Susan Rathfelder's Comments

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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
At 9:44pm on February 5, 2010, jenn said…
the stander comes next week for a trial run, and the lift van should be ready wednesday. as sad as the equipment makes me (it is everywhere in our home) i feel lucky we have them to care for austin. i have to say, the hoyer has changed my life. it takes longer to use a lift but so worth it! austin loves the sling on the lift, he likes to just "hang out" in it. i wish this stuff came in attractive colors and such like wheelchairs do though
At 3:16am on February 5, 2010, Tina & Darren Harris said…
Sorry I did not ask you . Has your son had a starlight wish or any wish ? If you like look at my group starlight wish. Try and see if there is some one in your part of the world that can give your son something or somewhere he wishes to go before life is to slow right down.
pleas fell free to look at my photos.
Tina Harris
At 3:09am on February 5, 2010, Tina & Darren Harris said…
Hi Susan Tina hear. (you have the same name as my mum) we love your Van . We have a V8 Holden and we love it to bits and we are sad to see it go but we must do what we need to for Tyran.
Well we are thinking of getting a big van just like yours but a GMC .But we will need it to be sent to us to Australia and we are not to shore how much its going to cost.
We don't have much to pick from over hear on vans for power wheelchairs and we wish to have something that looks good and helps Tyran fill like going out . if you have any info you think will help us pleas let us know.
Thanks Tina & Darren Harris.
At 9:43pm on January 26, 2010, Ivy Scherbarth said…
No doubt! Thanks for sharing this story with me.
At 9:28pm on December 7, 2009, Terri Poh-Pardun said…
Thank you and nice to meat you. Theresa
At 5:05pm on December 7, 2009, Missy Shutts said…
I love it! I am so glad you got a pic of Jon! He is so handsome - he doesn't need to hide from the camera! :)
At 10:08pm on September 28, 2009, Alan Bodtmann said…
He was diagnosed in July of 2005. He is 9 yrs old. This will be our 3ed year out of the last 4 that i am walking down in disney. Broke my ankle last year!!!
Alan Is still walking but he is having a harder time more and more. We actually have orded his power wheelchair and we are waiting for the insurance company to fund it. About 2 more weeks on that and we will have it by Halloween. He will be using it when we go n long walks and such. But we wanted to have it for the day when he has to be in it and we don't have to wait for it for 3 months!
At 1:52am on September 9, 2009, Kim Maddux said…
Hi Susan - It was great meeting you too. I wish we had more time with everyone. We just got home from our Disneyland trip about 3 hours ago. We had a great time but glad to be home. Take care
At 8:21pm on August 31, 2009, Jeff Marr said…
Howdy back! We did the new van thing four years ago, and now we have a champaign colored E-250 that my kids dubbed the "Admiral Ackbar",
At 3:44pm on June 8, 2009, Johanna said…
Hi Susan
Thank you for taking the time to comment on my page regarding your family not knowing where in Jonathan's DNA the DMD has occured. We are back at Great Ormonde Street in 2 weeks and I think they are going to ask for another muscle biopsy. My local genetics team have recently conducted a linkage study and have identified that my sister has the "at risk" x. Although this still doesn't solve the urgent issue of Archie it has now made my sister aware (plus she has 2 daughters) and we have been told that there would be some help for her and her husband if they wanted another child and I would be offered the full IVF treatment if I were to meet someone and want another child. Thank God we don't have to worry about insurance as we have the NHS!!!!
Anyway thanks again and I wish you and your family all the very best
Johanna x
At 5:51pm on April 8, 2009, Ian Anthony Griffiths said…
Hi Susan thanks for posting on my profile page! hope your well.
At 6:37pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 12:42am on September 25, 2008, Jill Keenan said…
Just checking in to see how you are doing. Hope you had a great summer. I hated to see it end. Well, wait, summer is not over--it's still hotter than heck here--school is just in session=) Can't wait for cooler weather. (The next 3-5 days are supposed to be nice-75-80 with low humidity! Yeah!!) Did you get results back from the pulmonologist yet? I remember you said you were a bit concerned about this area. Hope he got an A+! How is he doing--still socializing with you all? Hope so!
Well, I just wanted to shout out a quick hello! Talk to you soon!
Jill
At 1:27pm on September 20, 2008, Julie Garcia said…
Susan, sounds good. Keep us posted on your Rep.

You take care,

Julie
At 6:38pm on September 19, 2008, Julie Garcia said…
Susan,

That is great! Can you respond back to the e-mail and let them know you are following on the support for H.R.5265 and noticed they are not showing as signing on yet. You hope you can still count on their support.

That would be perfect!

Julie

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