The 'networking' of the Parkinsn list in cooperation with the national
organizations produced an excellent turnout for the March 7th Symposium. At
many locations 'undocumented' newcomers outnumbered the support group
attendees. This is great news! Local group produced news stories, which put
the name Parkinson's on the minds of many who had never thought of it and
brought in those who have it and may have thought that they were alone.
 
While the Symposium produced little new news for list members, we are on the
'cutting edge' here, the 'new' news brought new hope to the newcomers.
 
Who were the sponsors? Somerset Pharmaceuticals, of which, Sandoz
Pharmaceuticals is a part, paid for the production. Those in the U.S. who
take Eldepryl indirectly paid with their $60 to $120 a month Eldepryl
prescription cost, as well as taxpayers because it was a business expense.
We're not complaining....just stating the facts.
 
Drs. William Tatton, of Dalhousie University, presented the laboratory case
for deprenyl (selegiline, Eldepryl) and "Rocky Balboa", Warren Olanow of Mt.
Sinai, presented the clinical case.
 
Dr. Dee Silver, of San Diego, California, moderated the presentation and
briefly presented the 'Algorithm'.
 
A PhD, Dr. Kordower from Rush-Presbyterian in Chicago provided the new news.
Drs. Lang in Toronto, Canada and Goetz at Rush-Presbyterian will start a
Phase 1 clinical trial using Glial Derived Neurotropic Factor. Phase 1
trials help determine safety and if there is any, efficacy. These will start
later this year.
 
Dr. Kordower also presented a case of Dr. Olanow's, Patient 1 of a fetal
transplantation procedure. It was previously presented at the AAN convention
last year but this is the first time, that I know of, that any patient
groups have seen this data. Patient 1 was followed-up on until his
unfortunate death from complications of an ankle surgery. At autopsy, the
success of the procedure was verified. The details of the case were:
 
Pre-operatively Patient 1 exhibited the following symptoms and history:
 
Patient 1
 
Fifty-Nine year old male
Eight year history of PD with tremor, rigidity, bradykinesia, and
 gait disturbance
Motor fluctuations, dyskinesias, and dystonia which could
 not be satisfactorily controlled by drug management
1700/170 mg levodopa/carbidopa/day
First operation: 2/93; right side-four donors
Second operation 3/93; left side-three donors
Cyclosporin initiated 3 weeks prior to 1st surgery and
 discontinued 6 months after the second operation
Modified CAPIT protocol
PET scans at baseline, 6 months and 12 months
Patient died 8/94 from a massive pulmonary embolism
 secondary to recovery from ankle surgery.
 
Patient 1 "Off Time"
 
Percentage of "Off" time when meds were working
 
Baseline  50%
1 month   17%
3 months  13%
6 months  03%
9 months  03%
15 months 01%
 
*** Editors Note # 2 ********************************
 
Dr. Kordower did not mention whether levodopa dosage or
frequency of dosage was modified post-operatively in this patient
which could have contributed to the decrease in "off" time.
 
******************************************************
 
Patient 1: Dyskinesias
 
% time with dyskinesias during 'on' when meds were working
 
Baseline  20%
1 month   07%
3 months  04%
6 months  01%
9 months  01%
15 months 01%
 
*** See Editors Note # 2 *****************************
 
Patient 1: UPDRS "Off"
 
Total Score: Tested when meds had been withheld for a period of time
 
Baseline  80
1 month   50
3 months  55
6 months  58
9 months  56
15 months 50
 
PET Scans
 
Pregraft   transplants clearly visible
6 months   transplants were producing more dopamine
12 months  transplants were sprouting and increasing in area
           and intensity of dopamine production.
 
At autopsy, there is no evidence that the Parkinson's disease
process is damaging the implanted cells and over 200,000 of the
implanted cells had survived.
Stain test on autopsied brain showed that over an 18 month period,
the implants had completely innervated the surrounding areas of
the brain.
 
