Hello everyone, just hoping for any advice or words of wisdom about Apomorphine pumps.
My husband saw his Parkinson's nurse yesterday and due to his rapid deterioration in condition, she has urged him to consider having an Apomorphine pump. He is 55 years old and been diagnosed for 10 years now.
Can anyone let us know how it affects them and their daily life, good or bad? Side effects? Ease of use? My husband currently takes a mixture of Requip, Madopar, Stalevo and Trihexyphendyl daily - can having the pump reduce the oral drug intake?
Lots of questions to start with but would be grateful for any input. He is erring towards asking his consultant for a referral but would like a little more info before pressing the 'go' button.
Thank you for reading.
fed would be the one to talk to about the pump he as one fitted,as your thought of going down the route of deep brain stimulation i have benefited alot from it really well and halved my meds ,you can try private message to fed that way it will pop upin his e-mail.
I use the Apo-Go apomorphine pump and started about 3 years ago. I had to go into hospital for a week to learn how to use it and it took quite some time to get used to it. I was always fussing about this or that, saying the needle wasn't in properly and things like that.
About a year ago, suddenly everything fell into place and often forget that it's there. I used to get very uptight if the alarm went off on the pump but the calmer I stay the easier it is to sort out. You phone the manufacturers and they are really great, give you advice and stay with you, on the phone, until you are happy that everything is OK.
The addition of the ApoGo to my drugs regime kept me working for another 2 years. If I forget to actually Turn the pump on after I've set it all up, at about 10.am. I start going "off", realise what's happened and turn the pump on. I don't do that too often ".
The downside of wearing this is that when I go on holiday, I don't go into the swimming pool very much because I can't be bothered to keep changing the needle.
Hope this is helpful but always happy to answer any questions about my experiences.
All the best
Thank you Gus. We have talked with my husbands consultant about DBS but because he has MS as well they are concerned that it could cause some damage. I will try fed.
Thank you Casie, this is very helpful. We were wondering how it worked with swimming!
just had my dbs battery changed at bristol southead hospital,seen this lady really bad shaking of arm & head my wife asked if she had pd,no she said ms she was in for dbs they had to map out were to put wires bit more complicated but can be done just thought i would pass this info on.best regards gus
Hi Gus how are you feeling after having battery changed ? How long will this one last ? Where you in long ?
bit sore battery same as last time about 3yrs but when this one runs out will have option to go for 25yr rechargeable battery different make its the vercise unit made by Boston scientific as my one is made by medtronics the original and would expect by 3yrs they will have made rechargeable you know the saying stick with who you know. As for how long I was in bit of mess really got told I was day patient and when I arrived at 7:30am told me saying in overnight so said can I be day then said yes as my wife not booked into hotel for another night so went down surgery 9 am back out to recovery room 11:30am recalibrate battery 12ish bite to eat cup of tea up and on bus to train station by 1pm all after a general home by 5:30pm .walking a little bit better but hoping will improve more aswell after back injections on 8th July. You ok hows things with you. gus
Hi I'm asking on behalf of my husband.He has got the pump had one go with it but never worked as to low a dose,had another try with higher dose still not strong enough has any one got this using and if so do you still take eg your sinnamet tablets.does it help in the end
My dosage is. From 7.am to 10pm .98 and
from 10pm. to 7am .60.
I also take Madopar 100 dissolvable tabs x. 4 between 6am and 7.30am
Stavelo 100mg x 5 during the day
Madopar 100mg twice a day. Madopar 65.5mg x 3 a day
Amantadine 3 per day. Rasageline 1 mg tab per day
and several other. I do for different reasons!
If for any reason I Forget to turn on my pump I suffer greatly so I try not to do that .
Hope this is helpful with very best wishes
i can't swim so it only affects me on holiday. I paddle in the water when I'm too hot and,at home, we have a paddling pool for our grandchildren (supposedly),
If you are a good swimmer and you really want to swim I would imagine that you would have to time yourself but the best thing you can do is take the advice of a professional such as your PD Specialist.
Sorry not to be more helpful.
With best wishes
Thanks for this info much appreciated Margaret on behalf of Ken xxx