Comment

Comment by Laura Hermann on December 27, 2010 at 3:46pm

“Hello, my name is Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student at the University of Vermont working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done completely online. If you choose to participate in the study you will complete a three questions survey using surveymonkey.com . You must be 18 or older to participate. If interested in participating or want to know more about the study please click on the link below. Thank you! Sincerely, Laura.”

Link: http://www.surveymonkey.com/s/339CR8K

Comment by Jane Belland Karwoski on October 31, 2010 at 3:22am

Hi, Since siblings are often concerned about possible genetic risks, I thought you might be interested in this. I've been working on developing a resource for carriers of any genetic condition or predisposition. It is still in early stages and I hope to develop it further with input from others about what they would find helpful (scroll down to my first post there to see what I have in mind). My blog is at http://www.mybluegenome.com and I'm at http://twitter.com/mybluegenome.
If this is of interest, I would love to have you follow me at either or both!

Comment by Laura Hermann on October 25, 2010 at 7:46pm

“Hello, my name is Laura and I have a younger brother with Duchene muscular dystrophy. I am a nursing student at the University of Vermont working on an undergraduate research project looking into the experiences of people who have grown up with siblings who have Duchene muscular dystrophy. The study is anonymous and done completely online. If you choose to participate in the study you will complete a three questions survey using surveymonkey.com . You must be 18 or older to participate. If interested in participating or want to know more about the study please click on the link below. Thank you! Sincerely, Laura.”

Link: http://www.surveymonkey.com/s/339CR8K

Comment by Jane Belland Karwoski on August 19, 2010 at 2:58am

Hi Leila,
It's been a Long Time since I was 23, but I hate to see your post go unanswered. You are at one of life's major transition points, so it will take time to adjust. It has been over 3 months since you posted your comment. How are you doing now?
Are you close enough to come home for lunch, even occasionally? Can you text him? I remember how thrilled my brother was to get letters from me when I was away at summer camp.
Please update us! Best wishes,
Jane

Comment by Leila on May 4, 2010 at 8:43pm

Hi, my name is Leila and I am 23 years old. My brother Steven has DMD and is 24 years old. We have a younger brother, Evan who is healthy and is 18. I am wondering if there are any sisters out there to talk to. My family is wonderful but I am at a difficult age right now just having started my first job. Leaving Steven every day at home is very hard and emotional and I am constantly feeling guilty about having a life and Steven being so depressed. I am wondering if anyone shares these emotions and what are some positive ways to deal with this. Thanks for listening.

Comment by Joshua's mom on March 19, 2010 at 11:56am

That pretty well sums up Jacob! He's the only healthy one in the family! His brother has DMD, I have epilepsy, and his dad has Fibromyalgia. We're one "sick" family with no sarcasm intended.

Jacob doesn't want to talk, but does keep a diary. We are allowed to read it when he is ready to talk though. It was a slap in the face to him when Joshua needed to start therapies and was able to talk! There is an age gap of 4 years, but Jacob is way too mature for his age. I think that has a lot to do with family health problems. He is also starting puberty which adds to the anger issues too.

Sometimes the white hair starts to grow faster than we ever thought it would!!!

Naomi

Comment by Jane Belland Karwoski on March 19, 2010 at 11:30am

Hi Naomi,
Welcome! I am going to start a discussion on sibling rivalry and see if that increases the conversation on the Sibling Forum. Looking over the past posts (scattered over several years) seems like it is the most common issue brought up. Sometimes it seems like one more item in the lottery of family-having. Will my kids be healthy? Will they get along?? Both with tremendous impact on one's life, not to mention theirs!! But, after all, that *is* life I suppose one could say. Anyway, let's see what happens!
btw (By the way), now that Mom has been with us over a year, one of the major things I long for is time to be "by myself, away [for a while] from my mom" and from being on call. There is a state of readiness that wears one out. I wonder how much of that would be inherent in parenting, and how much is unique to disability among family members. I'm thinking of decorating and furnishing my walk-in closet!! ;) Seriously.
Here's one angle on Jacob--could it be that his resentment goes hand-in-hand with his awareness of Joshua's needs and his own better health putting him in a position of obligation, morally, to help? That awareness and compassion is vying with his natural child's desire to fulfill his own needs first (most kids having to learn to overcome ego-centered motivations). In other words, maybe his resentment stems not just from resenting his life being impacted by something that happened not to him, but to his brother, but from his conflict over what he thinks it would be good and noble to feel and what his normal self wants to do.
I distinctly remember at age 10 or earlier, lying on my bed thinking angrily, "I should be able to have a *normal* (read, *perfect*) childhood!! Instead, look at me! at us! Grrrrr...."

Comment by Joshua's mom on March 19, 2010 at 10:52am

Jacob is 11 and his brother, Joshua (DMD) is now 7... I know...7-11! Jacob has a lot of resentment toward his brother. They always argue, have temper flares, and Jacob always wants to be by himself / away from his brother. They have been to counseling together, individually, and family. This has been going on for a couple... maybe while. Anyone else?

Naomi

Comment by Heather Breslawski on October 14, 2009 at 8:48am

Leigh, welcome to PPMD. I recently joined as well and wish that I knew about this group when I was younger. I am 24 years old and have a 20 year old brother that was diagnosed with Duchenne's when he was 4. I'm glad to see that you are thinking about your other children, because this is a disease that effects the entire family. As a sibling of this myself, I recommend including them in doctor's visits and MDA/PPMD functions as much as possible. The limitations of this disease make it difficult for siblings to communicate and interact with their brothers, but helping them to understand the disease will make it easier for them, you, and Andrew. Good luck with everything. You will do great!

Comment by Jane Belland Karwoski on July 8, 2009 at 2:58am

Hello, My brother was about 3 years older than me, so DMD was the ground in which I grew. Although that was all a very long time ago, I am in a "deja-vu" situation now with my mom (89 yrs young) living with us. Odd the things that take you back in an instant--like clipping her fingernails, something I always did for Alan. Or standing by her bed handing her a drink. Full circle? I love having her here, complete with the occasional exasperations! I took my first out-of-town trip last week (3 days to a conference) and it was really neat to see that most things carried on just fine in my absence!

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