Hi all, i'm new and havent really got a clue


#1

Hi my name is Wullie, i was diagnosed on June the 3rd after going to my GP for 2 or so years and being told i had essential tremor. They eventually got fed up with me and referred me to a neurologist at Ayr hospital who also told me the she did not think i had PD but ordered an MRI and a SPECT scan, MRI came back normal but the SPECT scan came back abnormal she then told me i had PD.  I have severe tremor in left  arm and leg and not so violent in my right, i also have stiffness in my neck and have problems with my short term memory and can't find a lot of words when talking to people also i stumble quite often. My Neurologist never really gave me much information after her diagnosis but told me it will get worse and i should come on to PD UK and read up on the disease and the drugs used to treat it I have been referred to the Parkinson's nurse and the memory clinic so we shall wait and see.  I must admit i am now coping with the thought of having Parkinson's and getting on with my life. 


#2

Hi Wullie,

              welcome to the board. I were diagnosed in April 2016 but had tremor some time before that. Your neuro is right you can learn alot from this board and they all make you feel welcome. The thing I have learnt is we are all affected in seperate ways so no 2 of us are alike and meds are different. When dx i were offered group therapy but couldnt sit in a room with others sharing thoughts. However in here you can ask anything and someone will help you. And if you find youre on a low day then you dont even have to join us.


Take care John


#3

Hi Wullie,

Welcome to the forum. 

As Smoggy has already illustrated, you are not alone. There's lots of people here who'll be happy to share their experiences with you.

As your neurologist said, there's a lot of information on our website, amongst which is this introductory guide to Parkinson's: http://bit.ly/1R2vKLD

Did you know about our helpline? You might have questions you'd like to ask about living with Parkinson's. If this is the case, please feel free to ring us on 0808 800 0303 (Monday-Friday: 9am-7pm, Saturday: 10am-2pm) where you can speak to trained advisers, including Parkinson’s nurses. 

Best wishes,

Ilona (Moderation Team).

 


#4

Good morning Smoggy and Still Me With PD. Thank you for the replies i'm quite sure i will have loads of questions in the near future so it's good to know there is somewhere and some others i can turn to in the time of need.

Thank you.


#5
You haven't really got a clue - best to rely on instinct so does not matter really -

#6
Hello Willie, Welcome to the forum not that any off us would chose to be dealt this hand but welcome anyway. We are all in this together different experience and lives make us aware that this condition can affect anyone at any age (youngest person ever diagnosed was only 8.) The helpline team are very good so if you have any questions do not hesitate to call and off course if you prefer you can ask us.What matters most is you are number 1 and you need to look after yourself PD can drag you down without you even realising it can also consume you. One bit of advice I can give you as a PD suffer myself is do what you can whilst you can and with whom you can. This can be challenging at times but for me the PD cannot win. I hope for you the same and medically you should be reviewed every 6 months some hospitals are good some not if yours does not work like that then just phone your neurologist secretary, sometimes they need to be pushed and if you are having difficulties in between reviews again call the Secretary and ask for a med review do not suffer in silence I don't this is your right. My diagnoses was done in 3 months this quick is rare but I pushed there was no way I was gonna wait 6 months to 2 years (this is generally how long it takes) and in the meantime if you do have anything worrying you just ask someone on here or on the helpline will know the answer. Best wishes BB

#7

Aye aye wull

we all get by you will to welcome to the forum 

ian


#8

Hi Wullie,

             I am new to site but have been diagnosed for six years. Ask me any questions you like, i will always reply. Please look at my posts on benefits. This is a great forum, best of luck

                                                                 Michael.