Living with Duchenne (age 18+)


Living with Duchenne (age 18+)

Members: 63
Latest Activity: Nov 13, 2019


DMD young men in Cincinnati, southwestern Ohio

Started by Rebecca Lilley. Last reply by Ann Dillon Jan 2, 2018. 2 Replies

Mental Wellness Resources for DMD?

Started by Emily Wiebe Aug 26, 2017. 0 Replies

Undiagnosed Pain

Started by Kathy Guthy. Last reply by Ian Conner Jun 27, 2011. 3 Replies

Comment Wall


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Comment by Kathy Cunliffe on September 22, 2009 at 10:25am
Hi, I'm Kathy and my son Joshua is 21. He was diagnosed at age 2 &1/2. I've been married 24 years to my husband Fred and have two younger children...Ian (age 17 and not affected) and Hannah (age 15). I'm new to this community forum but I attended my first Parent Project annual conference in 1998. Haven't been able to attend another for a variety of reasons, but I know I will appreciate the opportunity to talk with other parents and those affected by this disease. Having dealt with all of this for years, I find that those of us on the front lines hold much of the wisdom. Look forward to meeting others who are sharing in this difficult journey.

Comment by Susan Rathfelder on September 19, 2009 at 2:14pm
Hi Penny,

My son turned 18 in March. Glad to hear your son is doing well after back surgery.

Comment by Penny Pratt on September 19, 2009 at 9:13am
Hi my name is Penny and I have a son who will be turning 18 in December. His name is Dillon..He recently had back surgery and is doing well. He is a typical teenager..I joined this group so that I could be in contact with other in his age group.
Comment by Ian Anthony Griffiths on April 8, 2009 at 5:04pm
Hi All, my name is Ian, im 24 living with DMD from South Wales in the UK.

I've got a mini-tracheotomy in my throat, its not for breathing through, its to remove secretions from my chest.

Got a nippy ventilator which I use 15/16 hours a day.

Hope everyones well!
Comment by Carol Keskeny on March 28, 2009 at 2:21pm
I couldn't see some of the suggestions for relief of lower back pain. I know my son, Daniel's scoliosis is getting worse so I thought that was the cause. Any help would be greatly appreciated.
Comment by Susan Rathfelder on March 28, 2009 at 12:50pm
I can't tell you what his secret is. Although we have never been given a Duchenne's or Becker's diagnosis everyone has pretty much concluded he fits the Becker's profile more.He has had 2 DNA tests that have come back as unable to identify any mutation or deletion. We just had blood drawn for a third one, but when his neuro got the results she said they didn't do the tests she ordered, so we are still waiting. She had spoken with one of the genetic counselors at Duchenne Connect to figure out the best way to proceed, so we will see what happens with that. As far as the walking goes, we are suprised also, he never does any stretching or wears his night splints, he refuses. We even west through some serial casting this past summer and refused to do any stretching to keep the range they got from the casting. He can be stubborn. He can't stand up from a chair or the bed anymore, so we have to help him up. I don't know how much longer he will walk, but I am grateful for every day that he does. I am a little concerned about after the surgery, because he will be in stirrups for the 1 to 1-1/2 hour procedure. Not like child birth or anything, but still that is a long time for someone like him.

Comment by Chris's Mom..Chris Wade McClusky on March 28, 2009 at 1:25am
How painful!!!! poor guy. I'm sorry to hear that. But it good that he is still able to walk. What's his secret?
Comment by Susan Rathfelder on March 28, 2009 at 1:03am
Hi, my son is Jonathan and just turned 18. He is doing pretty well, he still walks around the house. He uses his manual power assist wheelchair when we go out which isn't very often. He is finishing up high school in an independent study program so we are pretty isolated. We recently started the process of getting a full power chair. On Tuesday, March 31st he is having surgery to remove a kidney stone in his ureter. Then he will have to undergo procedures to break up two other stones in his kidney.

Comment by Chris's Mom..Chris Wade McClusky on February 24, 2009 at 2:26am
Hi,my name is Dawn and I'm new to the group. My son Christopher is 20 and is doing pretty good. The only thing is he is very shy and doesn't have many friends. I want him to join but I don't think he will.
Comment by Cheryl Markey on February 10, 2009 at 4:46pm
Touchy situation, moms we don't really want to get involved when our sons are adults now and talk with their friends, but, it just depends on your own relationship you have with your son, if you can talk to his friends without him feeling like you are being a overprotective mom, then yes talk to them, he may not want to give up anymore of his independence and still feel like he can continue at somethings, and his friends may not realize this either, but, you as his mom and probaly his caregiver and sitting on the sideline can see what he may not want to accept to will only be doing it out of love for your on.
Good Luck on whatever you decide to do, I am sure his friends will understand your reasoning to talk hinestly with them. He is lucky to have his friends to hang with!


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