PKU - curse or a blessing

PKU – curse or a blessing

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PKU – curse or a blessing

January 16, 2011 in Uncategorized

Hi Everyone, (I am a Kiwi Living in Aussie) My name is Justine Inglis. I have been on here before but because of problems with my email had to recreate my profile to a new email address. I will need to reconnect with the firends I had on the last profile as I seem to be unable to link it over to this new one. Any help with this would be appreciated. Anyway, I have PKU and live and work as a Registered nurse in Myrtleford Victoria Australia... I have just turned 40 yrs old and live with my partner and our dog a great dane called "Hank".. and I feel great! I have been off diet for the past 6 yrs or so, have tried to stick on diet for a few years from 1996-1999 and then again 2000 to 2005. I have been on and off all my life. I am sick of yoyoing and so have decided to manage the diet my way. I am not on medication of any kind nor do I have specialty foods or take any formula. I have given up on the medical profession for this condition as I have not been able to find a specialist or GP to care for me and there seems to be a reluctance to care for a PKUer whos not on diet!!!! I think that is very unfair. I have made an informed choice and is my right to do so to continue to lead a normal life as I do right now. I have suffered from Anxiety and some depression after the death of my father and grandmother, but that was related to my grief. I have managed to overcome this through use of medication at the time and yoga and meditation...which has been my miracle cure for the fogginess,stress and anxiety related to my job as a nurse caring for the elderly/infirm and the dying. PKU has taught me many lessons, one of which is that food is one lifes many pleasures and while we have a condition that needs care and maintainence daily, that we are also human and must allow ourselves to live while alive also...I have also learnt that PKU is very frustrating when you have grown up being told "you can eat nornally" by the gps when I was young. As long as you dont get pregnant..hence the fact I have no children. I understand they teach differently now "to diet for life". This I also question as when on diet I asked a specialist why I needed so much formula..he replied to "curb my appitite". This upset me as whilst it had benefits with nutrients etc, it was being used as a filling agent to stop me "feeling Hungry" hence in theory removing temptation towards high Phe foods. What sort of life is that? Yes its a risk to be off diet late in life as I am, but I would rather risk it and live, than live half a life using a filling agent to remove the joy of eating. (my intention here is to put my point view across and I am not intenting that any one on diet is not living a full life, its just my point of view)....If I found the right clinician of course I am open to discussion about my food choices which arent always Ideal and yes I have the odd glass of wine or spirit. I was told that later in life I would loose the ability to walk and talk...here I am at 40..still walking, still talking.....At what point is that scare mongering someone into doing what they want us to do...We are all entitled to make informed choice. I have a question if anyone has any ideas..What is the affect on a person with PKU (off diet- so highPhe levels) when they have no sleep..ie on nightduty. I find this very difficult to handle. looking forward to anyones ideas. Cheers Justine Inglis (naughty PKUer)

3 Reviews of PKU – curse or a blessing

  1. Registered: Sep 8, 2009

    Posts: 0

    , INTERNATIONAL

    Everyone has there own ways of coping with PKU.

    I know i would rather feel Healthy and “normal” than live my life Moody, anxious foggy and lack of concentration, I enjoy most of my special food anyways… I live on Pasta and Rice Dishes and i adore my vegetables, i wouldnt say am missing out on life because of the food i dont eat, but everyone to there own, i need to stick to mines it makes me feel better and being an accountant am needing all the concentration i can have x

    Maybe you dont react to high levels like we do, i know living with Classical PKU i NEED to stick to my diet to maintain a better life so maybe you are a mild case or what…

  2. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    mnmnjmnjkjkjkl

  3. Registered: Oct 12, 2010

    Posts: 0

    belfast, INTERNATIONAL

    hi justine. i have pku and live in northern ireland. i found your blog very interesting in that i was off the diet as well and for me there were side effects. i am not preaching at you as i said i found your ideas ionteresting but maybe you can tolerate higher levels of phe. i do agree that the medicl prof can be very blinkered to other ideas if they are not their advice which of course should be taken. i trust your own instinct as a nurse you know your own health and well being. did they say you would lose the power of wlaking and talking? here they tell you nothing. just follow the diet and thats it. i have went with energy problems that i have noticed just recently and they dismissed it totally. at least they tell you something. it did worry me as i fall asleep esp after i eat at lunchtime. i have to walk around un til it passes, this is daily . i believe its related tom diet which i do follow. i want to be healthy. it upset me at the time that they didnt listen. i am gald you are toally well off the diet. i think that is unusual but you could be mild pku. all the best . abigail

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