August 28, 2012 at 3:08 pm #84327Re: HATE Duchenne…
I read the rest of your post,and I feel all the pain you are going through.Be strong for your beautiful son,stay strong,you are his pillar,and his protector.Your feelings are normal,dont be harsh on yourself,you are just being a mother.Your son will pick up on the emotions you are feeling,and he in turn will try to protect you, thinking that he does not want to upset you more.He has to know that you are strong,because he will need that support.
Are there any carers group where you stay? Can you get in touch with a homecare team from your local childrens hospital? You can get a lot of information from the library,or the citizens advice bureau,or even from the G.P.surgery.Dont hesitate to ask for help.
I hope that you can find the strength and know that you are not alone.There are many others with sons who have the cursed dmd,and I for one am surprised that I am still here screaming and shouting at it.
Please drop another post and let us know how you are.
best regardsAugust 30, 2012 at 10:33 pm #84328Re: HATE Duchenne…
Im new to all this but thought i would come on here for any advise. My son is awaiting diagnosis of his type of MD. We have been told that it is probly DMD so we are expecting the worse outcome. My son is 7yrs and up until the last year he seemed as normal as any kid. Now our world seems to be turned upside down and just in shock of what the outcome is goin to be.hes so happy and is heartbreaking of whats goin to happen. Up until the last few months ive never heard of Dmd but as ive researched about it ive learnt what a devastating desease it is and carnt imagine how he or us are goin to cope.so pleases any advise from anyone and just people to share whats goin to happen so that we can prepare.August 31, 2012 at 11:32 am #84329Re: HATE Duchenne…
I cannot imagine how you both as parents are feeling. First of all, give yourself time, you will be swamped with information and ideas and appointments and people, your minds will be a blur and a whirl, take time out to adjust and consider and get used to things; and spend play time, cuddle time, just being parent and son time with your little boy.
Are you in contact with your Regional Care Advisor? Click HERE to go to the page where you can find the one nearest you. These people are angels, they will walk with you through all the processes [even the tedious benefit claiming ones] they can be your sounding post as well as your fighter when you need access to things. They are simply brilliant.
The main web site for MDC has loads of useful, practical information and advice. Click HERE for their advice on newly diagnosed children.
MD does not follow a given path, each individual is as uniue as their varient of MD so it does not give us a nice clear path to follow. You can expect some laughter, hysterical laughter to tears, some frustration, heart ache, but there will also be triumphs and joys. Life is what you make of it, and you have been given an unusual ingredient.
You are not on your own.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015September 1, 2012 at 10:54 am #84330Re: HATE Duchenne…
Thanks for your reply.
Its just so hard to think he doesnt no what we know about it. We tried telling him ,we said ” your muscles are weaker than other kids and you may find it harder to do things” and he was laughing as we talked . Which made us even more upset as hes just so young and doesnt understand. He loves life and enjoys doin lots of activities why should he have to struggle.he just so hard seeing him getting worser. Like other kids running upstairs and i can see it in is eyes how frustrating it is for him.
Yes we have a care advisor who has been out to visit us which was a great help as she told us of things and how we need to start planning and focus on giving liam the best life that we can. So already we have started to sell our house as hes currently in the attic bedroom, and soon its not going to be suitable. So were buying a bigger house and building an extension so that hes going to have a bedroom downstairs and all the things he needs.We are geting lots of help from all kinds of people and lots of support from are families. I just want things to be comfirmed so ge can start on treatment they told us that steroids is the best option which could help , but its been such a long few months were currently on genetics testing so hopefully not too much longer . Were goin on holiday in a few weeks so carnt wait to see how happy and exciting it will be for him .September 18, 2012 at 9:48 pm #84331Re: HATE Duchenne…
thankyou very much for all your advice as it really means alot to me. It is hard enough to absorb such horrid information about what is wrong with your child let alone the impact it will have on the future, issues and dilemmas that you have to deal with. The more you try to forget and live your ‘normal’ life, the more the condition comes to light. I knew my son was struggling….and now watching him make slow progress beats me up. I want to help him, but i feel so useless.
