PPMD Community

Carol Keskeny's Comments

At 4:31am on January 5, 2018, Margarita Yashchenko said…: My number mobile phone +380504870457. We can use Viber

At 4:08am on January 5, 2018, Margarita Yashchenko said…: "Hello, Dear Carol! I wrote to you the letter to your email again"

At 2:11am on January 4, 2018, Margarita Yashchenko said…: Hello, Carol! I wrote to you the letter to your email.

At 12:54pm on December 10, 2017, Margarita Yashchenko said…: My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. My name is Margarita, I live in Ukraine, Kirovograd. I have a son, who is ill with Duchenne. He is now 10 years old. Doctors diagnosed the illness at the age of 6.5. In Ukraine, no one treats such children. Therefore, we are forced to travel to Israel each year to see a neurologist. There we learned how to swim in the pool, ride a horse, do special exercises (such asstretching) every day. For 2 years we have been able to stop the disease. But last 2 years my son fells woster than it was early. I would like to communicate with the American parents and doctors who probably know more about new medicines or methods for treating this condition. My email my-science@ukr.net. If you have a free time write me on my email I wiil wait.

At 10:08pm on October 4, 2009, Perlita & Gordy Hains said…: hi carol - just ran across ur page & wanted to say HI - I was brought to tears when I read that you never thought you'd see the day your son turned 22. Our Levi just turned 3 and was recently dx w/ DMD - all we want is for him to turn 22, 32, 42, 52 etc. we have great family helping us and PPMD has been amazing. Your son looks so happy. and thaty's all we want for Levi and his 2 older bros who do NOT have DMD. well just want to say HI perlita

At 4:25pm on July 6, 2009, Christine Stalling said…: Carol, thanks for the link to the article about the brain and Duchenne. Did you ever take Daniel to a neuropsych when he was younger? I am thinking about doing so for Cory after reading the article.

At 7:53pm on June 30, 2009, Christine Stalling said…: Hi Carol. Thanks for the link to the article, I look forward to reading it. I am sorry to hear of all your recent troubles. When it rains it pours! Lets talk soon.

At 8:04am on May 5, 2009, Christine Stalling said…: Carol, I would love to meet you--Wednesday would work. This sense of insanity is overwhelming, every step of the way has been frustrating. When Cory started kindergarten there were some problems at school which after trial and error turned out to be Aspergers. Good news, he was set up with an IEP and his school has been really great. He was also toe-walking at 6 so we went to his ped. who sent us to a ped. orth. surgeon. Dx was idiopathic and they casted him. That didn't do much so he suggested surgery, I said no (surgery when dx is idiopathic?). November '08, a teacher's off-the-cuff comment "he walks like one of my MD students" sent me through this latest labyrinth trying to get a dx. One dr. told me to go to a child psych. Finally found MDA through the internet and got a dx in Jan and genetics lab in March. But that is about all they can offer. Many hours of research and I have found very interesting work on the connection btwn autism spectrum and DMD. I just really need to find the best place to take Cory for real help.

At 7:57pm on May 4, 2009, Christine Stalling said…: Oh Carol, thank you so much for writing back. I look forward to talking to you!

At 6:59pm on May 4, 2009, Christine Stalling said…: Hi Carol. I just joined PPMD and was looking for parents of children with DMD in Montana. I live in Missoula and my son Cory is 8 yrs. I thought I should introduce myself here because Paula H. mentioned your name to me. Just wanted to say hello.

At 10:16pm on April 29, 2009, Timothy said…: My son was diagnosed at age 6.He will be 30 in June.His twin passed in 2003.Don't give up hope sometimes these guys will surprise you.

At 9:56am on April 27, 2009, Ada said…: Hey Carol,

My son (Jeff) is 22 now and has been bedbond for two years because of his scoliosis and had to start using a bipap 24/7 at that time. I use liquid Loratap and about 4 Advil a day for the back pain.

Don't know of any shoes Jeff has not worn shoes in years and his foot drop is also bad.

At 4:03pm on January 25, 2009, Holly Cahoon said…: Hey Carol, my 11 year old son also has DMD, that is so awesome your son is now 22. I try to not think about the future of when this disease will take him from us and I often get pretty depressed, with every Birthday I wonder how many more he will have, so it's sooo good to see you and your son at 22. Gives me hope :)
My son had drop foot really bad, he had the heel cord surgery done, was scary and a HARD time believe me, but now that he is all healed from it, we are so happy we had it done, he's much more comfortable in his shoes and appearance. He can wear just regular velcro shoes now.

At 7:45pm on January 16, 2009, Stacy Anderson said…: Hey Carol,
My 10 year old son has DMD and I get really down sometimes but seeing that your son is now 22, that just lifts my spirits! That is so amazing to me. I would love to get to know you and maybe hear more about your son. I am always open to advice and hope to talk to you real soon.