In 7 years of PD, never heard of Apokinin pump!

[lydko]

Hi, am living in France, have been treated for PD for nearly 7 years (am 48 y. old) with Requip (2X 8) and Modopar 125 (4 pills a day). This is not really effective so when I heard that the Apokinin pump could be efficient (TV news tonight) according to the person who gave the testimony, I began searching on the web for information. I'm widenning my search to european countrie just to be able to assess the approach of FRANCE versus the UK for example.

My point is how is it that my Doctor never refers to that sort of pump? is there any danger? Any age limit for it? what could be the negative effects of having one?

Thanks for your informations. L

[maryalice]

Someone else asked a question about the Apokinon This was one of the answers from someone from France:

Auntiekath 7 Mar 2013Report

Hi I am living in France and have had very good treatment for my Parkinson's. I have had Parkinson's for 12yrs for the first 9 yrs it was controlled with Requip until I reached the maximum dose. Then after that it was down hill for a while as I started taking levadopa and for me it was not compatible with the Requip I tried various other drugs with it but to no avail.I am now on the Apokinon 24 hrs a day changed twice a day. It is for the tremblement that it is very good for me and it seems to stop me blocking up to much. Last year I was admitted to Hospital at Toulouse University Hospital for my meds to be sorted out as I had far to much trembles and as a result I am just on the Apokinon without anything else. If you do decdie to try it go to somebody that knows about the drug and the amount you are given by debit per hour. So far It is good for me.

Your spelling of the drug is different than in this post. I believe she's talking about a shot or a patch. Maybe you could message her and find out more. I hope this helps.

[lydko in reply to maryalice]

Good morning Maryalice and thanks for your answer. Will contact this person.

In fact, just read that only 1% of peope suffering benefit from this treatment by Apokinon pump because Health Orgnisations want to know more about its long-term effects, something like that. Yet, it is authorized and it seems to work on a few persons, so why not!

[maryalice in reply to lydko]

You are very welcome. Someone posted another question today about a

apomorphine pump. There is also a Neupro patch and some kind of shots you can take,which I don't remember the name of right now. I'm a little confused with all these different spellings.

Good luck. Let me know if it works for you

[rch21]

I do not know about this Apokinin pump, but have you considered DBS?

[lotl]

Hello Lydko,

I live in England and have had an apomorphine pump for nearly four years. Previously I had been on mirapexin, Requip, Madopar, Stalevo and various other drugs. Apomorphine gave me my life back and I was able to continue working. Levadopa causes me to have very painful dystonia and frequent unpredictable off periods, but I do not have any problematic side effects from apomorphine.

Apomorphine is an expensive treatment and in the UK it tends to be a Postcode lottery on treatment. If you have the opportunity to try it I hope it works well for you.

[lydko]

Hello all and thanks for your answers. Back from my Qi Gong and Tai Chi session and happy about your message.

R., sorry but don't know what's DBS? will try to find info.

L. thanks too. Am impressed by the high number of medicine you had before Apomorphine. Well, Apokinon-Apomorphine?? Am like M., not familiar with all the PD words.

So I have to read more about and in English!

Last Thursday, April 11, there was a conference in Paris about PD, and more part. there was on the agenda a point dealing with Tai Chi as good activity for those suffering from this disease! so waiting for reading something following that conference!

Well, some internet search to do before sleeping.

By for now,

[maryalice in reply to lydko]

If you Google "FightingParkinsonsDrugFree.com " or Recipe for Recovery 'Howard Shifke there's a lot of information.

Hope this helps.

[lydko]

Hi Maryalice, thanks for your information. In fact, so far I saw my neurologist and asked him about this apokinon pump. "It's not for you" I quote, he said it is proposed only to person whose life is really handicaped by the disease. So I can forget it for the moment and enjoy my life as it is.

Bye

[maryalice in reply to lydko]

That sounds like a god idea. Blessings