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HATE Duchenne…
Had to help joe (9) up off the floor. “mum, please can you help me, why can’t I get up?” he was stuck in a sort of half Gowers.
Think he over did it at hydro, he wouldn’t wait for me to get him out of the pool and attempted the steps and could barely do it, it took a phenomenal amount of effort.
Sent him off with his dad to have a bath and just had a cry.
Re: HATE Duchenne…@anr1976 wrote:
Sent him off with his dad to have a bath and just had a cry.
It is impossibly difficult sometimes, I cannot imagine the heart ache when it is your child … sometimes what you did is the best you can do … better than keeping it in and making yourself ill.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: HATE Duchenne…I really hate what this condition is doing to him, he’s such an amazing kid, but yes as a parent watching it, it’s devastating. I slap on the happy face but sometimes it gets too much and the flood gates open. Given his age he is doing great but things like this hit me like a ten ton truck. Feel powerless a lot of the time. Going to keep him warm and quiet over the weekend…easier said than done
and hope it was just from over doing it at hydro. X
Re: HATE Duchenne…Hi, watching someone in your family start to experience difficulties must be horrible :-(. I don’t have Duch but might as well do because the progression is almost as steep for my type (and pretty similar functionally). Does he understand what he has and what it means? – I remember when I couldn’t do things (age 7+) I knew what I had and didn’t have to ask why I couldn’t do stuff even though no one sat me down etc to tell me – I looked it up in a medical book even at that age. Children are smart although I wish my parents had told me more (the medical book wasn’t entirely correct!)
If I had not known and just started asking questions, maybe that would have upset my family trying to answer them? That ten ton truck does tend to send you for a sixer :-/ I remember when I did swimming – that used to wipe my legs out for weeks. I know exercise is supposed to be good but it did lessen my moving ability for a long time after which is why I stopped exercising really.
I’d cry to – well I do when another bit of me falls apart, if I didn’t I think I would get too stressed which wouldn’t help anyone! – Hugs.
Re: HATE Duchenne…I hear you – Jacob is 3 and has an agressive form of CMD. This week I told his sister off for something to which her response was ‘fine I’m going to run away’ (7 going on 16)!! Jacob then joined in and said he was going to run away too – he then paused and said – but I can’t run….. Mummy I cant even walk, will you help me run away?
My heart broke………. crying and talking is the only way forward……… Thinking is too painful.Re: HATE Duchenne…Oh bless his little heart
Re: HATE Duchenne…@anr1976 wrote:
…. keep my chin up…
Oww when I hear someone say that, I’d like to keep their cin up, on the end of my fist!
As my arms and leg strength has deteriorated I have dwindled to one method of emotional expresion, whether it be stress, distress, over tiredness, humbly moved, disappointed or surprised … the tears roll. once upon a time I would thrash out my moods on my piano or the housework, but there is no alternative to stomping, fist clenching and door slamming.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.com
Re: HATE Duchenne…Glad I am not the only one who feels very patronised when people tell us to keep our chin up. My default settling to stress in front of people is to cry or get my words so jumbled I make no sense at all. Argh! How the other half live eh!? X
Re: HATE Duchenne…Oh yes those lovely phrases – somehow supposed to make us all feel so much better!! My best so far was a so called ‘professional’ who suggested that there was a positive of my childs limited lifespan – that unlike other parents I wouldnt have to worry about planning care for when he is an adult………… I was so stunned I couldnt speak. I asked her to leave my house and cried……….. and then thought of all the brilliant things I could have said. I’m sure she then just wrote a report saying I was an emotional basketcase etc. etc.
Why do people not engage their brains before speaking or just ‘zip it’ if they cant!
Sorry rant over.Re: HATE Duchenne…Omg! That is beyond insensitive!
Re: HATE Duchenne…My son TJ is now 20years old and is doing a university Oxford Brooks motor engineering
Re: HATE Duchenne…My son, Dan, has Duchenne and will be 21 in August.
Both his arms and legs are so weak that he can do nothing for himself. His left hand is unable to grasp anything and he is limited as to what Xbox and PS3 games he can play now. He’s had two ops for his scoliosis, wears a ventilator at night and is PEG fed.
Over the years I’ve lost count of the times I could only hold him when he cried. When he was 10 he found out what his condition meant and I have never felt more impotent.
Describing his current state now makes it sound grim but as your son grows older there is less left to weaken and in a perverse way it becomes easier to deal with. I do think I have hardened to the deterioration because it was the only way I could cope. I try not to look at Dan and take in how awful his quality of life is because if I did I would want to kill myself. I’ve learnt over the years to cry when I’m in the shower.
BUT, it isn’t all doom and gloom. Dan is engaged to be married. He is no different from wanting what any other 20 year old wants out of life. He knows he has a limited lifespan and medically a cure isn’t likely to happen in his lifetime but for those younger than him they are in with a fighting chance.
There are days when just getting out of bed is an achievement and as a parent we have every right to be angry, sad, and afraid. Don’t give up hope.Re: HATE Duchenne…Hi there,
I have 2 boys with Duch, Daniel 7 & Harry 6. I also get very tetchy when family members and joe public tell me to ‘chin up’ :twisted: Luckily (or unluckily) my lads have a learning delay also so that they don’t really understand all that much right now. It is totally devastating for us parents (espeically those that have DMD running through the family) as we can see into the future – so to speak – whilst my kids can’t. As for strength, I don’t know where it comes from, but I wish I had more of it. I often find pieces of music reduce me to tears, and I look at other fathers and become very very jealous and sad. Still my boys are lovely in their way and make me smile at least 10 times a day heh heh. If I only had harry potter’s wand… I could cure this terrible condition once and for all!!!! :-)
Re: HATE Duchenne…reading all of your posts has made me bubble! Not that crying is unusual
for me really. 3 years down the line and it still doesn’t seem to feel any better.
