Hi, I'm a 54 year-old female living in the UK, and am pretty sure I have PD or Parkinsons Plus (my mother had Parkinsons Plus, and I have increased risk from taking amphetamines as a teen, plus from having ADHD).
Part of me is loathe to get formally diagnosed as I feel once it's 'official' it will become a self-fulfilling prophecy...to a degree, 'biology follows beliefs', and I want to be focusing on wellness rather than feeling like I have a doomladen diagnosis. I also want to avoid meds for as long as possible. I'm considering macuna but am not sure if it ends up with the same drawbacks as taking l-dopa meds?
Anyway the main thing I wanted to ask is if any of you are aware of links between flight/flight and especially freeze in the autonomic nervous system and Parkinsons? I have a little bit of training in the nervous system and trauma, and Parkinsons screams f/f/f to me. Trauma (and this can be 'little t' trauma) jacks up the nervous system and the sympathetic charge needs to discharge. The freeze state is the most tricky, as the sympathetic charge is battened down under the hatches, and covered by a state that can vary from immobility to vagueness, slowness, meekness, 'pleasing', forgetfulness, overwhelm, etc. - 'freeze' has various degrees to it. I wonder if the stoic, introverted personality historically associated with Parkinsons, might be an expression of freeze. Bear in mind that we know now that trauma can be passed down the generations via epigenetics/ gene expression.
These are not well formulated thoughts and I appreciate they could be criticised by sceptics; nonetheless I wonder if I'm onto something and if anyone else has had similar thoughts?
To this end, I feel instinctively that learning to regulate the nervous system, to notice when amped up and allow 'discharge'; to 'orient' to ones surroundings (the orientation response is switched off by trauma and this is very dysregulating to the biology), and to find pleasure and joy in the everyday, are really important to the healing process. And that if we're doing things like exercise to combat PD, that this will be most effective if not done from stress, but from pleasure - if we look to find the enjoyment in it rather than experiencing it as a 'have to' or chore.
Any thoughts or experience with this?
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Reetpetitio
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Hi Reetpetitio, I don't have any input on fight or flight, but I agree with avoiding a diagnosis. I liken it to Schrodinger's cat. As long as I don't open the box, the cat is both alive and dead.
In the meantime, I think it is useful to investigate and do all things within reason that could slow or stop progression.
Good luck and welcome to the group. You may want to join the Zoom calls MBAnderson is so nice to host:
Thank you. If I don't come regularly it's just ambivalence about how much I want to identify as having PD at this early undiagnosed stage (beliefs about what you focus on & identify as growing, etc)
I recommend Gary Sharp's 'Outthinking Parkinson's' posts. Very much on your line of thinking. I do find this topic interesting as since childhood my reaction to frightening situations was to freeze or even collapse while my sisters would run away, and I'm the one who has PD now at 53. Food for thought. Good luck whatever path you decide to take regarding diagnosis.
Thank you, I'll check that out. I think I came across him when googling for my mother, years ago.
My mother also had a 'freeze' response - I remember her saying how she was unable to get any sound out of our mouth when we were burgled. And when she was a child she had key traumas where she had to submit and freeze. Shame is very toxic and these childhood events created a lot of that. I do think we're wise to look at detoxing our minds as well as our bodies. Some therapies these days are very gentle.
I'm still in two minds regarding diagnosis. I think I'll be pursuing Chinese traditional medicine as they have a lot of success with Parkinsons; they don't really put labels on diseases like we do, so I guess that's a way of responding without going down the medical route and firming up a 'parkinsons identity' just yet. In my fantasies I'll be able to knock it on the head having caught it relatively early! We shall see :). Good luck to you too.
Janice Hadlock has FREE Books about exactly this and taught Chinese medicine for many years. She also says she has cured herself and others of pd and of COVID! Definitely check her out before doing accupuncture and I could not agree more about not pursuing diagnosis. I made the mistake of going to a neurologist. Should have avoided that like the plague. But still no meds and I def believe it's ALL nervous system related and you are on the right path.
Just watching this - it is SO GOOD! Just *knowing* there are people out there who are doing so incredibly well 20 years after diagnosis is inspiring and gives hope. It's inspired me to stretch through my resistance to being more sociable and trying to make new friends.
You are kinda going about this the wrong way and possibly making things worse.
Gee I can already hear the gasps of indignation coming from the others.
1- Stress either physical or mental (worry ) increase the severity of the PD symptoms and can also advance onset.
2- Fear of the unknown is much worse than being prepared and equipped to fight what is ahead.
now it is a dark cave with strange sounds coming out and it may be a monster but it may be a mouse.
3- Much research has been done in genetics and so far there is only a very small proportion of PD cases attributed to heredity .
4- Parkinson plus is a misnomer. It is not Parkinsons , although it shows the same or similar symptoms it does not respond to PD medications and is in effect 4 or 5 very serious diseases that have nothing to do with PD
I suggest that you go to a Neurologist and get a diagnosis , it could be familiar tremor which is highly treatable. Then if it is PD take the medications she prescribes it probably wont make all the symptoms go away but it will help you do more exercise.
EXERCISE harder and more often you have ever exercised before. Join a gym and become addicted to exercise, make it the center of your world. Lose that excess weight and build muscle . I can not stress this enough.
maybe get a tattoo to go with that new person you will become
Be happy, happiness is a state of mind and you can be happy if you have a mind to
Honestly Gymsack I'm f***** as I already live with chronic pain conditions that make exercise incredibly difficult. I can walk, and have started walking briskly more often, but I need a recovery day afterwards and I'm really limited when it comes to other forms of exercise (and, yes, I'm exloring options). I take your points about minimising anxiety by knowing the monster, but given I have some signs of prodomal MSA-P, and pill rolling is either MSA or PD, I'd rather not know I have the MSA monster rather than PD. I dare say I'll change my mind at some point but having a neurologist pronounce on this would just do me in right now.
