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Dear Maria,

I think that it is important to realize that most doctors are
psychologically "burnt out" when their professional practice deals with
chronic and progressive diseases.  For the most part my neurologists have
been cold, distant, irritated, and detached.  My present neurologist rants
and raves about politics and his wife when I see him.  You have to study PD
yourself to get answers, but keep in mind that PD itself is highly variable.
Please also remember that are really caring people out there that you can
turn for support, but you have to find them.  Don't limit yourself to
doctors when looking for support and understanding.  Nurses, nurse's aides,
support groups, etc. can be helpful.  Also, I have found that friends and
family can have very unexpected reactions to the illness of a family member.
  Some run away and some pitch in and surprise you.  Anyway, good luck.
David


>From: Maria Cuevas <[log in to unmask]>
>Reply-To: Parkinson's Information Exchange Network
><[log in to unmask]>
>To: [log in to unmask]
>Subject: A new signee...
>Date: Wed, 5 Apr 2006 10:59:37 -0500
>
>Hello All,
>
>My name is Maria from Texas.  I've been doing research on advanced
>Parkinson's disease on the internet because my 74 year old mother's
>disease is progressing rapidly.  I've recently found that there is a
>local support group in my home town so I'm looking forward to hearing
>from the group.  In doing my research, I found this link.  I'm 43 and
>have been given this duty/assignment of being the main caregiver for my
>mother.  To me this comes naturally and though want to do this, I still
>feel overwhelmed most times.  It's a learning process.
>
>
>
>I'm very frustrated with our doctors (neurologist) and feel that they
>are not taking the time to explain what is happening in detail and what
>is to happen in the future.  I'm scared and I really don't know what to
>expect.  I only know that my mother after having this horrible disease
>for 7 years, that the disease is progressively getting worse since
>January of this year.  I want to understand what to expect, how to make
>my mother comfortable and to hopefully bring her comfort to what I
>believe is the beginning of the end.  I hope to receive some feedback.
>
>
>
>I am the youngest of 6 children and it's like I will have to inform my
>other siblings and learn to train them to help me out.  My father is
>from the "old school" and in the Hispanic culture, the woman is to take
>care of the man....therefore my mother has basically tended to his every
>need, has taken care of him since the day they married.  I hear him say
>he is willing to learn how to take care of her now so I'm in the process
>of showing him how.
>
>
>
>Does anyone out there feel that we as patients of doctors, that in our
>present time and day we are only numbers, quotas to them??  Where has
>the compassion of our professional people we know as doctors gone to?  I
>need explanations, reassurance, sympathy, knowledge, comfort, really
>anything but "what's wrong with her so I can prescribe something for
>her?".  Our doctors have lost that "bed side manner" technique taught in
>medical school I believe.  I can go on and on in this subject.
>
>I really just need to know that caring "professional" people do exist
>and that if they even realize what it is they are not doing?
>
>
>
>Thank you all.
>
>
>
>Maria
>
>
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