I am 35 years old originally from California and moved out here to Arizona 8 years ago. I found out that my son has Muscular Dystrophy in July of 08. It does not run in my family and I am not a carrier.
So as an update, as of July of 09 and we have finally confirmed his diagnoses. He has BMD. We are very excited about the news. Although it is bitter-sweet news. I truly have found so much strength and support on this website. I have to thank Pat, Ryan, and Jill for all you have done for our family. You are our angels.
About my family:
I am married with 2 boys. 6 year old Michael and 3 year old Tyler. We took the chance on a third child and we now have a 20 month old baby girl named Rylan. My son Tyler does not have MD. We are "on the go" people at all times. We love to ride motorcycles, go camping and we love taking the boat out to the lake. Everything we do, we do for our family. We call ourselves "Team Burnstein". We are a team and we will always stick together through hard times, fun times, scary times, & exciting times. My husband just joined PPMD. If your husband is on here, have him look up my husband. Brent Burnstein. I think it would be good for him to talk with other dads.
Name(s) of child(ren)/individual(s) with Duchenne:
That is how I feel most of the time. My dad is also battling Lymphoma right now. He has just started a stem cell transplant. You are right. Most days I do feel calmer, the little things don't get to me anymore. Perspective, maybe that is a "gift" we all get from this. Believe me I would rather have my son healthy but this and my dad's cancer has put things into perspective. God and family are important the other stuff is filler.
Thanks, it is great to have contact with someone who is going through this as well. I will keep your family in my prayers!
Thank you. You said a lot of how I feel. It took us four years to get a diagnoses. Connor always got bad leg cramps. We saw his regular doctor several times, an orthopedic doctor, and 2 physical therapists over the course of 4 years. All came to the conclusion that Connor had a habit of walking on his toes and that is what caused the cramps. So for four years we told him to "put his feet down" , we made him walk when he was tired, we were frustrated when he couldn't ride a bike as far as his little brother, and so on. This Summer Connor got cramps in his arms for the first time. I knew that coudn't be from "toe walking". We were finnally refered to a neurologist. I still did not expect this diagnoses in the least. No one ever mentioned md. Connor is normal in every other way. My world crashed. I too decided to fight. I thought about the parents who lose their child in a car wreck. They don't get a chance to fight. I have faith that a miracle is coming. We see Dr. Weig at Chapel Hill. So far I am pretty satisfied. We may later decide to see Dr Wong. Thank you for your support. One thing I am struggling with in all of this is being a good friend to people I have been friends with for years. They just don't understand and I have little patience for their "problems" b/c I would give my right arm to trade problems. One of my friends got divorced this year and she told me how we are in the same boat as far as a bad year. This shouldn't have made me mad. I am sure it was a difficult time but all I could think was as much as I love my husband I would divorce him in a minute to save my son. I am not saying my friends are the ones with the issue. I know it is me. I can not continue to belittle their problems or I will have no one left. I guess I took you up on that venting thing, thank you!
We got our diagnoses in Aug 2009. It is Beckers but our neurologist said it would be about a year or so before we know for sure (he didn't feel a muscle biopsy was necessary) Connor gets a lot of leg cramps but doesn't really seem to have too much weakness in the legs. Our neurologist detected some in the shoulders. I am a little concerned because I just saw on someone else's post, someone who has Connor's same deletion but a DMD diagnoses. I have requested to be her friend so maybe we can talk. Otherwise, we are doing pretty well. The diagnoses was devastating but it is amazing how life goes on. I still have bad moments but life is as normal as it could be. I saw that your son has a definite BMD diagnoses. How is he doing. I read he likes to swim. Connor does too. He will be starting swim lessons again in about a month. Thank you for checking in on us. It is nice to talk to others who have an idea of what we are going through!
Hi Tamara-- I wanted to touch base b/c our sons were diagnosed at the same time. My son is 7 and 1/2, and ha been doing great. Only recently have I worried about whether or not he is having more difficulty with the stairs. He is exhausted though, some days spending as much as 4 hours in the pool. He is having so much fun I want to just let hm go.
