I was just thinking back to when I was told that I had Parkinsons

I had previously been told on a number of occasions that I definitely did not have Parkinsons that when a consultant told me different I was completely devastated. He just said you have Parkinsons, without any sympathy or explanation as to what may lay ahead.

I changed my Consultant, but the damage was done. At that time I had a close relative with the same condition, but a lot further down the line than I was. I was terrified. My new consultant took the time to explain things to me and I have now accepted my new companion.

How different things could have been for me; and for others, if things were explained to us earlier. I will never forgive that first Consultant.

I hope that no one else has a similar experience.

25 Replies

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  • know the feeling

    Alan

  • Mine was similar. I had been to many drs. had many tests and then this Dr. seemed excited that he figured out what others couldn't...I had PD.

    Also spend a lot of time in unbelief. It took my husband a longer time to believe it.

    I also feel if it had been explained to me that each of us are different and they could not predict how it would effect me I would have felt better.

    The only person I have seen who has PD is Michael J Fox. I saw him on TV without meds. I felt like the wind had been knocked out of me.

    I agree that the method in which a person is told is VERY important!!!!!

  • my first neuro was horrible. my wife came with me to the second appt. and agreed with me that we had to fire his ass and get soemone serious. and we did!

  • Similar situation Court. Told coldly that I had PD after 1 1/2 hours paid for consultation and given a leaflet which was worse than useless. Couldn't even use it to wipe my bum; the card was too hard. No offer of councelling. Just get on with it. I lived in Leics at the time. Could see consultant every 6 months for 2 mins. Bloody treadmill. NEXT! This, it would appear having read many blogs, is the norm and it is wrong, so wrong. I have since moved back to Scotland and I have documented the wonderful change in attitude of medical staff so I wil not go on about that. I am one of the lucky ones.

    Parkinson's UK created a new set of logos about 2 years ago. I went to the meeting in Stirling when we were presented with the new "theme". Slightly sloping pale blue logos. Fate accomplie. The arrogance of the PD UK people was just as cold as my original diagnosis/consultant. Career built on other peoples misery and paid handsomely for the priviledge. The thing that got most of our group was that in the presentation at Stirling University was the fact that we had not vote or say in the matter. This is what your getting - like it or lump it. Superior numpties. Our contributions pay there inflated salaries.

    You can tell when people are genuine and those who are doing it by numbers.. It apprears that like most organisations they are in it for what they can get out of it. So saf. End of latest rant.

  • Sorry last line So sad

  • hi sue

    i too had diffiyclty getting a diagnosis, of PSP, in the end

    it was suggested that it might be Parkinsons by my doctor in a different specialist field and i had an mri scan for ENT problems - did not show anything up but saw a neurologist over 18 months period

    still no diagnosis and then ii paid i to go and see a neuro who gave me the diagnosis of PSP - told me anout the Psp website and gave me lots of info ron how to deal with this

    i haveb been upbeat ever since diagnosis(DEc 2010) as it explains so many fo my problems

    and i may only have a couple of years left but will do what i can with them

    all is now in place except the \power of attorney- even selling my flat and moving to he ground floor

    so i now need to see the neurologist again and get some questions answered

    IProblem is my 6 months appt was cancelled for last week and put back to enf of JUne!

    the PSP nurse is trying to brign it fwd fo rme

    love jill

    watch thsi space!

  • I FORGOT THE :-)

  • Still trying. I WILL master it.

    I don't know how you remain so positive. You really are an inspiration to us all.

    Take care

    (pretend smiley face)

    Sue

  • dear jill you are just so brave and amazing - i love you xx

  • thanks sha

    but u are hte same

    i know all oru problems are different apart from on thsi site and the PSP site where we cna all vent our feelings

    Love jill anda :-)

  • I had very similar occurrence. The Dr came in and said I have PD the left w/o saying or explaining anything took a while but I have replaced him and looking fwd to new nuero

  • Very similar experience!

    I now go to one of the best neurologists in the country-in Boston-a two hour drive- but worth it, and after 2 DBS surgeries, and the hell of finding a good programmer, I am finally stable. People say I am "brave" and I appreciate all the complements, but always feel like saying "you would be brave, too".

    If you do the research and find a good medical team, you will be much more stable. I have to go on a plane ride to get to my programmer, but she is brilliant and I consider myself so lucky. "Accomodate the disease but never give in to it." I read that somewhere.

    And my couples counselor recently said he found me "strong, stubborn,

    and willful". And I said back to him, "walk a mile in my shoes, buddy". He repeatedly focused on me with those words. When friends hear this, ALL of them say those qualities have served me well. To all of you: be strong, be positive.

    Good luck to you all——

  • Lovely to read such a positive post. You are so lucky, well sure it was not just luck, to have found such an excellent consultant. My original consultant recently retired. I liked him a lot. I have seen his replacement when she was his registrar and she seemed good. I am supposed to be seeing her when I next go, but quite often find I see a registrar.

    Suppose that it is just luck of the draw when you are part of the NHS!

    If I am not happy, will try to find another consultant. You have proved that it is possible if you try hard enough.

  • I was told quite bluntly but appreciated his honesty, no beating around the bush. Yes it was a shock to hear and he did his best to explain it to my husband and me but my issue is this:-

    How receptive are you to all the information, seconds after receiving news like this? I think after diagnosis there should be another appointment a week later to discuss the condition, meds etc followed by monthly appointments for the first year when hopefully the patient has come to terms with it, asked all the questions they need to ask and become settled on an initial course of treatment. I have spend my 1st year since Dx trying to adjust to first mirapexin then Requip without much success. I still haven't seen my neurologist since Dx, just a registrar (who looked about 12 and who kept having to run out of the room to find the answer to one of my questions!)

