| Name |
Age |
Location |
Email |
Diagnosis |
Medication-1 |
Regimen-1 |
Med-2 |
Reg-2 |
Med-3 |
Reg-3 |
| Harrison |
10 |
NH, USA |
harrison@drdcentral.com |
GTP Cyclohydrolase Deficiency |
Sinemet Generic 25/100 |
1/4 pill-morn; 1/8 pill aft & eve |
Amantadine Liquid |
2 tsp-morn; 1.5 tsp-eve |
Baclofen |
1/2 pill-morn & eve; 1/4 pill-aft |
| Justin |
18 |
England |
mjjdeere@aol.com |
Segawas, Dopa-responsive- Dystonia. |
Sinemet-110 |
1/2 tablet 3 times a day. |
Domperidone,antinauseant, safe with sinemet. |
When needed. |
n/a |
n/a |
| Gracie |
9 |
NH, USA |
gracie@drdcentral.com |
GTP Cyclohydrolase Deficiency |
Sinemet Generic 25/100 |
1/8 pill morn, aft & eve |
Amantadine Liquid |
1.5 tsp-morn; 1 tsp-eve |
Baclofen |
1/2 pill-morn & eve; 1/4 pill-aft |
| Austin J. Maxwell |
3 |
Washington DC |
j.l.maxwell22@worldnet.att.net |
Dopa-Responsive dystonia |
Sinemet |
1/4 pill in AM 1/4 pill in evening |
- |
- |
- |
- |
| Dawn Donaldson |
48 |
Nova Scotia, Canada |
Irishsenji@klis.com |
Segawa's Dystonia (Dopa Responsive Dystonia) |
Sinemet 25/100 |
One tablet three times daily (after food) |
- |
- |
- |
- |
| Sally Thomas |
35 |
Devon, England |
sallyjt@onetel.net.uk |
Dopa-responsive dystonia (Segawa's) |
Sinemet 25/100 |
half tablet four times daily |
- |
- |
- |
- |
| Angela |
51 |
Texas |
aeleonard@tamu.edu |
DRD - Probable GTP cyclohydrolase deficiency |
lodosyne (carbadopa) |
75mg. 3xper day |
- |
- |
- |
- |
| MAUREEN |
19 |
OHIO, USA |
joan.fisher@uc.edu |
Dopa Responsive Dystonia |
Sinemet CR 25/100 (time release form) |
3x daily |
Artane 5mg |
2x daily |
- |
- |
| Rebecca Cartwright |
26 |
Melbourne |
rebecca.cartwright@bigpond.com |
Seqawa's Disease (dopa responsive dystonia) |
Sinemet 100/25 |
1 tablet in the morning |
Sinemet 250/50 (i think) |
1 tablet at night |
Artane 5mg tablets |
1/2 tablet 4 times a day |
| Renee Groves |
64 |
Salt Lake City, Ut |
woolcabin@qwest.net |
Dopa Responsive Dystonia |
Sinemet (generic) 50/200 |
1 tablet 3 times day |
Permax .25mg |
1.5 mg AM & 1:00pm - 1.0 mg PM |
- |
- |
| Carolina Lee |
30 |
Hong Kong, China |
carodoug@netvigator.com |
Dopa responsive dystonia |
Sinemet CR 50/200 |
2-3 Tablets daily |
- |
- |
- |
- |
| Barbara Bodsworth-Welch |
57 |
Toronto, Ontario, Canada |
ejwelch35@hotmail.com |
Dopa Responsive Dystonia |
Sinemet 100/25 cr |
750 mg per day taken at 4 hour intervals |
-Mirapex 1.5 mg. and .25 mg. |
-1.75 mg. 3 times daily,taken at 8 hour intervals |
- |
- |
| Layla Love |
25 |
