Took me awhile to come on board


#1

Hi all,

          got my dx in April 2016 and never wanted to accept it. Consultant was excellent and gave me advice and referred to parkies nurses.

          I have to be honest and say I have never been one to 'air my dirty laundry in public' however, after reading many of the posts on this forum I think this could be easier to handle than group therapy sessions. Now I feel i'm rambling on.  

          So........if you will accept me as part of your crew lets set sail on this mystifying journey.

John


#2

 

Hi Smoggy - Welcome to the forum we are a friendly bunch with lots of helpful information, and full of support for everyone. No two people are the same with parkinsons, their symptoms are not the same, their reaction to medication can be different to the next. But you will find what suits you eventually and settle down. You did'nt actually mention if you have started taking  medication, I refused meds for the first twelve months but then I knew it was time to acccept the meds.

Take it in your stride and look after yourself - Regards Sheila


#3

Hi Shiela,

                thanks for the welcome and its true what you say us with PD are really a bespoke lot.


In answer to your query I started on 2mg of ropinrole Im now on 6mg. My symptoms were first questioned in October last year by a physio at my local hospital. I then went to my gp who referred me to neuro dept. After waiting 6 month i got my first appointment and dx. It was a shock to say the least but thanks to google I were able to lessen my own ignorance of PD

Once again thanks for the welcome and Im sure i will be picking your brains for help and advice

John 


#4

Hi Smoggy


Welcome to the forum, as you have probably seen already there is plenty on here to inform you and also amuse you but above all give you a little company in this boat we're all in. The only trouble i find is that once you have logged on and begin chatting the hours just disappear! On that note i must be off, busy day ahead.


Have a good day

Barnowl1


#5

Hi Barnowl,

                   yes you're right in what you say, there is loads of information on this forum. In fact too much to take in at times, dare I say, its quite frightening. After getting over the initial shock of dx I have decided that PD wont beat me, I realise I will have bad days but doesnt everybody? Ive had spinal probs for 16 yrs hence early retirement from fire service but that has in itself educated me to take life steady but still enjoy myself.

(there I go rambling on again......must be the parkies )

John


#6

Smoggy John


Ramble away! For me i believe that this disease wasn't mine by choice but i can choose how i deal with it.

I adapt and i live a happy and  fulfilling life without the knowledge of what is around the corner , because just maybe it might not be around that corner for me.  I don't waste my time waiting for it all to happen i just get on with it.  For some,  knowledge is an essential part of coping but not for me.  Do what is right for you and yes! Enjoy yourself!

 

Rachel


#7

Aye aye smoggy 

welcome to the forum ma boy  we are all here and yes we are all different even though they call it PD and we all deal with it in different ways main thing is be happy !! Good luck 

Ian. 


#8

You make me smile Ian x


#9

Hi Ian.....


             i'd like to say you made me laugh when you told the gag about the PD sufferer and can of coke. Now is that politically correct?


And to you and Rachel ....THANKS for putting a positive on life.


Im here to stay


John


#10

Aye aye barny 

how's things with you ? Heard you were of for a wee break but now your posts are all hours now your back hope you had a good time , no a lot happening up north here just the wife's birthday yesterday so we had a family get together good fun , am seeing p nurse next month needing more drugs walking is no great just now  and that's all the news from north east Scotland take care ma. Wee centipede 

Ian xx


#11

Ian, i read one of your posts when you mentioned cramp and your toes curling under! I have that too but usually whilst concentrating on something else. Often when putting mascara on, my foot does its own thing. How's your mascara application?


BTW i bought not one cushion or shoe whilst away! now that was control !

Rachel x


#12

Well well  !!! Barny 

ma secrete is out now !!! The lipstick that gets me .   Well I must say you did really well no shopping  that's got to be a first for any lady I've ever known , cramp is a horrible thing though ( moan over) gosh you were awfull late on the go the other night this posting is very addictive  well nice to hear from you glad to hear you had a good time while you were away , tooralooo for now 

Ian xx


#13

Your no putting on the mascara to are you smoggy ? Barny she's an afa case ,make light work of this parky and it's much better but there is clever answers from some on here got to go now my bedtime goodnight all 

Ian 


#14

Hi Smoggy, 

Welcome to the online community! I had the pleasure of approving your registration. I'm Kat and I work at Parkinson's UK. I'm part of the digital team here. I help moderate the forum and also our social media channels (check them out if you haven't already!). 

As you may have already noticed, our members are a great source of support and a really welcoming bunch. Please let us know if there is anything we can do for you or help you with. 

Happy posting. 

Kat


#15

Aye aye smoggy 

how's things with yourself this evening ? Am with you this forum is better than any group meeting cause you don't even have to leave the house , my walking is terrible drag on the left side no that I ever complain cough cough !! Am still working as a driver come dogsbody for a house builder aye working ! Another cough cough ah well that's all you need to know about me catch you later 

Ian 


#16

Hi Ian....

             I suppose Im a lucky one, Had to retire from fire service in 2000 with spinal probs, and perhaps Ive had PD for longer than I thought as alot of my symptoms I put down to my neck trauma. So my symptoms at moment are trembling left hand, loss of sense of smell and forgetfulness........

Did I say forgetfulness?


#17

Aye smoggy 

that's the way my PD started left hand shaking , I wish I lost my sence of smell my dog farts a lot and boy can he no half make some stink ha ha .take care ma boy 

Ian 


#18

Hello smoggy,

i started with complete loss of taste and smell. Also trembling of right arm. Get extremely tired lately and yes a bit forgetful too but not sure if that's just my low mood at mo. I work part time and seem to manage but some days better than others.

Take care, Sue


#19

Hi Sue


I don't think i have ever spoken to you directly so hello! I have noticed a couple of posts where you refer to having a low mood, yet another symptom of Parkinsons or reaction to the condition. Generally this thing we all have starts from the top and works its way to your toes so it is bound to get you down at times. I am a bit of a weirdo in as much as my shower time in the morning is my depression time! I talk to myself, cry a little get cross so by the time i am washed i feel so much better and i can begin my day. I feel lucky that i can begin my day plus i know that i could be a great deal worse than i am . There are some of us on here who have more progressive PD than i have so i don't wish to sound ike it is a walk in the park, we are all so different.


Feeling lucky is a strange thing to say my friends say, I have 3 conditions all of which i cope with the best i can and quite well i must say. I have Crohns disease which i have had since my early 20's and had a large chunk of bowel removed, i have PD and 2 yrs ago had thyroid cancer and had all that removed and treatment. Having my fair share of rubbish to contend with strangely enough has its challenges and that is how i look at it, A challenge to overcome and come through the other side. When i was told i had thyroid cancer the other two conditions seemed to fade into the distance, because this one had the potential to finish me off, but i am here so I am lucky!

Feeling low and depressed is something that can turn you upside down, as we all know this brain of ours is a powerful thing so you must talk to whoever is treating you for your PD, you have enough to contend without feeling miserable too. Your photo paints a different story, lovely pic


I do babble on a little, i dont wish to sound clever i just know how i feel and with my experiences and hate to see others having a difficult time.


Take care


Rachel


#20

Aye barny 

I've a tear in my eye thinking of you being upset in the shower , lexi is my twin and a nice person who's just hit a wee low she'll snap oot o it yet or else I'll be doon to sort her oot sue you have got to learn to slow down your health comes first . On a lighter note when I get into the shower l sing love me tender  ( elvis ) whilst breaking wind you remember that when your in the shower and always when you go for a shower ( happy barny ) o yes 

Ian xx