    I had to use my PD nurse (thank god for her) as an intermediary when i needed advice and no matter what my difficulties were the same answer came back from the Neuro "keep increasing the tablets". Eventually after suffering hallucinations, visual disturbances etc another neurologist (mine is on holiday) has said " reduce the tablets " !!!!( again without seeing me ) I am rapidly losing confidence in the neuro's.

  • hi al

    yes i htink a follow up appt is really essential like Caroline says in the post above

    it is difficult 2 take in all the info

    i had paid to go and see the neuroliogist and wrote him a long letter and paid again to c him 2 have questions answered

    which he did

    love jill

    :-)

  • I also had a similar situation. I was referred to Dent Neurolgy by my primary. They had me go for an mri before my first appt. At that appt. I saw this kid who put me through these simple little tests....walking on my toes, touching nose with fingertips etc. Anyway after we went through them, the kid (I swear he couldn't be more that 16 years old..lol). He says you have Parkinson's and walks out of the room.. When he left I waited for the real neurologist to arrive. He comes in and confirms what the kids said and schedules me for a year later. I saw him first on 6/8/05 and the next appt was supposed to be for 6/6/06. A week before the appt they call me and cancel. New appt for 7/6/06 and guess what?? A week before and they cancel that too!!! Now, I'm really getting agitated because I was supposed to go on vacation with my son to Ocean City in Deleware and I can't go because the new appt is while I am supposed to be away. So that I could still go with my son, he buys me airline tickets so that I can go and not miss the appt.. Now, I hope I'm not rambling but once again they cancelled my appt. The plane tickets are non refundable and I was furious with the Dent people. I told them they could F**K off and I found a new neurologist.

  • Our first appointment was with Dent. I wanted to change sooner but my husband said to give him a chance. They messed up big time and we changed to a movement disorder specialist with UB Neuro. Big difference.When he was in the hospital last year and suffering a reaction to the anesthesia, the doctor himself called me at home to reassure me.

  • I got my diagnosis on my very first trip to the neurologist. After watching me walk, etc....he bluntly asked me what I know about Parkinsons. I said Michael J. Fox, he preceeded to hand be a script and a phamplet and said I will see you in 6 months. I left in a daze, somewhat releaved to have a diagnosis but yet in shock. I went to a support group the next month and most everyone there was much older and in the advanced stages of P...I cried and cried when they asked me to talk. The only thing good was that I found out from them that they all hated the neurologist I went to so I emediately got into someone new and I love him. Very nurturing and compasionate and explains alot to me, makes a world of difference.

  • Hi

    I think many of us who had their diagnosis have experienced the same. Of course, I was shocked and found it difficult to understand what it meant to have PD. Had only heard of PD as a disease very elderly people could get. Not until I met a specialist in PD, I knew what my illness meant for me. Now I've had PD a few years and live a good life with all my

    Best regards

    Mr Day

    Sweden

  • Exactley the same experience,it seems neurologists need a bit training in people skills and to work on their arrogant manner it seems this sort of thing is a regular occurrence.

  • OMG.....did these people get their license to practice out of a cracker jax box.............LOL????? The diagnosing neurologist--watched me walk, said my right arm did not swing when I walked---='you have parkinsons and it is not hereditary'!!!! Well that was interesting as my maternal grandfather, his son both had it, my mom had Lewy-bodies dementia and many symptoms but no actual dx, recently found out my maternal grandmother has a niece with PD. F/U visits with this bozo were every 6 months----put stethescope lightly on 1 carotid, took my BP, watched me walk and parting words were see you in 6mon!!!! Well fortunately for all he left the state almost 2 yrs ago...........his partner brought in a very knowledgeable PA----had my first neuro exam finally after 3 yrs!!!! I am currently in a study program with a MD from a Movement Clinic & he has agreed to take me on as a regular pt.------I like the PA and have been satisfied with his care but I know sometime down the road as the PD progresses having an MD in the Movement Clinic will be to my advantage----I believe strongly about pt. advocancy and who better to do it for but...yourself. Also feel sensitivity training should be added to all medical training programs----time to get off my soapbox......have a great day all!!!!

  • I was seeing a psychiatrist for "anxiety" around the time I was diagnosed. When I told my psychiatrist that I was diagnosed with Parkinson's he said "you don't have Parkinson's you have anxiety". I thanked him for curing me and never returned. [ I love telling that story! ] I've gotten more out of coming to this site.

  • I went on for over ten years being led to believe it was all in the mind.

    Then suddenly a blood test after feeling unwell.

    I was sent to a neurolgist and told nothing. except to wait ten days and go see my GP.

    Two weeks later back at the GPs he told me the result of the blood test.

    Diagnosed with Gilberts syndrome, and the neurologists diagnosis, he said was Parkinsons.

    and we will put you on Madopar and increase it steadily over a few weeks.

    That was it, no information, nothing.

  • Hi, I didn't realize there was a "blood test" for Parkinsons.. Is this only in the later stages? My husband is 61 and had a panic attack last year, but he also has bad knees and bad back, so that's why I keep thinking he is walking stiff. How is the medicine working?

  • similar experience: with added advice from the neurologist not to research PD on the internet, mostly bad information he says. I researched, I cried, I researched some more, I accept, I learned, I selected my "treatment" choices on my terms. I value HU - PM and new found friends

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