sydney |
mslayla@hotmail.com |
Dopa-responsive-dystonia |
Sinement 25/100 |
2 through 4 pills daily as needed |
- |
- |
- |
- |
| Doris Sellers |
19 |
Louisiana , USA |
lady_libra930@yahoo.com |
Dopa Repsonsive Dystonia (DRD) |
Sinemet 25/100 (carbidopa 25, levidopa 100) |
2 tablets daily- when needed- with food |
- |
- |
- |
- |
| Tamara Nowitzki |
26 |
Brisbane Australia |
nowitzki@bigpond.com |
originally CP (1977) Dopa Responsive Dystonia 2002 |
Madopar 125 capsule form |
2/1/2/1 4 hours apart starting from breakfast |
- |
- |
- |
- |
| Mary Boland |
51 |
Sydney, Australia |
maryboland@hotmail.com |
Dopa Responsive Dystonia |
Madopar 50mg/12.5mg (Levodopa Benserazide) |
one three times a day |
- |
- |
- |
-
|
| Nancy London |
42 |
Westerville, OH |
njlondon@telocity.com |
DRD |
Sinemet 25/100 |
3/4ths of a tablet 3xs/day |
Clonazepam .5mg |
1 at night |
Trazodone 50mg |
1 at night
|
| GESSICA DOS SANTOS DA COSTA |
15 years old |
RIO DE JANEIRO - BRAZIL |
jorge@avario.com.br |
DOPA-RESPONSIVA DYSTONIA |
SINEMET 25 mg |
1/4 PILL - one hour before lanche |
ARTANE 5 mg |
1/5 - 1x day |
- |
-
|
| Alexandra M. Reigner |
22 mo |
Moscow, Idaho |
missmadison5172001@yahoo.com |
Tyrosine Hydroxylase Deficient Dopa-Responsive Dys |
Sinemet 25/100 |
1.5ml 3x day |
-Artane 2.5/5 |
-2.25 ml 2x day & 1.5ml 1x day |
- |
-
|
| Lorcán |
36 |
Ireland |
modhuine@hotmail.com |
Dopa Responsive Dystonia |
Sinemet 12.5/62.5 |
1 a day |
- |
- |
- |
-
|
| jesper andersson |
8 |
sweden |
pa.sk@telia.com |
(cp2000)segawas dystoni 2001 |
madopark |
1 tablett morning 1/2 evning |
- |
- |
- |
-
|
| Elizabeth Riggs |
30 |
Yuba City, Ca |
lizbryan2000@yahoo.com |
Dopa-responsive Dystonia |
levodopa, |
250 mg |
Mirapex |
-1 mg |
comtan |
-200 mg
|
| Nikki Bryce |
42 |
Australia |
maxbryce@iinet.net.au |
DRD |
Sinemet (100/25) 9 tablets |
In divided doses through day |
#NAME? |
-1 tablet at night |
- |
-
|
| Colin Deacon |
37 |
Warwickshire |
colindeacon@onetel.com |
Segawas Syndrome (DRD) |
Half Sinemet CR 25mg 100mg |
Half a tablet 4 to 5 times a day as needed |
- |
- |
- |
-
|
| Ray |
57 |
Texas |
klarkkent@highstream.net |
Segawas Disease |
1/2 tablet 25-100 Sinemet Generic |
Taken every 2 &1/2 hours |
Mirapex 1 mg. |
Every 8 hours |
- |
-
|
| Yvette |
25 |
Melbourne, Australia |
dr_vettey@hotmail.com |
Dopa responsive dystonia |
Madopar 125 |
1 in morning, 1 at lunch. |
Madopar HBS |
1 in morning, 1 at lunch, 2 at dinner. |
Baclofen 25 mg |
1 in morning, 1 at lunch, 2 at dinner.
