michael
Friend
Last on 5 months ago

Journal Entry

what happend at rush hospital

July 22, 2008

well charlie and i went to see the doctor he dose not do well with doctors he gets scared and nervus he woke up saying this morning 21 july 2008 he was scared to go he last was there 15 years ago when he was diagnosed i thought it had been ten there records had shown 15 years hes benn dealing with this HD wow long time i love him so much he was asked by the doctor who i was his reply was my best friend i shed a tear as do i for all who deals with this my heart goes out to all there are so very few who know about this whole HD thing . i am so very glad i can write in my journal to people who know what im saying thanks to all any way today was a blessing it did not go as planned however things got bad as soon as we got to the doctors office he freaked out screaming and yelling would not stay sitted down the doc got scared and she called security they restrained charlie and took him to the hospital where he will see all the hd specialist while he is in there for atleast the next two weeks they will observe him and get him comfortable they said he was shurly on the wrong meds and doses as well none of the previes doctors knew anything about hd im so happy that he is in the best care there ever in his dealing with this HD they have come along way in 15 years he will be in the best of care im sad to have him gone for he is im sure not a happy man at this moment but will return to my care a new and very happy person all i can hope is to make his last years on earth a comfortable and happy life i pledge my life to his care till hes gone im young and have the rest of my life to live i live here and now for my best friend he is 52 im 39 and would give my life to god for his my passion to care for him is great and would like to tell al who deals with this    im not a religus person but GOD BLESS US ALL  . thanks to all who listen to me and tell me how to keep my self as well as charlie to keep or heads up and our life brite                                          LOVE , MICHAEL AND CHARLIE

Comments


  • Mary

    Michael, you are a rock.  For Charlie, that constant support is what keeps him going.  I sure hope they reevaluate his medications.  I am treated by a Neurologist, Dr. Fredy Revilla, who came highly recommended for treatment in the OKI area.  He specializes in HD and my dealings with the HDSA for my entire life is why I called them when seeking a specislist.   I have been thinking about the two of you alot.  You deserve a break.  But know that Haldol is not his friend.  I have 5 brother,  3 of which are gene positive.  We ALL have a no Haldol pact.  My youngest gp brother is Steve.  He was on Haldol, among many other meds.  He ended up in the emergency room alot.  All of the meds ate him up.  He's only 3.5 yrs older than me and is now full time care facility.  The med he was on aged him to the poing of end stage.  But he's only 47.  End stage in my family is around 54-56.  My other gp brother Tim, is 51 and still lives alone.  He is the one who turned us onto the Clonazepam.  Just an indication on what that stuff does. Basically an HD patients brain is working against us already.  We don't need to be on too many or on "Bad Meds" for any length of time.  They eat up the only few parts of the body that may still be ok.  And considering it has been approx 17 yrs since "they" stopped even recommending that stuff for HD.  I hope he doesn't drink on it.  Man, I remember Dad being on that stuff along w/Valium, Librium and a 12 pack a day, too much boredom.  But it led to alot of paranoia.  To the point he truly believed everyone who entered the house was trying to kill him.  i mean I was his caregiver then.  But I was the youngest of 6 children, so noone told me about him until I was hdpos.  I cannot imagine sitting in my own home and thinking my wife and children were trying to kill me all day, everyday.  Thats when he went to VAFull Time Care Facility.  But man, that was in the 70's.  There were no good meds then. My family motto,  "Haldol is Evil"
    At this time I must ask how are u?  I know this isn't easy.  There aren't any words to describe what kind of person you are.  People who aren't HD related- they just don't stick around man.  You are one of a kind.  Do you have children/wife.  How do you find the time?  Man - you give a whole new meaning to the term "Charlie's Angel"!!!!!
    Well I gotta go now.  Let me know how things go for your friend.          Peace to you Charlie and Michael
    XOXOXO

    5 months ago

  • jenny

    I too so admire your dedication to Charlie. He's a very fortunate man to have such a caring soul to look after him. The fact that you are not 'blood' and have taken care of this man for so long tells us all that you are incredibly unselfish Michael. Our hats are off to you. Hope they can get his meds sorted out and that your caring role will be a little easier when he comes home. Well done...the world needs more people like you. I know you are not religious, but God takes note of all the good you do. Take care and enjoy the break.(((hugs))) Jenny

    5 months ago

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