Replies to This Discussion

Permalink Reply by MicahsDaddy on January 24, 2009 at 11:10pm

if it helps any, i met a woman today who said her boyfriend has a son with duchenne. so i asked how old he is and she said 27.of course, he is in a chair, but he does not have any invasive or non-invasive devices hooked up to him.

just wanted to throw that out there since it is easy for us to dwell on all the negative reports.

kind of like the war...we hear only the bad stuff, not the good things that are going on.

• ▶ Reply

Permalink Reply by Cheryl Markey on January 25, 2009 at 1:26am

Hello, I have been posting some on here the last week since coming back to PPMD and yes, parents of Duchenne boys can sometimes dwell on the negative reports.....my son is 23 yrs. old and he is breathing fine on his own, still feeds himself, he only has had the harrington rod placed in his back at age 17, one reply I wrote to a parent re: Too Much Therapy How Much Is Too Much.....she wrote this sentence in her reply back to mine, " Times have changed"....not really....yes, there is the Predisone....around for my son, then there is the PT, OT and Speech Therapy......around for my son, then there are the manuel and motorized wheelchairs......around for my son......then there are the Cough Assist and Pap machines.........around for my son......the herbal items, the green tea and other supplements were starting to come into play......around for my son......we can only do our best, by keeping them busy, out in the public as isolation usually sets in sooner or later, watch their weight, keep their shoes on as long as they are comfortable for them to wear ( they act like ankle, foot braces in my eyes as the MDA Clinic PT asked me back in Oct. 2008 at Adam's clinic apt. what I do different as Adam's feet aren't contracted inwards, all I could say was he wears shoes like we do everyday....try not to baby them too much ( it is hard sometimes not too ), volunteer to help raise funds for the continued research needed and help spread awareness about Duchenne ( as this helps you feel like you are doing something......as you probably feel helpless because you can't make your child feel better or get better......moms are supposed to be able to tell their children it's okay let me kiss your booboo and make it better ( it's not a good feeling like your hands are tied ), but, don't over do it as you will become angry at times, get exhausted, feel like no one cares or understands, deal with the school systems and even the Dr.'s who are the professionals, but yet it seems we know more than they do at times, don't burn yourself out too fast as you will need your strength down the road, the road as I like to call it the Duchenne Journey is a long, hard road, it will be full of roller coaster emotions, emotions we don't dwell on, but at times just pop into our heads and hearts unexpectantly......something might just start these thoughts going......seeing the other kids running and your child trying hard to keep up, the other teenage boys getting their driver's license...oh! don't we all remember back when we got our license, Duchenne boys can drive.....I started to get my son driving, but the vehicle is so costly ( using digitek voice controlled drivng adaptions ).....getting a handicap adapted van itself is very costly, I was able to get one brand new, but, many in my community and surroundig communities this is out of reach for many to afford.....many have come knocked on my door introducing themselves and asking if there was a way to give their love one a ride ( which I need many a times ) as they didn't have a handicap van, my son has this friend or maybe I should say he once had a friend who also has Duchenne....they were close at one time, he didn't get out much, so, everytime I made plans to take Adam somewhere to do something I always included his friend to come along to get him out of the house, made plans like I had two sons with DMD, not sure why but, he doesn't come over anymore, my son has called to invite him over....but, he much rather stay at home and play video games.....from this let me venture into watching for depression as it does happen as, this boy seemed to become depressed after he had his back surgery to have the harrington rod in his back, another friend who lives a 3 hr. drive downstate from us became pretty much suicidal after he had his back surgery, he tried to starve himself, they eventually put a feeding tube in, he just didn't want to live anymore....but, good report he has gained all of his weight back and is doing very well!!!!!! Amen!, dating...they so, want a girl to love them too!!!!.....getting a job ( some do move onto college and work and some don't )......read some of Mattie's poems ( when my son and I got back from Bangor to EMMC when he had his back surgery in 2002, there was a message on my son's computer in his inbox from Mattie....he said to remember to play after every storm 9 we kept in touch with Mattie now and then via the net....he greatly missed!
There were some things I have read on here like don't let the boys walk up or down stairs.....have never heard this before and my son reminded me that the PT at the MDA Clinic we saw every 6 mos. took the boys during their visits to the stairs for part of their PT session there to see how they were doing.....Adam always went up and down the stairs....using his arm strength to pull himself up using the railing......PT most boys have it once or twice a week and us parents need to continue to stretch their legs and arms at between these PT sessions ( probably not to the extent that the therapist does ), but stretch, because you don't want the muscles tighting up, Adam takes digoxin and enalapril for his heart ( started this is his high school years ), his heart actually is still pretty strong and so are his lungs for bing his age. So, not much has really changed since learning back in 1990 of his diagnosis of DMD......what has changed is the research and how far they have come to finding a CURE for our boys ( it will happen, believe me it is going to happen ), times have changed but, Duchenne hasn't for our boys, it is still making their muscles progressively waste away, they still are no longer walking, they still are using wheelchairs, they are still taking predisone and other natural supplements to help their muscles, they are still getting their therapies, they still having loving parents ( I pray they all do, as we did know a young man who had DMD as has since passed that didn't have any family support all, he pretty much was left on his own from his parents to have others help him, it was very sad ),they are all staying as active as they can without exhausting themselves and out in the public educating the ambulatory and non-disabled by when they stare sometimes at us.....the boys all have awesome inspiritual smiles and strength and are our strength at times......what bothered me the most is when Adam could no longer left his arms and give me a hug and say I Love you mom, it will be okay, we will be just find ( I was a single mom since 1993 after his dad left us, till I remarried May 10, 2008 ). Also, in your Duchenne Journey you will grieve and mourn everything your son can no longer do, as it is a lose!
Well, I have rattled on long enough here, I have taken the time to look into each group and see the questions and replys.....remember you aren't alone here, we are all in this together, when someone tells you that they know what you are going thru and have healthy children ( they can't know )....when someone tells you they know what you are going thru they make you stop talking about your feelings, it would be nice if all the they ( s) would say..... " I don't know what you are going thru, but I have the time to sit down and allow you to tell me your feelings and maybe I can help in some way"!
Sometimes no words are better than words.....a hand on top of yours, a hug, just a hand on your shoulder if you are sitting and they are standing......words some think they say will help us actually hurt us and our feelings!
And give Pat Furlong a BIG HAND of applause of all she has done and still is doing today with PPMD! and let's not forget the staff working under her and also don't forget "You" !