|
| Gessica dos Santos da Costa |
15 YEARS OLD |
Rio de Janeiro, Brazil |
jorge@sulpel.com.br |
Dopa-Responsiva Dystonia |
SINEMET 25mg |
1/4 PILL-ONE HOUR BEFORE LANCHE |
-ARTANE 5 MG |
- |
- |
-
|
| Nicole |
30 |
Adelaide SA |
ntheodorou@syc.net.au |
Segawa's Dystonia |
Sinemet 25/250 |
!/2 tablet in the morning |
- |
- |
- |
-
|
| Nuria |
28 |
BARCELONA |
novoanur@yahoo.es |
distonia responde a la levodopa |
SINEMET PLUS |
6 AL DIA |
-PARLODEL 5MG |
-9 AL DIA |
#NAME? |
-2 AL DIA
|
| Stefan Brinkhaus |
61 |
Germany |
StefBrink@surf25.de |
DRD with cognitive problems |
Nacome 100 (Sinemet 25/100) |
1/4 every 4 hours |
- |
- |
- |
-
|
| Penny Brown |
45 |
Seattle, WA USA |
arachne.web@verizon.net |
Dopa-responsive dystonia |
sinemet cr 50/200 generic |
3-4 times a day, as required |
neurontin 300mg |
4 times a day |
- |
-
|
| Fabienne Wagner |
23 |
Luxemburg |
t.blasius@gmx.net |
Segawa Syndrom |
Modopar |
1 (morning) 1(afternoon) 1(evening) |
Modopar |
1 in the morning |
- |
- |
| pascale |
30 |
quebec |
brulotte.christian@videotron.ca |
dopa-responsie dystonia |
prolopa 50 mg |
50 mg i pill at morning |
- |
- |
- |
- |
| william smith |
27 |
vancouver wa |
wsmith79@excite.com |
dopa responsive distonia |
Sinemet |
1 (25/100) pill 3 times daily |
Quinine Sulfate |
1 pill at night before bed |
requip ropinorole HCI |
just started today on ??"dosing Titration"?? |
| Louise Weinberg |
53 |
Massachusetts |
lweinberg8@aol.com |
dopamine-respomsive dystonia |
sinemet |
200mg 3xday |
klonopin |
1mg day- |
- |
- |
| Louise |
53 |
Massachusetts |
lweinberg8@aol.com |
dopa-responsive dystonia |
sinemet 25/100 |
2tablets 3xday |
klonopin |
1mg day |
- |
- |
| Jack |
2.5 |
Wisconsin |
mbrayman@earthlink.net |
GTPCH deficiency |
Sinemet 1/10 compounded |
0.05ml 3times daily |
-BH4 25mg |
-10mg/10mg/5mg |
#NAME? |
-carnitine, Vit. C , Vit E,Vit. B50, Co-Q10 |
| Todd |
14months |
Wisconsin |
mbrandedyman@earthlink.net |
GTPCH deficiency |
sinemet 1/10 compounded |
0.02 twice daily |
0 |
10mg twice daily |
- |
- |
| Barbara Bodsworth-Welch |
59 |
Toronto, Ontari, Canada |
(new email) ejwelch@sympatico.ca |
DRD with parkinsonisms |
Sinemet Cr 100/25 |
every 4 hours ( 6 per day) |
-Mirapex 1.5mg. .25mg = 1.75mg |
-every 8 hours (3 times per day) |
-Comtan (entacapone) 200 mg. |
-every 4 hours (6 per day) |
| Boniotti Davide |
22 months |
Italy |
rosita_b@yahoo.com |
Dopa Responsive Dystonia |
sinemet 1/10 |
22 capsules of 6,66 mg each divides in 3 somminist |
- |
- |
- |
- |
| Kylie |
19 |
Sydney, Australia |
menu2envy@hotmail.com |
dopa responsive dystonia |
Sinemet 100/25 |
2 tablets 3 times a day |
- |
- |
- |
- |
| Amanda |
8 |
Ottawa, Ontario Canada |
sjohnston@rogers.com |
Dopa Responsive Dystonia |
