OK just checked her online records, doc consultation is Friday. He has her down for roprinorole, should i insist she is given ropinorole xl?
1mg three times a day, blotto after 30 minutes. Mmm we shall see.
Aye aye exile
Just you do whatever feels right but with PD the Meds can take a fair while to have any affect ask PD nurse or neuro we on here don't have all the answers as we are all different good luck
Ian
Hi EXILE = I'm on RopiniroleI XL slow release, and found it is the best one to be on than the basic Ropinirole, but you must ask about the of OCD, it can be really dreadful for some people, luckily I've been ok on this for medication six years now
Take care and all the best - Sheila
Thanks Sheila, I did mention the XL to the doc and he said he would like to find out the strength that the OH is best on with the standard Rop then try XL.
I have talked about the OCD with the wife, also many of her colleagues and friends are now aware of the possibilities and they have said they will keep a close eye on her and let me know if anything untoward happens, suppose that is all I can do and hope that she is lucky and does not get that particular problem.
No bad side effects yet, slight nausea and sleepiness for the first day but now not bothering her. Also she thinks there is some very minor improvement in comfort at night, maybe placebo but fingers crossed.
Hello Exile(well you are not exiled now), please dont get too downhearted there are lots of medicines to help your Lady live a norma l life ,I was diagnosed in 99 but had symptoms for at least 7yrs prior ,and though you might take a while to find the best combo for the best effect "it took me 5 or 6 yrs but ended up with DuoDopa which is a small ,,but weighty,, pump ,it instals a precise dose of Ddopa, that is a DopamineCarbidopa jell direct to my small intestine it is still effective though I am definitely becoming tolerant as the periods between shutdowns are shorter,which fits with the estimate of 5 to 7 yrs of max effect then tailing off?? dont be put off by this description and that includes anyone reading this as its well worth it for the much improved life it gives' IF YOUwish to chat my email is available
My very best wishes to you both
FED
Hi Exile - if your OH's sickness gets any worse get in touch with GP because that is one of the side effects of Ropinirole, I started on 2mg per day increasing slowly over the six years now on 18mg per day.
Hope everything goes well, and glad you asked every one to keep an eye on OH behaviour.
Sheila
Doc upped drugs to 2mg 3 times a day yesterday. All fine last night but today sent home from work, extreme nausea and numbness in arms. Refusing to stay on 2mg now, she doesnt like it and is calling the doc Monday. One step forward and two back. Ho Hum
2mg stopped all tremors though!
Dear Exile,
Support and love your wife more than ever!
God Bless you both,
Paul
Cheers Paul, I'm pooped from 3 hours olf ironing 
Latest advice from doc, 1mg twice a day, 2 mg once a day. Try this for a week or so and then up it to 2mg twice a day etc. Sounds feasible and fingers crossed it works.
Got another consultant appointment come through the post for two weeks today, unexpected as was booked for next February, anyone have a clue what this could be about?, can only think they want to check that meds are working?
As an aside, I am totally knackered, big week at work this week 55 hours. Now thats not uncommon and normally wouldnt bother me but having to do everything at home aswell is bloody hard work. Ho hum nearly the weekend :-)
Update
Now on 3mg 3 times a day, having some effect but not as good as hoped, assume will require more.
Having difficulty getting Ropinerole, pharmacy keeps running out and one prescription now only lasts 9 days.
Consultant appointment mid February.
Awaiting DVLA decision about licence.
Consultant yesterday, going onto XL and increasing to a max of 16mg per day if needed. Then will add minimal levodopa if all going well in 3 months. Assume this is quite normal?
Hi Exile - had PD for seven years, on 18mg daily, just added Sinimet (mix of levodopa and co-careldopa) taking one three times day along with Roponirole XL slow release. Some slight improvement. How long have you had PD?
Sheila
It is for the wife Sheila, she was diagnosed late last year but prob had PD a couple of years.
Hi Exile,
They do say we have PD for some time before we get diagnosed, I have left hand tremor and always put it down to a build of scar tissue pressing on my nerves from a previous op. How wrong I were.
Hope you and your wife adapt to this new task that life has thrown your way
take care
John
Thanks John.
Adapt, mmm yes that's a good word.
First day on XL yesterday, 10 mg. All went reasonably well with little to no nausea. But they did take some time to kick in, is this normal, maybe 2-3 hours?
Upping dose to 10 mg showed some slight improvement, can only assume the increase due over the next month will result in even better results.
Its 18 yrs since I was told I had pd and the symptoms were so mild I thougt , the consultant was bonnkers I was fit wrking full time in a job i loved(most of the time) in the heavy plant industry excavators of every size and capability I was highly skilled working to 5 or 10 mm on some jobs for instance I prepared Durham County Cricket ground working to plus or minus 5mm imagine that I would not have thought it was possible if I had not completed the challenge my self.
Then back in 98 I noticed the little finger of my left hand was in constant motion then I couldnt brush my teeth or tie my shoe laces , this was starting to frighten FED the younger so of to the docs I went and I have to say this guy was not the finest example of his profession, he gave me a thorough examination and after he completed it he said with no urgency in his voice , well Mr Fedexlike I suspect you have a dangerous situation ,,, wait a minute dangerous wtf do youu mean the reason I was slihtly aggitated was m uncle Des,died ,or was killed by Cerable Attaczia, I know thats not spelled correctly but he was the youngest of seven children and when he died age 27 naturally the family we
re upset