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Advanced Parkinson's and/or End stage Parkinson's


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#1 chenders

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Posted 18 April 2011 - 07:04 PM

Dear Doctor,

I have been diagnosed with advanced Parkinson's disease, but I'm concerned that my disease changes dramatically during the day--to the point where I wonder if I m exhibiting symptoms of end-stage PD. From 7 a.m until 4 p.m. my movements are almost always very slow, but I have no tremors or any other tell tale signs of my disease. My thinking is reasonably clear and I get most of my work done during this time. I can also drive a short distance to the grocery store and prepare lunch for my wife and me. I usually don't get up until around 8:30 or 9. Then I walk my dog for about a half an hour without incident at around 9. I usually take a brief rest after my walk. After a simple lunch, I do some more work--usually reading and working on a book that I'm writing or playing the piano. At this time my movements are still slow with no sign of a tremor. Around 3 p.m. I usually go for a second walk with my dog--sgain at a very slow pace.

By the end of this 25-minute walk, I can detect that something is changing: I can barely move and my legs feel very weak as though they won't support my legs. Often I have to lie down for a short time. When I get up after 5 or 10 minutes, I feel rested but I experience a dramatic transformation. My hands begin to shake violently and my body writhes and it's as if I'm dancing. I begin pacing at a very fast speed--almost to the point of running. I am very confused and often forget many things. Very often both feet will freeze as though cemented to the floor and my hands freeze into claw-like shapes. I have great difficulty talking stammering and stuttering.

It is almost impossible to eat during these periods because I feel as though I'm going to choke. I should mention that I have Gstroparesis that has resulted in the loss of around 70 pounds over the past year. The Domperadone I have been taking appears to have stableized that situation and I have even gained a couple of pounds. Until I go to bed I am in a "hyper" state, pacing quite a bit, talking very fast, sometimes getting quite confused.
I am constantly talking at full-speed ahead. My body continues to writhe as if someone/else is controlling it.

I can stop the tremors in my hands for brief periods by placing my claw-like hands on the piano and playing scales, hands separately and then together at increasing speeds. After I have played 3 or 4 pieces, my hands have calmed down and remain so for about 10 minutes. I should mention that on April 6 I gave a program at Saint Mary's College in Notre Dame, Indiana--where I taught for 25 years, retiring in 2001--on PD, how I have ussed music to temporarily stopped some of the more debilitating effects of the PD tremors. It went very well, but it was given at noon and my dramatic change didn;t occur until 4 hours later.

I apologize for making this so long,but these2 distinct phases have me worried. I am blessed that I sleep very well at night even if I have had violent movement for 6 to 7 hours and am exhausted.

Finally, I was diagnosed with PD in 2001 and until 2009 it manifested itself in slowness with little, or no, tremor. My medications are 18.5 Sinemet (6 a.m. 2.5; 8 a.m. one-half Sinemet; 9 a.m. 1.5; 11 a.m. 2; 1 p.m. 2.5; 3 p.m. 2.5; 5 p.m. 2.5; 7 p.m.1.5; 9 p.m. 1.5; 11 p.m. 1.5.. Comtan 1 at 6 a.m.; then one every 2 hours until 9 p.m...Lorazepam (0.5 twice aday... Seroquel (50 mg.) at bedtime...Zoloft (50 mg twice a day in morning)

Finally, the hours from around 4 p.m. until bed are made tolerable because I know that after a good night's sleep I will awaken tired, but in my slow mode.

One last thing: I have taken 3 cognition exams and I scored better on the 3rd exam than on nos. 1 and 2.

Thank you ever so much for anything you can do or suggest.

Clayton Henderson

#2 Dr. Okun

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Posted 22 April 2011 - 07:11 AM

Clayton,

Some of what you describe sounds like "off's,"-- slowness, tremor, freezing....and some sound like on's--racing thoughts, writhing movements.

You clearly have on-off fluctuations and in severe cases some people get them while meds are coming on and wearing off---a rare scenario called biphasic or diphasic dyskinesia. Also sometimes freezing and dystonia can occur on and sometimes off.

What I suggest is a trip to the doctor for medication adjustment and observation. Maybe even spend the day in the office and show the doc what is happening as it happens.

