Eileen DeLong's Comments

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At 12:03am on November 28, 2008, Jean said…
Hope you all had a good Thanksgiving. Cold and dreary here on the High Plains, but plenty of warm food love around the table! Love the Thanksgiving picture!
At 12:24pm on November 1, 2008, Jeanne Donohoe said…
Hi Eileen,
Thank you for inviatation to be added to your list of friends.
Jeannie
At 9:23pm on October 30, 2008, Kristi Powell said…
Hey Eileen...sorry that I am a little on the slow side...I saw that you had requested to be my friend last month and I just NOW saw it...sorry :(

It is a HUGE comfort in knowing that we are not alone in this fight..amen to that!

I love your pictures, too cute for words!!!
Take care!
Kristi
At 12:30am on October 29, 2008, Jean said…
Hey, Eileen - I am new at this and just wrote you a note thnking you for your encouragement and quick acceptance into this largely unknown community. I don't know if you got the previous note, so am doing it again! Your pictures are wonderful and such handsome boys! Thank you for making me feel less alone and you seem to be taking care of your family very well! You are in my prayers tonight. Jean
At 10:21am on October 28, 2008, Marian Lamberson said…
Hello my dear,
Your photo's are wonderful....You have a beautiful family!!!! Keep them smilling!!!!
At 5:53pm on October 9, 2008, Pat Moeschen said…
Eileen-
I am here anytime you need me. Looking at your photos, so funny to see Dr. Wong on the floor too! I love her, she is great.
Stay in touch.
Pat Moeschen
Salem
At 5:31pm on October 5, 2008, Susana Arroyo said…
Hello Eileen
Sorry it took me forever to get back to you.
I was diagnosed at 5 years old, when I couldn't quite keep up with the kids in my Kindergarten Class.
my disease has progressed really slowly....
I can still walk quite a bit, but have to use a scooter for those long distances.
I have big calves, I lose my balance really easily, I cannot get up from the floor by myself, I can't run or jump, stairs are really difficult, and i need assistance getting up from chairs.
I still shower & go to the bathroom all by myself but getting up from the toilet is getting harder and harder.
Were currently looking for what devices are out there that could help me.
I have been on steroids for almost 3 years and they have really helped me.
By breathing is completly normal, but i have been having some heart issues, nothing really serious just an abnormal heart beat.
At 12:53pm on October 2, 2008, Rafael said…
Hello Eileen,
Thank you for finding us on the PPMD comunity.
At 6:00pm on September 30, 2008, Rhonda said…
Wow, what a small world. I have a sister who has a business in Grinnell and lives just outside of town. My niece goes to
Grinnell college. You aren't by chance any relation to the DeLongs who have a business in Grinnell? My sister worked there for years in their art department before setting out and starting her own business. We will have to compare notes.

Take care,
Rhonda
At 4:36pm on September 29, 2008, Susan Rathfelder said…
Eileen,

Hi! My son has had 2 DNA tests and they both have come back as unable to find a deletion or mutation. We are looking into more tests so hopefully we will be able to have some more testing done and they will be able to find it.