 
WHAT PATIENT ONE TEACHES US
 
Robust survival of grafted fetal nigral neurons can be achieved
 in humans.
 
Grafted fetal nigral neurons can provide extensive dopaminergic
 innervation to the parkinsonian striatums.
 
Clinical recovery is associated with graft survival and not
 the sprouting of host systems.
 
Enhanced levodopa uptake in PET scans following transplantation
 is associated with graft survival and not improving of host
 dopaminergic systems.
 
*** Editors Note # 3 ***********************************
 
The abstract of this case is in the parkinsn archives.
It was presented at the AAN annual convention in the Spring of
1995. Dr. Kordower's presentation here with the details is truly
encouraging.
 
To receive the AAN abstracts, send a message to:
 
[log in to unmask]
 
In the body of the message paste only the following:
 
//DBlook   JOB   Echo=No
Database Search DD=Rules
//Rules DD *
select * in parkinsn
print all 2756
 
 
**********************************************
 
Mt. Sinai, as well as Dalhousie Medical Center in Nova Scotia are doing
clinical trials on fetal transplantation. Congressional enactment banning
fetal cell procedures may force folks to seek them in Canada. This
congressional mistake, as far as Parkinson's research is concerned, must be
made right at the ballot box in November. If you are not political now...use
this as an incentive to be so.
 
THOUGHTS ON FUTURE SYPMOSIUMS
 
Any pharmaceutical company desiring a patient audience, should recognize
that 30 days is not enough time for local groups to plan a successful
meeting. Some groups did not receive local publicity because by the time the
word was out, here and in the associations, and the delay getting the
handbooks, not enough time was permitted for local outlets to schedule us in
their articles or programs. We barely had time set up sites, let alone
publicize it.  The sponsor and the PR company need to share that
responsibility for not doing prior planning.
 
If, as was the case this year, a physicians conference is scheduled the same
day, The sponsor even though they use a different PR organization need to
include the Parkinsn list in their publicity. Many hospital sites learned of
the physicians conference from their hospital satellite coordinator that
another conference was scheduled that day.
Somerset, the desire to 'compartmentalize' or hold another 'secret'
conference that could be of benefit to a multi-faceted group like Parkinsn,
does not make 'happy campers'.
 
The "Neuroprotective Story: From petri dish to clinic, is becoming rather
worn. Commercials by the sponsor through out a symposium would be better
than restating a hypothesis that hasn't fully made the transition from the
pretri dish to the clinic.
Eldepryl does have its place in the treatment of early Parkinson's disease
but its continued use in hopes of some neuroprotective mechanism in more
advanced patients is in question. Patients are spending $60 to $120 a month
on this possibility.
 
Terminology used in a patient/caregiver type symposium should be
understandable. In the neurosciences poly-syllable words are the jargon of
the art. We need presenters that can simplify explanations so that we can
understand the concepts.
 
Lastly, but not leastly, future sponsors and promoters of symposiums should
realize that the parkinsn list can be an ally along with the national
organizations. While there are those among us who are in the 'business' of
Parkinson's, the majority of us are volunteers who contribute their own time
and resources in our efforts. Any future programs should note the
contributions made by the parkinsn list in the program credits.
Somerset and their PR agency are very silent on this matter.
 
Thanks to all the list members who participated in the Symposium preparation
and established sites in their hospital, community, support group or home.
The site list was very extensive this year. Our success and participation
this year helped remove the bad memories of being 'locked out' of last years
symposium. Let's pray that this new spirit of cooperation between the
national organizations carrys over into other areas also.
 
John Cottingham    "The parkinsn list brings Knowledge, Comfort, Hope, and
Homeboy             Friendship to the parkinsonian world."
LibraryH            Parkinson's Chat on the Undernet 8:30 PM CST -6 Daily.
                    If you access the Internet through a provider with a
[log in to unmask]     PPP/SLIP account, free IRC chat software is available. WFD