Hi Paul: This is beautifully written and eloquently
speaks to the desperate need for the research that can
find a cure NOW. We don't have the luxury of time.
Carole H.
--- P&B Fahr <[log in to unmask]> wrote:
> List members:
> I did not add my comments to this discussion sooner
> because I wanted my initial emotions to subside
> before
> writing and editing my response. I do not wish to
> cause
> new members of the list to be discouraged but I
> believe
> that there are appropriate times for a dose of
> reality
> when it comes to PD. The most recent I recall on
> the
> list was the
> discussion of whether the explanation of the 5
> Stages of
> PD should have been posted.
>
> The members of this list have a very wide range of
> PD
> symptoms and some have been fortunate to have lived
> with
> PD for a very long time without becoming completely
> debilitated. If you check out the NINDS website and
> read the extensive list of neurological disorders,
> most
> of which we know of no cause let alone a treatment
> or
> cure, you should realize how extensive neuro
> disorders
> are in this world.
>
> The discussion on what is acceptable research causes
> me
> to question the concern some persons profess for the
> sanctity of human life.
>
> My maternal grandfather died of ALS, a disorder with
> no
> cure that eventually disables all bodily functions
> and
> results in death.
>
> My father was diagnosed with PD a few months before
> his
> 65th birthday and died of complications resulting
> from
> PD. After
> 13 years of suffering he died in the hospital
> weighing
> about
> 78 pounds (n=145).
>
> My brother was diagnosed with PD when he was 44. By
> the
> time he was 49 his most effective means of mobility
> was
> crawling around on his hands and knees. He needed a
> telephone that had headphones and a mike. He could
> not
> control a computer mouse with both hands and had
> great
> difficulty feeding himself. The next logical step
> was
> long term nursing care. He had biSTN a year and a
> half
> ago ---- a very effective treatment for PD but it
> IS NOT A CURE!
>
> People with the very advanced stages of PD still
> have a
> brain that can function normally intellectually but
> is
> trapped in a non-functional prison -- their own
> body.
> Is a living, breathing, thinking, feeling,
> intelligent
> human being trapped in a heap of dysfunctional cells
> of
> less value than the few cells of an
> embryo that may become a viable being (God willing)?
> A
> person with the advanced stages of PD is just
> as helpless as that embryo and must depend on other
> human beings for their very existance in this world.
>
> Are we humans so omnipotent that we can determine
> what
> God's purpose is for each embryo that is created?
> Are
> we so all-knowing that we can determine what our
> creator
> has determined our destiny to be --- how we will
> serve
> humankind? Have we considered that perhaps God's
> purpose for certain individuals is to serve mankind
> by
> being the building blocks of medical breakthroughs
> to
> benefit others?
>
> We need to use every resource available to make life
> better for all mankind. The research that is
> "targeted"
> for Parkinson's Disease may benefit many other
> people on
> this earth. Maybe that research will find a
> treatment
> or cure for Charcot-Marie-Tooth (CMT), a heritable
> genetic
> disorder a close friend of ours has recently been
> diagnosed with. Maybe it will result in solutions
> to
> other neurological disorders or non-neuro diseases.
>
> If you can look at a totally helpless person that
> has
> very advanced PD or any
> other disease and determine that every resource
> available should not be used to find relief for that
> malady so others after them need not suffer --- you
> must
> evaluate
> your true concerns for human life.
>
> Sincerely,
> Paul Fahr
>
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