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Duodopa

Duodopa

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12 replies to this topic

#1 michelleee

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Posted 03 January 2013 - 11:16 AM

Dear Dr.
I'm very excited to read about the Duodopa option out on the horizon!!!
But, I'm very confused as to the procedure availabilty in the US.

Can you provide information on when this may become available here in US?

We are located in San Francisco (near Stanford, UCSF, and the Parkinson's instute located in Sunnyvale)


Thank you,
Michelle

#2 Dr. Okun

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Posted 04 January 2013 - 08:07 AM

Thanks for the question. Studies have had some nice data in the USA but it is not FDA approved at the moment. You will need to look at a website like clinical trials.gov to see where the trials are ongoing. There is a trial for example here at UF. It has been available in Europe for many years.
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 04 January 2013 - 11:28 AM

Thank You for your reply Dr. Okun.
Sounds like the procedure is a way off yet.

Happy New Year!
Michelle

#4 Dr. Okun

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Posted 04 January 2013 - 05:01 PM

It is being performed in the US under study and probably not far off, as the main study has been completed.
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 04 January 2013 - 07:12 PM

I see, so the main study has been completed. I wonder how far in the future we're talking?

I'm just a bit anxious to get so help for my husband!
Thanks again,
Michelle

#6 Dr. Okun

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Posted 05 January 2013 - 01:27 PM

I do not have the crystal ball on that one, but will post as soon as I know something!
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

#7 michelleee

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Posted 05 January 2013 - 02:47 PM

Try Tea leaves--works much better then any crystal ball I've ever used! hehehe!
Yes, It's anyone's guess at this point.

Thanks again for all your help and I do look forward to hearing from you on this topic!!
Best regards,
Michelle

#8 Beau's Mom

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Posted 06 January 2013 - 03:06 PM

My MDS, Dr. Alida Griffith at the Booth-Gardner Parkinson Center of Excellence in Kirkland, WA will soon be starting Phase II of the Duodopa pump trials. She can be reached at 425-899-3123 Her nurse is Amy; the scheduler's name is Tina.

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#9 Dr. Okun

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Posted 06 January 2013 - 07:46 PM

Clinicaltrials.gov will have all the information posted. I believe Ramon Rodriguez at University of Florida will also be doing it.
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

#10 michelleee

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Posted 07 January 2013 - 12:42 PM

Dear Dianne,
Small world story: My husband's first Dr. upon first diagnosis of Parkinson's disease way back in 2002 just happens to be Dr. Alida Griffith at the same location you mentioned!! My husband has since moved from Washington to California closer to the family. We both really apprecate your reply about duodopa. Are you involved in the trial. This new procedure, as it's turning out, may be the only hope for many Parkinson's sufferers!
Best wishes,
Michelle and Michael Bechtol

#11 michelleee

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Posted 07 January 2013 - 12:43 PM

Dear Dr. Okun,

Wonderful information!
Thank you for all you do to help those with PD!!
Michelle and Michael

#12 Beau's Mom

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Posted 10 January 2013 - 02:52 PM

No, I am not involved in the trial due to increased depression, but may yet qualify.

I am not a human being trying to have a spiritual experience; I am a spiritual being having a (sometimes difficult) human experience.

 

First symptoms: right-hand tremor, constipation and restless arms 1978 (age 25). Depression and anxiety (non-motor symptoms) began in 1989 and worsened through the years. Last inpatient episode June 2013.

Diagnosed December, 2010 by a regular neurologist (age 57). After negative reactions to Requip, Mirapex and selegiline began Sinemet 25/100 3x/day. First MDS visit in Houston in February of 2011 was inconclusive. Second MDS visit at Baylor Fort Worth in May/June 2011 diagnosis changed to Parkinsonism, Sinemet stopped. Third MDS visit in August 2011 in WA State: received a confirmed diagnosis of idiopathic PD which had started on the right side and had now crossed to the left side as well. Restarted on Sinemet 25/100 4x/day. A short trial of Amantadine caused audio hallucinations in September 2011.

 

Current medications at age 62: Sinemet 25/100 ODT every 2.5 hours while awake (7/day). One Sinemet 25/100 CR between midnight and 4 AM. Trazodone 200 mg at bedtime, Fluvoxamine 300 mg at bedtime. Clonazepam 0.5 mg morning and afternoon, 1 mg at bedtime. Vit D3 2x/day, Calcium Carbonate Susp. 5 cc daily, Baclofen 10 mg 3x/day, Flonase two sprays 2x/day, Calcitonin-Salmon nasal spray once daily (for osteoporosis). Gel eye drops as needed throughout the day, Restasis Eye drops 2x/day, Nighttime eye ointment at bedtime. 02 2L per nasal cannula while asleep. Walker, electric wheelchair, moist and soft or pureed foods and 115 caregiver hours/month keep me sane.

 

All of the above subject to change based on progression, stress level, and dyskinesia. Whew! I'm glad I finally wrote that all out.


#13 michelleee

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Posted 12 January 2013 - 04:42 PM

Hope you get some help with depression. That's a very difficult aspect of Parkinsons.




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