Sinement 10/100 |
1/2 pill morning, 1/4 lunch, 1/4 evening |
- |
- |
- |
- |
| Tina |
23 |
Seattle, Washington |
tina_jpy@hotmail.com |
Dopa-Responsive Dystonia |
Sinemet 25/100 |
4 times a day |
-artaine 2mg |
#NAME? |
- |
- |
| Dawn Donaldson |
52 |
Nova Scotia, Canada |
irishsenji@klis.com |
Dopa Responsive Dystonia Segawa variant |
Sinemet 25/100 |
no Sinemet since January 12, 2006 |
- |
- |
- |
- |
| Bethanie Rogers |
8 |
Cuero, Texas |
cheryl3r@yahoo.com |
Dopa Responsive Dystonia |
Sinemet |
1 tablet in am |
Baclofen |
1 tablet in am and pm |
- |
- |
| Amy |
28 |
Green Bay, WI |
awehse@new.rr.com |
dopa responsive dystonia |
generic sinemet 10/100 |
1/2 tablet, 4 times daily |
- |
- |
- |
- |
| Diana Figueira Kamada |
3 |
Sao Paulo Brasil |
figueirakamada@hotmail.com |
segawa disease ddr |
sinemet |
1/2 4 x day |
- |
- |
- |
- |
| Kerrie Jackson |
45 |
Blue Mountains, NSW, Australia |
pkjackson@hotmail.com |
Dopa-Responsive Dystonia |
Sinemet 100/25 |
3 times a day |
|
- |
- |
- |
| test |
|
|
mark@test.com |
test |
test |
test |
- |
- |
- |
- |
| Steve Carnt |
35 |
Sydney Australia |
stevecarnt@optusnet.com.au |
Dopa-Responsive Dystonia (DRD) |
Sinemet 100/25 (generic) |
2 in morning, 2 in afternoon |
- |
- |
- |
- |
| Carrie |
22 |
DC/Metro Area |
carrieann703@yahoo.com |
Dopa-Responsive Dystonia |
Sinemet 25/100 |
1 @ morning, 1/2 @ afternoon, 1 @ evening |
- |
- |
- |
- |
| kellie |
37 |
alabama |
star4me27s@aol.com |
Parkinsons disease and cervical dystonia |
meripex |
1.5 three times days |
-stelevo |
-100mg 3times a day |
-klonipin |
-as needed for muscel contractions |
| Beverley |
42 |
Bryans Road, MD |
Beverley.Wagner@navy.mil |
DRD-Dopa Responsive Dystonia |
Sinemet (Carbidopa/Levodop 25/110 |
3 x day 8am, 2pm, 8pm |
- |
- |
- |
- |
| Barbara Bodsworth-Welch |
61 |
Toronto, Ontario, Canada |
ejwelch@sympatico.ca |
DRD |
Sinemet CR 100/25 |
6 doses per day; 4 hour intervals |
-Mirapex 1.5mg. .25mg. |
-3 doses per day; 8 hour intervals |
-Comptan 200mg. |
-4 doses per day; 8:00am,12:00,4:00;8:00pm |
| Vyas Kepler |
4 |
Belmont, California |
kkepler@comcast.net |
Dopa reponsive dystonia - (GTPCH mutation) |
Sinemet 25/100 |
1/8 pill 2x daily 1/8 pill ~every other day |
- |
- |
- |
- |
| Lynn Brown |
44 |
Florida, USA |
lrbrown62@bellsouth.net |
Dopa-Responsive Dystonia |
Sinemet 25/100 mg |
3 times a day |
-Sinemet CR 50/200 mg |
1/2 tablet - 3 times a day |
-Comtan 200 mg |
3 times a day |
| Megan Brown |
18 |
Florida, USA |
sweetrevenge418@bellsouth.net |
Dopa-Responsive Dystonia |
Sinemet 25/100 mg |
3 times a day |
-Sinemet CR 50/200 mg |
once a day in morning |
Comtan 200 mg |
3 times a day |
| Sara Mae Garman |
8 |
Denver, PA |
sgarman5@dejazzd.com |
DRD |
