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!!
Hi!!! It's good to hear from you! How are you doing? We are doing fine on this end. Going back to Cincy in August to see how the steroids are working for Riley. How is Michael? The boys are adorable!! And, I see congrats is in order!! A baby girl! Yeah! Well, please let me know what is happening with you guys!
We just heard back today. They have had the results for a few weeks, but didn't really know what they meant so they were doing some more research. Apparently they have not seen results like Sam's before. His muscle is not "normal", but looks better than expected. The real kicker is that he is producing zero dystrophin. It doesn't match with what they thought. Leave it to Sam to be different. We don't really have any answers, but we are no worse off than we were before.
I can't wait to hear Michael's results. I bet you will get them soon. Let me know!
Hi! So glad that Michael's biopsy is scheduled. Sam has done very well. It was 2 weeks ago today and he is mostly healed. His steri-strips fell off yesterday and the incsion looks great. There will be a very minimal scar. It will take about a month to get the results so we are still waiting. I know you are anxious to get Michael's results too. His biopsy will go well and he will handle it fine. Sam was not the least bit worried and the staff was wonderful. Let us know how it goes.
my name is Phyllis I am from florida and like you and your husband we are in such a state of duh?? I am so alone in this new process. Our mda in tampa is horrible I got feed back from others about dr wong how about yours? Can you share anything? When you left did you leave with a better understanding? My son is seven and was just diagnosed in dec 08 our genetic test was done 3 weeks ago we are waiting on the confirmation from USF genetics. I feel like i am not doing enough...he has seen the cardiologist, neurologist and the gi doc but this is so gut wrenching to know he has this awful disease and i just sit by feeling helpless..i wont pitty party you i was just browsing and saw your story. I am glad for you guys that at least your son is bmd instead of dmd any feed back would be greatly appreciated,,good luck with your little girl lord knows they are 5 times wilder than boys...take care phyllis
We will be in Cincy on Wednesday and stay until the Monday. Our first appointments are on Wednesday afternoon. We are staying at the Kings Gate Marriott. Where are you staying? The Hyatt? We would love to see you while we are there.
I've stayed at the Hyatt as well. That's a very nice hotel! Great beds! I have thought about staying there again as well but I like being a little further out from the city and closer to the stores. The parking fees are pricey in those hotel garages too. My cell is 517-304-5564. I will call you when we are there! I know there are also a couple other families going as well during that time. Last time we went we stayed at the same hotel (the Crowne) with 4 other families. It was great to get all our boys together and then talking to other parents going through this is priceless! While my son can be very shy initially, he really enjoys meeting other boys when he goes there.
Daniel has been on steroids for 3 yrs. He has been more affected by the moodiness side effects of them but we try and keep a balance with a lower dosage and mood stabilizing drugs. I do not want to give up the only drug that will help my son stay ambulatory and prolong his function longer. He is still doing quite well. Walking, stairs and still running some. I have tons of photos and some video of Daniel on my page. I'll talk to you soon!!
Loving your new photos, some of them are just so wonderful.
How are you feeling? I can't believe I am halfway through this pregnancy, well we both are! This little baby likes to kick and turn and is starting to keep me awake at night with its constant movement. It's funny, that's somethign that James never did!
Anyway, we just got back from our holiday in Australia - a whole month of sun, surf and sand, The kids had an absolute blast and spent most of the time swimming in our pool. I didn't want to come back here to England, it made me so sad to leave that lifestyle and all my friends and family. I really don't like it here, but I have to "suck it up" for the next 18 months and then we will either go back to Australia or Singapore. With 4 kids, I'd prefer Singapore (for the live-in help) and James will be able to swim every day.
Anyway, just wondering if you are on facebook? If so, look me up - Sharyn Real Thompson. I am getting quite a group of DMD friends on there now and it's great keeping closer contact with them. I have become very close to some of them.
Well, it's almost 10am and I have been up since 2am - blame it on kids with jetlag - what a killer! I'm going to try and get them all off for a nap and I will join them!
Speak soon, take care of your gorgeous little family!