I am so thrilled for you that your son has been confirmed Beckers. Do you mind my asking how that came to be? My son is out of frame deletion and has a high cpk of 20,300. His doctors at CHOP in Philly keep saying he is presenting very mildly though. We don't go to Cinn. until Feb.
By the way, congrats on the new baby! We are expecting a 3rd in Nov. I am determined to not have this diagnosis stop my life, and we are all excited about the baby, and trying to continue on as normally as we can.
READING THROUGH YOUR COMMENTS i saw that you are going to church for the first time. I think that is great. My husband and I have gone back to church since a long time. It has helped us so much! Take care,
We had a biopsy done. All I remember from it, I was told I could be cured. I actually was able to play varsity tennis. It's really a good thing that you are letting Michael have a normal childhood. If he stays active and keeps his muscles working, you never know he could turn into a strong athlete.
I unfortunately don't know any other adults that have Muscular Dystrophy. I got involved in the web site, because I would like to create a mentor program, to help kids with Muscular Dystrophy.
I was diagnosed with BMD at the age of six. I had a biopsy done to check if I could be cured. They said yes. The pain was awful at times when I was younger. I had the issue where my parents had to carry me when we were going long distances. After a short distance of walking, my legs would give in. But the pain decreased as the years progressed. I played soccer, baseball, basketball, swam and biked. Soccer was the worst because of all the running. It was also where I got the most insults from my peers. The best thing my parents did was never let me or make me stop playing any sport I wanted to. I was never the best and always had to deal with instants of pain. The best thing that happened here, my parents never deterred me. I did have the opportunity to play varsity tennis in high school. Through this process, I never took steroids or any medication. All I did was stay active and go to physical therapy twice a week. I am now in a routine of working out up to five times a week, and still seeing a physical therapist.
I found that the worst thing for me is not being active, as my muscles get tighter. I don't know if that is the same for everyone. The best thing you can do is let Michael explore all activities. He will be able to tell you what he can and can't do. You will be able to monitor him.
Not sure if his body will go through the same progression as mine, but I am here to help with anything.
One thing I forgot. I grew up loving sports. I knew what I could and couldn't do as I got older. I wasn't going to play past high school, but now I work for ESPN, putting together game highlights, news and feature clips for dot.com and mobile devices. I was able to turn my love for playing sports, into a career.
Oh Tamara! That is great news! I know it sounds silly to be excited about Beckers, but especially if it's mild to moderate, to me that is a world of a difference! Please let me know what Dr. Wong has to say about this when you get back with her!! I bet the boys are excited about a little sister! And, OMG, I know you must be so uncomfortable pregnate in this heat! It has been in the 100s here too! We're getting rain this week which has drop the temp down to low 90s! Yeah! lol! We're doing fine. Riley just got his 'night boots', lol, and instead of wearing them at night, he keeps wanting to walk around the house with them on! I just know he's gonna break them! lol! We go back to Cincy in August for his 6 month visit since starting the steroid. I don't see any decrease in strenght, so that's good! I do find he is walking, running, and climbing better, so I am anxious to see what Dr. Wong says. Our ENT here wants to take his tonsils and adnoids out and put tubes in his ears though....I am waiting to go to Cincy to see what to do. He has never had throat or ear infections! The doc is concerned because his ears produce a lot of fluid and it is affecting his hearing. Also, his adnoids are enlarged and the doc is worried about sleep apena, but....I just prefer to see if the docs in Cincy agree that the surgery is necessary before going through with it. I am nervous about the whole anesthesia issue and what to do about the steroids if he can't swallow?
I did not go to conference because we had originally had Riley's surgery scheduled for July 6. I have been kicking myself wishing I could have gone! It is suppose to be in Denver next year and I just can't see myself missing it again!!!! Some of the other parents are already talking of taking the kids to conference next year, but I'll have to see if we can affod that and if we can bring a sitter. I did go to the Advocacy conference in Feb. in DC...I REALLY want to do that again too, it was awesome!! Well, keep me update on whats happening with you all!!