Parkinson's Movement
13,760 members12,293 posts

Give me my personality back

I’ve been resisting levodopa replacement therapy for two years but, no matter what I try (including diet, supplements, exercise and B1), the old me is fading away. All the things I enjoy doing are impacted. It’s not depression, as such, because part of me says “pull yourself together and live with the motor symptoms!” But when you have to repeat everything and cease to be good company......

Is it time for medication ? Or is that giving up too soon?

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I don't take levodopa either, but from what I've heard its not plain sailing either. A lot people say it works well for them while many others say the side effects is overwhelming and outweighs the benefits of a very short on period.

I'm no doctor but I think how and for whom L-dopa works depends on a lot of factors as Parkinson disease is also an individual disease

If you don't mind, may I ask some few questions. Please feel free to skip any one of them

How long have had PD for?

Do you have rigidity dominant PD or tremor dominant PD?

What is your most concerning symptom?

You mentioned B1, exercise and other supplements, specifically which other supplements?

How old are you?

I ask all this for category identifying purpose... so that it will be relatively easier to find someone with most similar profile to you and see what worked for them

In fact this would be a very useful practice, because "I have PD, what works" is rather too broad for what PD is

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Very, very interesting Grumpy77 !! Because now I'm also coming on a point where I don't know where in or where out. (also had a reaction on the i.v. alpha-lipon-acid infusion two days ago.......) >>>>> I'll send also a list of my symptoms later on !!

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PD for at least two years

Tremor dominant autonomic

Recently slurred speech

Zinc, selenium, phenylalanine magnesium, B6, D, E, lemon balm, oregano oil, Olive leaf

I am 64

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Have thought of trying Copaiba essential oil for the tremor and also Zandopa which is a more natural form of L-dopa?

I'm about to purchase Zandopa myself... i read its side effects is much less severe plus the fact that its natural

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Purchased Zandopa, not as good as expected. Barlowe's extract 40% works faster and better for my husband.

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what symptoms does Barlowe's extract help relieve?

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He feels more "normal." Tremors although intermittent are less frequent.

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Nothing wrong with giving your chosen form of levodopa a try. For the prescription meds the extended release version usually is better.

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What are the risks of trying a very low dose of Sinemet for say 2 months and then coming off it slowly if it fails to make a difference?

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I adjust my dosage of Sinemet CR as needed. Have had no problem dropping the dose as my condition warrants.

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I heard from my Dr that trying reduce or get off sinemet would kill me. I have had to increase meds especially at night so i can sleep. Unhappy about that. About to start the B-1 . Any suggestions welcome .

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Quitting Sinemet abruptly is not a good idea, and you are supposed to consult with your MD if you want to taper your dosage downward. A lot of good that does if your MD is saying that doing so will kill you. Personally I have always been able to adjust my dosage as needed without ill effects.

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Ok Thank you so much

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Yes! Start thiamine hcl soon. Doc Costantini will recommend you stay with sinemet.

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I would say that the cells unlearn to produce dopamine, but cell life does not go this way. or not? the point is how do 30% of the dopa cells left to produce 100% of the dopamine needed without external help?

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Gio Do you have any idea why Dr C avoids answering my question about supplementing the B1 with Sinemet?

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I do not know what it is, he prescribed s me b1 and madopar, but it could also be simenet. Maybe you should rewrite it and get your answer. It is my opinion that if dr C does not answer is because he has missed the communication or has not seen and nothing else.

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retry,

What is your question that you are posing to Dr. Costantini that he is not answering about sinemet and B-1?

Art

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I have a good dialogue with Dr C about dosing and it looks as though about 1.5 grams is optimal but still not giving the improvement alluded to after 75 days. So do I need Sinemet or Azilect to go with the B1? I will email him again

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That sounds like a very good plan! If it is tremors, I think he likes to use sinemet or similar in order to try to improve control and he will adjust the sinemet dose if needed in order to optimize the effect. He may possibly be trying to see if thiamine alone is enough in your case, since they seem to feel that max benefit is often times seen in the 6 months after your optimum dose is found, but the fact that you continue to stay in contact with him during this period is almost always the way to get the most out of thiamine. You can see from the many posts by thiamine users on this forum that many continue to see further improvement as time goes by.

