I have been thinking how best to reply to your post. There is absolutely nothing wrong with your questions, unfortunately I can’t give you any hard and fast answers, I wish I could. Parkinson’s is a hugely complex condition and while we may share some common features it is in fact, a condition that affects everyone differently.
However do not despair it’s not all bad news!
First thing to say is that in most people the Parkinson’s moves slowly so you do have time to adjust and adapt to changes as they occur.
The early days - however long that may be is a kind of how long is a piece of string question - is something we all go through and though you may not believe it just now things will settle down and you will find a way to live with Parkinson’s, we all do. Thing is, it has to be your way, that’s the only way that works. There are some general points that I and others often include in posts for newbies and briefly these are - give yourself time to get used to the diagnosis and your feelings about it, don’t be surprised if your emotions are a bit unstable just now, and being scared about what the future may hold is ok. We also advise you don’t go mad reading everything you can lay your hands on - this can lead to information overload and confusion and a tendency to remember only the worst things that can happen and which may well not be your future. For now concentrate on what you need to know at the moment, there’s time enough for everything else later. Its worth making a note of any questions you may have in preparation for your next appointment so you don’t forget anything and, if it suits you keep a diary or some sort of record of changes to your symptoms, moods and anything else which may help create a full picture as this will help with any decisions you and your medical team need to make
All well and good you may be saying but what can you actually do. Speaking personally, and I can only tell you what works for me, I am a strong believer in keeping a positive attitude and approach. If you read almost any post I write has this as a recurring theme. As I have said many times this does not mean seeing everything through rose tinted glasses. It is much more than that it’s about being honest with yourself and being aware of changes and challenges and looking at what can be done to minimise its impact. I accept that whatever coping strategies I may have don’t come with 100% guarantee and that some days will be better than others that sort of thing. More than anything else don’t spend I don’t send time worrying about my unknown and uncertain future. I plan ahead only what I need to, to keep things ticking over and my first priority, making things as easy as possible on my family. I have learned to live for today- this 24 hours only comes once. Most of all I do not define myself by the Parkinson’s. I am Tot first. I happen to have Parkinson’s. In a nutshell it’s a mindset, a deliberate choice. It’s not infallible. I have my moments but almost 12 years on I am still doing well. Work out how you want to approach it and you’re halfway there. I don’t know how much sense that makes, it can be a bit abstract. I just think I can do anything about having Parkinson’s but it’s still my life and I intend to enjoy it. I do hope this helps a little.