We often drop comtan, go to 2 hour intervals and titrate up by 1/2 sinemet tablets at each dose starting at 1 tablet every two hours. We look to see if we can find a regimen of just plain 25/100 sinemet given every 2 hours that will solve the issue. If we can't we sometimes consider deep brain stimulation or duodopa.

Finally, neuropsychs can vary a bit, and can also be influenced by mood and med state at time of testing.

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#3 michelleee

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Posted 06 June 2011 - 11:50 AM

Dear Doctor,

Can you provide more information on Duodopa or pehaps point me in the direction to find out more?

Thank you,
Michelle

#4 Dr. Okun

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Posted 06 June 2011 - 03:09 PM

I pasted two trial listings from clinical trials.gov below.

Basically it is an intestinally delivered form of dopamine; given through a feeding tube---continuously by a pump. Great for motor flutuations and dyskinesia.

Study of Efficacy, Safety and Tolerability of Levodopa-Carbidopa Intestinal Gel in Levodopa-Responsive Parkinson's Subjects
This study is currently recruiting participants.
Verified on January 2011 by Solvay Pharmaceuticals

First Received on April 15, 2008. Last Updated on January 26, 2011 History of Changes
Sponsor: Abbott Products
Collaborator: Quintiles
Information provided by: Solvay Pharmaceuticals
ClinicalTrials.gov Identifier: NCT00660387
Purpose
The primary objective of this study will be to demonstrate the superiority of levodopa - carbidopa intestinal gel over treatment with optimized oral levodopa/carbidopa during 12 weeks.The study duration is 4 months.

Condition Intervention Phase
Advanced Parkinson's Disease
Drug: levodopa-carbidopa intestinal gel active and placebo capsules
Drug: levodopa-carbidopa capsules active and placebo gel
Device: CADD-Legacy® 1400 ambulatory infusion pump
Phase III

Study Type: Interventional
Study Design: Allocation: Randomized
Endpoint Classification: Safety/Efficacy Study
Intervention Model: Parallel Assignment
Masking: Double Blind (Subject, Caregiver, Investigator, Outcomes Assessor)
Primary Purpose: Treatment
Official Title: A Randomized, Double-Blind, Double-Dummy, Efficacy, Safety and Tolerability Study of Levodopa - Carbidopa Intestinal Gel in Levodopa-Responsive Parkinson's Subjects Receiving Optimized Treatments With Parkinson Medicinal Products Who Continue to Experience Persistent Motor Fluctuations

Resource links provided by NLM:

Genetics Home Reference related topics: familial paroxysmal nonkinesigenic dyskinesia Parkinson disease Perry syndrome
MedlinePlus related topics: Parkinson's Disease
Drug Information available for: Levodopa Carbidopa
U.S. FDA Resources

Further study details as provided by Solvay Pharmaceuticals:

Primary Outcome Measures:
To evaluate a difference between levodopa-carbidopa intestinal gel and active control in the change from baseline and mean daily 'off' time (hours) at Week 12 (endpoint) [ Time Frame: 12 weeks ] [ Designated as safety issue: No ]

Secondary Outcome Measures:
To evaluate on time without troublesome dyskinesia, PDQ-39, UPDRS, caregiver burden [ Time Frame: 12 weeks ] [ Designated as safety issue: No ]

Estimated Enrollment: 62
Study Start Date: December 2009
Estimated Study Completion Date: December 2012
Estimated Primary Completion Date: December 2012 (Final data collection date for primary outcome measure)
Arms Assigned Interventions
1: Experimental
levodopa-carbidopa intestinal gel
Interventions:
Drug: levodopa-carbidopa intestinal gel active and placebo capsules
Device: CADD-Legacy® 1400 ambulatory infusion pump
Drug: levodopa-carbidopa intestinal gel active and placebo capsules
should be kept within a range of 0.5-10 ml/hour (10-200 mg levodopa/hour) and is usually 2-6 ml/hour (40-120 mg levodopa/hour);
Device: CADD-Legacy® 1400 ambulatory infusion pump
pump
2: Active Comparator
levodopa-carbidopa capsules
Intervention: Drug: levodopa-carbidopa capsules active and placebo gel
Drug: levodopa-carbidopa capsules active and placebo gel
should be kept within a range of 0.5-10 ml/hour (10-200 mg levodopa/hour) and is usually 2-6 ml/hour (40-120 mg levodopa/hour);

