Doctorwine....
Excuse me, and with all due respect, having had since May 19, 1997, the 3rd in
a series of collagen injections for PD-related -speech problems involving my
vocal cords seems to have made me, by default, kinda the Parkie List "resident
expert" on this form of treatment. Therefore, I'd like to correct BOTH you
and Ken B on a coupla related issues...
Ken: While the collagen injections DO only work on the vocal cords, hence not
being as complete a therapy as the Lee Silverman method, collagen injections
aren't for everyone. It's NOT common to find the collagen residue build up in
the vocal cords until AFTER HAVING SEVERAL (as in MANY) of the injections,
thus lessening or possibly even omitting the need for future collagen
injections That's benefit is NOT a "given!" It's a beneficial side effect
IF it happens, but there is absolutely NO guarantee it's gonna happen to all
having the collagen injections. THAT is on a person-by-person basis and who
gets that benefit is anybody's guess.
Doctorwine: There are two MDs in the L.A. area currently performing the
collagen injections TODAY. However, both are training other MDs from all over
the USA just as fast as they can. The injections last from 3 to 5 MONTHS not
WEEKS as you stated. They offer relief for only one speech-related problem
and THAT is vocal volume which IF it's going to work for someone WILL give 'em
immediate relief;
I'd call the collagen injections a "passive treatment," since making an MD
appointment and showing up for that 10 minute procedure on time is all that's
required of the patient. Again tho, it's not for everyone because it
address only the one problem. Well, really TWO benefits from the collagen
injections, as one's breathing while speaking becomes much easier too, so
there's little of no pausing to take a deep breath a couple of times in order
to complete a sentence.
BOTH Ken & Doc: IF a Parkie has only a problem with their vocal cords (i.e.,
the vocal cords are flaccid and lax 'cause of the PD, then the
Medicare-covered collagen injections most likely WOULD be beneficial for
them.
IF the speech problem goes BEYOND the vocal cords, then certainly the Lee
Silverman speech therapy seems to the way to go, provided one can afford the
cost and one can find a LOCAL instructor - almost-but-not-quite as difficult
to find as finding an MD performing the collagen injection, at this time (I
know, 'cause I spoke with the Gould Clinic in Denver about the therapy, cost,
location of trainers, and the continued patient success rate vs., the possible
eventual "Parkinson's apathy symptom" lessening the beneficial effects of the
therapy. The Gould Clinic were very honest and cooperative, by the way and I
appreciated that. They have a Web site and the URL is:
http://web1.dcpa.org/lsvt.html
Those few Parkies whom I know who have already completed the Silverman program
seem to have initially had outstanding results while GETTING the therapy.
HOWEVER, it appears that the need to KEEP ON PRACTICING what they've learned
seems to be difficult for many of them to continue to sustain over the long
haul. And eventually they forget to use what they've learned and initially
benefited from.
This appears NOT to be because of any flaw in the initial Lee Silverman
therapy training, but rather just a lack of will and that
oh-so-common-and-frustrating Parkinson's symptom of involuntary-patient-apathy
over time.
The DESIRE to speak clearly and well IS there, but the effort to PRACTICE,
despite the fact that practice sessions take only a few minutes at a time and
don't need to be done daily (tho that prolly wouldn't HURT and would reinforce
what one's learned AND get one in the habit of "thinking and speaking a la Lee
Silverman REGULARLY), with each session being made at the PWP's location of
choice, i.e., at home or maybe office, rather then at the location where they
had the initial therapy, that practice IS needed each week, EVERY week,
indefinitely, and MUST be made for the continued theraputical benefits.
(ooops! longest run-on sentence in the world <smile>
In other words, the first treatment, if the Parkie will benefit by having it,
is by far the EASIEST to get continued benefit from. The Lee Silverman
treatment is obviously the most complete treatment, covering as it does,
several different causes of PD-related speech problems but DOES require a
lifetime commitment (or until there's a PD cure!) to PRACTICE several times a
week.
In my opinion no one treatment is the BEST... They're different from each
other and ultimately it's the patient's choice as to which treatment they are
prepared to have.
By the way, speaking ONLY for myself, I've had excellent results from the
collagen injections, and have had then 3 times, four months apart. I
recognize that I'm also having additional speech problems developing, i.e.,
tongue and muscles around mouth sometimes take on a life of their own (as do
my eyes), and I've got some swallowing problems. Since this mostly happens
late in the day and in the evening, I attribute it to a Sinemet build-up and
am now adjusting - with moderate success - my daily Sinemet dosage a bit.
However, because of the fact that this speech problem IS going to continue to
degenerate, when the time comes, I WILL seek out a Lee Silverman Voice
Training specialist (there's only a coupla-three CERTIFIED ones in the entire
L.A. area, according to the Gould Clinic), and if I can afford to do it, WILL
take a shot at it.
By the way, I believe, as do both MD's (the UCLA MD and the Kaiser MD) who've
performed my collagen injections (the initial at UCLA for $500 because I
hadn't yet called all the local Kaiser facilities to see if one of THEIR MDs
did the procedure. Eventually I did find Kaiser hadda MD who now does my
injections - for my Kaiser member co-payment of $10)... uhhh.... I digress...
both MDs and I concur that my unilateral right-side-only pallidotomy on Oct.
24, 1994, which was BEFORE I began having speech problems, has probably been
the cause of my RIGHT vocal cord being relatively and acceptably within the
normal range while the left one HAS been affected by the PD.
This is just an educated guess tho, so keep that in mind before ya rush right
out and have a pallidotomy!
Barb Mallut
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From: Parkinson's Information Exchange on behalf of Doctorwine
Sent: Thursday, April 30, 1998 9:21 AM
To: Multiple recipients of list PARKINSN
Subject: voice treatment
Pardon me for butting in, but I was concerned about Ken Becker's
answer
creating a misconception. The way Mr. Becker's letter was written, one might
get the impression that collagen injection would be the first thing tried,
then, if that failed, one might look into The Lee Silverman Voice Treatment
method. As enthusiastic a correspondent as Mr. Becker is, he has no
credentials. His father has Parkinsons, and that is why he stays on this
listserv. I would beg to differ with him, and offer the following. I am a
physician, I have PD, I am a Lee Silverman graduate. My opinion is that his
recommendations are reversed.
From a modest beginning, the LSVT has branched. In the last three
years, the
staff of the William Gould Center for treatment of the voice at the Denver
Center of the Performing Arts have trained other speech therapists around the
country and the LSVT is thus fairly widely available. By contrast, the
collagen injection technique is practised by one doctor in the LA area, only,
and must be repeated every 5 or 6 weeks with additional injections.
I would be glad to assist you in finding a speech therapist in your
area who
has trained in the LSVT.
Sincerely,
Ellis
A. Penny, M.D.
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