Hi!
I would like to hear from parents of DMD boys over 18 (life after high school). My son is 19 years old and finished high school with honors. He is not interested in pursuing online college and we didn't push the issue of the "future". Since graduating high school he has become more "isolated" mainly due to the fact that all of his friends have all moved in different directions, and are not as close to anyone of their old friends as they used to be, but also because when they do get together, he doesn't have the same kind of "new" experiences to share.

He's been very active in playing poker tournaments (which his brother took him to) but after a recent hospitalization (on a ventilator for 8 days) his poker playing days are most likely also a thing of the past. His spirits are good and he seems to be mainly focused on spending time with the family, which is great, but due to the fact that we are a divorced family, it does make it a little more complicated. He lives with his dad and brother, but seems to desire more of the female "nurturing" we give (although,it annoys him at times). And we get along fine for the moment, but it gets a little stressful sometimes between the rest of us.

I'm mainly interested in knowing how other families are coping at this age. My son never asked any questions about the future, but have rather always had the "OK, let's do this a different way" attitude when he came upon yet another loss of function.......... and he's not aware of the life expectancy for DMD (as far as I know).

I'd love to hear from anyone,

Thanks,

Jeanette

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Hi,

My son is 18 and should have graduated this past June, but he didn't. In the middle of his 10th grade year we took him out of the traditional high school and entered an Independent Study program. This left him totally isolated most of the time, he only meets with his independent study teacher 2x a week. Since he works at his own pace, just one or two classes at a time he is taking longer than it should be taking. It is extremely difficult to get him motivated, he won't work unless I am sitting right there pushing him. It has been very frustrating. He does talk about going to college but I just don't see him really working towards getting there. He is very bright, I just don't think he sees the point anymore. He only seems interested in his x-box, reading and watching TV. He is very isolated, he won't go to church with us anymore, he is not interested in facebook, myspace or anything like that either. Getting him in the car to go anywhere is very difficult. But we have bought a new van, we are just waiting for it, It should be here in a couple of weeks. We are hoping that when it is easier to get in the van and he is able to use his new power chair he will want to get out some. I know I have also become more isolated and do not like it. We spend so much time here alone together that we kind of get on each others nerves at times.

Susan
Hello,

I have two sons Andrew 23 and Aaron 19, they are both still at home, neither one of my sons were interested in going to college either, both made good grades, at one point I had hoped Andrew would go to college at least part-time after he graduated from high school, and he was more active when he was younger, and is actually doing better than Aaron health wise. Aaron went into respiratory distress right after he finished 10th grade in 2008, so now he uses a bi-pap 24/7, he was on hospice for 4 months, so since he could not go back to school, they let him graduate early, he now just has home health check on him, and they have a nurse mainly because of Aaron, that takes care of both my sons 3 days a week, I work part-time 2 days to keep my sanity and 1 day I have for errands or meeting up with friends for lunch. They both resisted having someone different take care of them during the day, but its been a year now and thats working out. Both sons are mainly on the computer, PS3, watching movies, we have a few friends that come over, my sons are very aware of what the future may hold, we do have a Accessible Van that can take both boys out, I still take Andrew out for shopping or a movie, so does his dad, Aaron is hard to get out since he is on a bi-pap, we are working on getting him something more portable like the LTV, its actually in the works, just not approved yet, so the only time I take him out is to the doctor, I have a portable battery pack for his bi-pap. There are days I feel very isolated, unless the nurse is here, or if my husband is out, I can't leave the house. My husband is a avid hunter, so there are a lot of weekends I have the boys all by myself. Its hard being their caregiver and their mother, sometimes I just want to be their mother period. There are days we just get on each others nerves too.


Susan
Thank you both for sharing.

We don't have a handicap accessible van, but we do have an old conversion van and 2 wooden boards that my ex and Jonathan's brother can get the chair in and out by. The other problem of course is the destination. We have friends that have even built ramps to get a wheelchair in their house, but it still becomes cumbersome once inside any house.

It's just really hard to watch someone you love seemingly "give up" on doing anything.......... Jonathan doesn't even want to get on the laptop, and seems to get annoyed by "suggestions". I guess it's his way of coping with limitations, and as frustrating as it is can be for the rest of us feeling the need to "motivate" him doing more than just laying in bed watching TV and playing a little bit of video games, I guess as long as he's not (frustrated) we just have to learn not to worry so much about it!