God Bless,
Cheryl Markey

• ▶ Reply

Permalink Reply by Jessica Rownd on January 29, 2009 at 8:38am

Yesterday in the obituaries my mom saw another young boy passed away after his battle with MD. It did not say which kind. He was 13years old, and lived in Kenner, LA. His name was Bryan Wolfe. I did not know them but his family is in our prayers. I just thought I would pass this on for everyone else to say a little prayer for them and hug our boys tighter tonight.

• ▶ Reply

Permalink Reply by irishgirl on September 6, 2009 at 3:52pm

Katherine:
You son is 22 with DMD? That's wonderful. Is he walking by chance? What is his life like? My son is nearly 10 and completely self ambulatory. He does have DMD, but something is going on here. Can you tell me more about the 51 year old twins? How are they still alive? SOmething for me to look forward ot...

Katherine M. Reynoldson said:

This is a reply to Jacobs Mommom:
There are quite a lot of young men with DMD, my son is 22 and was diagnosed at age 3 through genetic testing then and again just a few months ago with a deletion on exon 44. There is also a set of twin men age 51, in our area also with DMD. We know many DMD families with young men living fuller,active lives. Though I will say they face many challenges as well. Please do not give up hope. Many young DMD men are living longer.

Katherine M. Reynoldson said:

Jacobs Mommom said:

I just read about Brian myself and it is very sad to hear of losing another boy so young. We keep hearing that boys are living longer but it doesn't seem that way to me. It makes me wonder if those older boys/men were ever tested and were diagnosed with DMD because I know of a few of them and they said there were never actually tested.

• ▶ Reply

▶ Reply to Discussion

• ‹ Previous
• 1
• 2
• 3
• Next ›
• Page