The whole situation becomes so much difficult when people around you can not understand the fustration, the pain etc. Then i wonder…if i did tell more friends, more parents they will not be able to understand what we as parents feel. I am so greatful that we have this sight, and have you guys as my friends to talk to, share experiences and feelings with.
All I can say is that not a day goes by without me praying for a miracle…im desperate for this miracle to come!
As for steroids, well we have been told that he will be starting them very soon and that frightens me more!
By the way i hope i am making sense…its just been a very tough life recently and i guess i am extremely exhausted and tired.
Speak to you all soon xanisakParticipantPosts: 12Joined: 15/07/2012September 19, 2012 at 7:34 am #84332Re: HATE Duchenne…
Yes you make complete sense, I think you describe your feelings you are going through very well and although I am not a parent, I am sure there are members that can identify with what you are saying.
The forum is here when you need it, take good care.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015January 25, 2013 at 2:29 pm #84334Re: HATE Duchenne…
Just joined today to get abit of addvice.Reading all your posted did make me cry.my son’s seven now and sometimes i wish it would all be sorted and acure was found and noone would have to go through allthe pain and heartache.kirstylane41ParticipantPosts: 2Joined: 25/01/2013January 25, 2013 at 8:06 pm #84333Re: HATE Duchenne…
Just joined today to get abit of addvice.Reading all your posted did make me cry.my son’s seven now and sometimes i wish it would all be sorted and acure was found and noone would have to go through allthe pain and heartache.
Welcome to the forum Kirsty.
Thanks your heartfelt comments. We share your sentiments.
"Even if you are not paranoid, it does not mean they are not out to get you!".taungfoxParticipantPosts: 4,630Joined: 27/09/2010February 25, 2013 at 11:31 am #84335Re: HATE Duchenne…
I feel exactly the same way. My 3.5 year old son was diagnosed last month with the classic – severe duchennes. The other day he attempted to climb the stairs for the first time in a while and he pulled himself up by his arms and on his knees. It was heartbreaking seeing him struggle so much. My son has never been able to walk better than a toddler and even his 15 month old sister can walk better than him and for longer and it shouldn’t be the case. It’s completely unfair. I can’t even let my son go down a slide without supporting his head and back. I just hope that a cure/treatment of some sort is found that will improve the outcome for those with MD.April 18, 2013 at 5:46 pm #84336Re: HATE Duchenne…
As long as the argument doesn’t become worse or create bad feelings for weeks on end I wouldn’t be TOO worried – I know its easy for me to say as my kids are still pretty young, but its important (I think) to keep a sense of perspective if at all possible. Its almost a year since I posted on here and I can’t count the amount of times I’ve cried, felt useless, patronised etc etc… all I gotta do is keep smiling to the world and hope I can do my best for the kids…
What kind of dad would I be otherwise?JinxsterParticipantPosts: 4Joined: 16/04/2013March 8, 2014 at 8:50 pm #84337Re: HATE Duchenne…
Hi all, I have just joined the forum today.
My son is 23 with Duchenne, diagnosed at 7 in South Africa. Has been on NIV since October 2010. Since he had his PEG inserted in November, he seems to have suddenly deteriorated more and more, he used to play on his PS3 (he had adapted controls and buttons) he started getting cramps in his feet when using the feet buttons, he has stopped using his computer as his lower arms and hands have started cramping when using his mouse and over the past three weeks has started to sleep longer and use his NIV more and more during the day (since Tuesday I have been making a note of when he goes on and off his machine) – his lung check has been brought forward from July and will be next week Wednesday, he has been lucky and has had no chest infections. Even though I knew that this would happen at some stage, it is still a shock and hard seeing him go through this. He never seems to complain about anything.
I am his full time carer and sometimes just want to run away, hide and cry and yet other times I wish I could just take everything of him and let him be ‘normal’.
Sorry about the venting but I have no one else to tell how I feelVickieParticipantPosts: 1Joined: 08/03/2014March 11, 2014 at 8:32 pm #84338Re: HATE Duchenne…
I am glad you have felt you could vent on here, I’m sure there are many who can identify with how you are feeling. I cannot begin to imagine how it must be as a parent to be in this position.
Do you have a national charity as we do here in the UK? We have people known as regional advisers who can offer support to people with MD and their families. I hope things go ok at the appointment and the doctors are helpful.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015
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