Hello to all newly diagnosed forum members and a warm welcome to you all.
I am known as Tot on the forum and I was diagnosed in 2009 and at Christmas passed my 15th anniversary of my diagnosis. Until recently I contributed fairly regularly to the forum but at the moment am having a bit of a break. However I do take a regular look at the posts and reply to a few and it was while I was doing this that I became aware that there seems to be quite a number of new posts to the forum and thought I would tell you a little of my experience in a general sense as it may help some of you to know that what can seem like a catastrophic end to life as you know it, is nothing of the sort for most of us. I am not going to talk about specific issues in any depth, rather this is intended to be a fairly light but honest look at living with Parkinsons and reflects my personal perspective only.
To start at the end first, 15 years on I live happily on my own with only two hours help per week - very little out of the 168 hours that make up a week. I arranged this privately myself and it is a very flexible arrangement, Karen takes her lead from me in what needs doing. When she is on holiday, I don’t need her to cover the time. It is just useful to have this time available to me so things run smoothly - I no longer drive so she will take me to appointments for example. My point being that 15 years on I am still independent and getting on with life. I am not unusual, many on the forum live happy and productive lives for many years before Parkinson’s has much of an impact.
There have been some changes in that time of course and the diagnosis brings with it a number of decisions that ultimately only you can make. What it is important to understand is that there is no right or wrong way to live with Parkinson’s only the way that is right for you - and that will take as long as it takes but you will find a way - your way - to live with Parkinson’s and have a good quality of life. You may have to take this on trust at the moment but it will happen.
To go back to the day of my actual diagnosis for a moment, this did not come as a big shock to me in the way it does too many. I knew something of neurological conditions and it seemed my symptoms fitted best with Parkinson’s than any others such as MS. I was relieved however to learn it was just the common or garden type of Parkinson’s knowing as I did that other conditions that fall under the same umbrella have a poorer prognosis. Since that memorable day and through posts on the forum it has become very clear to me that there are almost as many ways to live with Parkinson’s as there are people who have it. I have also come to believe that this is largely dependent on the sort of person you are and how you come to perceive your Parkinson’s. It may be easier to understand if I use myself as an example. I am basically a glass half full person. It didn’t take me long to accept my Parkinson’s as a fact I could do nothing about and to see it as a different turn in the road that is my life. True it’s not one I would have chosen but it is a fact. So I work hard to keep a positive mindset and my goal is not to fight the diagnosis, rather I challenge the curved balls it throws into my path. Most important to me and often repeated in my replies on the forum, I never give Parkinson’s star billing. I am always Tot first and I happen to have Parkinson’s. It’s not everyone’s way but it works for me.
I am not going to insult anyone’s intelligence by suggesting that living with Parkinson’s is a barrel of laughs, it’s not. It can be frustrating in the extreme and, again as I have said in some of my replies, there will be times when you want to stop the world and get off. However in most people it is slow moving and there is time to adjust and adapt. You may need to do things a little differently but there’s no reason to give up on your hopes and dreams. Aim give yourself the best life you can
The early days are hard, it can take time to get things sorted out, you may experience every emotion there is, you will need to address the worries and fears that many newly diagnosed feel - the future, meds, to tell or not to tell others, employment etc etc. The best thing you can do right now is take a deep breath, stop and give yourself time to get a bit used to the diagnosis, to identify what information you need now and to acknowledge all emotions are legitimate. You don’t have to do everything at once - baby steps are fine.
I appreciate that this is a very superficial overview of living with Parkinson’s but I hope it has shown in some small way that it is not the end of the world unless you choose to see it that way. Here I am, now in my 16th year post diagnosis, living life on my terms and am actually quite content with my lot. Nor am I unusual, there are plenty on the forum who are doing equally as well and are enjoying life. As you each find your feet in this thing called Parkinson’s, my hope is that you will be able to say the same.
Good luck and best wishes to you all,
Tot