Hi Kathy,

  The gag-choke reflex that many with cp have is a major obstacle to level of
comfort when having dental work done. Many of us take oral sedation, or some
will have full anaesthesia to have teeth cleaned, filled, or extracted (yuck)

  Many dentists and hygienists routinely recommend the use of electric
toothbrushes, which essentially do the work for us, with regard to effective
cleaning and plaque reduction. Manual brushes are very often difficult for those
with grip problems to use well.

  Improved attitude of dental professionals will do much to ensure that
experience with them will be as stress-free as possible. When choosing a
dentist, interview him/her before any work is done so that you can outline very
clearly what your issues/concerns are at the outset. Educate them about cerebral
palsy and how the various quirks related to it affect you in relation to your
experience with dentists.

  If you haven't already, Kathy, you might enjoy reading "Dental Phobia" the
link on my web site. Mag's Open Letter to Dental Professionals is there as well
:) - http://www.brunnet.net/terrier/tooth.htm

Cheers!

Carla
http://www.brunnet.net/terrier

kjpink wrote:

> Anthony,
>
> Is this a common problem for people who have Cerebral Palsy? ,Kathy
>
> ----- Original Message -----
> From: "Anthony Arnold" <[log in to unmask]>
> To: <[log in to unmask]>
> Sent: Saturday, March 24, 2001 8:38 PM
> Subject: Re: My revised letter...
>
> > Whoever wrote this letter, actually did a wonderful job describing the
> > problem and explaining what needs to be done to correct it by visiting
> > dental schools and addressing the issue to upcoming dentists.  I myself,
> > also can't sit still for them to do any dental work on me.  I was blessed
> as
> > a child to be seen by a dentist who had hospital rights to work on me
> while
> > I was out, but he only sees children under age eighteen, so he won't see
> me
> > anymore and I'm having a difficult time finding another dentist who has
> > hospital rights and is willing to see me.  So experiencing this first
> hand,
> > visiting and speaking at the dental school isn't a bad idea, it might get
> > some of them thinking and caring for us.
> >
> > Thanks,
> > Anthony
> >
> > -----------------------------------
> > Join my AAC listserv today at http://groups.yahoo.com/group/arnoldaac
> >
> >
> >   ----- Original Message -----
> >   From: Magenta Raine
> >   To: [log in to unmask]
> >   Sent: Saturday, March 24, 2001 1:12 AM
> >   Subject: My revised letter...
> >
> >
> >   An Open Letter to the Dental profession
> >
> >   by Tamar Raine
> >
> >   I spent the last two years looking for a dentist I could work with. I
> have
> >   some special needs because Cerebral Palsy and Dystonia affect my ability
> > to
> >   hold still, and Fibromyalgia makes the whole process very painful. I
> tried
> > at
> >   least six dentists in the East Bay. Finally, I called an old friend of
> the
> >   family who taught dentistry at UCLA. He referred me to the dental
> schools
> > at
> >   several Universities. When I called the first place, the person we spoke
> > to
> >   had this reaction when told I had Cerebral Palsy; "Eww, what is THAT?
> What
> >   kind of person has that?"  I looked at my assistant -- and she looked at
> > me,
> >   and we hung up. The school has a lot of educating to do.
> >
> >   So, we called the next school, and they were fine with everything. At
> the
> >   first visit, they decided they needed to sedate me, so the Doctor wrote
> me
> > a
> >   prescription for Valium. It was not enough, and I told him so. I had
> taken
> >   Valium most of my life up until 4 years ago. But he persisted. So I went
> > back
> >   a couple of weeks later, and they tried to work on me again. But my gums
> > were
> >   so sensitive that they decided they were going to have to do a full
> >   anesthesia which required I be admitted to a hospital. It looked like I
> > was
> >   going to lose three or four front teeth.
> >
> >   We scheduled an appointment for February, then they called saying they
> had
> > to
> >   reschedule, so I didn't go in until March first. When I woke up from the
> >   surgery, I was told that five teeth had been removed. Okay, I thought,
> > that's
> >   too bad, but hopefully this will allow my mouth to heal.
> >
> >   In the meantime I got all kinds of advice from one of my personal care
> >   assistants who is going through a similar problem with her teeth. Her
> > dentist
> >   talked to her, while mine said absolutely nothing about changing the way
> I
> >   clean my teeth, how I eat, etc. This entire thing has been like a
> wake-up
> >   call to me, and now I'm passing on what I've learned to others. I have
> >   changed a lot over the last three months, but my dentist wouldn't know
> > about
> >   that, as he never bothered to check in with me about how I might improve
