My initial reaction to MJF's interview last night was also that it
presented a very unrealistic view, and would not help the PD community.
Yet upon thinking about it more, I realized that although Fox is facing
the same disease, his reality is not our reality. His celebrity and
wealth shields him from many of the non-medical issues many other PWP
have to deal with - in some ways, he does live in "Pleasantville." If
his show is canceled, or he loses a role due to PD, does he have to
wonder how he will pay the rent, or send his kids to college? If he
needs assistance at home, will he ever face the same problems as Ivan?
Did he have to consider whether or not his medical insurance would pay
for his surgery? If you watch Spin City, you may have noticed most
camera shots don't show his left hand or arm. How many others have the
option of editing out our tremors at work?
I know we all try to be hopeful, but living a celebrity's life, must
make it so much easier to be upbeat and optimistic. However if he is
to be a spokesperson, he needs some education about the way the rest of
us live and about the political issues involved. He said he will be
cured by the time he is 50 - he needs to be made aware of the research
funding issues, and the attempts to limit stem cell research. I think if
he lurked on the list, even for just a week, it would be quite an
education for him.
In the People article I found a few things about his treatment puzzling
- why he had surgery at an early stage, that there is no mention of any
other medication other than Sinemet. My teenage son, who is so used to
seeing me popping pills all day long, also pointed out that Fox said he
doesn't take Sinemet at home. The public needs more complete medical
information than what is presented here.
This is not to criticize Fox in anyway. I still do think his
announcement was a courageous act, and it has brought the media attention
to PD that we've sought for a long time. Hopefully, he will become
involved, and he will keep public interest alive. Perhaps that is the
role of a "celebrity spokesman." In terms of educating the public, we
should all do what we can locally, and urge all the Parkinson's
organizations to do all they can on a national level - hopefully in a
united effort.
Linda Herman
