46 and diagnosed with pd but in denial


#1

I was diagnosed with pd back in november 2013. I have been back and forth to see specialists and had a dat scan and an mri. The last specialist I saw diagnosed young onset pd just by going by a physical examination and he said that the scans were not always accurate. But now I have had the pd diagnosis I sort of do not believe it things like this happen to other people not me.What if the scan was right and the specialst was wrong? Did anyone feel like this following a diagnosis?


#2

Hi Candy and welcome to the forum,

Your experience of diagnosis is not at all unusual. There is no single definitive test for Parkinson's and diagnosis is often more of a journey than a single event. It is common to be diagnosed based on the expert opinion of a suitably experienced neurologist. If you react positively to Parkinson's medication that reinforces the diagnosis. 
It is very common to feel some sort of denial especially if you are diagnosed at a young age like you have been. I was diagnosed about 9 years ago at age 38 and I went through a similar process to the one you describe. I stayed in the denial state for several years.
It can be very hard to come to terms with diagnosis. It is normal to have loads of questions about what may happen next. It is a fact of Parkinson's that nobody can tell you exactly how things will change over time. This forum is full of people who can share their experiences and help you to understand your situation. 

I hope that helps

Elegant Fowl


#3

Hello Candy

I'd endorse EF.  I too was diagnosed rapidly - I even asked if I was being offered a hypothesis rather than a diagnosis - but my neuro was unequivocal.

I'm not as young as you or EF but denial seemed a good tactic to me! Or maybe a sort of blind acceptance. But PD often develops slowly, as others will tell you, so there's time to allow yourself to come to terms with things, and then to be in charge of your own condition. I hope this forum will help you, and amuse you, and inform you - it certainly has me.

Take care, be kind to yourself, and post often!

Best wishes

Semele


#4

Hi Candy

like you I was diagnosed within about 10 minutes of seeing the neurologist but I did have a Dat scan afterwards which I think may have been more for my benefit and that confirmed it.  If I was honest I probably already realised that my problems were PD related as my mother also suffered from the disease. However I dont think it is unusual to swing between denial and acceptance.  If I spent too long in denial i might not be motivated to keep up my exercise regime so I do try to accept what has happened but it is natural to think why me.  One thing that has helped my acceptance is that over the last couple of months I have learned that two friends whom I haven't seen for a while and an ex colleague have also been diagnosed with PD.  This has made me realise that everyone has something to deal with and for us it is PD.  Of course we all have good days and bad days and I sometimes find myself blaming the bad days on PD instead of just realising that I am tired for other reasons.  The good days of course are the ones where I just get on with things and don't give PD a thought.  I hope you have plenty of good days, that you are able to do everything you want to do when you can and you can find some sort of acceptance.


#5

Hi Candy,

I was diagnosed in December 2013 (I am 52) and am still stunned more than in denial as was told by my GP that my tremor in my left hand/arm was not an essential tremor and was NOT Parkinsons. When I went to see the neurologist, she did various writing tests then got me to walk up and down the corridor then sat me on the bed and got me to do various physical tests then said I had Parkinsonism, my girlfriend who trained as a nurse was stunned with the fact I was diagnosed after 1 consultation.I knew something was not right and think I just expected to be given some pills and for my tremor to go away. Finding it very hard to come to terms with the fact I have something that is incurable(at the moment) though not life threatening itself, don't know if that is a form of denial but  I guess it could be. 

These forums are a good source of information and a source of comfort from the fact that nobody is alone if they don't choose to and if you ask, there always seems to be someone who has been through what you are struggling with so do not be afraid to ask, however trivial you think your question.

Hope this helps and good luck with your journey, there are lots of us on a similar one.

Cheers


#6

Thank you everyone who has responded to my post. I am new to all this but I think that this forum is gong to be very useful and it reminds me that I am not alone and there are people that feel the same as me because it can be hard to explain to someone who does not understand how it feels.


#7

Hi, candy --   I'm checking in a little late but wanted to add a word to the discussion.  You didn't mention your symptoms.  If they are slight now, at the time of diagnosis, you may be one of the lucky ones like me.  I have had PD for over 16 years and am still in the first phase in regard to visible symptoms.  When I meet new people, they never guess I have PD, because I usually have no tremor and have a normal gait nearly all the time.  I do tend to move slowly and sometimes have poor posture.  But the right combination of meds for me plus exercise and optimism seem to be working well.

Although it was a long time ago, I do remember how I felt at diagnosis:  that shock and disbelief.  Parkinson's should attack elsewhere, not in MY body!  It seemed completely wrong.  But gradually I accepted the idea.  For most patients this is not a fast-moving disease, and the medications are very effective.

Best wishes,    J


#8

Hello J, yes I think my symptoms are quite like those you describe. I do have a resting tremor in my left hand but I am good at concealing it so people don`t notice it, My gait is normal most of the time but sometimes I do drag my left leg a little, I believe that I am in the first stages of the condition and the meds are helping as I am not so rigid as I was, although recently I have been suffering from muscle cramps in both of my legs which are tiresome. I hope that I to am one of the lucky ones who has a slow progression. But the nature of the beast is that it is unpredictable but like I`M sure you are doing I am taking one day at a time. Thank you for all the responses to my post.