Art

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Update: Dr C has dropped the dose to 1 gram but still wants to wait before starting any Sinemet!!?? He does appear to have ruled out Azilect

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the fact that you are in continuous and good communication with him makes me hope that this alone will resolve all your doubts about it and I hope you can have good results from all ,that is the main purpose to be achieved.

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I agree with Gio. We need an external help, in our case the L-Dopa. If we donot take enough L-Dopa then the remaining of Dopamine producing cells will go under an oxidative stress and it turns into a vicious cycle.

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Kia17, Your theory that low dopamine, or lack of it, produces an oxidative effect is interesting. What do you base it on?

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dumpelkin

I quoted from Dr Costantini and also my own personal experience.

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How can you tell, your B1 dose is the correct one? How is your pull test..??

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No problem on the pull test. It’s not diagnostic in my case. My level of bradykinesia is a better indicator.It gets worse when the dose is too high

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Sorry if this sounds like rough science but I think dopamine is produced by the body and by walking 3 kilometres per day I not only have my personality back but no levodopa needed...it takes a while for he brain to get to use natural dopamine but don't give up with exercise as a source....no matter how slowly you walk....

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Jogger, How long have you been diagnosed with PD? I am guessing no more than 5 years, i.e., you are still in the honeymoon period where symptoms are mild. If you have reversed some of your symptoms, a narrative or timeline would be helpful.

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I was diagnosed around 6 years ago but I had symptoms way before then...I had symptoms 4 years ago that were truly terrifying at times, people that knew me were noticing some disturbing features to my behavior...I struggled to walk properly, my memory was failing.. I have improved a lot and the only thing that had changed a lot is the amount of exercise I do, so I cannot be sure it is the walking but I don' t really know what else it could be ...any questions, let me know

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This is an after-thought but am curious..you mention that the first 5 years are mild...and you were diagnosed in 2013...so you must be in that honeymoon period...

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Yes, I would say so, but the tremors have been gradually expanding across my body, from top to bottom and from left to right. It's a judgement call whether the honeymoon is still on. Of course, it's all relative: compared to how I'll be five years down the road, my current condition might feel like Nirvana :)

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I feel that it is instinctive and logical to think that everything will get worse but my tremors, just as an example, have reduced and that was a surprise..."just when you think the boat is sinking, it doesn't..."

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Jogger...you gave me a bit of hope when you said.... "don't give up with exercise as a source....no matter how slowly you walk". i keep hearing over and over it has to be fast walking but i cannot walk fast for a number of reasons... gait/tremor/coordination issues also hip/leg/foot pain and rigidity. So you found that slow walking is also beneficial? i can go about a half a mile but that's as far as ive been able to push myself. would love to hear about your experience.

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I cannot walk fast any longer, and if others want to walk with me, they have to slow way down, but I have built up to 3 kilometres per day...and it is my belief that my improvement is largely due to the exercise..

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Good for you, Jogger! I believe ANY exercise is better than nothing, both mentally and physically. All we can do is all we can do...but we need to do whatever we can.

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Thank you Jogger for sharing that. It motivated me to go out and walk my ½ mile. It took me 18 minutes. It was slow but I did it. I used poles to help get my arms swinging. If you don’t mind me asking how did you work up to 3 k? Or were you already able to walk that far when you were diagnosed?

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Are you sure it's not depression? My husband resisted for YEARS any suggestion that he was depressed. He was adamant. Six months after diagnosis and after doing a lot of reading that I gave him, he admitted finally that he had been depressed and had anxiety (I knew this for years). In his culture it is heavily stigmatized so it wasn't that he was lying, he just couldn't see himself as he really was. We are working on it now, because we believe you can recover from this disease if you change your thinking dramatically. This is based on the people that have actually done it. The depression is very common in Parkinson's and usually precedes it, sometimes for decades. I do not recommend SSRIs as they are basically placebo (although, PwP are very placebo-responsive). A good book about depression is Johan Hari's "Lost Connections". Good luck on your life journey.

