Hello I am new


#1

I have just braved coming to the Parkinson's UK site having been informed I show signs of very early stages of Parkinson Syndrome by my neurology doctor in March this year.

So my story is.....after having breast cancer diagnosed and treated 2 years ago this month at 68 I celebrated reaching a young 70 yr old last September to find myself back to outpatients once more....

I was referred by my GP to neurology last June 2016 and finally got an appointment in Nov 2016. After looking at my very painful, tingling stiff hands she sent me for a MRI cervical neck scan and nerve conduction tests whish I had in Dec 2016. During this first meeting she asked me to do further body tests which included walking up and down a hospital corridor and tapping my hands on my knees and the same with my heels. I had already mentioned neck pain and dropped shoulder on my L side and rigidity in my left ankle which on tapping hands and heels I realised my L side was much slower than my R side and she confirmed she thought I had a weakness in my L side!

I returned to see her 4 mths later in March where the tests confirmed bilateral severe Carpal tunnel syndrome and also she informed me I had the start of dupuytren's contracture and trigger finger in 2 fingers too!. She then did the walking and tapping tests again and also looked closely at my L hand at rest which I then noticed a very slight tremor myself!!  She then informed me I had signs of bradykinesia in my L leg  and then PS was mentioned and I was referred me for another MRI of my brain and a DaTscan too.  These I have had and my next appointment will be the end of July for the results and to find out what's next. She assured me that there would be no medication for a long time and that I wouldn't die of PD either!!  (which I knew!)

To be honest the first 3 weeks I was traumatised, shocked, angry and mourned my unknown future since we have several friends with advanced stages of PD!  My blackest moments were the long nights awake.  I read all I could on Parkinson online and the to things I resolved was to excercise and live for today, so until July when I will know what next,

I hope this wasn't too long but it is my introduction! 


#2

Aye aye ma na 

dina read too much and you'll be fine if you read too much you'll think every time you feel something that it will be a symptoms that you've read live well stay happy 

Ian xx


#3

Hi there retired nana

That wasn't too long as far as intro's go, it was interesting reading.  We all kmow our bodies and limitations, but as many of us do when we are first diagnosed, we fight and push boundaries that whilst undiagnosed wouldn't even contemplate.. Maybe its the fear of not being able to do something in the future or sheer determination not to let the disease effect you, i don't know.  There are people on here very knowledgeable who you can ask questions , i am not one of them because i choose not to know too much and that suits me. I get on with day to day living and the ignorance keeps my minds attention on me not the Parkinsons.

I hope you find what you need on here

 


Barnowl 1

 


#4

Hiya Nana and welcome .....can i say first of all that you look fab for 70 and a lovely smile......very important to keeeeeeeeeeep smiling and a positive attitude helps. I know its not always possible when you are feeling rough. I also read all i could and i felt sure i knew a while before Dx that i had PD, in fact when i was finally told after approx 4 years it came as a relief to find out finally why i had felt so poorly for so long. Mt poor Husband was more shocked than i was....but i started the meds and quite quickly started to feel an improvement. Everyone is different and you will find what suits you best but i try and keep active, still managing to dance a little which is my  love (never make "Strictly") and at times i am that stiff but some stretches in a warm shower, my old faithful "TENS" machine for pain and accupuncture from my wonderful GP who is a qualified Accupuncturist. Plus putting the thoughts of what the future holds way into the back of my mind.....i refuse to waste my time giving it too much thought, keep your mind busy with things you  enjoy....and keep posting on here...we are a friendly bunch who all understand how you are feeling....if you need to chat, someone is always here to listen.....never forget that.

Best wishes

Dolly x


#5

Aye barny

ignorance quality good advise

take care 

Ian xx


#6

Ian,  


Hi there, Barny! whats that all about?  Ha Ha Ha, my brother called me that when i was small!

I was not intending to advise anyone to put the blinkers on like i do because for many strength is found in knowing all you can about any condition you may have, Just not for me or you by the sounds of it. We all find our own way of managing.


Barny sounds much better than Barnowl!


#7

Hi barny

with you on not knowing too much about parky I just like answers for what I feel present time , like your nick name then I think it's a good name take care 

Ian xx


#8

Hello all, 

I was told i had parkinsons on weds morning and i havent slept since. i'm waiting for the doctor to contact me, i suppose thats what happens. 


#9

i'm 61 and drive trucks, and buses around europe. does anyone know if i will loose my licence.

 


#10

No you won't but when you are dx you must inform the dvla and your insurance take care if you have problems with sleep though good luck I'll speak later the night have to go back to work

good luck Ian 


#11

Hi Pog,

I'm really sorry to hear that you've not slept since being told you have Parkinson's. Please remember that there is support available and people who can answer any questions you may have.

Our Helpline team can provide information, support and advice. Call free on 0808 800 0303, Monday-Friday: 9am-7pm, Saturday: 10am-2pm. 

Take care,

Joanne

(Digital team) 


#12

Hi Pog

in my case the dvla sent a letter to say they would investigate my case I have a trailing left foot and a fair shake but shake settles down when i am seated my balance is good  . The dvla take ages to get back to you with their answer meanwhile you keep driving !  .good luck to you  Pog

( ps  they left me with full lgv. )

now go to sleep Pog and stop worrying 

Ian 


#13

Hi all of you who responded to my introduction. What a friendly bunch xxx

All sound advice and I have really calmed down and stopping reading  anymore til I need more info and just enjoying life again

Lynne xx

and PS Barn Owl.... I too like Barny....our dog was called Barney!!


#14

Hi na na 

your sounding happier now  good to hear your doing fine  and if your at a loose end give us lot a shout here on the forum even if it's a wee moan ha ha take care 

Ian xx


#15

Thank you for the replys. i'm off to the pub.


#16

Aye Pog

your some boy ! Have a few do you good sounds like your not worrying so much now  once you get a few down it'll help you sleep good luck 

Ian 


#17

Lynne thanks for that!  an old dog! ? You have a wonderful fun look about you, keep that going, makes me want to laugh.  This condition may alter you physically but i intend to push it until it cant be pushed then adapt, having a laugh on the way. Good luck finding your way. Everyone on here is using their real names lately so signing off as me.


Night

Rachel x


#18

Thanks Rachel, you too are a pretty lady and yes Ian I will keep in touch. Pog red wine is my tipple! 

Lynne xx


#19

Hey na na like the sound of you on wine water of life keep it up  sounds like your on top form love it 

take care Ian xx


#20

hello retired nan

I am my husbands carer, all the appointments you had where the same as my husband, took 2 years to get diagnosed. I read into Parkinsons a lot as it helped me as a carer.

we all different, take care and if you every want a chat

sue