Patrick plays piano. He took lessons from a classically trained instructor after he decided voice lessons were just too boring. Patrick enjoyed Mrs. Wingfield's lessons and worked hard to please her. When she passed away he decided he didn't want a replacement and took time off from playing. Slowly he started playing again and now plays almost daily.

He truly has a gift and I enjoy listening to him. I'll be working on the computer banging away at the keys when he wheels up to the keyboard he inherited from my father and starts picking out tunes. He has an ear for music and often starts learning songs by listening and playing along much as I did when I was young with my guitar. I like to think he inherited his talent from me, but he is much better.

For Patrick it is more than passing idle time. He loves music. He is able to read music and still plays many of the songs he learned while taking lessons. He most recently has taught himself to play songs from the video games he and his brother enjoy. When not in the same room it sounds like someone is playing Mario Bros. or the Legend of Zelda not a fifteen year old boy. He also has learned theme songs to the shows he watches. His older sister, Rachel, fumes when she hears him play as she also took lessons, yet it comes much easier for Patrick and she knows it.

I hope Patrick will always be able to play piano. The thought of him eventually loosing this talent is something I don't like to dwell on, yet know may come. Patrick's brother, Matthew, has limited upper body strength and is still able to use his laptop typing with his left hand and using a pencil in his right. Boys who have DMD develop interesting skills to overcome many obstacles. I just can't see how Patrick will play the piano if he looses that much range of motion. He isn't the type to do anything half way.

I have thought about this more since Patrick and I met Justis Vroom earlier this year. Justis is eighteen and at university in Deflt in the Netherlands. Patrick and I stayed with Justus and his mother this past June. While there we talked about research for DMD. He said the most difficult part of DMD was not loosing the ability to walk, it was loosing use of his arms. He is a very thoughtful young man and explained how he is unable to comb his hair and demonstrated how he is sometimes able to place his fingers in his mouth and uses his head and neck to lift his arm onto the table. He said walking was overrated.

I believe Patrick thinks much in the same way. True, he would prefer to walk and run like his peers, yet given the choice of caring for himself or walking I'm certain he would choose the use of his arms and hands. When Matthew was first diagnosed Alice and I were given advice that the boys cope better with getting a wheelchair as they regained much freedom. I know what we thought was so tragic is something the boys can accept and have learned that there are other things to consider.

This makes me think about therapies as researchers make their steady gains. The emphasis has been on keeping boys walking, but what about upper body strength? If therapies are developed to allow these young men to retain the ability to feed themselves, wash their faces and play piano I think it would greatly improve their quality of life. Certainly I prefer complete restoration of function, but we need to think of this in manageable steps. As science improves, bigger strides are made and success can be built upon success. I'd like to see a parallel emphasis on the development of short term therapeutics and assistive devices that enhance arm function. The fact remains that until treatments are available, boys will loose their ability to walk and care for themselves.

Each of our sons has their own unique gift. Some draw, others write and many enjoy computers and electronic games. Preserving their talents needs to be as much of our focus as long term research goals. I'd like for Patrick to play the piano for as long as he likes and every other boy to continue doing the things they enjoy.

Brian Denger

Views: 76

Comment

You need to be a member of PPMD Community to add comments!

Join PPMD Community

Comment by Veronica E. on October 14, 2009 at 11:58am
Great thoughts! So much emphasis is based on cure, cure, cure, and while that is everyone's ultimate goal for boys and men with Duchenne, more emphasis should be placed on use of arms and hands and quality of life.
Comment by cheryl cliff on October 13, 2009 at 9:44am
Good Blog Brian. My husband and I have often thought exon skipping won't reach our son (now 11) in time to save his walking, since it appears to be diminishing fast. But, it might save other abilities. The ability to groom and feed oneself adds dignity to ones existence, especially for young men. The ability to hold up a book, use computer or play piano helps with quality of life issues.

Even the small things count.

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2019   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service