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pabzie

Treating PD through psychiatry?

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Curious if anyone has any thoughts on this? I've come across a few articles online about how doctors are starting to look more and more at the link between Parkinson's and psychiatry. What gave me the thought to even start looking this up is that some of my symptoms seem like they would be better treated by a psychiatrist than a neurologist. For example:

When my feet are touching the floor and still (i.e. when sitting or standing), I get severe dystonia in the left foot which leads to severe cramping. However, as soon as I take my feet off the floor (i.e. sitting in a recliner with my feet raised or lying in bed), the dystonia immediately stops. And strangely, if I continuously walk, I get no dystonia at all. As soon as I stop walking, I feel the dystonia immediately kick in. Another strange thing as well is that as soon as I sit in the car and close the door, the dystonia kicks right in, but if I open the car door and let my foot hang out, it stops. This seems like more of a psychological issue if you ask me, and I would think some type of therapy should exist to get me past such a silly symptom. My dystonia happens to be my most debilitating symptom, so it sure would be nice to find an answer.

Another strange symptom I have is that I may be sitting in the recliner relaxing and all of a sudden I realize I'm tensing all of the muscles in my body as though I'm bracing for impact. Then I think to myself, "why am I doing this?", and I simply tell the muscles to relax, and they immediately do. Many times they will stay that way and I will feel fine for hours after that. Again, seems like something better treated through psychiatry. Though I happened to get all these symptoms at the same time as my PD symptoms, so they tend to get thrown into the neurological bucket.

Just curious if anyone has had similar experiences, and if anyone has found any psychiatric-related therapy that has helped them with such problems. Thanks!

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This intermittently happen to me but I think it is the tension of the compression on the muscle that triggers the dystonia.  Once I release the tension, it goes away.  Anxiety just makes it worse.

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She-Ra is right, dystonia and anxiety are both symptoms of PD.Increased anxiety can also increase other motor symptoms of PD too.I noticed my dystonia is less at night,when I am less anxious and immediately when i  waken up in the mornings before getting out of bed.It is good to see a psychiatrist if you cannot cope with your anxiety.In addition a cognitive therapist can help too with anxiety management.

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Hi lenamegan,

I see you are taking lots of supplements.Were they recommended by your md?I hope no contraindications with your sinemet.

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3 hours ago, She-Ra said:

This intermittently happen to me but I think it is the tension of the compression on the muscle that triggers the dystonia.  Once I release the tension, it goes away.  Anxiety just makes it worse.

Strangely, in my case it does not appear to be the compression of the muscle in the foot because I can walk for miles without a problem - it is only when I stop to rest during the walk that the dystonia kicks in. As soon as I take one step to continue my walk, the dystonia goes away immediately.

I've also done a further test to see if it was compression causing the dystonia; sitting in my recliner with my feet elevated, I slowly lowered my feet to the floor just so they barely touch the floor (placing NO pressure on the bottom of the feet). The dystonia kicks in any way! There is a definite psychological component to this - like I have a subconscious fear of my foot touching the floor.

Interestingly I've seen on multiple websites where people have apparently been cured from PD by psychologically convincing themselves through daily affirmations that they are okay and that there is no need for the anxiety etc. These testimonials are too many to ignore and I think the psychological side of PD is not getting enough attention.

 

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Hi Otolorin,

I'm a veterinarian who specializes in holistic medicine to treat progressive, fatal and hard to treat and diagnose diseases in animals so kind of in the perfect profession for managing PD. So some of my supplements are from my own research and knowledge base.  I also work with a team of naturopaths Sam Evans and Laurie Mischley who just treat Parkinsons.  Laurie does PD research at Bastry university in coordination with the Michael J fox foundation and Sam is her resident and they added many and monitor my list - they are who also manage my drugs.

Here's my full list with explanations of why I take them

https://pathwithpaws.com/blog/2017/02/18/using-supplements-to-treat-young-onset-parkinsons-from-lrrk2-mutation/

I've actually on almost no Sinemet (I take 1/2 a pill about every two days) since starting a rehab program designed by Dr. Joaquin Farias in Toronto - just spent four days with him.

https://pathwithpaws.com/blog/2017/05/28/rehabilitation-from-parkinsons-disease-yes-permanent-healing-is-possible/

https://pathwithpaws.com/blog/2017/06/04/2-rehabilitation-from-parkinsons-disease-music-is-magical/

 

best wishes,

Lena

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Pabzie,

what you have just stated is part of strategy used in cognitive trerapy of anxiety by psychologists and cognitive therapists.Probably non motor symptoms of PD like anxiety and depression are not getting enough attention,because PWP  don't seem to complain that much about these symptoms.

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leenamegan,

I should have known,you once introduced yourself to me as a Veterinarian,but I did not notice all your supplements until now.Thanks for the link.What are your major symptoms?Are they controlled by your current med/supplement cocktails?

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I'm down to just tremor and slowness in the left side of my body now (mostly left arm especially my hand) and mild rigidity left side only.  I can now walk almost normally. All non motor signs are gone and I feel very comfortable in my body again.  At diagnosis I was highly uncomfortable in my body, had severe anxiety, GI issues, bladder issues, extreme fatigue, sleep issues, and mild freezing and walking was very slow and difficult.

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So yes very controlled with current program.  I also do tai qi, circus arts, feldenkrais, yoga and 2-3 hours of rehab a day (walking, dancing, other movement exercises from Dr. Farias).  And I use a small nicotine patch.  I am determined to get ever better but even if I stay at this point my life is very good:-)

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What is the benefit of nicotine patch post PD diagnosis?I thought nicotine plays a bigger role in prevention than treatment.

