HI - I am to get the APO G0 pump and was wondering if anyone has any experiences (good or bad) that they would like to share. Also I enjoy the odd glass of wine - can I still when using the pump? Thanks
Hi SBNS (Great username)
My o/h was trialled and started the pump a year ago intially he had a great improvement with his motor skills and general health, it is a commitment to use as it is not everyones idea of having to put needles in every day but generally he can always do this for himself with little help from me.
The negative side for him is that he is obviously very susceptable with using DA family of drugs and despite the thought that as a continual infusion it may alleviate the issues it has not.
He very soon had cognitive issues and OCD/ICD behaviours , the difficulty has been that accoridng to his Neuro he has run out of options. Although physically it has not been without issues it is a vast imptovement on the awful hours of dyskenesia he was suffering. He is not a large man but prior to the pump he lost 3 stone due to dyskenesia but has now put it back on.
We feel very very lucky but he has been awrded funding for the Duadopa pump which is not a DA but loads more money than Apomorphine hopefully he will go into hospital the end of this month.
Hope above helps, good and bad experiences but definately worth the effort o/h has always remained postive despite being needle phobic he feels the benefits definately outweigh the burden.
wishing you lots of luck hope it works for you
bubble x
My o/h was trialled and started the pump a year ago intially he had a great improvement with his motor skills and general health, it is a commitment to use as it is not everyones idea of having to put needles in every day but generally he can always do this for himself with little help from me.
The negative side for him is that he is obviously very susceptable with using DA family of drugs and despite the thought that as a continual infusion it may alleviate the issues it has not.
He very soon had cognitive issues and OCD/ICD behaviours , the difficulty has been that accoridng to his Neuro he has run out of options. Although physically it has not been without issues it is a vast imptovement on the awful hours of dyskenesia he was suffering. He is not a large man but prior to the pump he lost 3 stone due to dyskenesia but has now put it back on.
We feel very very lucky but he has been awrded funding for the Duadopa pump which is not a DA but loads more money than Apomorphine hopefully he will go into hospital the end of this month.
Hope above helps, good and bad experiences but definately worth the effort o/h has always remained postive despite being needle phobic he feels the benefits definately outweigh the burden.
wishing you lots of luck hope it works for you
bubble x
Oh sorry forgot to say o/h does not drink lots but has continued to have a beer most nights so no warnings not to drink x and sorry for previous spelling mistakes on last post forgot to spell check .
Many thanks - I too have lost a lot of weight - its like running a marathon every day! Hopefully this will work for me & I can enjoy my wine without throwing it all round the place!!
Hello Shaken but not strirred,
My husband had about 15 years on the Apo pump firstly just days then 24 hour, it worked very well to smooth out the on/offs so I would say give it a go, be careful not to spill any on your clothes as it stains grey/black as does madopar dispersal if spilt or dribbled, we used Triple AAA from any supermarket on the carpets and it usually came off but not on clothes or paint.
good luck
vivian
My husband had about 15 years on the Apo pump firstly just days then 24 hour, it worked very well to smooth out the on/offs so I would say give it a go, be careful not to spill any on your clothes as it stains grey/black as does madopar dispersal if spilt or dribbled, we used Triple AAA from any supermarket on the carpets and it usually came off but not on clothes or paint.
good luck
vivian
When in use I've found that the best place to keep the pump is in my breast pocket. I'm on Apo-Go 24 hours a day running at 7mg/hr. This is a pretty high dose but even so I am finding I need to use the "boost" button several times a day. Do remember that it is a Dopamine Agonist and that even low doses can lead to a wide range of nasty effects.
I have just read that apomorphine is also used for the treatment of erectile disfunction. I have no problems in this area but am now concerned that i will end up with a permanent erection. Any men (or ladies) know if this is likely??
Have just had DBS...phew
apomorphine 24 7. It's really quite hard
Hi there Johnny,
How did the DBS go?
I'm going to see my consultant on Wednesday and i know she will bring this up again.
the thought of it scares me for several reasons:
1. I don't do pain
2. i'm worried about the stress it will put on my family
3. most of all i'm scared that it wont work or will even leave me worse than i am now!!
its also complicated a bit by the fact that i live in northern ireland and it can't be done here.
Any advice or comments greatly appreciated
sbns