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Outliers - Intermediate …

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DMD RECIPE IDEAS

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Living with Duchenne (ag…

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Duchenne Smiles

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Power Wheelchair Batteries

Started this discussion. Last reply by Susan Rathfelder Jan 20, 2010. 9 Replies 0 Favorites

Shower Chair

Started this discussion. Last reply by Dean Johnson Jan 5, 2011. 4 Replies 0 Favorites

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About me:: I have been married for 27 years and am the mom of 3 kids--two daughters ages 25 and 21 and one son age 20. My son was diagnosed with MD at age 9.

About my family:: At 19 my son is still walking around the house, but is using his new full power wheelchair more and more. He currently working on his GED. My daughters are both in college and still live at home.

Name(s) of child(ren)/individual(s) with Duchenne:: Jonathan

Age(s) of child(ren)/individual(s) with Duchenne:: 19 or older

City:: Lakewood, CA

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Are we supposed to know?

Posted on October 8, 2009 at 4:02pm 3 Comments 0 Favorites

We just got back from the neurologists office where we got the DNA test results back. This is the test done at Athena Diagnostics and it did not shed any light on the subject at all. The results came back as - "This analysis did not detect any deletion/duplication nor any abnormal DNA sequence variants in this individual's DMD gene." So after 3 DNA tests and a muscle biopsy all we know is that there was very little dystrophin found in his muscle sample. None of this changes anything, so maybe… Continue

Kidney Stones - Round 2

Posted on June 2, 2009 at 7:30pm 0 Comments 0 Favorites

Yesterday Jonathan had his remaining kidney stones 'blasted' by lithotripsy. It was successful, the Dr. said the stone was 'blasted' to dust. He is having no trouble so far passing the broken up stone. We go for another x-ray and to see the urologist in 2 weeks. If everything is clear they will make the arrangements to remove the stent in his right ureter. I hope they can figure out what caused him to form these stones so we can prevent having to go through this again. Two of his seizure meds… Continue

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At 6:01am on April 7, 2011, Trinh Nguyen said…: Dear Susan,

I am new member of DMD. I searched "discussion" issue and saw you mentioned book "Physical Therapy Management of Muscular Dystrophy" by MaryBeth Deering. If you still keep scan copy, can you kindly send to me. Is it possible to send by e-mail ? (I mean not too heavy by e-mail). My e-mail address is : trinh_nguyen@nst-vn.com.vn

I am living in Vietnam here we do not have much data about DMD.

Your help is much appreciated.

Trinh

At 8:54pm on October 4, 2010, Leeandra Arhdeacon said…: Susan I wanted to Thankyou for sharing with me about Jon going to a private non-profit pool, i found one and nicholas starts next week! woo hoo, we have him in swiming also...I think he feels FREE in the pool and has no limits ( he cant trip and fall). He has his independence, of which i can see he is loosing rapidly. I dont understand one thing, i hear some kids walking for a long time and others sooner. Nicholas is almost 4 and we do streching everyday with massage and he cant bend down to pick items up without falling, i dont get ant answers from the doctors or therapist...its almost like they just want me to foreget it and accept it. I cant, do that with out a fight... well I just wanted to say thank you for your great advice!

At 8:05pm on August 23, 2010, Leeandra Arhdeacon said…: Thank you for the info, do you know of anything else i can get him enrolled in or other programs? So far he is seeing a private speech, OT and PT, i am still waiting for his AFO's to be approved, by CCS, and i cant find a aquatic therapist that will see him due to his age...

At 11:43am on February 24, 2010, Cindy said…: Hi Susan, I am sorry it has taken me so much time to respond. I am not on here much...but am on Facebook more often. We would love to meet with you and your son. My son just started playing Power Wheelchair Soccer and is loving it! We will go to the Regional Tournament in San Jose next month. We are only 20 minutes from Lakewood and would love to get together with you and your son sometime. Let me know if you would be interested in meeting. Does your son play video games online? My son is on XBox 360 Live quite a bit. I have spoken to the MDA office to host a Teenager/Young Adult group for our kids.

At 5:26pm on February 11, 2010, Tina & Darren Harris said…: Hi Susan sorry its taken me so long to get back to you . we are all ways flat out never a days rest. thank you for you info on the car and i think we will need to sit down and have a big think on what we want in a car . did you see i have changed my page....not bad hay . tyran loves it . well darren is doing so well now and its been 9 day's since he had his op and to look at him you would not think he even had an op. anyway i will go now and chat to soon tina