Parcopa 25-100mg |
I pill three times a day and an increase of 1/2 |
- |
- |
- |
- |
| Sawyer James Garman |
6 |
Denver, Pa |
sgarman5@dejazzd.com |
DRD |
Parcopa 25-100 mg |
1 pill three times a day with 1/2 pill increase |
- |
- |
- |
- |
| Ray |
61 |
Texas |
klarkkent@sbcglobal.net |
DRD |
Stalevlo 150 |
8 tabs per day |
Mirapex 1 mg. |
Every 8 hours |
Deep Brain Stimmulation Surgery |
To help the Parkinson symptoms |
| G. R. SHAH |
51 |
VADODARA, GUJARAT, INDIA |
grshah_dry@voltamptransformers.com |
pakinsonism |
carbidopa/ levadopa - 10/100 |
1/2 tab , 7 am, 12 noon, 5 pm |
pacitane- trihexyphenidyl - 2mg |
morning- noon - evening |
NIL |
- |
| Badea Luiza |
16 |
Romania |
sheepu_mic@yahoo.com |
distonia dopa responsiva |
Nakom (levodopa 250 mg/carbidopa 25 mg) |
1/2 1/2 |
Rivotril(clonazepam) |
1/2 |
- |
- |
| Dana |
30 |
Long Island, NY |
dbulzoni@optonline.net |
Segawas Dystonia |
Sinemet/Carbilevdopa (25/100) |
1 pill in AM/1 pill in PM |
- |
- |
- |
- |
| Rachel |
7 |
Ohio |
maryandpatrick@sbcglobal.net |
Unofficially DRD (no testing done) |
Generic Sinemet 25/100 |
1/2 tab morning and mid-afternoon |
- |
- |
- |
- |
| Hannah |
8 |
Indiana, USA |
haynna1@sbcglobal.net |
CP (2002) |
Sinemet 25/100 |
1/2 pill am & after school |
- |
- |
- |
- |
| Julie |
26 |
Virginia, USA |
juls5demayo@yahoo.com |
DRD |
Sinemet 25/100 CR |
1 tab twice a day |
- |
- |
- |
- |
| Brea |
41 |
California |
bondbrea@yahoo.com |
DRD |
Sinemet 25/100 |
one tablet every 4 hours |
- |
- |
- |
- |
| PJ |
9 |
Connecticut |
kdchilds2001@yahoo.com |
Dopa-responsive Dystonia, GCH1 |
Sinemet 25/100 |
1/4 pill 4 times a day- 8,12,4,8 |
- |
- |
- |
- |
| Dave Ferguson |
47 |
Santa Clara, California |
fergie_hd@yahoo.com |
Dopa Responsive Dystonia |
Carbidopa/Levidopa 25/100 |
2 tablets 2 times a day |
- |
- |
- |
- |
| Kiara |
11 |
Phoenix, AZ |
grechenforsley@cox.net |
first mild C.P now DRD but not tested |
Sinemet |
3 pills (10/100) three times a day. total of 30mg |
- |
- |
- |
- |
| Brode Hodges |
4 |
Longview ,TX |
bkhbh@att.net |
DRD |
Siniment 25/100 |
1/4 tab in morning.increasing dose weekly |
- |
- |
- |
- |
| Brode Hodges |
4 |
Longview ,TX |
bkhbh@att.net |
DRD |
Sinement 25/100 |
1/4 tab in morning.increasing dose weekly |
- |
- |
- |
- |
| Hannah |
7 |
Santa Clarita, CA |
rietzel3@sbcglobal.net |
DRD/Segawa |
Sinement 25/100 |
1/4 pill once a day, trying to find right dosage |
- |
- |
- |
- |
| Richard Wiltshire |
43 |
Brisbane, Australia |
richard.wiltshire@groundprobe.com |
Nov 2005 |
Sinemet 100/25 |
half a tablet-twice a day |
extra half-when really active |
- |
- |
- |
| Maria Louise |
21 |
olsen |
marieolsen4@hotmail.com |
segawa syndrome, dopa responsive dystoni |
madopar |
