My name is John and I have been diagnosed with PD 3 months ago so this is all very new to me. My first symptoms were approx 18 months ago when I noticed I was getting a shaking sensation in my right arm and leg (not necessarily at the same time) and my doc thought it was benign Fasciculation Syndrome. I then started to feel a loss of energy and power to my arm and leg on my right hand side so asked for further checks to be done. Following a MRI scan which didn’t reveal anything relative to this, I was referred to a neurologist who diagnosed Parkinson’s. I am now on regular medication and think this may be helping to reduce some of the symptoms I have (which are not excessive by any means).
I am now exploring what the future may bring and what I can do about it, too slow down progress and what I might have to cope with.
Many thanks for taking the time to read this, I feel better just sharing my story
Hi John,
Welcome to our amazing forum community. Here you’ll find a diverse group of PWP, carers, and family members all with unique experiences to share, support to offer, and good humor to spread. We also encourage you to have a look around our website at Parkinsons.org.uk (there is a great section for the newly diagnosed here) as there is a wealth of information that can help you to know some of what’s ahead. We also have a wonderful team of advisers at our free and confidential helpline at 0808 800 0303, capable of offering a range of crucial services with a friendly and highly knowledgeable approach. We hope you’ll feel welcome to settle in and get to know this amazing community, and let us know if there’s anything we can do for you.
Best wishes and warmest welcomes,
Jason
Moderation Team
Firstly, a warm welcome to the community. As a newly diagnosed myself, I can verify that you will be warmly received and it’s a great place to anonymously open up about your journey.
The last few weeks for me has been helped by reading and sometimes participating in conversations on here. Just knowing and understanding that helps to lighten the load.
I am still coming to terms with it all myself and will be contacting the helpline this week. That in itself is a big step because I am not good at asking for/accepting help.
Hello JRH
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.
Tot
Welcome to the forum @JRH, To quote a saying by @Tot, you have Parkinsons, it doesn’t have you !! You are the commander of your ship and you will pilot it how you feel most comfortable with. Don’t be afraid to make light of your condition as laughter is a great medication and a great ice breaker. Regarding the forum, feel free to ask any questions you like, someone will always come back and give you an answer. You are part of a community which looks out for others but as @Tot has we are all different so what works for one person may not necessarily work for you. As i’ve said to someone else on here, reading through other introduction posts is a good place to start learning about Parky. All the best.