I spent a day with my wife looking at two new Gyms in town the thinking being that my back pain which is becoming too much to even walk could be eased if I did some sit-ups to build my stomach muscles , and I need a bench so that my arms could help pull me up until the abs are strong enough to do it alone. The next day I spent mostly laying on top of my bed . Every muscle and joint hurts and my body is coated with CBD cream , A-535 antiphlogistine and Voltaren and I consume 6 extra strength tylenol and 2 CBD gummies each day. with 7 x 2 leva/carb . If I miss a dose or two of my PD meds the pain is unbearable. My Neurologist says that there is no pain with PD but that I do have PD ( he is lots of fun) my Family doctor says that there are old injuries at my spine but that it healed and believes as do I that the PD is deforming my body thus the pain in my back , neck and shoulders and recommends exercise .
I am not trying to out pain you or make less of your circumstance , I just want you to know that I am understanding a bit of what you are going through,
I stand by my suggestions . Time to face it one step . It will be very difficult
Go get that analysis and diagnoses and maybe eliminate the MSA monster. If the monster is real then the treatment will be different.
That sounds like hell. Are you on Baclofen for the pain? My mother had it for pain with her MSA-P.
I can find it really easy to be gung-ho with starting exercise and then end up crippled for days, so I feel for you. My osteopath used to say he'd rather I walk for 20 mins one day and rest the next to let the body repair, than walking every day for 20 mins. I try to remember that. Repair is everything.
I listenend to the Movers & Shakers podcast on Exercise which was entertaining and inspiring, although they're all in a different world of capacity when it comes to exercise tolerance. Some of them had a personal trainer. I do think there's something to be said for a PT designing an graduated exercise program so that it's not too much and doesn't cause even more inflammation for the body to have to mop up. I think that's why people say so often to start in a pool - much harder to injure yourself! My housemate gets messages from Spirit (sorry, that may be way past your belief systems) and they told him to tell me to swim in the sea - that the ocean itself would be healing, not just the cold. I HATE the cold... and my feet hurt on the pebbles... and, and.... but I will. Even if it's just a dip. Maybe even combine it with a sauna that's opened up on the beach in Brighton, even if sitting there hurts after five minutes - better than nowt right.
If you're open to supplements, check out the British Supplements 'pain stack' at their website. I'm not sure they ship to the US yet (it's imminent) but you can read the testimonials there for the difference people experience with things like Devils Claw, Tumeric, Boswellia, even D3/K2. Ashwaghanda is also great for mood and I think everyone should be on LionsMane for the brain. Supplements have made a big difference to joint pain for me (arthritis).
Sending you care and hoping you recover back to baseline soon.
For back pain check out Back Mechanic Stuart McGill— exercises that help strengthen core muscles to support back, without doing more damage. Regular sit-ups not a good idea. And/or work with a physical therapist, as you can make your back worse by doing the wrong exercises!
And the Restorative Practices also looks really interesting. Somatic Experiencing meets Polyvagal theory?
What have you done from that?
I've done quite a deep dive into Organic Intelligence, which is a major evolution of Somatic Experiencing by the guy who was Peter Levine's first senior trainer, and was thinking of putting myself in the hands of one of their therapists. Very heretical work though as they really don't focus on trauma or 'what happened'. at. all! It's all done via working via the biology with a systems approach. Quite hard for me to wean myself off the psychological way of looking at trauma, especially as I'm trained in Internal Family Systems and also having sessions in that.
Just dipping my toe into restorative Practices. The first step is re-establishing a strong sense of connection… with body/self, earth, other humans/beings, community, universe, etc… your needs and beliefs may guide this. I lie on my stomach on the ground and just feel… if you pm me I can send you more, I’d also like to hear more about organic intelligence…I believe the body can lead in healing and thoughts/feelings follow…
I think we need to form a group dedicated to learning about and sharing these practices. It can be so overwhelming seeing how much is out there. Would love to catch us together on a zoom specifically about mind body stuff and alternate forms of exercise and body work. We could have rich exchanges I think. Who's up for it?
I will be up for this later on in my journey, gomelgo. Right now I'm on a week's holiday (staycation) and wanting to unhook from PD concerns, and integrate the amazing info in Dr Laurie Mishley's Youtube interview, along with that which I already know. For me, as I have a fair bit of old freeze in my system, that involves not pushing myself; allowing myself to relax; unhooking from 'shoulds, have-to's, musts' etc; and focusing on orientation, and simple pleasures.
Restoring the Orientation response in the biology is the foundation of healing, is what I've learnt from Organic Intelligence. If you're interested, here's a video where Steve Hoskinson guides that.
Once one has the hang of that, and is noticing where orientation is already happening during the day, as well as easefully doing micro-orientations like this, during the day, you can add in simple pleasure, and then make an 'orientation sandwich' - which he guides here:
Coming out of 'efforting' is so very important. I don't know how much you know about the nervous system, but freeze is actually the highest state of arousal, and so adding in more efforting and doing is not what is needed. Orientation sends the messages of safety that allow the biology to come back online in its healthy synchronised state, which is what we want in PD. The more a biology has orientation online, the less it is in freeze; they are mutually incompatible nervous system states. And, the OI lore is, 'Easy does it'.
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