(8/22/96)
Dear PDIEN Subscribers:
I would greatly appreciate any suggestions, recommendations, or even
guidance toward resources or experts (preferably in the New York City or
White Plains, NY area, but I'm interested even if it's Timbuktu) that you
may know, regarding the following situation, in the hopes of helping my
mother, who is 89 and has PD, to survive.
In essence, I urgently need to know what can be done to revitalize my
Mom's swallowing-capability & gag-reflex, to avert potential aspirations
(which have already, says the doctor, caused life-threatening problems).
Mom has been in the hospital for more than a month now (following an earlier
2-month hospital-stay), most of that time being in the Intensive Care Unit
and on a respirator; and now, as of a few days ago, after nearly 2 weeks
of being off the respirator and recovering in the hospital, and getting
some of her swallow-&-gag-reflexes back, she's again on a respirator, now
in the Coronary Care Unit, with pneumonia, having ended up there, they say,
as a result of what appears to have been another congestive heart
failure which may (possibly) have been a result of aspiration during
the night.
This is a critical situation. It has to do with, in part, her PD (or PD
medications or, perhaps, her being medicated improperly for PD now), and
her currently inefficient swallow-reflex and gag-reflex and, to some
degree, her intestinal tract operating sluggishly, again due to either her
PD or PD meds (or improper dosages of PD meds).
In essence, her pulmonologist at the hospital has reasoned out that her PD
-- which prior to these hospital stays was not much of a problem [except
for the then-recent onset of periodic night-time tremors that would hit at
1-2am and run for 40 minutes straight] -- is the cause of her
swallow-&-gag-reflexes not working well, and that, as a result, he
says, she has a tendency to aspirate -- and that that aspiration-tendency
will continue to put her life at risk. He says he feels certain that
*aspirations* were the cause of her having had several congestive heart
failures & pneumonias (all *during* her stays in hospital, except for the
first congestive heart failure) since late March this year.
But *I* know that her PD meds -- which were controlling her PD situation
fairly well, with some exception (night-time leg-tremors) prior to her
hospital-stays (which first began in late March for 10 days, and then ran
from late April to late June, and now is running from early July to the
present) -- have been *greatly different* in the hospitals than what she'd
been taking at home before these problems arose. And *I* suspect that if
her PD meds woere now to be *properly* adjusted, by a PD expert, her
swallowing (etc.) reflexes and digestive-tract motility would *improve*.
Am I right?
Any suggestions? Are there also, perhaps, *other* approaches (herbal?
non-western? alternative?) that might safely & effectively help revitalize
Mom's swallow-&-gag-reflexes and her digestive-tract's motility?
I've given details of Mom's overall situation several weeks ago (July 6 or
7, I believe, plus more later) in the PD Digest. But here's an updated
synopsis:
Basically, my mother, who is a very youthful 89, has had PD for many
years, and now it may be playing a dangerous role affecting her ability to
survive. She is currently in the hospital, has again been (as of a couple
of days ago)re-intubated (=on a respirator) as a result of, the doctor
speculates, congestive heart failure and/or aspiration, and now she again has
pneumonia and possibly pulmonary effusion (=liquid in the sac around the
lungs). Her nutrition for this past more-than-month has been purely via an
NG-tube, as her swallowing-and-gag-reflex have been seriously compromised
(although partly working), as determined during the nearly 2-week period
(ending this past Monday) when she was not on the respirator.
Her pulmonologist is convinced that her problems are mainly due to
*aspiration* (i.e., liquids going into her trachea by mistake), which he
says is due to her inefficient swallow-&-gag-reflex -- which he attributes
to PD (and about which I don't necessarily agree). And he & another
pulmonologist that my family knows both predict that this aspiration-
problem -- due (they say) to PD -- will be a never-ending "Sword of Damocles"
that will continue to threaten my mother's life.
I find that hard to buy. I presume that Mom's pulmonologist has discussed
this with her neurologist (whom I'm told has some PD knowledge) at the
hospital. But I'm still seeking answers -- better answers I hope.
And I recently *finally* was able to get a reutedly excellent (I hope) PD
specialist (a Dr. Fazzini) to take a look at Mom's case, so I hope he can
come up with something -- but I still need all the creative and insightful
answers and guidance I can get, and quickly. Mom's situation, her
survival, demand it.
Overall, although she'd been very healthy for years and
years, and although her PD had been well-controlled for all these
years too, since late March she's been in hospitals (2 ot them) for
congestive heart failures and, thanks to emergency intubations several
times (and for very long stretches of time), for pneumonias which she
picked up in the hospital. Her intestinal tract has also been a problem,
since late April (when her former neurologist first prescribed
bedtime-doses of bromocriptine) periodically becoming distended and
periodically not processing too well (even though, for example, for the last
month she's been getting ZERO food/liquid by mouth but instead has been
getting liquid nutrition such as Ensure via a nasogastric-tube).
In late March, Mom had (for the first time ever) what the doctors said was
congestive heart failure, for which she then spent 10 days in the hospital.
Her symptoms, when it happened that night, were a combination of increasingly
rapid breathing, increasing strong tremors, tightness across her chest, and
increasing grogginess. An extra half of Sinemet didn't seem to help (or if
it helped, it was awhile later, after the EMS people arrived and administered
oxygen with proventil). -- I often noticed, after her late April admission to
the hospital (which was for the digestive tract problem, but during which
time they gave her congestive heart failures and pneumonia), that the
*same symptoms* every so often again appeared (except for the chest-tightness,
but perhaps that lack was because in the hospital she was getting a
nitroglycerin-patch all the time). And, although I am not a medical
professional, I've long suspected that it was her *PD TREMORS* that played
a role in this complex of problems.
I don't have a clear answer, and it seems that the doctors don't either,
except that her current primary doctor (pulmonologist) believes that Mom
probably aspirates, and that those aspirations are what makes it harder to
breathe -- and causes the pneumonias -- and then puts a strain on a weakened
heart, which can't get sufficient oxygen, which makes for more energetic &
shallow breathing, which creates more exertion, which...maybe also causes
the tremors.
Seems reasonable, but is it so? Might PD medications, if better
optimized -- they are far from optimized now -- help avert such problems?
What about other ("complementary medicine", for example) approaches?
As I said, suggestions and recommendations will be appreciated.
Thanks, and best to all.
-- SJS
