Kristin Linke's Page

hi kristin - how far are u from Toms River NJ??? a great friend of mine, lives there... her youngest has DMD. We found out 1 yr ago... i couldn't cope for many months but now am much better & have learned to get thru each day w/ grace & strength.... some days easier than others. call anytime 717-821-5666 cell - we are goingt o PPMD conference in June - I highty recommend it. xoxox

To be honest, I think I took the original diagnosis better than my husband; obviously, I was still devastated, I still cried, etc.., but I tend to approach difficulty with a very detached attitude (probably some kind of a defense mechanism, I am sure). That said, it was almost worse watching my husband react to the news than it was actually receiving it. There is a good thread on here someplace about dads and how men tend to react differently to crisis than women, particularly when it is something affecting their children. We have no family history, and turns out I am not a carrier. So looks like we just got the short end of the stick on this one, I guess.

This is all new to you, but I think you'll find as you read posts, and do research that you will come across many ways to deal with this new life plan you've been handed. Some families become very involved in gathering all the research they can, some families ignore all that and focus entirely on their child's day-to-day-life, and still others blend the two. None of these approaches is wrong, you have to do what is best for your family. No matter how you approach it though, remember that your son still has a wonderful life ahead of him full of great things to come. It is difficult at first not to see everything through the prism of what lies ahead, but you will miss out on so much opportunity and living if you focus entirely on the future. It's there, it's coming, of course; but in the meantime, you've got the first day of school, teeth to lose, learning to read and ride a bike, great vacations, and other wonderful things, all of which deserve to be celebrated and enjoyed to their fullest ... like expanding your family!! Congratulations, by the way! It's a whole new dynamic being a big brother, my son can tell you. :)

Hi Kristin. My son was diagnosed a little over a year ago when he was 8. Similar story, I began looking for answers about Cory's gait and large leg "muscles" when he was 5 and only found an answer through a chance remark in an email that was accidentally sent my way from the autism specialist at the school. You see, one of the many diagnoses for Cory included Asperger's Syndrome because he shows some behavioral problems. When Cory's diagnosis was revealed I had myself tested and am indeed a carrier as well. I live in a fairly small city and have found very little information about Duchenne here. Thanks to our PPMD community I have been able to re-learn how to function now in this new segment of our lives that includes Duchenne. I cried non-stop for 3 months after diagnosis. Now, more than a year later, I cry less and learn everything I can about Duchenne; I continue to look for that balance between loss, love, sadness, and joy and somehow life just unfolds. You have found the right place to look to when you need people to really understand. My heart goes out to you, allow time for tears, they will help you to heal.