Have a blessed day,
Susan
At 3:12am on September 27, 2008, Kelly Bruhl said…
Hi Eileen,
I replied to you previously. I finally got my genetics testing back. Surprise, surprise, I also have a 3-7 deletion. Did Dr. Wong suggest that you do anything (medication, etc)? My son is going to see her again in December, but my husband was going to take him. I am thinking that I should go too. Maybe I could even get in to see Dr. Cripe. I am feeling very anxious about the unknown. My symptoms have definitely progressed over the last 5 years or so. Looking forward to hearing from you. -Kelly
At 7:56pm on September 26, 2008,
Staff
Pat Furlong
said…
Hello Eileen, Welcome to the PPMD community site. You are not alone, rather have a new family. Please let me know if I can be of help. Warm regards, Pat
At 2:13pm on September 26, 2008, Christine Piacentino said…
Hi Eileen - Glad you are here. Thanks for adding me as friend
At 1:56pm on September 26, 2008, Donna Taylor said…
Hi Eileen! It's been so long since I've heard from you. I was so happy to see your name pop up on my email. Jordan is still doing quite well...13 years old, 8th grade and still walking (he's also a 3-7 deletion for anyone else reading this). He just has trouble walking long distances so we're trying to get him a scooter. Things have finally settled down for us and I have learned how to laugh and have fun again. Those first two years after diagnosis were really tough.
Donna
At 12:37pm on September 26, 2008, Lisa Jones said…
Thank you for adding me as a friend and welcome to the PPMD community.
At 10:12pm on September 21, 2008, Kathy said…
Eileen, hey sorry it's taken so long to respond to your post,we have been without power for a week due to hurricane IKE. Did your cousins have heart complications? We recenlty saw the genetic cardiolgists and they told us that the deletions 3-7 typically have heart problems, starting at 14, We see Dr Wong in Feb and that is going to be one of my first questions to her. This caridolgist also told us that exersice made it even worse, I asked him why since it is so good for your heart when you don't have DMD and he shrugged his shoulders. Any way I wondered since you had some kin with the same deletion if this was true for them. Thanks

Kathy
At 11:21pm on September 18, 2008, Nicole Norris said…
hi, it's rich,thanks 4 sharing info,love to hear about the ages,it gives us more promise/hope ,rich poole
At 8:39pm on September 16, 2008, Eileen DeLong said…
This is Dad, (Eileen Husband). ??I love that she is so involved, it was hard for me at first (24+ months) to even be able to discuss the issue with out getting all upset. She has been there for me and I hope I have been able to return the favor. (oh yea, she has been there for the boys too) :)
At 6:42pm on September 12, 2008, Tonya said…
Dear Eileen,

Wow, I can't beleive how similar our stories really are. I have been on this site everyday and haven't found anyone with a story like ours of the family history. Our family always watched the Jerry Lewis Telethon and always donated. I never imagined that our son would actually ever have DMD. I like you, talked to my doctor, consulted with genetic counselors, but my cousin was so much older and we didn't know what his mutation was. Like you my cousin Mark lived far away and passed away 20 years ago. We were told it would be very difficult to know for sure whether I was a carrier. My sister is a carrier too, but her 10 year old daughter isn't. Both of my kids are affected, Gavin having DMD and Isabella a carrier. Although I can't even imagine what you have gone through. Being diagnosed with breast cancer and dealing with the DMD. I'm so glad you have a wonderful husband to share your life with and be there for you through anything. I'm lucky in that area too!! I want so badly to be able to let the guilt go and sometimes I can. Then something even a small thing can make me feel it again. One thing that helps me is to just look at my little ones and honestly I can't imagine life if they had never exsisted. Also like your family members my cousin just always had a smile and lived his life. He had the best sense of humor and was no different than anyone else and really seemed happier than most. Here in Seattle when Gavin was diagnosed they told us they didn't know for sure if my cousin had really bad Becker or Duchenne. Obviously, it was Duchenne, he passed away at almost 27. Dr. Wong also confirmed that for us. I believe with her help the outcome will be much different for our boys. Also the fact that your cousins lived into their 40's is very encouraging for Jared and Calvin. I hope you know that you have really helped me. I appreciate so much your openess. I'm so glad you found me because I really feel that we can relate in so many ways. I would love to meet you and your boys sometime. Who knows maybe when we go to Cincinnati we will run into you. We are going this year in May. Do you go to the PPMD Conference? We couldn't go this year, but hopefully we will next year or the year after.

Tonya :-)
At 3:30pm on September 12, 2008, Kelly Bruhl said…
I see that you are listed as a manifesting carrier. What kind of symptoms do you have? I am waiting (have been for 2 months!) for my carrier testing to come back. Doctors have repeatedly tested me for arthritis, thyroid, chronic fatique, etc trying to figure out why I have physical problems; never thinking about genetics testing. I almost hope I come back positive, b/c it would explain so much. -Kelly

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