Jonathan has a nurse that visits weekly now, but we are in the process of getting approved for a daily aide. Up until now his dad and brother have had flexible schedules limiting the time no one is at home and his 18 year old sister has been staying with him when they are not there, but she is scheduled to start college courses soon, and Jonathan is not trilled at all with the though of having a stranger stay with him.... and neither are we, but we also can't keep the rest of the family's life on "hold"...........

Again, thanks for sharing!
I know i'm not a parent but I am 25 living with DMD. I went though an isolated period (still quite isolated now but I talk alot on facebook etc..) At 16 I had respiratory arrest caused by bilateral bronchopneumonia, that led me to ventilator use, up to 15/16 hours a day now. At first I did the playstation 2, watching TV thing until I was 21, with the occasional PC use. I was lost really, didn't know what or where I was headed. College wasn't my thing, the pneumonia made me very wary to go into an environment that had more "bugs" lol The cruel twist of my worsening condition meant my ps2 days were over, but that really did have a silver lining. It forced me to use the computer more, I got hooked on yahoo pool, joined an online pool league, then I ran tournaments myself moving up to the ranks to Admin. The admin was too much work so I dropped back to just running tournaments. I was well liked and talked to many people, sadly never met them in person, despite lots of promises. But then I found something I could do, that being art using Corel painter IX on the computer, I'm now an artist, but not really in it for the money, very few loaded digital artists lol! I love art, designing computer wallpapers etc. My gallery http://thebigg2005.deviantart.com/gallery/

So last year 2008, I was found by Action Duchenne (ppmd in the uk) via a former advocate. She had seen a website I made and which I still keep updated. http://duchennemen.net16.net Once I got looking in to the charity, I found a community which understood, it was liberating. I now use my art to help AD, I've made postcards and xmas cards and posters all raising money and awareness of DMD. I've met people made new friends, I feel loved and I love my friends back. I'm happy I found a way to contribute to society.

Have all sorts of other hobbies, love writing, am writing my autobio, write poems, dabble with music (computer program), am on youtube.

What I'm trying to say is maybe see if they/your son are interested in art/writing/online gaming communities/music/youtube, theres always something we can do. Other than that just surf the net and see what's out there.

Take care

Ian
My heart goes out to all of you parents struggling with the emotions and hazards of caregiving for your older sons with dmd. I wish all young men had hope and ambitions, but they are all different aren't they? If you feel isolated there are MDA chats for young people, and just for parents. I moderate the Weds. night "Parents of Young Adults with DMD" chat. There are also dmd parent chats on Tues. and Thurs.. Here is a link to the calendar and how to sign up to chat: http://www.mda.org/chat/calendar.html My son is 29 and works full-time as a software development engineer. He got his AA from a community college while living at home, then got his BS at a University. I was able to go with him to U as it was 200 miles away from our home. We lived on-campus and I also was able to attend and graduate. I know not everyone can do this, but my son was so self-motivated that we had to make it happen. Our boys need a plan for the future--it may not be college, but they do need SOMETHING to look forward to. With the non-invasive ventilation they are living longer and it should also be happier. Please update about your sons.
My son is 26 and just mentioned to me last night that he wishes he wasn't such a "homebody." He said he realized he doesn't have any friends, but the effort to go out and try to meet people is intimidating. On my side of the family we all tend to be homebodies, so he comes by that naturally,Lol! Having DMD and being fully wheelchair-dependent just seems to intensify it. He does work 3 days a week with his father, he is Auto-CAD certified, but it's a mostly guy-centric workplace. Thank goodness for that interaction, otherwise it would be Xbox and TV the rest of the time. I know that he would love to meet girls and someday have a girlfriend, but I'm at a loss as to how to help him. I looked at the "Events and Adventures" website for meeting singles, but many of their activities are not wheelchair accessible. I wish there were something I could do and he's pretty resistant when I try to suggest things. I just give up after awhile and figure if he wants to bad enough, he'll explore it himself. Then I feel guilty for not trying harder. Ugh!

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