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just got diagnosis of Parkinson's Disease

Discussion in 'Support Subforum' started by nowa minarden, Aug 17, 2020.

  1. nowa minarden

    nowa minarden New Member

    and feeling dreadful. The neurologist said that I have got a slowly progressing form of idiopathic Parkinson's disease and has suggested that I take mirtazepine for the insomnia and anxiety that are draining me at the moment...

    I had a DAT scan some weeks ago, and got the result today

    does anybody have any experience with taking that drug?


    And is there any hope for me to ever recover?
     
  2. TG957

    TG957 Beloved Grand Eagle

    Nowa, note word "idiopathic". It means that your symptoms don't seem to have clear origin, as far as doctors are concerned. There is a possibility that your symptoms are TMS. Even if you go on those meds, you need to remember that anxiety is treatable without meds, and dozens of success stories are evidence to that. Eventually, you should be able to take control of your anxiety by means of meditation and mindfulness. Your symptoms are slow progressing, and that is another good news!
     
    TrustIt, nowa minarden and plum like this.
  3. plum

    plum Beloved Grand Eagle

    nowa,

    I am so sorry to read this but yes, there is hope and a great possibility of healing.

    As @TG957 points out your diagnosis is idiopathic and slowly progressing. This is good because there is much you can do. If nothing else you can ease the TMS overlay which will lessen the severity of your symptoms.

    I echo my dear friends encouraging thoughts regarding anxiety and to this I add my own encouragement that you read Howard Schifke’s book “Fighting Parkinson’s and Winning”. At its emotional heart the book is entirely centred on the psychological healing we advocate here. To this Schifke adds a measure of Traditional Chinese Medicine in the form of Chi Gung and meridian work but even these rest on healing our emotions.

    Fighting Parkinson's...and Winning: A memoir of my recovery from Parkinson's Disease https://www.amazon.co.uk/dp/1979354022/ref=cm_sw_r_cp_api_i_Rl8pFbP40KFPN



    Take some time to make peace with where you are. I know how hard a diagnosis can be but do rest assured that it is a condition that responds very well to care (and self care).

    God Bless you my darling xxx
     
  4. HattieNC

    HattieNC Well known member

    And, here's the link to the book for those of us in the United States. Thank you Plum! I will be reading this since my father, father-in-law, and mother all were diagnosed with Parkinson's. My mother's diagnosis was late in her life and was slow progressing, so it didn't have a significant impact on her quality of life.

    https://www.amazon.com/Fighting-Parkinsons-Winning-recovery-Disease/dp/1979354022
     
    nowa minarden, plum and TG957 like this.
  5. plum

    plum Beloved Grand Eagle

  6. nowa minarden

    nowa minarden New Member

    thank you dear TG, unfortunately I am certain that my symptoms are not TMS "Most people with parkinsonism have idiopathic Parkinson’s disease, also known as Parkinson’s. Idiopathic means the cause is unknown." but I am reading a book that I think you recommended a while ago, "Reverse Parkinson's Disease" by John Pepper and feel more hopeful..
     
  7. nowa minarden

    nowa minarden New Member

  8. BloodMoon

    BloodMoon Beloved Grand Eagle

    Last edited: Aug 22, 2020
    nowa minarden likes this.
  9. nowa minarden

    nowa minarden New Member

    Dear Plum,I have begun to reread his book and have decided to try and do what he recommends, keeping only the exercise recommendations for brisk walking from the John Pepper book . I am feeling a bit bewildered by all the exercises for the liver and kidneys that are recommended but will try and build up gradually to doing them all.
    I hope you won't mind if I ask you if your husband did all these exercises, and if so, how did he cope at the beginning? Thank you so much for telling me about
    this wonderful book!!
    xxx
     
    plum and TG957 like this.
  10. nowa minarden

    nowa minarden New Member

    Dear Plum, I HOPE YOU SEE THIS POST!!
     
  11. plum

    plum Beloved Grand Eagle

    Honestly, he hasn’t done them. The main aspect of the book that he embraced was the TMS kernel or the emotional work.

    By way of explanation, long before Schifke, we followed the work of a Naturopath who wrote about the importance of ‘relaxing the inner nerves’ and resolving emotional wounds. This man is a Christian and there was a weave of beautiful encouragement towards forgiveness, trusting God and the infinite intelligence of the body to heal when given the right circumstances.

    My husband took these aspects to heart and over the years he has transformed his personality. He comes from a dysfunctional family so there was a lot to let go of, and over time his mother and his siblings have caused us tremendous heartache so the emotional healing has been ongoing. I believe this is true for many people here.

    The other healing practice that he does everyday is breathwork. He is a singer though and this comes as naturally as ... breathing.

    This is a key point sweetheart. You need to find ways of relaxing, of sinking into pleasure and of feeling good that suit you deep into your bones. My hubby has little time for complicated routines or physiotherapy exercises but will happily craft his own nighttime yoga or energetic work (sex magic! :) It’s a real thing). I think @TG957 has written about this on the forum regarding Qi Kung, (Tamara, am I having a moment or did you say you went with flow rather than following precise instructions?).