> > and
> >   keep my gums and teeth healthy. It seems as though he just expects me to
> > go
> >   on as before, that I can't learn from my mistakes. But I can, and I
> have.
> >   Most of us can when given the right information.
> >
> >   I assumed that when I had healed from the surgery the dentist would talk
> > to
> >   me about dentures. Well, I finally went in for a post op visit, and I
> > asked
> >   the dental student about a bridge, and the response I got shocked and
> >   astonished me.
> >
> >   He said, "Well, I don't think the doctor had planned for a bridge."
> >   I asked why not, and he sighed and said, "Well, I think it has to do
> with
> > how
> >   tight your muscles are, it would make the bridge pop out all the time."
> >
> >   I said, "Well honey, I am not going without teeth, no-no-no-no-no. What
> > about
> >   implants?"
> >
> >   He said something to the effect that I still had a large chewing area,
> and
> >   that implants would require they knock me out several more times, and
> they
> >   didn't want to do that because of the risks involved. By this time I was
> > very
> >   angry, and I told him that I was not accepting a life without teeth, and
> > that
> >   it is my right to try for some sort of dentures, and please have the Dr.
> > call
> >   me.  I never heard back from the dentist or his student. But I am not
> > going
> >   away; I will not be put off.  I will have teeth. I will not have The
> Look
> >   that conquers up so much negative stereotyping.
> >
> >   It's simply outrageous that dentists don't want to fit disabled people
> > with
> >   dentures. They seem to think it's all right for those of us with
> Cerebral
> >   Palsy, Autism, and other developmental disabilities to go around with
> gaps
> > in
> >   our mouths. It might have been an acceptable appearance forty years ago,
> > but
> >   it is no longer acceptable to be stigmatized in this way. Whenever you
> > look
> >   at a large group of people with developmental disabilities, there are
> > always
> >   a high percentage of people with teeth missing, and crooked remaining
> > teeth.
> >   The look has become part of the stereotype people have of us. We have
> > enough
> >   prejudice against us, we don't need the added stigma of gaping mouths.
> >
> >   Maybe you don't know this, but we do have a social life, and we do have
> >   interests in dating and getting married. We exist in the community now,
> >   instead of being hidden away in back rooms or in closets. I know you'd
> > Never
> >   Dare tell somebody like my sister or my helpers to go without teeth, so
> > why
> >   is it acceptable for me to go without teeth? Also, if I were working, I
> >   wouldn't go without teeth. As it is, I AM looking for a job, all I need
> is
> >   more strikes against me because I don't have a professional appearance.
> >
> >   It might be true that a bridge would pop out on occasion, but it is not
> > your
> >   decision to make. It's my mouth, my life, and I am the one to decide
> > what's
> >   going to happen to my mouth. If a bridge doesn't work, then try
> implants,
> > for
> >   Pete's sake! If I need to be put under anesthesia for this, then that's
> my
> >   decision to make, not yours. I'm aware of the risks.
> >
> >   When will people realize that people with disabilities need to look as
> > good
> >   as their "typical able bodied" neighbors? When will you realize that you
> >   should let the client make decisions for themselves, and discuss these
> > things
> >   honestly with us? When will you learn that people are individuals, and
> > need
> >   to be regarded as such? Why didn't you discuss my options with me before
> > the
> >   surgery?
> >
> >   The more I think about The Look, the angrier I become. I have already
> > worked
> >   over half my life at improving my self esteem, the last thing that I
> need
> > is
> >   The Look. Dentists have a responsibility to make people look BETTER, not
> >   worse. We don't need to perpetuate this stigma. And don't tell me that I
> >   don't need teeth! I've seen what happens over time with the remaining
> > teeth.
> >   They get crooked and the bite changes for the worse, and the lips loose
> > their
> >   muscle tone.  Really, you should do for us, what you'd do for your own
> >   family. I think the dental profession had better update its practices,
> and
> > do
> >   some soul searching.
> >
> >   A friend of mine has offered to do a disability awareness lecture at
> > another
> >   dental school, and they have gratefully accepted her offer. I would be
> > open
> >   to doing the same. Properly educating the dentists of tomorrow will go a
> > long
> >   way to repair some of the damage done in the past. And hopefully, by
> more
> > of
> >   us speaking on the needs of people with disabilities we can save more
> > folks
> >   from needing to have teeth removed.
> >
> >