How do people keep going?

Thank you :-) and im actually in an unexpected situation, two great men who ive known for years have told me they like me, even though they know about my health stuff, they like me anyway! Obviously im not gonna rush into anything, ill just hang out with both of them (separately hehe) and see how it goes. Im still wary that my problems will be too much for anyone to handle but having these two amazing guys interested in me has perked me up a bit!

big grin

               Hello Suzy

                                I am pleased, for you, but use caution and see how these guys react when you explain your troubles, "In sickness and in health" applies to friendships as well as marriage, dont pull any punches Suzy, there is one thing you should know my friend , have you looked in the mirror lately, you are a stunner Suzy and I am not trying to be, welll pushy, I am simply stating a fact, you are lovely to look at Intelligent lovely to look at, strong willed, lovely to look at, young  gorgeous, very very pretty. lovely to look at in fact if anyone decides to take you on, and  I mean that in the nicest way, well if it  was me I would not want you out of my sight, and would relish the company of such a beautiful young Lady I know this post probably reads like a poor sad old git whose youth deserted him years  ago, and that would be a correct assumption SUZY,  but with age comes wisdom and I can tell you now and this is why I have not sent this as a personal message IfI Iwas single and 30yrs younger it would be my goal to have you as a friend partner and more,   look in the mirror Suzy, the mona lisa like Avatar, makes that famous painting by LSLowry,  PALE oops no not that guy, though I love his work, no it was Leonardo de Caprio, oh bu???R, da Vinci, you see the effect you are having on this sad but wise old git from Northumberland,  you are scrambling my 5 brain cells girl and if you can have that effect from a very small photograph I cannot begin  to imagine what it must be Like sitting in a nice quiet country pub, explaining why I think CATERPILLAR MAKE THE BEST 30  TO 45 TON CLASS OF 360s, or Educating you in the rules of CRICKET, OR EXPLAINING THE ONSET OF COMPRESSABILITY \AND HOW  TO  ACHIEVE MACH 1  2   3  4  AND FIVE, OR  HOW BLC   Boundry Layer Control made the Blackburn Buccaneer a superb Aircraft, especially when RR SPEYS   were  installed, as you can see Suzy  I  am  ALSO A ROMANTIC.

                                 I WISH YOU WELL SUZY ( and look in the mirror )


Hehe thank you Fed, your very kind :-) yeah both these men knew a bit about my health anyway, ive known one of them for 7 years and one of them for 10 years! Ive been totally honest about whats wrong and both were great about it, ive been out with both of them and it was fine. Obviously they havent seen me on a bad day though which is what I dread. One of them especially is really sweet, I feel hes way too good for me hehe, but he said he felt like the lucky one and always tells me im gorgeous (you've got competition Fed hehe) and hes a damn rock star, seriously! Hes getting well known here in the uk and especially in the US, id hate to be a worry on him though when hes got so much going on. But ill just see what happens...

Thats good news Suzy!  Glad you are feeling a bit better about things in general.  Take care.

Thank you Het, hope your ok too x


Its  not easy is it .   One thing I do and I think helps is have found a good therapist ... I tried three before arriving at the one I am with now.   I have to pay for it but if you can afford it it's worth the money I think .

 You can express yourself completely without fear of rejection ,  I am wary about how much I'm disclose to friends because I'm never sure who can take it and what is the appropriate amount of honesty .  It helps memake sense of what I am feeling and I feel more in control somehow .

I tried cbt as well  whilst useful didn't feel deep enough .

 Also trying to find things that I can do ( foreign languages / some walking / singing / writing / swimming ) and try to accept things you can no longer do ... at least as well or as often .

 Andy (Ojalahey)


Thank you Andy, yeah ive done CBT a couple of times but it doesnt really work for me, and I did councelling but she just listened and I dont need that. I do talk to people but dont often say everything cos it overwhelms them!

The point you make about overwhelming people is the same reason I don't express myself fully to friends very often and certainly not to acquaintances.

But that's my point about counselling , it removes the tendency to need to talk /burden friends.

 The first therapist I had I did not click with ,   the second was disturbed by my shaking (this was before I knew I had Parkinsons so she thought I was bonkers ) and the third therapist who was recommended by a friend (also a therapist ) has turned out to be very good.

 So if you're counsellor just listened and as you say you need something more than that ... I would suggest you could try another until you find one that works for you .

 andy (Ojalahey)

Yeah maybe I should look for a different one :-) I do talk about everything with a couple of friends who know about it all and have seen everything ive gone through over the years and my mum is very understanding luckily. I sometimes forget how crazy it must sound if you tell someone everything!

