In the early 1970’s the rock band The Who wrote a song called “My Generation”. The song was a tongue in cheek jab at the communication gap between the younger generation and their parents. It became an anthem for many dissatisfied with the lack of understanding between generations.

This communication gap remains today despite every new form of communication that exists today. How many times when telling a friend or family member that our son or grandson has Duchenne Muscular Dystrophy they respond by mentioning someone they know who has “MS”. We all know the frustration. To some degree I see evidence of misunderstanding within the DMD community. One way to avoid this is to think carefully about the things we say to ensure the meaning is not obscured by emotion.

The most challenging example that I see in the DMD community is hearing or reading that people say they want a cure or therapy “for this generation of boys”. Webster’s defines a generation as a period of about 30 years. When some people in this community speak about saving a generation I am not convinced we are talking about the same thing. To be completely frank, it is almost implied that “saving this generation” means the youngest boys who have DMD. In some context it also means focusing on those who are still walking to ensure all is done to avoid the loss of this ability. I find this troubling for several reasons.

Regardless of how old a person is with DMD, finding better treatments for them is as important as for a newly diagnosed child. I know everyone is frustrated with the pace of research and the slowness of moving therapies to trial. It is imperative to remember life is precious, even when imperfect; all those affected by DMD are worth our energy and deserve the best we can provide. Our sons get older every day. At what point will we agree that at a certain age it is too late to think of helping them? When a boy is young thinking of the future is tough, yet it is necessary. The one thing that needs to be emphasized is while we fight for future therapies we can’t stop living the reality of our current situation.

It is especially troubling to think that the most crucial ability to “save” is walking. There is no question that independent ambulation is important in our society and for our sons, but there are other activities that may be more necessary to think about retaining. If a therapy can be developed that allows a person to continue using his arms, wouldn’t that be exceptional? In the scheme of things, being able to feed yourself, brush your teeth and wash your own face may be more difficult to lose. If a person cannot walk a wheelchair can help, but what device is available to replace arm function? And, are our sons any less a person because they are unable to walk or need help with their care? I think we can learn a lot from these boys about how to live graciously in spite of the obstacles.

What do our sons see and think about this? Children are just as connected as adults and what they read and how they interpret information may be contrary to what their parents desire. It is not uncommon for people to describe DMD as a “terminal disorder” or a “killer of children”. While it is true DMD severely limits life, young men are living longer with appropriate care and most describe their quality of life as good. How do these statements reflect on our young sons? I suggest poorly. There are other ways to elicit compassion and support for research and fund raising. Describing DMD as a progressive degenerative disorder conveys the urgency well enough. My sons know as much about DMD as most people in this community, yet as we have promoted looking to the future I think they are well adjusted. Constantly hearing that without a particular therapy you will die is cruel and inappropriate. I have to believe most families do not speak this way to their sons, but isn’t it easy enough for them to learn this is what we believe?

There is no guarantee any current therapy in trial or planned will completely arrest the loss of muscle function. It is good practice to hope for the best while making other plans. All trials take time and this works against our sons. What we can do is provide them the support they need to live with their disability while working to change the course of this disorder. No, it isn’t easy and maybe cruel, but life isn’t fair, yet we can work towards a balance between what we would like for our sons and what is practical.

Something else we all need to consider is how much we really need each other’s support in this community. There is enough pain to go around, yet we all could use a bit more understanding especially from one another. Fragmentation within the community only hurts all. It isn’t easy seeing beyond our own son’s needs, but that is what will make us stronger. Every young man with DMD counts and that is the key to our success.

Brian Denger

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Comment by Alison Willis on February 24, 2010 at 8:57pm
I have to admit that when Jack and Nolan were first diagnosed at the age of 5...I gravitated toward the people on the message board who had DMD children of similar ages. It took me a year to come to grips and attend the Advocacy Conference in DC each February. I just finished my 3rd conference. It wasn't until I attended these advocacy conferences and I sat in meetings with other parents from my own state that I realized the multitude of challenges that manifest over time. As we sit there year after year and tell our stories...our stories continue to change...and not for the better. The boys in NY run the gammet in ages...from 4 yr old boys to 24 yr old men....MEN. My point? My point is that there is definite fragmentation within the group. Some fragmentation is innocent, but others purposefully segregate themselves. There are a plethera of phrases out there...but to dwell on one, I think should be sufficient. It takes a village to raise a child. That village is comprised of men, women, children, peers, older people, younger people, highly educated people, barely educated people, aggressive people, passive people, and everything in between. The needs of people affected with DMD and their families change and multiply over time. Our "child" is the one who is affected with DMD...regardless of age. Our "village" is the rest of us, and we all would be better off if we were there, in force, for one another.
Comment by Ian Anthony Griffiths on February 17, 2010 at 7:15pm
But still 'more compassion' is cruel, don't we deserve at least equality?
Comment by Brian Denger on February 16, 2010 at 6:10pm
Hello Ian,

