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should I have the test for PARKINSON'S?

Discussion in 'Support Subforum' started by nowa, Mar 5, 2020.

  1. nowa

    nowa Peer Supporter

    my yoga teacher asked me why I was going to have te DaT Scan for atypical Parkinson's as the neurologist has already ruled out any drugs which I might take, so there is really nothing they can do if the result is positive. I would have to go to the hospital the week before the test to get 2 doses of iodine which I would have to take before the test, to protect my thyroid from the injection of radioactive tracer which I would have 4 or 5 hours before the scan.

    the whole thing has made me so anxious, and I am scared of the fact that I must stay away from children or pregnant women for 48 hours after the test because I will be radioactive. I am also terrified about the results.

    so would it be better to refuse this test and not to know, or will that also stop my TMS Progress, (anxiety has certainly stopped it at the moment)

    I could use some advice, because I have arranged to have ths test on 20th March, and need to tell the hospital asap if I have changed my mind.

    I suppose I feel that I SHOULD rule out anything structural.

    Any advice would be very welcome!
    Last edited: Mar 5, 2020
    HattieNC likes this.
  2. plum

    plum Beloved Grand Eagle

    Oh sweetheart, this is too much to bear alone. I’m so sorry you are enduring this. I’m not sure anyone here can really give you sound advice on this and even with my long time experience I’m reluctant to because I can only really attest to my husband’s condition and his diagnosis is Idiopathic Parkinson’s Disease.

    Have you spoken to anyone at one of the Parkinson’s charities? I’m not sure where you are in the world but your reference to Georgie leads me to believe you are in the UK. If so I know that Parkinson’s UK has patient advocates and these people can be incredibly helpful. You need to find one in your area and you may need to push a bit to get through. The frontline phone staff are completely useless. I’d never heard of them before last year when a Parkinson’s specialist nurse told me about them. (At that point I was losing my mind to the wretched austerity measures and desperately needed some support).

    I think you need some tangible support and rock solid information about what to do next and how to deal with this well.

    If it helps Howard Schifke didn’t take any PD meds so there is one great success story to draw strength, courage and hope from.

    Much, much love ❤️
    nowa and HattieNC like this.
  3. plum

    plum Beloved Grand Eagle

  4. nowa

    nowa Peer Supporter

    thank you, dear Plum, i sort of know that I must go ahead and have the test! i just have the feeling that I am doing everything i can to make my dopamine low, anxiety, insomnia etc etc. buut i hope that there s nothing that i could be doing to make the test positive, and if that is the case then I should just get it over with. i hope that you agree?
  5. plum

    plum Beloved Grand Eagle

    The uncertainty and fear surrounding the diagnosis are probably contributing more to your anxiety and insomnia than you realise. The very best thing you can do is learn to calm yourself, irrespective of the test.

    I asked my husband what he does to calm and he replied ‘breathing’. He is able to completely stop the tremor through breathing. A massive part of his recovery has been cultivating this peaceful state, this “beautiful oxygen-rich world”. He calls it a golden world of contentment and empowerment. The well-known doctor Andrew Weil refers to breathing as The Master Key to Self-Healing. There is an audiobook of that same name which describes various techniques but my husband created his own way through devoted practice.

    Having the test will give you an answer one way or the other. Once you know what you are dealing with you are better able to heal. ❤️
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  6. nowa

    nowa Peer Supporter

    thank you so much dear Plum.
    plum likes this.
  7. plum

    plum Beloved Grand Eagle

    Do you still paint?
  8. nowa

    nowa Peer Supporter

    i had just started drawing again but have stopped because of exhaustion caused by anxiety...
  9. nowa

    nowa Peer Supporter

    update: the appointment has been postponed because of the coronavirus. I have started to feel less stressed already!
    plum likes this.
  10. plum

    plum Beloved Grand Eagle

    Undoubtedly, a silver lining :)
    nowa likes this.

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