I have found this site a lifeline

Since discovering this site my whole outlook on life has improved.

As I wake very early, I check my e-mails and always find lots of interesting comments. I have also come to understand that there are an awful lot of people with Parkinsons, albeit with different symptoms and at different stages, some young, some not so young.

I now feel not so alone, but part of a community. Someone always knows the answers to questions and understands exactly how I feel.

I was wondering whether anyone else has found it so helpful and would like to post their comments.

Sue

45 Replies

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  • I too find this site fantastic help. I also can feel lonely and very down at times then I log onto here and instantly I'm cheered up by all the comments. I've just heard from the DVLA, they are revoking my current driving licence with all its entitlements and replacing it with one that only lasts for 3 years. As I drive for work I am now worried about if my employer is going keep me on (I drive a minibus and this is one of my entitlements on my licence I may lose!).....MORE STRESS!! Anyway I'm going to have a talk with my employer tomorrow morning and see what they say, hopefully they'll keep me on in another capacity but I worry they won't!

  • so sorry andy to hear of your worries but ut sounds like you have a case as drew says -- xx keep smiling :-)

  • Hi shasha, thanx and yes I`ll keep smiling. I`ll fight my employer all the way if they try to fire me. :-)

    My current driving licence entitles me to drive a minibus and this is what i currently drive for my job working with adults with learning disabilities...but.....I am always with an escort, who by law (as i understand it) we have to have on the bus for the safety of staff and students alike...so....I am going to suggest to my employer if I`m unable to legally drive the minibus anymore then I can at least be kept on as an escort....I`ll keep you posted as to what is said. I`ve got until 14th March 2012 to hand in my current licence. Good news is I will still be able to drive a car and my entitlement to drive will be reviewed in 3 years time... with a medical review...so fingers crossed!! :-) I`m currently saving hard to buy a cheap little car

    Have a great Sunday!........beautiful sunny day here in Sheffield...but cold xx

  • in france it is 7 degrees plus and just getting sunny so you too have a great sunday

    love sha xx

  • Good luck Andy. I hope it all works out for you.

  • This happened to me when I was first diagnosed. I was really worried, although I only drive when needs be. However, the DVLA contacted my Consultant, and after spending a lot of time on the phone chasing them, I had my licence renewed for review every three years. No problems so far.

    Of course, I understand your worries about your job, but there are no restrictions on my licence other than the time one so hopefully when your Consultant confirms you fit for driving, your employer will be understanding.

    If the worst comes to the worst, surely they are not allowed to get rid of you for having health problems. There must be an Act somewhere that covers this.

    Good luck tomorrow. Will keep my fingers crossed.

  • Hiya, as Drew said there`s the Disability Discrimination Act...at least I`ll still be legally eligible to drive....I`m just gonna lose the C1 & D1 entitlements on my licence, which covers driving 3.5 ton, 7.5 ton vehicles and Minibuses...and as I drive a minibus for work, I`ll lose the entitlement to drive it (see my reply to shasha)...but hopefully they`ll keep me on as an escort....they will have one hell of a fight on their hands if they try to dismiss me for that reason alone!!

    Anyway no sense in worrying too much about it now until I`ved talked to my employer.....for now...its a beautiful sunny day so enjoy! :-) xx

  • AndyC, Good morning. Disability Discrimination Act.

    This act of parliament was brought in to protect people such as yourself who are discriminated against on the basis of a medical condition. If your employer cuts up rough, I hope not, then contact Citizens Advice Bureau for help. Good luck tomorrow

  • Hi drew410, thankyou for that information.

  • I agree. This is a great site. I also use a site called allaboutparkinsons/forum which is similar to this site. I have made permanent friends via that site and my wife and I have visited them (UK only). Because of our condition it is great to know you can talk to someone who totally understands. It's like an exclusive Club which you wish you were not eligble to be a member of.

    I have a mobility car. Very nice but I would be over the moon if I could kick it into touch and swap for a cure, any day of any week.

    I can recommend Skype for communicating one to one. If you are not familiar with this program all you need is a webcam. The software is free to download and you can chat for free on the internet face to face. You can even conference and have several people on at the same time. Like when you are having a party!

    The sun is shining here so off to get the sunday papers

  • Hi Drew I`ll look into allaboutparkinsons/forum sounds great. I`ll look into getting a webcam as I dont have skype at moment.

    DVLA say I can still legally drive but it will be reviewed in 3 years time with a medical review.....so at the moment I`m saving hard to buy a cheap little car...fingers crossed

    Have a great Sunday, sunny here too in Sheffield :-)

  • Hi Mate,

    sorry to here about your licence, as if we parkies dont have enough to contend with, have you tried to claim DLA, its non means tested and if you get the higher rate you can apply for a mobility car.

    i am also ona restricter licence however i work for myself so no employer to deal with.

    I have a spare web cam if you want ill post it to you

    Al

  • Cheers mate, looking at the forms I dont think I`m disabled enough to claim DLA...I`m not dependant on anyone to do things for me at the moment and my tremor is only very mild...and although I only work part time, at moment I earn too much to claim Jobseekers Allowance! Anyway thanx for the offer of the webcam I`ll message you my address and mobile number

    Have a great sunny sunday! :-)

  • cheers

  • tried to message you but the whirly thing eeps on going round

  • Bloody technology eh? lol :-D

    No worries Sha :-) xx

  • I love this site and look forward to its daily dose of support and understanding.