Eligibility

Ages Eligible for Study: 30 Years and older
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Criteria
Inclusion Criteria
- Idiopathic parkinson's disease(PD)according to UKPDS Brain Bank Criteria; levodopa-responsive and subjects demonstrate some identifiable 'on response' established by observation by investigator and demonstrate sever motor fluctuations in spite of individually optimized treatment and where therapy options are indicated
Exclusion Criteria
Diagnosis is unclear or a suspicion of other parkinsonian syndromes exists such as secondary parkinsonism;
undergone surgery for the treatment of PD;
contraindications to levodopa, subjects with any neurological deficit that may interfere with the study assessments
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00660387

Contacts
Contact: Wil Cramer Wil.cramer@abbott.com

Show 25 Study Locations
Sponsors and Collaborators
Abbott Products
Quintiles
Investigators
Study Director: Wil Cramer Abbott Products
More Information

No publications provided

ClinicalTrials.gov Identifier: NCT00660387 History of Changes
Other Study ID Numbers: S187.3.002, 2007-003814-32
Study First Received: April 15, 2008
Last Updated: January 26, 2011
Health Authority: United States: Food and Drug Administration; New Zealand: Ministry of Health

Keywords provided by Solvay Pharmaceuticals:
efficacy; Parkinson's Disease; Severe Motor Fluctuations; dyskinesia; levodopa; carbidopa; levodopa/carbidopa suspension
Duodopa
levodopa-carbidopa
intestinal gel

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases
Carbidopa
Levodopa
Antiparkinson Agents
Anti-Dyskinesia Agents
Central Nervous System Agents
Therapeutic Uses
Pharmacologic Actions
Enzyme Inhibitors
Molecular Mechanisms of Pharmacological Action
Dopamine Agents
Neurotransmitter Agents
Physiological Effects of Drugs

ClinicalTrials.gov processed this record on June 05, 2011

Clinical and Economic Impact of Duodopa: Long-term Effectiveness Study in Advanced Parkinson's Disease Patients
This study is currently recruiting participants.
Verified on February 2011 by Poitiers University Hospital

First Received on February 7, 2011. Last Updated on February 8, 2011 History of Changes
Sponsor: Poitiers University Hospital
Information provided by: Poitiers University Hospital
ClinicalTrials.gov Identifier: NCT01291537
Purpose
The goal of this multicentric prospective randomized controlled clinical and economic study is to investigate the effectiveness and cost-utility of long-term continuous intraduodenal infusion of levodopa ( DUODOPA), compared to best medical treatment, on advanced and severe form of Parkinson's disease.

Condition Intervention Phase
Parkinson's Disease
Drug: Duodopa
Drug: best médical treatment
Phase II

Study Type: Interventional
Study Design: Allocation: Randomized
Endpoint Classification: Safety/Efficacy Study
Intervention Model: Parallel Assignment
Masking: Open Label
Primary Purpose: Treatment

Resource links provided by NLM:

Genetics Home Reference related topics: familial paroxysmal nonkinesigenic dyskinesia Parkinson disease Perry syndrome
MedlinePlus related topics: Parkinson's Disease
U.S. FDA Resources

Further study details as provided by Poitiers University Hospital:

Estimated Enrollment: 60
Arms Assigned Interventions
Duodopa: Experimental
Intervention: Drug: Duodopa
Drug: Duodopa
Best medical treatment: Active Comparator
Intervention: Drug: best médical treatment
Drug: best médical treatment