I guess knowing there are other people feeling the same who actually do understand
(rather than just saying they do) is some sort of comfort – at least i know i am not going mad.
It would be good to have a brain switch to just have some peace every now and again.
I wouldn’t change things for me – my son is my world – but i would change things for him.
If i could.Re: HATE Duchenne…hi All,
just joined the other day,My son has DMD,I have had a particularly trying day today and felt very sad as I had an argument with him.He is 25 years old,and feels unwell all the time and nothing I can do makes any difference.I feel so useless when he gets frustrated and angryRe: HATE Duchenne…Hi rifit02,
Welcome aboard! I am glad you have found us. I cannot fully understand how you must feel as I’m not a parent but I often t must be such a difficult thing to experience when you see your child struggling and finding life so tough. Unfortunately, being close go someone and caring so much means you bear the brunt of their frustration. We have other parents who are members of TalkMD and I am sure they will know exactly where you’re coming from and the sadness you feel.
Please join in with any discussions, ask questions or just have a bit of a vent – I know it makes me get my head around things sometimes
Best Wishes
Sarah
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams
Re: HATE Duchenne…]My son was diagnosed with dmd just under a year ago. He will be 5 at the end of August and will be moving up into year1 with his friends this sept.
I hate duchennes, i hate knowing that my son has this condition. We have just managed to get his statement after a tough battle. What fustrates me the most is people beginning to notice the gap between my child and their child both accademicaly and physically. The truth is nobody apart from a few family members and some of the staff in school know about my son and his condition and I dont want everyone to know. The more low key i try to keep it, the more people speculate about what is wrong with him. He has a best friends bithday party to attend to in August at an indoor activity centre. My son has been to this indoor gym many times with his older cousins who have supported him in his age based activity areas. I have thought about not sending him like the previous years so that i dont have to answer questions or listen to anyone talking about his struggle, but then i know how excited he is about going. What do i do????
I also know that its not fair on him to loose out!I just wish this whole nightmare would go away….
up until now i have tried to put on a brave act pretending everything is fine and trying to avoid questions from parents, but as time goes on its getting more and more difficult. I feel like i am running out of energy to put on this act and i feel like wanting to run away from it all. I am now wanting to live an isolated life with my child to protect him from knowing that he has this awful condition. I have heard his friends say to me how ‘he cant do’ things and it upsets me. I dont want him ever to feel upset by comments like that. Can anyone help with advice? :?: :?:
Re: HATE Duchenne…@anisak wrote:
]My son was diagnosed with dmd just under a year ago. He will be 5 at the end of August and will be moving up into year1 with his friends this sept.
I hate duchennes, i hate knowing that my son has this condition.
I just wish this whole nightmare would go away….
Can anyone help with advice? :?: :?:Welcome to the Forum.
We are glad you have found us.
Goodness you are having a tough time. Very brave of you to share your feelings with us.
We do have a lot of forum memebers with Duchenne or family members with it. They will see your post
as they visit the site and hopefully give you advice. Or your can put Ducheene in the search box and that will
being up the many threads where people have disccused these exact problems.Sorry you are having such dilemmas with this awful condition.
"Even if you are not paranoid, it does not mean they are not out to get you!".
Re: HATE Duchenne…hi anisak .
i can understand how hard and difficult things are for you at the moment .
the other kids are starting to notice that you,r boy is a bit slower on his feet and cant keep up with the others eh !!
you can’t keep this a secret for ever and its nothing that you need to hide .
once pepole know that you,r son has dmd thay will look into what it is and understand what you face in the years to come.
pepole will suprize you !!! and the best thing to have and help is pepole that know what dmd is all about .
i know that at this early age you want to protect your boy from what you already know about dmd.but at the end of the day as he gets older he and his mates will start to look into what dmd is all about .
you cant hide anything with the advent of the interweb !!!be honest with your boy
be upfront with pepole you know
and be proud !!!
you are doing something that many pepole would never have to deal with .i know you wish it was all a dream and that this was somthing that happens to others .
but this is life at its hardest and when life gets hard pepole are at their best .this is just what i think ! so take you,r time and talk to others before you decide how to move on and how to deal with the fealings you have .
all the best
and big loves xxx
richard .Re: HATE Duchenne…Hi anisak,
I just recently joined the forum.I have a son with dmd.I like yourself wanted to hide away from people especially when I discovered a lot of people found out and I felt extremely vulnerable.I wanted to scream and scream,and was so very angry.May you have strength to carry on in spite of all the tribulations that you are going through.
I know how you feel as I was the same.You have to listen to your heart and do what feels right to you.When my son found out(I could not tell him) he was so very angry and so hurt that I had not told him about his condition.He said that I had no right to withhold information like that.(he was 13 when he found out).
I would say to you,I know now I would have done things differently.The biggest mistake I have learnt is that I protected my son too much,I was hurting so much it was what a mother does.But please dont try to seperate him from his school mates,try to involve him in everything that he is able to do.If somebody says anything,just explain as simply as possible.Talk to your best friends and enlist their help anyway you can.I did not ask anyone for help but I do wish I had,as I struggled for many years.Have his friends round to the house regularly,it wont be easy,but I found it takes the attention away from their condition and his own group of friends will support him when he needs them.
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