Paula steele's Comments

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At 7:54pm on August 25, 2011, Andrea Cleary said…

Hi Paula,

Sorry to hear that you are down right now. It is such a roller coaster of emotions, isn't it? Those feelings never go away, but they do get further apart, or so I have found so far. Simon is 11 now, and like your Dylan was dx'd at 6. If you want to talk, you can write me anything. If you think it, then one of us surely has beat you there before! You can't shock me.

Andrea

At 3:06am on July 29, 2011, lisa kirby said…

hi hope your all well??,Sorry its took me so long to get back in touch theres so much to do isnt there when your first told.

Ive been so busy and im still waiting for my own test results to come back to find out wether im a carrier or not!!

Yeh that is exactly how i feel when hes playing with other members of the family one can be up and down the satirs while kaden is still tryin to climb them you do have to hold the tears back which im gettin better at now...when i was first told all i had to do was look at his lovely little face and i was in bits!!!

I know my mums been great and letting me have some time out too as kaden has behavioural problems too and so things can get difficult but i wouldnt change him for anything.

That would be great to chat to you via text if you wouldnt mind??...really need someone to chat to who knows and understands what im going through well what we all are.

 

hope to hear from you son hun lisa xxx 

At 9:25am on July 19, 2011, Clare Harper said…
Hey Paula ,we got a slightly bigger buggy for Lewis for longer trips  at this stage and he is ok with it,it is not too bad ,i know what you mean having to psych yourself up,each decision is bloody heart breaking.I am still not sure about steroids as i have him on idebenone and he is doing good,check the presentations from the US conference on Catena (idebenone trade name),so i not sure what to do,i was also thinking of getting him a sooter of some sort for Christmas,rather than the wheelchair,all depends whe we are ready to accept it i suppose,
At 9:57am on July 18, 2011, Clare Harper said…

I just returned from lewis muscle consultant on thursday past and he will start steroids this week,am worried about that on top of everything else!! What steroid are you using Paula, i asked for defalzacourt hoping it not too bad :(

His review was good and no noticeable decline from last summer, :),

At 5:38am on July 18, 2011, Clare Harper said…

Hi Paula

i probably seen you there and did not know it was you,everything helps,lewis was grand ,i thought i would have had trouble with him to lie up and get it done,but after a year of hospital appointments he is getting used to it,i was amazed at how differently the boys are affected,some more so than others ,etc ,

At 7:18am on July 17, 2011, lisa kirby said…

hi thanks for your comments they are appreciated...erm i dont know how im feling its so emotional in the early stages went to the seaisde and found it so hard watchin the other children playin on the beach silly things upset me...

Kadens great he doesnt know anything obviously but he is stuggling with walkin and climbing the stairs.

Hows your son dylan doing?x 

At 3:56pm on May 26, 2011, Clare Harper said…

http://www.duchenne.ie/post/2011/01/Duchenne-Ireland-seeks-parents-interested-in-Exon-Skipping-Research-Project.aspx

Paula have you looked into this,it is not a trial but research but you can get your sons own personalised skipping research done.All you need to find out from your geneticist is he amenable to skipping.

How is everything settling down,it becomes a differnet kind of norm i guess....

At 3:42pm on March 28, 2011, kimmy watters said…

 hey paula  i have more time to post, i would  like to add you as friend to, so we also email to . you  know  my mom  is a single mom    and not everday is going to be perfect,   when i think over my life so far, when i  was born the doctor told mom

that i was   not going to live through the night. had father that did not wanted me and told me so everday for 24 years. mom had enough we pack up and left, and never look bakck since. sure i have limted ablity  with walking,   have sever  learning dislbity, get things back ward. my anixty and dessprssion. had father who  could not man up, that fine, my beatuful  as it is my strength comes form jake and  all these boys,  plus to  i am sundering all these negitve feelings that is what gets me through the day. kimmy  i belive that you can handle any thing thing that is thrown at you.kimmy

At 3:00pm on March 28, 2011, kimmy watters said…
   i l would love to keep in touch, my family came form ireland, my  grandad is half irsh and scotch. paula it realy takes one day at time. jake  is  six and half just   just cute as apple pie. he is the one that i will be walking for. then  addison who 12 is  no longer  able to  walk is now in a scotter . then micha is 8  is  slowy loosing more of his muscle. i post  to again kimmy watters
At 9:47am on March 22, 2011, Clare Harper said…
lol you would think i had no work to do!! i stay logged in all day to this site.Lewis 1st dna test came back clear,he had all his exons, and that took 2 months,then he had to give more blood so they could dig deeper into his dna.They sent this off to guiys hospital in london.So now that i am educating myself about it ,i really need to know where his genetic mutation is!!! I think it just good to know you are not on your own,someone else knows your pain.We all deal with it differnetly.For a long time my husband was in real denial ,his way of coping and that drove me mad.But i just make myself talk to him about it.I was and am so angry that it had to be my beautiful boy,but i think there will be something for them over the next couple of years and it is my job to keep him in tip top condition.That is my only solace..
At 8:04am on March 22, 2011, Clare Harper said…
Paula ,i could not even talk about it for so long,such a cruel disease and so rare.I check this site daily and its wonderful.Look into the supplements,and his diet.Lewis was always constipated and now i know why.I have changed his diet and give him fresh food and nothing processed.(he does get a macdonalds but normally after a hopspital visit)His tummy does not swell out anymore.A treat is a watery icepop or a cadburys wild life bar.Take him swimming,loosens them up so much.Back to basics with spud ,veg and chicken.I also watch his weight to keep him light . Do you know what Dylans mutation is? Has he a deletion or a duplication.I have learnesd all this from this site.I never found out and now that i am getting into things i am waiting to find out from Genetics .I was just told Duchennes.I need to know now as i want to know what treatments he may be suitable for.Sorry for rambling,be strong and you have to have hope!!!
At 5:55am on March 22, 2011, Clare Harper said…

Hey Paula, i am ok days and days i just feel devastated.This site is fantastic and it gives me such hope for Lewis.He was diagnosed last July ,i took him to the paeditatrician because he had flat feet.The day from hell. I had never even heard of this disease! There are still nights i cry looking at him when he is sleeping,wondering whats in the future for him.He is so happy but is asking questions why he cannot run fast !!

I ordered Idebenone and Protandim from the states.(learned about them on this site)My sister got them for me and they arrived today ,so i will let you know what i think.Have you read the supplements discussions??

At 8:38pm on March 21, 2011, kimmy watters said…
 hi paula my name is kimmy watters welcome,   how are you doing  how is  dylan,  i have friends who son  have duchenne  hows the foot ball, here  in the usa,  we call it  socer. let me what i can do to help you kimmy watters

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