Newly Diagnosed

I am recently diagnosed and trying to get to terms with the diagnosis. It seems that I may have been ignoring the symptoms for some time, the first time something was brought to my attention was my daughter commenting that I was not using my arms when walking. However, I just thought it was me getting old!! Only when I started to experience pain in my legs, more than a year later, did I eventually go to see my doctor. She immediately told me she thought I had Parkinsons and started to refer me to a specialist. Three months later here I am trying to determine with the Parkinsons nurse the medication I need. At the moment every day seems to be something different as I try to come to terms with the diagnosis and determining when the best time is for me to take the medication. A strange thing I find is that I feel that everyone is looking at me, although I appreciate that probably is not the case. I have a wonderful supportive husband and I am sure we will adapt and lead our lives much the same way.
I welcome any advice anyone can give me to help me come to terms with this situation I find myself in.

Hi Chris- I identify so much with what you write. I was diagnosed a month ago, not on meds. Just cannot take it in. Taking it slowly. Glad that you’ve found this group. We’ll get through with all this mutual support!

Hi Chris2111 and annie2
Welcome both to the forum, you have both made another step on this journey Chris asking for advice to help you come to terms with and annie2 getting through this with mutual support. I’m sure you will hear from other members and won’t overload with a first post but will say please check out the First Steps Programme, this is an excellent starting point, try to stay positive even though the what if questions are popping into your head, focus on the present, I appreciate it is easier said than done but try not to worry, do what makes you happy, perhaps find your PD nurse and have a chat about meds, when to start, benefits of starting them, side effects. As with any medication we can all have different experiences but understanding what they do, how they work and how they can improve your symptoms day to day is something that the PD nurse could discuss with you. Again welcome and hope this helps you both :smile:

Hi Chris
You have described exactly what happened to me in every detail
I was diagnosed 12 months ago but looking back I had many signs of PD years before sleepless nights trips and falls not swinging my left arm tremor etc
My first visit to my GP I was told put both hands out and was told you don’t have Parkinson’s as both would have a tremor months later I asked for a second opinion and was referred to a neurologist
My medication was prescribed and tweeked over the months at first I found it very difficult to tell people
(Family and friends) I got very upset when telling anyone still hard now
But everyone is fine now and understands my condition and we are all very positive about the future as I try to be positive
Take care and good luck

Hello Chris2111 and annie2 and I’m glad you found the forum. AnnaElsa has already replied and given you some reassurance I hope and some excellent advice.
Everyone deals with their diagnosis in their own way, there is no right or wrong way, just the way that suits you as an individual. That is equally true of Parkinson’s generally and although you probably find this hard to believe right now, things will settle down, you will begin to understand it may not be the life you envisaged but it can still be a good and productive one and most importantly it is your life and you can still have your hopes and dreams if that is what you want. Unfortunately I can’t tell you how long this may take as the timeline is yours but it will happen
The key thing I think is to take things at your own pace and and do them when and if the time is right for you. For eg AnaElsa mentioned the First Steps Programme which is an excellent programme aimed at those newly diagnosed; that doesn’t mean you have to do it immediately. You may not be ready to talk about your experiences or emotions etc., or indeed it may be something that doesn’t appeal at all, and that is all perfectly fine. In the early days it can feel that everything is mixed up - your emotions may be all over the place, it may feel like you have no future, that it’s only a downward road, sometimes it can seem like an anticlimax - here you are with this life changing diagnosis and it feels like something equally big should happen but instead you’re just given an appointment for some months ahead, there doesn’t seem to be any sense to anything; in essence it can feel like everything has been taken away and you have no control or say in what happens now. That can be scary but it isn’t so. The condition moves slowly in most people so there is time to adapt and adjust and it is your Parkinson’s and you do have a voice in how you want to manage it, be it with your clinical team, family, friends, work colleagues or anyone else; it’s not the one way street it may appear to be.
You will figure out how you want to live with Parkinson’s but it can take time so take it one step and one day at a time; as AnaElsa said focus on the present to which I would add and the immediate future and concentrate on what you need to know now.
I appreciate this may be difficult to believe but everyone on the forum who has Parkinson’s has been where you are now. We survived and so will you.

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Thanks Ana, Paul and Tot for your encouraging words- much appreciated.

Hi Chris
Its only been a couple of months since i was diagnosed with Parkinson and I can see where you are coming from I now look back over the last few years and ask myself was it me getting old or PD taking hold slowly I feel a little shell shocked to be honest and although i know I have to come to terms with it I do not feel the same person I was, My wife is very supportive but I am still hiding a lot from here