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It is an extremely strong neuroprotectant esp for cells that product dopamine. There are a couple studies that show smokers with PD progress at a slower rate than now smokers, it also is a strong parasympathic so can help with anxiety and helps with muscle tension.  It is in study for dyskinesis from Sinemet which it seems to be good at treating.  In some people it decreases PD symptoms.  I actually use it mainly as a hack around damage to my nicotinic acetylcholine receptors from a neonicotinic pesticide that I had massive exposure to in my 20s and as a protectant because of my LRRK2 mutation.  And on the off chance I don't have PD yet and primary dystonia instead (all people wit LRRK2 have abnormal dat scans so mine is non-diagnostic) it reduces my chance of getting it from 50%-25%. Added bonus - it helps with my rigidity.  As I'm sure you know, it is highly addictive though and absolutely not something to be added without a lot of thought.  I'm in for the long haul and plan on taking it forever.

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lenamegan,

did you  ever smoke before?Do you mean you were never dx of PD,but dystonia?What other symptoms do you have apart from dystonia?

 

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I have never smoked.  

I have all the symptoms of PD - rigidity, slowness and tremor and abnormal dat scan and two mutations that cause PD -GBA ( which raises your risk 5x) and LRRK2 (which gives you a 50% chance of getting PD).  However primary dystonia has all the symptoms of PD with a normal dat scan, same area of the brain for both but no destruction of dopamine cells in dystonia.  My dat scan was abnormal so I was diagnosed with PD by my neurologist.  HOWEVER because Serge Brinn (he is one of the founders of google and is LRRK2 with no PD yet) donated 50 million to studying LRRK2 we know a lot about it.  Two recent studies show all people who carry LRRK2 mutations with no PD have abnormal dat scans and all people with LRRK2 have at least some non-motor signs of PD.  Do we all have mild/early PD???  So in my case there is no way to show if I have full on PD with secondary dystonia or LRRK2 mutation signs with no PD yet or very early PD and a primary dystonia with partial functional paralysis on my left sign.  I got PD sudden onset which is much more common with dystonia and I can trick my body into normality for short periods which is another sign of dystonia.  However there is no way for me to tell especially since I may have both.

There is some thought that LRRK2 Parkinsons is a different disease because there is usually no cognitive component and there is a thought that the destruction mechanisms are different - from us being born with short stubby neurons that die easily and mirochondria disfunction as opposed to the protein plaques in other forms of PD.  However there are many similarities if that's true.My supplements are aimed at PD and my specific mutation. And I'm treating the dystonia as well.

 

Sorry I'm kind of a big medicine/science geek!

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Interesting stuff Lenamegan, although I did have to read it slowly 3 times to absorb it all and now my brain is tired!

Thank you for sharing this info, never read about this.  Hoping MDS's are up on all of it!  

I am assuming you must not only be a medicine/science geek, but an animal geek too!

I am a very passionate animal lover. Not just a "pet-lover," but respect all animals; wild, domestic, even insects, and everything in-between! I call myself a bit of an "animal geek!"

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ellaangel, I understand and am the same about all animals, including insects.  Yesterday I had to kill an ant and kept apologizing to it.

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Yes definitely animal geek also - I talk to the crows in our neighborhood every morning and enjoy my four animal companions :-)

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Aw...  So sweet.  I bet the crows appreciate it :-) since most people would just as soon they go away.,,

What are your four animal companions?

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lenamegan,

I thought if you have abnormal Dat scan,the MDs usually dx parkinsonism,then they give C/L to check the response and if the patient respond to C/L positively PD is diagnosed.I see you queried that the severity or progression of PD might have something to do with the etiology.Since a PD is still a mysterious disease.It is worth it for PWP to continue to be empowered by seeeking knowledge about PD."Seek and ye shall find" Matt 7;7.I admire your treatment model.Have you ever diagnosed any animal with PD?

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Some dystonias are also C/L responsive. I haven't diagnosed an animal with PD but I am starting to wonder if we are missing it in some of the old, shaky, slow, rigid  dogs.  

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lenamegan,

the reason why I asked about an animal being dx of PD,is to be able to know the prevalence in animals,and if environmental factors that has been suggested to cause or trigger PD in humans has the same effect on animals.Please pay great attention to this at your clinic.You stated you work with a team of Naturopaths and considering your leaning more on supplements therapy,what do you think about Mucuna puriens/Fava beans in the treatment of PD symptoms?

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Re Mucuna - I think it is a fine treatment and works well for many and is neuroprotective - it didn't resonate with my body - made me very jumpy/anxious if I took more than one a day.  It was the first thing I tried.

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lenamegan, your dog is just precious.  And I see a beautiful (and well fed) kitty in the background!  :-)    >^,,^<

And yes, I have a beautiful fluffy white kitty boy--part Maine Coon, so he is really loving.  I've had him for 5 years, and he just this year sprouted some long fur growing from the back of his ears--like tufts of hair.  Sort of like wings.  They stick out and look like...well...hilarious!   Have you ever seen that before?  I went on line and found some other cat owners whose cats also have those tufts.  Strange to me that they did not show up on my kitty until this year.  He also has a LOT of fur behind his front legs.  And the usual Coons' ruff around his neck and a fluffy tail.  The rest of his fur is long, too.

Edited by Linda Garren
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