Learning Disabilities and Duchenne Muscular Dystrophy

Hi Carol…I really feel for you.

My nephew was diagnosed with Duchenne in June, 1997. He just turned 8, and has started duflasicort. He doesn’t have learning disabilities but he is gifted and very self-directed. My sister and her husband worked with him alot (letters, numbers, puzzles, etc. from a very young age) as he tended to prefer that type of play. He is extremely neat and organized, and has been since very young. He has many routines that must be followed or it drives him nuts - i.e. the order in which his clothes are put on, where certain things are placed in his room, etc. This is much like his parents, so it is probably a case of nature AND nurture!

I guess I haven’t helped you much, but I was so surprised to see Duchenne mentioned here, I had to reply! I often “give myself a smack” when I am feeling sorry for myself (dyslexia issues, etc.) by reminding myself that this one is nothing compared to the reality of Duchenne.

Still…Go, geneblasting…I am the grandchild (one of 7) of a woman who was diagnosed with diabetes in 1926, when it was still generally regarded as a terminal illness. Of course, Drs. Banting and Best had already made discoveries that soon were in use, and so I’m here to tell the tale. (although she was told by two doctors that she was “crazy to risk her life with some experimental treatment”. Then she was told she’d never have children. Then she was told she’d die young…well, 63 and held all her grandchildren…not so bad, is it?)

This background allows me to believe in miracles, even as I deal with reality. Our attitude as a family to Duchenne is: Adaptive Strategies. Put your eye on the goal, and get there. If you can’t go by a straight line — use your brain, your imagination, your ingenuity. When you think you have to give up, and you can’t take any more, look yourself in the eye and say “Stephen W. Hawking, Stephen W. Hawking, Stephen W. Hawking”. (A brilliant British scientist, the oldest living person with A.L.S., Lou Gehrig’s disease. Still regarded as a terminal illness…yes, he has children and grandchildren and is I believe on his second marriage, despite a severe level of disability!)

Anyway, do e-mail me if you wish…I may be able to help with the LD side, even if just as a sympathetic ear. My nephew is hugely bright — is your son gifted/ld, or ? Take care and best wishes,
lizzybee

Some mild MR is fairly common, I understand. The student I teach with the condition has verbal scores in the MR range and performance in the low average range.

Just for interest, Anitya…how old is he? How advanced is the deterioration? (i.e. braces, wheelchair, etc.) Have you known him long enough to know if he has always been at this level, or if it may be related to the progress of the MD? (or from the medications involved…some of the older treatments had terrible side-effects.)

I have not seen any mention of this in the MD literature I have read, although that is not extensive…it used to be thought that MD was correlated with behaviour problems, but more recent studies tend to say that was due to the lack of support for children and families with this condition — before “Jerry’s Kids” children and families were pretty much diagnosed and then sent home to wait for deterioration and death, since healthcare professionals could do nothing to help them — of course this has changed greatly in the last 20 years!

Thanks in advance if you have time to reply — knowledge is power!