Hi Maxine --How come the older I get the farther away Australia gets? Larry and I have kind of pulled back from attending PPMD conferences, but we remain as enthusaistic about and supportive of the organization as ever. We continue to want to know how our friends and their children are doing, so I"m glad you checked in. Love, M-Lou
I left real early in the AM on the last day..Unfortunately, I came home to have 2 close friends die suddenly last wednesday and just got home from one funeral and going to another on Friday.. Been a very hard 10 days or so..but I will give you notice if I am showing up on your doorstep..and I won't treat you like a pooo..
Hi Maxine - I'm not sure if you rec'd my mail address!(I haven't quite found my way around the Site! ) It's firstname.lastname@example.org
I look forward to hearing from you, especially about the Conference!
Hello Maxine, Very briefly, I read your page about your son and he sounds so similar to my grandson! He is now 9 and we have decided to take him out of School.His Pre School teacher has offered to teach him "one on one". He has a wonderful vocab & general knowledge & is just "different'. (also has whopping outbursts when frustrated!) Like you, I feel that there is not much understanding or real hope offered in S.A. Please tell me if you know how we go about finding Ethans "deletions?" Regards, Lesley
Icame upon your home page quite by accident & was so pleased & surprised to find someone else from S.A.! My grandson is 9 yrs old and presents as DMD. His exact condition is ? even though he had a muscle biopsy @ age 3. How do I find out about discovering his deletions? He goes to DR Lippert & Prof Rhodda.He is on pulmison, &has had heel cord surgery.My email address: email@example.com many thanks, Lesley Henderson
Hi Maxine, hope all is well with you and your family. I know DMD boys that lack in what I call social skills, ie, they will ocmment on anyhting that comes to their mind...if someone has a big nose, they will certainly let them know! Mitch doesn't have this trait. He is very shy and introverted. You are doing the best that you can for your son. I am sorry to hear he cannot attend school wehre you live; that is very shameful on the part of your school and social system. You may consider volunteering for your son. Also have you considered a Canine Companion? Having a service dog can open up many avenues. Once your settled with your service dog, Jarryd can go to places such as schools and palces of business to talk with people about his dog and how geatly having his dog has affected his life. What breathing type machines does your son have? Your respiratory doctor should do a nocturnal oximetry test to see if your son needs assistance with breathign at night with a BiPAP machine. Also, his cough strength should be checked regulary. If he has a week cough, he should have a Cough Assist machine at home to help him cough when he has mucous in his throat, or food lodged in his esophogus. We also have a Nebulizer/Percussion machine to give daily breathing treatments with albuterol to keep the airways open. Mitch has only had theses machine since he was 18. Your respiratory doc should be doing tests every 6 months to stay on top of his lung volumes. Mitch just began Non-invasive volume ventilation for use, as he is retaining CO2. A simple blood gas test can discover this. There is also a breathing test that checks for CO2 levels. Ask your doc about this. If we can stay on top of things, our sons should live better qulity lives.It's so difficult as we do not have standardized care. There definately should be a standard of care for these guys. I cannot go to the conference, but am anxious to hear all about it. Take care Maxine. If you have any questions, feel free to ask. Please try not to be stressed out. You are doing your best for Jarryd. Remeber, you have a great resource with PPMD, we are always here for advise and assistance. Heidi
Hi Maxine, I am also 37 years old and we have two boys. One is turning 9 in November, Bernard and his has DMD and Christiaan is turning 5 in September, he does not have DMD. We live in Pretoria. I only registered today and was delited to see how many people is on the DMD community. Unfortunately we do not know if Bernard have mutation, deletions of duplication.
Good Morning Maxine;
I can not begin to explain the feelings og hearing from mom ( and Dad's) who share this common thread that we do being linkedby the neuro muscular challenges of our sons and DMD. The faces are similar in many cases as is the tremendous load our hearts cope with. The inspirations and "good" stuff luckily out weighs the less that rosie side of other parts of every day life.
I can not describe the "joy" Curtis talked about knowing he is not alone- "look mom their just like me" He asked me to zone in on the chairs as he was comparing equipment especially with fellows being from all over the vast world!
I am heading back to Kelowna this am, I will chat soon.
It is amazing, i am getting emails from moms with the same deletions as our boys, they all seem to be the same, weight problems. same degenerations at similar times, i would like to hear from more people with deletions 48 to 50 on the behaviour patterns of these young men and it also seems to be that these boys are over 20 which for me is just awsome, i would love to hear if this is similar in more young me with this deletion. it gives us hope. kind regards
Hello Maxine, I am a mom of a 23 year old son, Mitch. He has the same deletion (48-50) as your son. I am interested in discovering if boys with the same deletions have similar patterns of the disease. Your son is younger than Mitch, but maybe we can compare a little. Mitch was diagnosed at age 4. He was w/c bound by age 8. He needed the back surgery at age 14. Mitch had never taken prednisone as it was in the early experimenting stages back when Mitch was a young boy. Mitch has no dystrophin in his muscle. Some boys will have a trace, or quite a bit of dystrophin. Mitch has had a weight problem since young boyhood. He was not an over-eater, just his body type. Mitch also has the "moon-face" shape. As you probably know, some of the DMD boys are very thin, while others are more on the chunky side. Also, some boys walk into their teens, while others like my son, stop walking around age 8 or so. I just have this feeling that thes boys with the same deletions may have similar "patterns", similar progression of the disease. This may be helpful to parents, as it can give an indication what to prepare for and what to treat if at all possible. I did some research on the exons in the dystrophin gene and discovered that each piece of the gene corresponds to an area of the body. I find this quite intriguing!
Sorry to babble...you have a wonderful family! What a handsome group! I am a single mom, work part-time as a Physical Therapist Assistant; California licensed. I have Mitch, aged 23 with DMD, and a son Brett, 18 who just graduated from High School. He is college bound and has a scholarship to play baseball! Some day, I will load up pics on my "page." Mitch is doing well, does have some respiratory issues and now uses a BiPAP at night. He will soon be using a non-invasive assisted breathing venetilator during the daytime. Mitch will also soon have a G-tube placed as he is at high risk for aspirating. All of these things sound daunting, but they are not. The breathing assistance is a wonderful tool to help these boys live a good quality life and can keep them from getting sick from respiratory infections and so on. The feeding tube is viewed as positive. It will help Mitch get the calories and nutrition he needs along with ease of taking meds. I can also finally get enough fluids into him!
Well, I've certainly said enough; hopefully not too much!. Take care and I look forward to talking with you. I've never met anyone form South Africa before!...Heidi
Maxine I am so excited to able to talk with you!! I have wanted someone to talk to as well.
Luke doesn't take steriods either, never has, which has worked out well for him.
Luke is on what is called a Medicaid Waiver so ALL his medical and physical needs are met. He has had his harness strap since his back surgery 3 years ago, we don't leave home without it on. We ordered through our medical supply office. Here are a couple of links I found for them though.
Oh I am so happy you have emailed me!! I am on my way back to work and will write tons more later on tonite. I CAN'T wait. No I probally won't be at conference this year because I promised Luke I wouldn't go again without him. I think I recognize you from last year conference??