    If he’d been diagnosed today I’m confident he would have attempted the exercises and tweaked them to suit himself. Remember that Schifke calls it a Recipe and like all recipes worth their salt, his protocol allows for some personal flavourings.

    My best advice is to devote yourself to learning how to relax, physically, mentally and emotionally, and to nurture positivity. @miffybunny has written some golden posts on this of late and they are worth printing out and reading every day. Really, do this with anything that inspires you.

    For 16 years we’ve had pages of healing gems taped on the hallway wall where we see them every day. Some examples are “watch the sunset and focus on one thing you are grateful for today”, “gratitude that I have released old traumas, let them go and moved on to a new chapter in life”, “smile”.

    At the moment he’s re-reading “Peace is Every Step” by Thich Nhat Hahn which is a goldmine for such inspiration.

    Go slowly. Go gently. There’s no need to overwhelm yourself.

    plum x
     
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  12. nowa minarden

    nowa minarden New Member

    i will try, but feel hopeless because I can't do anything about my family trauma, I have a brother who is schizphrenic, I haveen't seen him for years, not since he came out of brodmoor prison where he was sent for arson. and I have a youger brother who doesn't speak to me ad I don't kno w where he lives, and a sister who has't spoken to me for years

    and I am so stressed at the moment .. what on earth ccan i DO?
     
  13. plum

    plum Beloved Grand Eagle

    You can’t change the past but you can change the way you feel about it, and more importantly you can heal the hurt and reactivity a harmful family leaves in its wake. You don’t need to know, speak to, or have anything to do with your family for this because this is entirely about you my darling. The single most powerful thing you can do right now is be nice and kind to yourself. Many, many people here have to learn this and it’s why I mention self-care so often. It’s vital for everyone but is absolutely imperative in circumstances such as ours.

    The best and most immediate remedies are:

    Nature.
    Some days I can’t go outside but even then I like to lie down on the settee and cloudwatch through the window. (a small joy of living in a block of flats).

    Story.
    Real books and an Audible subscription are pleasures I relish every day without fail.

    Humour.
    Watch comedians on YouTube.

    Relaxing, ambient music and/or guided meditations.
    Again, YouTube is an amazing resource. This guy has some lovely stuff.

    https://www.youtube.com/user/ILoveJuicyShow

    There’s no magic bullet. I wish there was but in time you can learn to love yourself into a good place. Self-compassion and patience are the bywords for this. Maybe chatting with someone at one of the Parkinson’s charities may help too. A diagnosis is crushing and some kind soul there may be able to help you find a way through this challenging time. Alternatively you could ask for a referral to a clinical psychologist who works within a Parkinson’s/rehabilitation department. There are some wonderfully supportive people in the field so don’t feel you have to endure this alone.
     
    Aimee88, Lainey, BloodMoon and 2 others like this.
  14. nowa minarden

    nowa minarden New Member

    Thank you again, dear Plum xxxx
     
    plum likes this.
  15. TG957

    TG957 Beloved Grand Eagle

    @plum , as always, you express complex concepts so poetically - bravo!

    To answer your question, yes, I do practice Qi Kung ( aka Qi Gong, aka Qi Gung ) as a meditation practice but also as a physical exercise. With Qi Gong I am more likely to follow instructors, but there is such a wide variety of schools of Qi Gong that you literally have to search for what suits you the best, and you are likely to find that one that resonates with you. However, movements are just movements; on top of movements, there are thoughts and mindful work. I came to view Qi Gong and yoga as a meditation, when movement actually helps to stabilize the mind. Your husband developed routines that combine movement and mindfulness, which makes them a perfect exercise of mindbody.
     
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  16. nowa minarden

    nowa minarden New Member

    so what should I do? I am overwhelmed with the task in front of me...
     
    plum likes this.
  17. TG957

    TG957 Beloved Grand Eagle

    Follow @plum's list of recommendations. It is a good one. Start from the top.
     
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  18. BloodMoon

    BloodMoon Beloved Grand Eagle

    This is a great idea...and is so important for our mental health. I'm stuck indoors most of the time, but I feel so much better, and refreshed, when I view nature. Many a morning I start the day doing a virtual walk with 'the taxi driver'. His videos aren't always in focus and are rather amateurish, but for me that's part of their charm and it makes my brain think that I've actually been on the walk with him https://www.youtube.com/user/thetaxidriverj. I went for a circular walk around Scarborough today, whilst lying on my day bed.
     
    Last edited: Aug 30, 2020
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  19. plum

    plum Beloved Grand Eagle

    Oh my heart! I have such warm memories of childhood holidays in Yorkshire (where my mum’s family hail from) but have not been there for decades. I think a virtual trip is in order. Thank you for the link xx
     
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