Hi Suzinola7

I think counselling is a great idea.  While you're waiting for an appointment, have you any interest in painting (as in art - not house decorating) or taking piano lessons or something else that you may be interested in

  I like going to Thai Chi classes.   The class I go to is held at our local Parkinson's Clinic and is especially for people with PD and their carers.

We have a cup of tea and a chat in the middle.  It is quite difficult to get some of the gentleman to go away from the chocolate biscuits to the second part of the lesson but the teacher always finishes the end of the class with relaxation.

Hope you are OK today -




         Hello Suzy

                           Andy was very correct in saying you have to click with the person who is about to learn all there is to know about you, and even things you did not know, Over the last 10 or 12 years I  have had about  five councellors, community mental health care visitors, and one Psycologist, and then the backup I have recieved from my PD specialists and all have been brilliant, the only regret is they all became great friends, I know thats not supposed to happen and from their point of view it was kept strictly professional and no part of the Hppocratic oath was overstepped, but its hard not to value the friendship so highly  when these excellent excellent women and men, well lets put it this way old FED would not be contributing to this forum, indeed I wouldnt be contibuting to life, I know I cant name names, but they do read this forum as its a valuble source of information, so if anyone of you reads this I am forever in your debt, I know thats just a figure of speech, like you are worth your weight in platinum, all of you, and for any one else who perhaps is not recieving the help you deserve, then shop around,these good people are out there, there is another aspect  which I must put across, and I dont care if it sounds a bit OTT, but I love these smashing great fantastic very very very  first class professionals , you know who you are, you saved old Fed and saved me  from dead, ( ??? I know I know !  )    but you fixed my head and allowed me to tread upstairs to bed, though I do have a stairlift ? installed by a bloke called, Jack, aaaah   you all thought I was going to say Fred or Ted or even Jed, anyway his name was Jack, his Grandfather, flew Lancs and was shot down by ACK ACK. he escaped capture and got back, but had hurt his back , so  became a Instructor, instead.

                     I  hope you dont think I am being disrespectful , after all it is a very serious subject,and nothing  could be further than the truth, I have the highest regard for every single one of you,and without the friendship and kindness you all show to me, and each other I would feel very sad, a sad old grandad and would feel very bad ????????you must think Ive gone slightly mad??? JOKE. sorry sorry, Im just in a good  mood, and it makes me want to behave in silly ways,also I have been watching Vic and Bobs show MONKEYTROUSERS on you tube, have a look, especially the STOTTS interviewing STING , DAMON HILL AND OTHERS,           I  HOPE YOU ALL SLEEP THE SLEEP OF THE SLEEEEPEES     FED

Thanks Casie, I dont do too many activities at the mo but I have been trying to just go out for dinner etc (trying to gain weight!) I used to be pretty good at drawing and painting and I did very detailed art and with the tremor I just cant do it how I want to anynore, and im not good at having to adjust! I have thought about trying to improve on my Spanish but my concentration is rubbish! Hehe thanks Fed, hopefully ill find a councellor I can get on with better

Hi Suzynola7

Hope you are Ok today (relatively speaking).  I was thinking about what you said and it seems like you are missing your painting.   Would you consider getting your paints, brushes, paper etc., out and painting in the modern art way - there's no mistakes that way - you meant to put a blob in the middle of the paper!   Just a thought.

Thanks Casie, yeah Ive thought about it but Ive never really been into that style, even if it is tremor friendly hehe. Ive never been an artist as such cos I dont come up with my own stuff, I just like drawing things or copying pictures etc, its a bit hard to do that in a haphazard manner!

Hi Suzynola7,

Are there six more Suzynolas? (You being the seventh.)

As well as having Parkinson's, I also do some work with Mind, the mental health charity. Your question - how do you keep going - is common there as well. As you probably already know, there are five common things people try and do to manage debilitating illness. 

1. Exercise - even 10 minutes walk each day.

2. Eat well - nourish yourself with nutritious foods not junk.

3. Identify your troubles but don't dwell on them - knowing things is good, worrying about them is bad.

4. Express yourself - art, emails, dancing. Anything that gets things out.

5. Look on the bright side - the hardest of all!

Like everyone else, I find it difficult to do all of them well all the time; but it's a good list to bear in mind when looking at yourself 'in the round.'

Hope things are improving for you now.


Oops, forgot the other one!

5. Do something for other people.


I try not to dwell on constantly feeling achey and breathless and then going to bed to do breathing exercises.  Sometimes I get involved in something which takes me away from thinking about myself - which is good.

