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My daughter is end of life with huntingtons desease

Posted , 5 users are following.

christina82926
christina82926

My daughter will not let go and it's so cruel and wicked to see her like she is if she was a dog we would get prosecuted for being as she is at 4 and half stone being peg fed  I should have been advised to have sorted all this out when she was able to make her own decisions why don't they advise you 

2 likes, 4 replies

4 Replies

  • craig64384
    craig64384 christina82926

    Posted

    It's so sad what you are going through.Patients rely on specialists to make and help with decisions.Why can't these people step in and try to make things more comfortable for you.As you are quite right if it was an animal a vet would be just in making the right decision.Your daughter is a fighter and maybe she herself does'nt want to give up.God she is brave.

     

  • calmDc
    calmDc christina82926

    Posted

    Oh Christina I feel for you right now, it's so sad. I experienced the cycle with my late mother-in-law and now am going through the early stages again but 1st hand with my wife! Even now it's a strain and the so-called support from the specialist at the hospital has not exactly been forthcoming. Strength to you my dear.
  • pamela83089
    pamela83089 christina82926

    Posted

    Hi Christina .Im so sorry for you and your daughter. My Husband has Huntingtons desease he is in his seventys and was diagnosed just over a year ago a little late in life dont you think ? Im not sure what to excpect as time goes on the anxiety is the worse thing to deal with day by day i dont need to be telling you this as you have had it all . Iv become his carer but one has to be strong to cope and understand this alfull and uexcpected illness  god bless you .  Pamelaxx   
  • tracy06575
    tracy06575 christina82926

    Posted

    Hi im so sorry i know the agony your feeling i work with a woman who has Huntington chorea in 5 yrs her disease has advanced 20 yrs the shaking isnt the worse its the bodily functions surprisingly she comprehends she talks but she is very impatient with her steps she will fall we take her to the dr almost two times aweek to document these falls so were not under suspicion its so hard to get a doctor who has extensive knowledge in this tragic situation i do wish you the very best all my best to you.

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