1 tablet of levedopa 2 times on a day |
- |
- |
|
1 tablet of levedopa 2 times on a day |
| Annika Johansson |
40 |
Sweden |
hasseltorpet@hotmail.com |
Segawas syndrome |
Madopark 100mg, |
100 mg x 2 times a day |
- |
- |
- |
- |
| lauren |
47 |
illinios |
pentakids@yahoo.com |
drd |
sinimet 25/100 |
3xday |
-baclofen 10mg |
-2xday |
- |
- |
| lauren |
47 |
illinios |
pentakids@yahoo.com |
drd |
sinemet 25/100 |
3xday |
-baclofen 10mg |
-2xday |
- |
- |
| Karley |
10 |
Maryland |
jtklwalls@verizon.net |
DRD |
Sinemet-generic 25/100 |
1 pill 2:00 1/2 pill 5:30 |
- |
- |
- |
- |
| C Landon |
42 |
United States |
christinelandon@hotmail.com |
Dopa-Responsive Dystonia (Segawa's) |
Sinimet 25/100 |
1 pill 4 times a day |
Motrin |
As Needed |
Excersize |
3 - 5 Miles Walking Daily |
| Micki Nemes |
48 |
Illinois |
mamimemamo@att.net |
DRD |
Sinemet generic 25/100 |
1 pill 3 times daily |
-Sinemet generic 25/250 |
1 pill at night |
-Tramadol |
2 pills at night always / also as needed for pain |
| Max |
9 |
South carolina |
seor99@yahoo.com |
DRD |
Sinemet 10/100 |
1/2 pill in morning 1/2 pill after school |
- |
- |
- |
- |
| valeriano |
34 mesi |
L'Aquila Italia |
vittorio.aprati@fastwebnet.it |
DRD (?deficit sepiapterina reduttasi) |
sinemet 100\25 lev\carb |
40mg x4 7:30-11:30-15:30-19:30 |
jumex 5mg |
1\4 x2 7:30-15:30 |
-triptoh50mg |
-1cp ore21:30 |
| Bev |
52 |
waterloo |
bevduchaine@yahoo.com |
drd |
sinemet 100/25 |
3xdaily |
- |
- |
- |
- |
| Daniel |
19 |
Malta |
anna.friesenegger@gmail.com |
D R D with sepiapterin reductase deficiency |
Sinemet 110 |
2 before breakfast, 2 at 3pm |
- |
- |
- |
- |
| Stefania |
39 |
Baceno (vb) - italy |
ste.vanini@hotmail.it |
Distonia Responsiva alla Levodopa |
Madopar da 250 |
1 pastiglia e 1/4 al giorno |
- |
- |
- |
- |
| Christina |
28 |
LONDON |
c_simpson25@hotmail.com |
dopa responsive dystonia |
Sinemet |
Half Sinemet CR 25/100mg in the morn |
-Sinemet CR |
-50/200mg at night |
- |
- |
| Louise |
50 |
Ontario |
louise@hotmail.com |
DRD |
Stalevo 25mg-200mg-100mg |
4 tablets daily |
- |
- |
- |
- |
| Al Montejano |
45 |
Los Angeles, California |
Dad2rma@msn.com |
Parkinsons |
carba-dopalevodopa |
25/100 mg every 40 minutes |
-Lorazepam |
-1/4mg |
- |
- |
| Lisa |
|
Perth WA |
berrlis@yahoo.com.au |
Dopa-responsive Dystonia |
Madopar 125 |
1 mane |
- |
- |
- |
- |
| Ed Impala |
54 |
Sammamish, Washington |
eimpala@cablespeed.com |
dopa responsive dystonia |
Sinemet Generic 25/100 |
1 pill 3 times a day. |
Baclofen 20 mg |
1 pill in AM, 1pill in PM |
- |
- |
| Tyg |
5 |
California |
c.woolley@hotmail.com |
DRD |
Sinemet 25/100mg |
1/2 am, 3/4 in afternoon, 1/2 bed |
Lodosyn 25 m |
-1 tab 3times a day w/ Sinemet |
Comtan 200mg |
1 tab 3 times a day w/ Sinemet |
