Dear Listmembers,
Having returned from a combined business/vacation trip to the UK, and
(mostly) recovered from jet lag, I'm passing on my notes (as best I can
decipher my own frantic scribbling) from the London national conference
"The Science & Practice of Multidisciplinary Care in Parkinson's Disease
and Parkinsonism," held June 12.
Professor Brian Jarman of the Imperial College School of Medicine
presented results of a study on the extent to which PD Nurse Specialists
can improve the quality of life for PWP. He made the point that
physicians who are GPs see too few patients with PD to gain adequate
experience to treat PD effectively, and that Nurse Specialists can help
to fill this gap. Results of the study showed that PWP who received care
from nurse specs. showed less deterioration in quality of life, fewer
medical complications (such as fractures), lower admission rates and
lengths of stay in institutional care, and that there was a saving of
300 pounds per patient per year to the health system.
I thought this was an excellent approach; I believe Australia is now
instituting nurse specs. for PD. Is anyone aware of a similar system in
the U.S.?
Two Speech and Language Therapists gave excellent presentations on
problems with swallowing in PD, and urged regular monitoring to prevent
weight loss, anxiety, disturbed medication intake, aspiration pneumonia
and other complications. Some interesting points:
- PWP may find they swallow better when "off," however, SLPs prefer
retraining so that swallowing can be performed effectively while "on" as
this may avoid other complications.
- chewing gum can be an effective means of helping with swallow
function
- reflux (the release of stomach acid into the throat) can increase
secretions of acid which may be inhaled into the lungs, causing
aspiration pneumonia
- PEG tube feeding (a "buttonlike" device is inserted in the
abdominal area; a tube can be attached whenever needed to provide liquid
nourishment) may be recommended if oral intake becomes too difficult;
this can help prevent weight loss, urinary tract infections, and other
diseases related to malnutrition and dehydration
Finally, Janice Fiske, Senior Lecturer in Special Care Dentistry,
London, presented information on the oral problems seen in PD. She
states that incidence of "burning mouth" and dry mouth in PD is at least
twice that of the rest of the population, and dental problems are
commonplace. Burning mouth may be due to hormonal imbalance and/or
depression. Dissatisfaction with dentures due to inadequate fit or poor
muscle control is a common complaint -- dentures are retained by suction
and can be hard to retain. She recommends avoiding reclining positing
during dentistry; semi-reclined should be used to avoid choking.
Dentures are only 1/4 to 1/3 as effective as teeth; prevention of tooth
loss is important. Adaptive handles for toothbrushes, and electric
toothbrushes may help in maintaining good oral hygiene.
I regret being unable to present greater detail; the conference room was
rather dark and my handwriting (never particularly legible) suffered
greatly, also I was writing very fast trying to keep up. These are the
only points I can give with certainty.
The conference was excellent, and made me wish the US would adopt some
of the practices I learned about. My own poster presentation "Risk for
malnutrition and bone fracture in PD" received gracious attention, and I
was only too happy to answer questions regarding to the study and the
need for medical nutrition therapy.
The rest of the trip was exciting -- my sister and I visited the town in
which our great-grandfather was born and raised, and looked up old
census records to find other family members. We loved Oxford and the
many wonderful cathedrals we were able to visit. We hiked almost every
day and were delighted with the prevalence of public footpaths. We
really miss the bread, cheeses, and cream tea -- also the excellent
beers!
I must also mention the warm and gracious hospitality of our listmembers
Ray and Helen Lakin. We had a lovely visit and were nearly overwhelmed
at the kindness and consideration they showed in making us feel at home
and welcome in England. With their guidance, we were able to visit a
portion of the Lake Country we'd never have found on our own, and also
did a great deal of sightseeing that doesn't show up in the guidebooks.
Our visit with Ray and Helen occurred at the end of our stay, and we
left wishing it could have been much, much longer.
It's good to back on the listserve -- I've missed you all!
Best regards,
Kathrynne
--
Kathrynne Holden, MS, RD
"Nutrition you can live with!"
Medical nutrition therapy
http://www.nutritionucanlivewith.com/
Tel: 970-493-6532 // Fax: 970-493-6538