  • Hi Sue,

    i also find it a life line, its the first site i go to when i logg on and the last one i see befor i try to get some sleep, as you know i dont sleep well so iam on here just about every night through the night, exchanging views with other fellow parkies who cannot sleep or talking to our pals across the pond.

    have a good sunday,

    i am going to the pub later to meet some pals for a rant about the going ons at Rangers our imbatteld football team

    Al

  • Hi Al, I had major sleeping problems last year. Saw my consultant who prescribed Mirapexin (Pramipexole is generic name). 2 days into the meds sleeping fine. Still am. There may be side affects like in most drugs but worth mentioning to the medics if your lack of sleep is getting you down.

    Up the 'gers. Something fishy with these directors. Must be magicians making all that money disappear.

  • Magicians more like bankers and i am very careful how i say that ,

    any way had a good day hope you had too, where abouts in angus are you , i have a radio station in dundee (Wave 102) and family in Arbroth , sorry about spelin iam crap at this ,

    Al

  • We live in Letham village 4 miles from Forfar. Nice folk. 12 miles from the sea and 12 miles from the Glens. You mean you own the radio station? I'll tune in. Is that how you came to meet Kevin? Saw his show this weekend. The guys great. The poster with "Wee Mental Andy" was a great idea.

    I was brought up in Arbroath from age 6. Was born in Aberdour. 12 years in RAF after I left school. 21 years with British Gas (National Grid Control Room), 11 years working in golf shop semi-retired. Got PD. Gave up working. My life in a few words. It's gone just as quick as well. If you come up this way gives a bell and we can meet for a chat. Always try Skype. Glad you had a good day. RAF taught me to type - like riding a bike - never forget! Cheers mate

  • I know Letham

    we have family not far from you , funny thing i was also in RAF served with 2 field sqd RAF reg for 15years, we visit Arbroath very often Laraine's sister lives in cairnney cresent and her partner Sandy is ex RAF also. small world

    im on skype Alsh59 talk soon

    Alan

  • Not easy being in the "Rocks" if you don't mind the expression! Small world indeed. I'll set up Skype. Your wife is Laraine my wife is Elaine. Be well

  • Hi , I have radio stations, not a rich guy , just more debt than any one i know, HAHA,

    next time we are Arbroath i ll give you a call and meet ufor a pint , ill message you with my cell number

    Al

  • Ta Al

  • glad mirapex is working for you. beware of compulsions tho

    There once was a parkie from Spain,

    who was heard to his girl to explain

    I take Mirapex,

    so I must have sex

    again and again and again.

  • I wish!

  • good one

  • Im new to this, but you gave me a good laugh!! I was once on Mirapex & experienced compulsive behavior.. Ugh! It wasn't shopping.. Let's just say " all bets are off" hint ( my hubby said if I developed compulsive shopping, he'd have to develop compulsive returning!LOL) I'm off it now & that's working for me ( I was on .25/day)

    I find that besides exercising, laughter is great medicine!

    :)

  • Sue---happy gloomy Sunday from western NY state-----I find this site to be informative, supportive and very interesting. It brings people from all over the globe to ask questions, share ideas and experiences, give each other moral support because who better from than someone going thru it too, a place where we can share the good and not-so-good days with, help each other chase the doldrums away, appreciating the opportunity to 'learn something new each day''

  • I agree. This is a great site.

  • I agree completely with cowmom. I couldn't have said it any better! Great site! Great people!

  • Here's from sunny AZ currently 48degrees at 5000ft elevation and clear blue skies.

    No doubt about it for me... this site is therapeutic. I visit frequently and am about to lose my poetic virginity with posting my first poem.

    It has been both uplifting and discouraging. I feel stressed knowing what others are dealing with and probably will experience myself. But the insightful courage of all buoys me up.

  • good job on your poem...I answered you on y our post.

  • I envy the temperature you have at any elevation. Unheard of in Scotland where we are born with bluey white skin due to the cold and damp. Well, I may exagerate a wee bit. The countryside is green though and the air cleaner than other parts of the world.

    Regarding the "probably", you may not have to experience what some of us have or have not been through. I hope it is so for your sake. I look forward to your first tome. I do like this site. I have contributed on another sight for some time now but this is the best of its type. Folk seem very honest. A breath of fresh air in this day and age. Be well etterus

  • i visit the site daily. usually I am glad, sometimes I get sad. or angry at the poor response from society.

  • I'm new to the sight, but feel at home here already. No one completely understands but other Parkies.

    Cold, but sunny here in Indiana today. The sunshine helps my mood and aches and pains! Everyone have a good day.

  • thanks for your kind words MaryAlice---this is what makes this site so special---we all know what we may need to say or hear at any given moment and when your thoughts/words reach out and touch someone enough for them to mention you by name well it just doesn't get any better than that. U-N-L-E-S-S it's a cure for this damn disease....but in the meantime......we're in this together!!

  • hi sue and all

    hey its tuesday (*pancake day) and i missed all the comments so far made on this blog

    i agree it is agreat site for fun /serious talk/ gettign qus answered and just to know ther eis a whole universe out there with Parkie people

    I hae PSP a rare type of parkinsons (different part of the brain affected and not loss of dopamnei loss of tau)but htsi adn thePSP site r great

    love jill and of course a ;-)

  • Hi Jill

    Missed your posts for a couple of days now. I have cheated this year for the first time and will be using a ready made mix for my Pancakes. Just being lazy. Probably will be nicer than the one's I make anyway.

  • The comments posted above only go to prove my opinion of this site.

    If you need to know anything, someone is sure to know the answer. What more could we ask?

    Sue

  • I love this site!

  • I too am new to the site, but already depend on it daily to encourage me that ..........

    I AM NOT ALONE!!!

    I love each of you!

    Penney, from cloudy Florence, Al.

  • just introducing myself I love all your posts

  • Absolutely!

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