I'm taking Apo-go infusion 24 hrs a day; Madopar 100mgs x 7 each day; Stalevo 100mgs x 5 each day; Amantadine 100mg x  3 a day; Trazodone 250mgs each day; Rasageline 1mg each day; Zolpidem 10mg each day; Fludrocortisone 100microgm each day and Clonazipan 500 microgms a day plus pills for other things!   

I don't think I'm despressed as such but when I go 'off', I feel miserable.  I've been trying to cope with this for 14 years now. 

I know I have to keep upbeat, busy and rest as well but it sure is hard. 

Best wishes,



Hi osian spray, thanks for your advice, luckily I do all those things already, but when I get really down I find it very hard to snap out of it. Im doing quite well at the moment though =)


 Hello and god morning Suzy.  I must look like one of the living dead when I am struggling to wake up in the morning, I really do feel and look terrible, in fact there have been two occasions when I was actually going  to die,I have protate cancer  which is been kept at bay with hormone implants but when I sink so low I thought  I have had it  and  the big C is about to take me out, or at night when my little mechanical friend Duodopa, is removed, I know I only have at the maximum 1hr before major changes hit home I deliberately test myself, by that I mean  I am supposed to take 1.25 (slow release  2) when or just before I go night  but  last friday?? or saturday I decided to see if it would be better to use oly the soluble madopar, I am always experimenting and its a case of some I win some I lose  well I lost big time,the soluble or QUICK STARTS are brilliant as they work fast and on countless occasions have rescued me, but although  they quickly get the cogs grinding away in Feds damaged brain they are just as rapidly passed through the system, so without boring you any longer about the whyfors,I will go straight to the effects, DISASTER ALARM, PANIC  I WOKE UP NEEDING THE LOO, TOTALLY PARALYSED, and I mean total, I began shouting  for my own  personal Angel,not that she could do much as I was facing the wrong way  my bed is up against the wall at  the left of me "lying on my back"  I was falling out of bed so many times and this cut those incidents by half now I will try and explain without upsetting myself again, as it will, first TERROR, (OH F?????G HELL WHAT  HAVE I DONE)  sorry but I am trying to convey my feelings  to you,Imagine, its 4.30 am I cannot speak the only muscles still operational were  my eyelids,and I need the loo, and remember, all other systems were offline  (OH FFFFUCRYINGOUTLOUD)  which is what I was doing, and eventually Mrs Fed appeared out of the gloom, looking more like the angel of death,in her  long very sexy (not)  nightdress she does not like being woken from her slumbers before  745--8.00 am and was unable to kickstart her compassion dept, its always the last to come on line if she is rudely torn from a deep sleep, WHAT DO YOU WANT!!!!!!!!!!!, I  was trying tto tell her that I needed, two more soluble and a normal 1.25 Madopar, but I couldnt speak, i could not make her understant, oh did I mention she is very deaf,and her audio sound magnification and augmentation  system was downstairs, THE  ASMAS, was out of action anyway as it needed a new battery,eventually  my  desperate message and cry for help penetrated her dulled senses but iinstead of help and compassion, all I RECIEVED WAS, NO YOU CANT HAVE THOSE ALL AT ONCE, we  have had this argument  75trillion trillion, times I have experimented "within safe limits" taking different combinations of drugs and know instintively my  precise needs if I AM IN DIRE STRAITS,,however I was not thinking about SULTANS OF SWING , or MONEY FOR NOWT, I eventually had to really shout hard at her and of course back  came "DONT YOU DARE LOOKAT ME IN THAT TONE OF VOICE" you know how it goes, so reluctantly she carried out my reqest, she managed to turn me in bed, this was very awkward as I was soaked by this time     (in sweat ) the soluble  drug I could only uptake with two straws and as I couldnt sit up when I tried to swallow the capsule it stuckin my throat,oh what fun we were  having so after downing10 pints of    H2O,  the capsule finaly plunged to its disolvment , now first of all Imade it to the loo, just, and second when my beloved realised eventually how terrified I had been, and appologised, she is one of these persons for whom there must be no change nothing unfamiliar,and despite being told every time we visit NTGH   Neorology, PD WING that I can medicate myself in emergencies just like the horror I have just described, she still reverts to type when I am in trouble, I LOVE my Lady more than the world, but she does make life awkward for me at times.         Kindest Regards Suzy,  Osian Spray, and Casie




Hi Fed .  

I'm so sorry that you are suffering so much and hope your doctors can find something for you so you can feel a bit better (or if feeling greedy), a lot better.

Thanks for thinking of me when you feel so bad.

Best wishes to Suzynola7 and everyone else in the forum.