Duodopa advice


#1

Hi,
Due to other medications no longer working my mother has been advised to consider Duodopa as a treatment.
Can anyone give any advice, both on the positive and negative sides of this medication please.
My mother is currently trying to decide whether to try Duodopa so would be really grateful for any advice?


#2

Hi,
Due to other medications no longer working my mother has been advised to consider Duodopa as a treatment.
Can anyone give any advice, both on the positive and negative sides of this medication please.
My mother is currently trying to decide whether to try Duodopa so would be really grateful for any advice?
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#3

Hi Ange01

I saw my PD specialist and PD nurse last Tuesday. They suggested I could try Duodopa as my Madopar intake at 1000 mg Day is becoming less effective. I turned it down until I’ve looked into it as it is invasive and he said it doesn’t work for everyone.

I was diagnosed with PD seven years ago and I’m 80 next month so reluctant to have it done.
However things are getting worse symptom wise particularly Dyskinesia, Akynesia, and Distonia.
I’m starting to get bouts of doom and gloom, which is not like me.

Could I suggest you go to Information and Support, and key in duodopa in the little space top right. There is lots reading and info.

Hope this is helpful,

Jules77


#4

Positive points are
Good day I can do anything from wallpapering to laying a patio or write poetry or look normal see upload selfie

On a bad day refer to selfie I took on a bad day of me doing my paperwork

image|375x500


#5

Hi,
Thank you so much for your reply. I will have at look at the information you’ve suggested.
I hope so much that you find the help you need to so that you can begin to feel better within yourself.
Take care
Kind rgds… Andrea


#6

Thank you blueeyes 47.
Do the good days outweigh the bad days and if so do you know what causes you to have bad days?
Thanks… Andrea


#7

Yes good days out number the bad days.

Putting a figure or percentage on it is somewhat difficult. What I will say is duadopa the meditation is a class act and can have life changing positive effect on your physical and mental health. However the performance and reliability of duadopa is only as good as the equipment, support and environmental platform it’s working off.

For example the pump is 1980’s technology, the pump holder and vests they supply are not subject to any sort of QA control and I havant seen a duadopa nurse since September 2016, or indeed had any sort of support at all these past 18 months.

Duadopa does give you hope of a future and a second chance at using levadopa with very little dyskinesia. As the man in the Cuprinol advert use to say “Cuprinol does what it says on the tin”, well duadopa can boost the same claim on some days but not on others. The point I’m making is Cuprinol is a DIY product and subject to purchasing a brush it’s gonna do what it says on that tin every time. That’s the issue because duadopa is a complex treatment for a complex illness that requires 2018 technology and robust support channels to get the best results for Parkinson’s patients.

At present duadopa is being sold and managed as a DIY product, get that sorted and you take the performance of duadopa to a consistently higher and safer level… win win


#8

Hi Angela–I have never heard of duo dopa,but l have used apomorphine to good effect.
More info if you need it.
regards shook