I and duchennemen are shouting for more recognition of us 18 plusses and trying to fly the flag for us.
Stay strong!
Then we come to what the young men think, I'll draw on my personal knowledge from here on in, but you can see many views of other men in the Interview section of DuchenneMen here.
When I was young say around 4 to 6 years old, I basically knew I was struggling to walk and that I had weak legs. I wasn't thinking cures or bad tasting supplements, I was thinking whens the next cartoon on! I didn't dwell on things I had no idea what was going on, I'd just occasionally ask "why?"
Moving on to say 11 to 14, I knew the name of my disease, Duchenne Muscular Dystrophy, but it didn't mean alot to me. What did mean alot was adjusting to long term wheelchair use and the gradual loss of ability, but I still felt perfectly content and happy, I just wanted to be like the other 11 to 14 year olds. I loved watching football and eating all the junk of our generation and rebelling against homework. Physio annoyed me and constant appointments disrupted my school life. I was highly annoyed that hydrotherapy killed off my hopes learning French. Although DMD was impacting on me really hard I struggle to remember even thinking about a cure I didn't even know steriods could be used to help keep some strength. I wasn't told anything like that by any consultants at the time. I had read on early internet sites that DMD was incurable, and to me that just stopped me thinking about it and I just carried on living my life. The word "progressive" didn't ring alarm bells, I hadn't realised my loss of ability was actually progressive worsening.
16 was when I had a huge wake up call, my breathing wasn't monitored as it should have been and I developed bilateral bronchopneumonia. This sent me to intensive care three times in 2001 where I nearly died. Thankfully I scraped through but it left me with a mini tracheotomy and requiring a non invasive ventilator every night to prevent further hypoventilation(under breathing). I was alot more worried after this set of events, worried about catching colds and flu, I became increasingly housebound and lonely, whiling away time on my Playstation 2. Yet again I didn't wallow in self pity or into thinking the cure was coming. I just wanted the latest game, pro evolution soccer, how I miss that game, or the wonderful Gran Turismo series. I would talk incessantly to my dad about the goals I'd scored or the cars I'd driven that day. I just "threw" myself into technology and nerdiness!
20-25 my current situation is very different, I do think about the possibilities of a treatment and yes that cure, thanks to Action Duchenne. 25% of me is worried about that aspect, but 50% of me is thinking about having kids and a wife, its been hopeless so far, it seems impossible that'll I ever find a girlfriend, but that is one thing some of my peers experience to. I so want to be loved by another, that special lady who is as elusive as the "cure". I long for morning hugs and cosy evenings in front of the TV. I'd need the ultimate lady who was willing to stay in and take some care of me. Yes we'd argue but lets hope we could be a team. 15% of me wants to be able to work, but its also concerned with my current volunteering work which I can do. The last 10% is my serious hobby of artwork which fills me with immense joy and I can really forget about DMD as I mess around in Corel Painter 9. I know DMD will get worse and is more than likely to kill me, but I just want fun and a quiet life until then. A cure or even a treatment will be a mega bonus, that we do all hope for.
Its not all cure, cure, cure to us older guys it's live, live, live. To that though I add a caveat we as older guys should speak up a bit more about DMD and try not to consider a cure beyond us. Remember I and duchennemen are shouting for more recognition of us 18 plusses and trying to fly the flag for us.
Stay strong!
Thank you Ian.. nice blog indeed.
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