I was dx with young onset PD in 2003 aged 46. I'm now 62 and have kept on top of it by gradually upping the madopar . In the last few months madopar's effectiveness has dropped right off and my consultant says there is ni more room to tweak my medication or increase the madopar.
To my distress I am now 'full' on PD – with all the ‘usual, motor symptoms, tremoring, shuffling, freezing, falling flat on my face - plus every non-motor symptom going. You name it, I ‘ve got it - apart from cognitive decline (fingers crossed) and micrographia. I have only a couple of short windows a day of about an hour each when I am able to function in any way at all. At other times I am unable to move - the most frighten effecting is that sometimes I an unable to turn over in, or get out, of bed - i feel like a beetle on its back.
I live alone without family support and I am beginning to feel that life in this state is not worth living;
My consultant had suggested the apo-pump. I had assumed this would be the same sort of design as the insulin pump a diabetic friend uses. I was a bit startled therefore to read in a post on this site that the pump itself holds a pint of fluid! This, together with other posts that refer to high infection rates and nodules has rather alarmed me. I would be so grateful to hear of other people’s experience with the apo -pump.
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pen1
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I personally have no experience with it, but my wife has a close friend whose husband is a medical doctor with PD and he's had it for a year now and says it's wonderful, that it has saved his life.
I think we quite often hear the negative results of things as these are most notable. At our local PD support group a gal spoke who said it was wonderful for her. Don’t lose heart! Also if it doesn’t work for you it is easily reversed. Is DBS an option?
I take between 1,300 - 1,500 mg madopar per day . I start at 7am with 100mg then at 8.30am 50mg - then through ut the day every 90 minutes alternating between 100mg and 50 mg. i take 100 mg modified release at midnght. recently I have also started freezinig and add aup to 3 x 50 mg madopar dispersible per day. The result is very erratic; sometines it has no effect at and other times I suddenly find I can move perfectly normally for and hour of so - at other times I an a juddering wreck.
I used to get dyskenitic when 'on' and also would get drenched in sweat as I wore off or if did anything 'active' - even as simple as washing up. This has now stopped - i think both were caused by the peak dose in in periods - but now it never gets that high.
My consultant has aarranged for me to see the Apokyn nurse with a view to sslf injecction f additional apo-morphine.
He then said to me - but clearly playing up to the medical students he had with him -
" I've killed fewer people with apo-morphine than with duo-dopa." He was a young very confident chap and seemed t think this was a cleveer remark. ,As retired pychologist I felt like swinging into professional mode and asking the group for an appraisal of his communication skills. I'm not one for stereotyping but I find it difficult to imagine a female consultant thinking it an accpetable remark.
I am taking slightly less Madopar per day than yourself. It has been suggested that I go to apo-morphine injections. A friend in a similar situation as myself has just last week started injecting so I am going to wait and see his degree of success. In the meantime I am going to increase my daily madopar to 1500 per day.
Hi I hawe. Had PD for10 years now Take meds ever I -and1/2. hr That gives me about 4hr of good movemement. whicvh is not much am grateful even for that much.Its funny. It’s funny haw you take for granted gratrfulfborlsimple movemet like walking. And has big <of deal it is now. Well enough for
b lametyng I am at the my disease and my Neil sugesred to me the Do dopa pump.I am hesitant , because my Nero saythat there is lots. Of pain,post the surgery and ihewe badge had enough of pain, from PD and DBS.Had 7 brain surgeries and multiple infections chichi reauired multiple wash outs and hospitalizations.Whitch not dry plesent. Being a retired nurse, being on the other site of stethoscope ,is very strange.All of a sudden I am the patient Oh I am getting of the subject. My husband thinks it’s good solution for me.He says ,itwill give me more years o eternity life and just mayne the scientists will find better treatments. one must just hope.Well I am seriouslly conciderin that.I spoce to a lady who had it done. She sayd the surgery lasted ooonly 45 min and after short recovery she vent home. Her husband says that she had a hard time prior sh was freezing and faliing all the tim, now she walks well and goes every where.Basicaly they are very happy that se had,it done.I am still thinking about that.But I am cloujserto disiciion.Thank you for postyng.it was not my intention ,but it help me .
Thank you for the advice re moving in bed. I had seen the ladder on a disabled aids site but was a bi wary as bed gripping rail I bought has not been helpful and i didnt want to end up with another useless piece of equipment! i find if i try to push myself up the bed my feet slip on my polyester sheets and I can't get any purchase so slip further and further down the bed. Is this a problem with satin sheets?
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