New to this


#1
I Have had Parkinson for 20 years, been on all the different tablets and patches . At the moment on Sinemet C.R. Pramipexole. Domperidome. and APO-GO Pump 24 hrs [ for the last 7 years, ] if i didn,t have the pump i would not be able to move at all so it does help, although terrible trouble with nodules. and stomach cramps,and still off periods.but look on the bright side and do as much as i can. Been ask to think about brain surgery not sure about that. looked at the Duadopa Pump, anyone had the same proplems.

#2
Welcome Malky. Only a beginner myself at 4 years. Heard a lot of good things about DBS (if that is what you are referring to) but I'll let those qualified speak about their experiences. I think it particularly good for newly diagnosed to see someone still active 20 years later (hope that doesnt make you feel like an exhibit). Hadnt heard of nodules - dont sound good. Apomorhpine sounds very effective but heavy going.
cheers

#3
Hi Malky and welcome to the forum. I've been dx for 12 years and I was put on the Apo pen about 4 months ago in conjunction with stalevo 150x5 per day and a host of other meds for thyroid, blood pressure, dyskinesia and dystonia ect ect.

Can I ask you how long it was before you began to notice nodules? I have been warned that they can be a problem by my PD nurse, however it appears that they can be treated, although I's not sure how.

I don't know how long the Apo pens can be used for and that concerns me a bit because like you without them I can't do very much. I often wonder what is next after the pens, because as you know all of the drugs only work for a while and due to past experiences I am unable to tolerate a high dose of DA's.



glenchass

#4
Hi Glechass I was put onto the APO-GO Pump first ,and only use the pen as a boost when i go off, which i use more often now, upto 3 times a day on number 7 so i suppose when your ready your next step will be the pump. As far as noudles are concerned i don,t get them with the pen only the pump, and was only advise to massage the area, you can use a small massager , not very expensive to buy. Hope this is of some help.

#5
Malky, welcome.
It seems as if all pd sufferers are waiting for the next thing. One helluva way to live.

There would seem to be no miracle, thank **** for this forum.

#6
Hello Malky and welcome,

My husband was on a apo pump for fifteen years,he also had a pallidotomy after 11years of pd for the dyskinsia which worked well, he has had pd for thirty years and has been as active as he can be, even now he is in a nursing home he goes to college two days a week and goes fishing when the weather is fine.We also started a branch and were involved for sixteen years with that so that kept us busy. One of the things we arranged was a short mat bowls group which was very popular and helped keep people mobile. There are also places where disabled people can go sailing whic gave my husband alot of pleasure until that became too much.
For the nodules he managed to get a ultra sound machine from the physio and we used to massage them which helped and as you say use a cream to massage the area as soon as the needle has been removed. I hope that you manage to keep fairly well and active.
My sister has just phoned me to tell me about an organisation which provides respite care if anyone is interested the web page is www.vitalise.org.uk.
best wishes
vivian