Nice to meet everyone I will meet here. I have a 27 y/o son with dmd who works full-time as a software engineer for that HUGE company we all know about near Seattle. My son and I went off to a university together, and I now take care of him over 100 miles away from my home and husband. We had to go where the work is. My son uses non-invasive venting to breath.(no trach) He has used this system during the daytime for over 6 years, and still uses v-pap at night. We are interesting in meeting other NIV users with dmd. Ann
Hello Samantha...Thanks for inviting me to be your friend. I am not sure if I did it right (accepting you as a friend), so please know it is a yes from me...even if I did it wrong. :) I enjoyed reading about your family, and I especially liked the part about how you deal with DMD. I am sure you are a great support to other families.
Hi Samantha! After looking at your photos, I can see that Justin is quite active. I love the picture with the curly wig! How old was he when diagnosed? I see a dog in several pictures with Justin. What is his name and does he help Justin? Tell Justin that I, too, love to fish and camp. If we are ever in your area, we will have to go on a fishing trip! My 5 year old grandson, Riley, has DMD. He enjoys boat riding and we hope, in time, he will learn to love to fish. He recently went fishing for crabs with his parents and sister and enjoyed it. We had a 5th wheel camper but sold it yesterday. We do, though, have a motor home that we will be able to continue to use for camping trips. Camping is a fabulous way for family to spend quality time together and slow down from the fast pace of living. Thanks for inviting me to be a friend and I look forward to our communications with each other. Have a wonderful day!
Nice hearing from you, My name is Mari Morales, I have been frequenting the PPMD page for about 2 yrs. My son is 7 and was diagnosed at age 5. This is the first time I registered to contact other parents/families. We lived in Santa Clara Ca, which is right in between San Jose and San Francisco. Now we are back in my hometown..Chico, a smaller town in Nor. Cal. We have not met any DMD families since we've been here, for about a yr. and I decided it was time to communicate with other families. My son Anthony I would say is in the transitional stage...still ambulant yet having fatigue, and falling more. We have been in limbo in regards to the Prednisone, but actually now will be picking it up at the pharmacy, we've tried the liquid, pills now we are trying the new quick-disolve one...we have been having difficulty because no matter what we put it in, Anthony say he can taste it. It has been a very emotionaql time these last two years, especially for Tony my husband...but as we are learning to deal with each others coping...things are getting better in that area. A bit about me...I am 30 yrs. old, will be married for 9 yrs. this Sep. I have a background in Social Work and I work at a continuatuion high school as a case manager for student services in atlernative education, my husband Tony is 41yrs. old and is a satellite tech. with Direct T.V. I have the summers off, we enjoy going on bike rides, my husband surfs..when we go to the beach, Anthony enjoys Legos a lot and of course video games...we have a big family as well that we're around a lot. Milio our newborn will be 3 months. I am on my sis's computer and will send pics. later. Have a great 4th!
I am new 2 PPMD, heard about it from a "new" DMD mom who called to ask q's about her young son. Since my son is 31- I have lots of logged on time with this disorder! All these are treasures for sure. The pictures I attached to my page are some snapshots of our diverse life with and with out DMD in the forefront.
What a loooong name for the flea market!! Guess the name has to fit with the size of the market! (Everything is bigger in Texas!) Sounds like you are not such a huge fan of the beast--can't say I would be either. How fun though to live in a small town. Kids there must get to do things like we did as kids--walk to a friends house, go get ice cream by themselves. etc. Although, I'm not sure what I am talking about b/c I didn't get to do those things!! LOL!! My husband did!! His graduating class had like 10 -12 kids!! I guess that is what happens when you are married long enough--can't remember what memories are yours and what are his!! I think it would be great to live in a smaller place--give and take to both I guess, huh?
Roland is not going to camp this year. He just doesn't want to be away from home. Last year he started saying that the Friday before they left and we almost had to drag him out the door. They had to call us on Tues or Wed that he was homesick, but he stayed the rest of the week. Last week he started getting upset about going so we decided we just couldn't make him go this year. Hopefully he will want to go again next year. We found out a couple of weeks ago, that he is getting his dog, finally. Hopefully if we get all the paperwork in quickly, he will go for that camp training Nov. 2 - 15th. He is so excited!! He is starting to have problems with his spine curving. We went to Scottish Rite a couple of weeks ago. He goes back in Sept for more x-rays to see how it is progressing and if, or more likely, when we will do surgery. We need to get everyone together soon after the boys get back from camp.
I think you had mentioned this site to me before, but I am just now checking it out. We finally have DSL and a laptop so it is making it easier for me to spend time online - plus I have more time now that school is out.
Not sure if you want to join (hope you will), but a group for Texans has started. Would love to get all those from Texas on there and then we should plan a big, ol' Texas size, Texas style barbeque, with brisket and all! (I had never heard of brisket b4 moving to Houston!) Might have to make it an over-nighter seeing as how TX is so big. Is Canton where the everyone heads for antiquing once or twice a year? I swear I remember an old neighbor of mine going there and returning with some great finds! Round Top is popular for folks from here. Maybe I'm just confused--you'll have 2 set me straight!