Hi, I was diagnosed with Parkinson’s about 4 weeks ago. About 4 years ago I was diagnosed with benign essential tremors but the consultant who diagnosed Parkinson’s said that I had previously mis diagnosed and he thought I had had Parkinson’s longer than originally thought. My way of dealing with things is to tell myself that it is what it is and I just have to accept things. That said I’m beginning to feel overwhelmed. Yesterday I was a a funeral and today I feel exhausted and shaky. One of the symptoms I seem to have is not being able to judge the depth of steps or kerbs & I find this frightening and I worry about being out on my own and falling and not be able to get up. This is my first time on a forum.
Have read your post and will reply properly later if you can bear with me, typing isn’t good just now, as you are so recently diagnosed felt it important someone answered promptly. You’ve come to the right place and I will catch up with you later.
Hello again Marganne
Sorry to be a bit slow in getting back to you. I wanted to get a prompt reply to you because the early days can be difficult. You’re trying to take in the diagnosis and what it means, emotions, can run riot, your brain goes into overdrive etc etc.
Many people feel they need to read anything they can get their hands on about Parkinson’s but generally speaking the advice from forum members is to not do this; more often than not you either end up with information overload when you can’t see the wood for the trees or you only remember the most bleak outcomes which can make you feel that you might as well give up now. You are also having to come to terms with a misdiagnosis.
Parkinson’s is a hugely complex condition which effects everyone differently and is generally not well understood so it is difficult if not nigh on impossible to give any kind of definitive answers. It is however possible to highlight a few things which may help - in no particular order
Parkinson’s is a slow moving condition in most people, so you do have time to get used to the idea and how you feel about it.
It can take time to sort out your initial treatment options and this may involve an element of trial and error until the right combination is found for you - it may not be an easy time but knowing this can normalise things a bit and help you manage it all better.
Any emotion be it positive or negative is valid. I stress this point in your case because you write that at first you felt you just had to accept things but now you are feeling overwhelmed. Leaving apart the fact that you attended a funeral emotional labidity is very common and again recognising this may remove much of the fear that things are, for eg, spiralling out of control.
I accept you will need to take this on trust at the moment but things do settle down and you will find a way that suits you to live the best life you can with old Parkie as part of the package. My own way is to try and stay positive which has served me well for almost 12 years. That is something I frequently write about here on the forum so if you want to find out a bit more about what that means to me have a look at some of my posts. There is no right or wrong way, only what works for you.
With regard to your concern over not being able to judge depths etc. Spatial awareness issues can be an issue in Parkinson’s. The link is for an article which may be of interest . I would however first recommend you have an eye test just to make sure there isn’t an alternative reason.
This is all very general and not comprehensive, but I hope gives you enough that you feel a bit reassured. The forum is open 24/7 so you’re not on your own.
Finally and the one thing that above all others is most important to me personally and that is I am Tot and I happen to have Parkinson’s - I never define myself by my Parkinson’s. The brain is a powerful thing and negative voice always shout loudest.
This gives me a way of making the positive voice come to the fore. It can take a bit of practise and doesn’t come with 100% guarantee, but it is a strong tool that works for me. It may be something you want to try.
Again apologies for not getting back to you earlier.
Hi @Marganne welcome to the World of Parky, as you’ve gathered from @Tot there’s quite a lot to take on board but as reliable as ever she’s come to your rescue with quite a comprehensive post. One thing I will add and I tell all newbies this is to ask your GP Surgery where to contact your nearest Parkinson’s Nurse, these people can help you when you can’t get to see your Neurologist. Of course there’s the forum as there’s always someone floating about to help you with any questions you may have. We are a friendly bunch and help one another where we can so don’t be afraid to ask, you’re one of us now, plus, as Tot has already said, on here you’re never alone or far from a friendly ear. Take care, stay safe.
Thanks for your message, I had a phonecall from the Parkinson’s nurses last week and have a phone number to contact them if needed. The forum seems to be a good place – especially as everyone seems so helpful Thanks again
You’re welcome it’s what I try to do and yes, this is a good place, the ONLY place to come to for advice. Take good care of yourself.