Comment

Comment by Karen on March 6, 2013 at 1:13pm

Hi Dina

I understand your anxiety.  I tend to get anxious when my son shows a new weakness or is entering an untried environment.  On FB there are about 20 different groups.  In the "find people, place etc." line type in Duchenne MD.  A bunch will show up.  There's one on diet, respiratory and toileting; Assistive technology and education, spine fusion before and after, Treatments and Cures.  Feel free to friend me if you want.  Karen Twede

Comment by Dina on March 6, 2013 at 8:13am

I have a fb, but not sure where to look to find a group.  I have a hoyer lift and I'm in the process of getting a stander.  I guess my issue is just finding out as much information as I can.  Kind of what to expect in the next few years. I appreciate you responding back to me. Thanks.

Comment by Karen on March 5, 2013 at 7:29pm

Hi Dina,

My son has graduated from this group at the age of 20.  We found the transition to high school a positive experience.  I had a lot of anxiety and had meeting after meeting with them, but my son did great.  He liked having classes with multiple years.  My son uses at stander, power wheel chair and hoyer type lift.  A lot of folks have joined groups on FB.  What issues are your family facing?

Comment by Dina on March 5, 2013 at 6:31pm

Just looking for any feedback with what you are facing now.  What kind of equipment you are using, If anyone wants to share how their son transitioned to highschool? Seem like groups are a thing of the past.  No responses for 2 years, just trying to get it started again.

thanks

Comment by Karen on June 16, 2011 at 7:56pm

Hi

Erik is attending Western Washington University.  I'm not sure what to write about Erik.  If you have some specific questions in mind, I would be happy to respond.  At this point, Erik is commuting to college (30 miles away) by bus.  He needs help in the morning and at night, but negotiates the campus on his own.  He is signed up with the office for students with disabilities.  Right now the major accomodations he is getting is extra time on tests.  They also help off set the cost of his traveling with the debate team. (It costs more to get a bus with a lift and tie downs.)  His interests are history, current events, political science and sports.

Comment by ewh on June 16, 2011 at 9:09am

Karen, Could you tell me what university he is at and perhaps a little about Erik?

Thanks!

 

Comment by Karen on June 13, 2011 at 4:21pm

Hi

My son just finished his first year of University.  He wanted to go to college to earn a degree in accounting because he felt that this was a career that he could manage considering his physical restraints.  He would like to be able to support himself without being on public assistance.  Good luck.  Erik received quite a bit of community support for his tuition.

Comment by ewh on June 13, 2011 at 3:00pm

I am working on getting a full ride scholarship for boys with DMD at a Boston University.  I am looking for some stories about why you/your son wants to go to college to help my presentation.

Thanks