Newly diagnosed


#1
Hello, I was diagnosed 2 weeks ago, although for years I have been treated for a bad back and when my legs got painful and i began shuffling when i walked i put this down to some DIY work I had done (tiling a patio). My family insisted I find out what was wrong, they didn't buy the DIY idea. Being diagmosed was traumatic, I had researched PD and did suspect that I might have it but the realisation of diagnosis was still a blow. Furthermore I had decided after reading of extreme side effects not tp take medication. The neurologist I saw advised that I start on ropinirole XL immediately, so I started on 2mg every night increasing fortnightly to reach 8mg which I then stay on till my next appointment with the neurologist. So far I just feel drowsy, no noticeable improvement but then again I realise I am on a small dose. Has anyone got any advise re taking this drug and the effects both negative and positive. The other thing is, usually on a Friday night I have a few beers, but have not drank since being diagnosed, does anyone know if i can continue my Friday night drink or not.
Sorry to be so long winded, but I would appreciate any advice anyone can give me, at the moment I don't know what to expect.

JenTay

#2
hi
ropinerole's effective dose varies by person but often require 12 or more mg.
slow titration is important.
sleepiness often wears off but returns with each each increase.
a few beers is an excellent idea. but might increase sleepiness so take a taxi!

the big danger is a change in behaviour - make sure your family are aware to look out for obsessive compulsive activities. don't have anything to do with gambling or dodgy internet activities that involve handing over money.



cheers

#3
hi jentay, i was diagnosed 9 years ago and like you was devestated but have learned to cope with the pd, i didnt take any meds for the first 4 years that was my choice i felt i could manage without them and my pd nurse agreed its your body after all she said and she was right the point i am making is that you can refuse to start on the meds if you dont think they are making a difference just yet you should wait if you think you can manage without them you will know when the time is right, i new after 4 years i needed help and was put on ropinerol which i could not tolerate so was taken off them, in answer to your friday night pint my pd nurse told me to have a drink if i felt like one she said i would know when i have had enought but there is know harm having a couple of pints dont let the pd take over your life you are still the same person so do the things you are used to only a bit slower good luck sue.

#4
Of course everyone is different and never more so than in Parkinson's so I can only speak of my husband,s experience. He has been on ropinirole for seven years starting on the ordinary one and changing to the XL version when it came on the market. Initially,he felt sick and had to split the dose taking smaller amounts more regularly and always having it with a plain biscuit.On changing to the XL(slow release)version that all stopped and he slept better as well.He found no real improvement in symptoms until he reached 18 mg, but a higher dose did not give anymore improvement, so after a few years Madopar was added.He has no real side effects since being on the XL At present,having had noticeable symptoms for at least nine years, he leads a very full and active life. Things are much better than we expected. So do not think the world has come to an end. Everyone is not as lucky and you will hear some very sad stories. Read up on all the side effects and ask your nearest and dearest to watch for any signs of them. Then get on and live your life. Nobody know what the future holds so we must live every moment to the full.Spending time worrying about what might happen is time wasted.

#5
{ECD - great to hear everything still going well - long may it last!}

#6
Thanks for your replies, they are really useful. It is reassuring to think that people are out there willing to share their experiences, it has encouraged me to think that maybe I can still enjoy life although a different life. Thanks again.

JenTay

#7
Thank you for your good wishes, Turnip.
I forgot to mention about having a drink.When John first read on the instructions for taking the pill about not having alcohol he phoned the Help Line. The nurse said it was one of their most asked questions, especially around Christmas.She then said to be guided by his body.This he has done and drinks as he always has done,which is a couple of beers on his folk nights.I have never noticed any problems.

#8
I still have a night cap of an evening. I've tried whisky, beer, cider, wine, g&t, vodka, baileys, advocat, port, sherry and buckfast.

I find it improves sleep, helluva head ache, so have a pint of irn bru ready for when you wake up.

Only kidding.

In moderation one or two once or twice a week. My liver and I have agreed its the way it should be. Sleep is improved and I finish off with a pint of soft drink, just to make sure I'm well hydrated (helps with tabs according to consultant, and who ami to argue).

#9
tried your cocktail recipe,Eck, not sure about the baieys. too much cholesterol.

my current favourite is gin, green ginger wine and whiff of lime juice. i call it 'drink'.

#10
Well Eck, you have convinced me, so tonights the night for a beer, altough I must say I feel a bit anxious but I am sure the anxiety will disappear as the
beer goes down.

Cheers