Eligibility

Ages Eligible for Study: 18 Years to 80 Years
Genders Eligible for Study: Both
Accepts Healthy Volunteers: No
Criteria
Inclusion criteria :
Age> 18 years and ≤ 80 years
Akineto-hypertonic and/or tremor forms of Parkinson's disease as defined by the criteria of the French National Consensus conference for Parkinson's disease (March 2000)
Absence of parkinsonism other than a Parkinson's disease, including absence of one or more of the following signs: autonomic syndrome, hallucinations, pyramidal signs, early postural instability, early cognitive impairment (including apraxia or severe frontal lobe syndrome) (Consensus Conference, March 2000)
Severe and advanced forms of Parkinson's disease with sensitivity to L-dopa (≥ 40%)
No contraindication to Duodopa®: hypersensitivity to levodopa and carbidopa, or any of the excipients, angle-closure glaucoma, kidney and liver failures, severe heart failure, severe cardiac arrhythmia, acute stroke, pheochromocytoma, hyperthyroidism, Cushing syndrome, association with non-selective MAOIs and selective MAOIs-A (stop at least 2 weeks before initiation of Duodopa®)
Fluctuations in motor performance (with OFF time ≥ 2 hours per day) and/or dyskinesia induced by L-DOPA altering significantly the activities of daily life in spite of an optimized treatment
Hoehn and Yahr score < 4 in best ON
Ability to complete a diary of self-evaluation (with the help of another person if necessary)
MMSE ≥ 24/30
No evolutive psychosis or history of severe psychosis requiring hospitalization
No digestive disease or ENT evolutionary
No concomitant treatment by continuous infusion of apomorphine
No concomitant treatment by deep brain stimulation
No serious somatic disease likely to interfere with a good participation to the study, contraindication for gastrostomy
Menopause proven or woman of childbearing potential with an effective contraception (hormonal / mechanical: oral, injectable, transdermal, implantable, intrauterine device, or surgery: ligation of the fallopian tubes, hysterectomy, total ovariectomy)
Exclusion Criteria:
Age <18 and> 80 years
No signature of the informed consent form
Patient with no social insurance or who cannot benefit it through a third person in accordance with the French law on biomedical research
Population under enhanced protection (i.e minors), pregnant women, breast-feeding women, persons deprived of their liberty by a judicial or administrative decision, people in health and social service, adults under legal protection, and finally patients in emergency situations.
Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT01291537

Contacts
Contact: Jean-Luc HOUETO, PhD, MD 05.49.44.44.46 j.l.houeto@chu-poitiers.fr

Locations
France
CH d'Aix en Provence Not yet recruiting
Aix en Provence, France, 13616
Principal Investigator: VIALLET François, MD
Chu Amiens Not yet recruiting
Amiens, France
Principal Investigator: Pierre KRYSTOWIAK, MD
Chu Clermont-Ferrand Not yet recruiting
Clermont-ferrand, France, 63003
Principal Investigator: Frank DURIF, MD
Hôpital Henri Mondor Not yet recruiting
Creteil, France, 94010
Principal Investigator: Pierre CESARO, MD
Chu Lille Not yet recruiting
Lille, France, 59037
Principal Investigator: DEFEBVRE Luc, MD
Chu de Poitiers Recruiting
Poitiers, France, 86021
Principal Investigator: Jean-Luc HOUETO, MD
Chu Saint Etienne Recruiting
Saint Etienne, France, 42055
Principal Investigator: Aurelia POUJOIS, MD
Chu Bordeaux Not yet recruiting
Talence, France, 33404
Principal Investigator: François TISON, MD
Sponsors and Collaborators
Poitiers University Hospital
More Information

No publications provided

Responsible Party: CHU de POITIERS ( Pr Jean-Luc HOUETO )
ClinicalTrials.gov Identifier: NCT01291537 History of Changes
Other Study ID Numbers: CECILE 2010-020769-25
Study First Received: February 7, 2011
Last Updated: February 8, 2011
Health Authority: France: Afssaps - French Health Products Safety Agency

Keywords provided by Poitiers University Hospital:
Advanced
Severe form

Additional relevant MeSH terms:
Parkinson Disease
Parkinsonian Disorders
Basal Ganglia Diseases
Brain Diseases
Central Nervous System Diseases
Nervous System Diseases
Movement Disorders
Neurodegenerative Diseases

ClinicalTrials.gov processed this record on June 05, 2011

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips


#5 michelleee

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Posted 27 February 2012 - 02:06 PM

Thank you for the information Doctor.
I would think this will help many Parkinson's patients.

Best,
Michelle

#6 Dr. Okun

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Posted 03 March 2012 - 04:55 PM

Thank you Michelle for writing in to the forum!

Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips





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