I used that brief story as a segue into another way in which DMD affects families. Neither this neurosurgeon nor I downplayed what it is like to live with DMD. Your comments about what is needed serves to bolster my points. DMD is a multisystem disorder that affects individuals and families in a similarly complex way. Our focus needs to be more broad to address more of these issues.
Comment by Ian Anthony Griffiths on February 16, 2010 at 4:36pm
That neuroscientist has a point about who will be there for you as parents. To say he had more compassion I find makes me feel well firstly patronized and finally upset. I understandably agree we will usually be cared for fantastically by our parents (as you would expect any son to be cared for if they had no dmd) but care is not all we need, coping with constant loss isn't easy, struggling to know why things happen at any age, sometimes making no friends. I suppose that neuroscientist thinks the lads actually go around without a care in the world.
Comment by Brian Denger on February 15, 2010 at 7:28pm
Uniformly referring to DMD as the most common progressive degenerative muscle wasting disorder is accurate and not a change. This is how the disorder has been described for some time. What may create confusion with the general public and within the DMD community is focusing on and promoting one age group at the exclusion and expense of another. Disproportionally directing energy on the youngest in the community detracts from the needs of older individuals living with DMD and their families. If we don't begin to address the needs of young men living with DMD as a community, yet try to wait until we have time or when our individual sons are older I fear we won't have the energy. It will be a wasted opportunity. This requires changes in public policy and raising awareness about what it is really like living as an adult with DMD and the effect on families.

Many years ago, after learning my sons had DMD, a neurosurgeon told me he felt more compassion towards my wife and me. He explained his point by telling me he knew my sons would be well cared for, but as my wife and I got older the demands would increase. He asked rhetorically, who would be there to support us.

Until science develops appropriate therapies so all our sons have the same survival rate as their peers it will requiring balancing priorities between research and living in today's reality. It will take us all.
Comment by Ian Anthony Griffiths on February 15, 2010 at 4:17pm
Well i'm 25 living with DMD, i'm not worried by it being called a terminal illness, because at some point it simply becomes that. Not everyone is living to 30+, i'm tired of people jumping to conclusions when they see an 'older' guy with DMD, they think automatically you(me) will live to 40! The thing people forget is that we are all NOT the same, boys are still dying of this. We each experience DMD differently. Changing it's name will only confuse it more for people, diabetes and many other conditions could be described as degenerative, it nowhere near describes how bad this is. I agree however that any treatment will be welcomed, arm movement would free me up more, but changing breathing and cardiac would help the most. Frankly the wheelchair was way easier than any of the vents, heart meds and eating difficulties that I now have. Finally 25 is not old, but you sure do feel written off after 21 here in the UK.
Comment by Samantha Dearing on February 15, 2010 at 10:43am
My son is almost 14yrs old. He is quickly losing upper body/arm strength. Any progress in therapies is great and very needed. I see way way too many parents of younger boys on here seem to focus on keeping them out of wheelchairs. While, yes, that is an important thing also, it is not the end of the world when your son does go into a chair fulltime. I think the focus needs to be on overall health, not just keeping them on their feet. I also see the fragmentation within this group. It sometimes seems like an "older boys vs younger boys" thing in thinking, or even sometimes a "my son has a deletion they are working on vs my son doesnt"thing. I hate that. They arent working on my sons deletion. I am not happy about it, but I am cheering for the ones they are working on to work so they CAN get to working on my sons. Oh and as for changing how the disorder is described, it is very much needed. When my son was younger, he wasnt as aware of what people were saying about DMD. The older he has gotten the more he has become aware. People do not think. In his prescene people have talked about the shortened life expectancy of dmd. We call it a progressive disease. End of story. I have "gone off" on way too many people who dont think before they speak. =) We are all in this together. Wether your son is newly diagnosed or a teenager, 20s,30s,or even 4os, we all want a treatment that works.

Comment by Donna Gluck on February 12, 2010 at 12:47pm
Brian, You write very well. My name is Donna Gluck. I am conducting research formy dissertation @ NIU. I am interviewing boys between 8-12; asking them to draw a picture of what it'slike to be them. I have permission to interview only in IL. My goal is to publish and raise awareness of unique emotions of boy with DMD. They all count and I would like to give them a voice! Donna
Comment by Brian Denger on February 11, 2010 at 6:02pm
Certainly changing how we describe DMD will not change the disorder, yet for the young men and older guys living with DMD it might make a difference. We all grieve when a family loses their son, regardless of age. The point remains, better management of care does make a difference and life expectancy is improving, albeit too slowly.

So, this leaves us more than just the quest for better therapies. It also presents the challenge of ensuring that all families know what appropriate care is, identifying clinicians who agree to provide the necessary services while working together to improve both the length and quality of life for those affected by DMD.
Comment by Jacobs Mommom on February 11, 2010 at 5:10pm
Ofelia: You took the words right out of my mouth! No matter what you want to call it, boys are still dying far too young and I don't see that many who are living longer compared to those that are dying.
Everyone wants to see all of these boys treated and we don't care how old or young they are! I'm tired of people talking about it and nothing happening, plain and simple. I want money to go to all kinds of research for all mutations and not just some select ones.
Yes if we can save upper body function for ALL BOYS that would be a true blessing but we need to push for it now!!!!!!!!!!

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