Tudorrose, my OH has had PD for many years now.
Do you have a local Parkinsons Specialist Nurse? - most areas do and they are worth seeking out - they are endlessly helpful and indeed we were on the phone to our local one just this morning for advice over drugs.
There is also Parkinsons UK (www.parkinsons.org.uk) - they raise money and sponsor lots of research, provide support and have a raft of downloadable information leaflets about all aspects of the disease. I ran a pub quiz for them yesterday and we made £200.
My OH has had it for over 10 years and I think it is true to say that it has not been noticeable to people who do not know him well until very recently. He is swapping some of his drugs around to try and improve things.
He has been kept reasonably stable with a cocktail of different drugs and we are really happy to have them. Twenty years or so ago it would have been a very different story, but these days it is possible to relieve the majority of the symptoms to a remarkable degree. I would just say that you need to persevere with any drugs that you are given in order to get the best result.
I can understand how devastated you must feel. It must have come as a shock to you. We knew his diagnosis long before it was officially down on his medical notes as my OH is a retired doctor. He chose his moment to request a consultant referral when he felt he needed to start treatment.
I would encourage you not to feel despondent - the outlook for people with PD has improved beyond recognition in the last 20 years and in most people it is well controlled and they get on with their normal lives. We have an outdated image of it as being an end to normality, but for most it is not like that at all. If you look at the Parkinsons UK site you will see stories of many people who are doing well.
I do know that there is one member of gransnet (whose name I cannot remember!) who also has PD so hopefully she will see your post and get in touch.
Please feel free to pm me if you wish. Don't despair!