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Thank you Emmiesix. Your post is among the best I have read here - and there are a lot of outstanding posts.

All cases of medically controlled total remission of PD have a history of curing depression and anxiety first. It is done through psychotherapy, meditation, sport etc.

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Are there reliably documented cases of total remission in PD ? I'd love to learn their stories.

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Xenos and Emmiesix. I too believe you can positively affect healing if anxiety has been cured first. It took me a year to cure myself of anxiety with MM CBD/THC and frankly it just doesn’t exist in my life anymore at all. Now I rarely use MM. Since then my symptoms have continued to reverse at 4 months on B1 and zero anxiety.

I’m 56, and nearing four years with PD, no RX.

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I would like to hear more in detail how you did that. TY

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I used the tinctures 3-4 times a day. The strength I used varied by activities. I used 20:1, 3:1, 1:1. After a year I found myself naturally titrating as I just didn’t seem to require it any longer. I’m positive it aided in re-wiring my brain to where I’ve been anxiety free for 9 months now.

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Constance,

I suspect you will remain anxiety free now that you are on B-1!!! 👍👍

Art

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What is MM? Did your doctor prescribe CBD/THC? Thank you!

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Despie,

I believe that MM would be medical marijuana.

Art

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I’m in CA, you don’t need a prescription for MM. it can be purchased at a dispensary.

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What is MM CBD/THC? I have anxiety and depression. Suffering Socks

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Hi Constance, good to hear from you again, although this site is far better than the other site we're both on, huh?

Anyway, you have pretty well stopped MMJ, in favor of the B1 regimen? And where are you at, dosage-wise, on the B-1 regimen?

Yes, I acknowledge that our bodies are different; with different medicinal fixes. :>) Glen

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Glen, I’m at 2000mg daily and it’s been amazing. At the moment I’m getting a pedicure in preparation for my trip to Europe. B1 has now pretty much halted my tremor. The only symptom I still have is leg drag about 50% of the time at most.

I haven’t been here too much as I’m busy living life and feeling well.

I’ll meet with Dr. C. While in Europe to thank him. It’s been an amazing transformation during the past 5 months. With B1 i use a little Mucuna and MM that’s it!

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Thanks for the update, Constance. Have fun, and enjoy your "enhanced" life. Now to try the B1 regimen!.....Glen

Appreciate any feedback you can give us after your return from Europe, and meeting with Dr. C....

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xenos - i would also like to know more about these cases. i have believed this and have been working on my 'inner life' for a while now. i would love to know what others have done. do you have links you could share?

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Case Report

Karishma Smart*, Raymon Durso, Jonathan Morgan and Patrick McNamara

A potential case of remission of Parkinson’s disease

DOI 10.1515/jcim-2016-0019

Received March 14, 2016; accepted May 24, 2016

Abstract: We present the case of a 78-year-old male who,

16 years ago, was diagnosed with Parkinson’s disease

(PD) by a neurologist. He initially presented with lefthand

tremor, stooped posture, shuffling gait, and frequent

falls, which eventually progressed to bilateral

motor symptoms after 3 years. Since 2012, his symptoms

and signs have almost completely remitted, and he has

been off all pharmacotherapy for that time. The accuracy

of the initial PD diagnosis is supported by an appropriate

clinical presentation, history of positive response to

Sinemet, and an abnormal SPECT DaT scan; thus this

case suggests the possibility of remission of symptoms

in some patients. We propose that the patient’s long

history of meditation practice may have been one contributing

factor of this improvement as meditation has

been shown to release dopamine in the striatum.

Keywords: meditation, neuroimaging, Parkinson’s disease

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Can stress trigger Parkinson’s disease?

Atbin Djamshidian, Andrew J Lees

To cite: Djamshidian A,

Lees AJ. J Neurol Neurosurg

Psychiatry 2014;85:

879–882.

ABSTRACT

In this manuscript we summarize the role of chronic stress

as a potential trigger factor for Parkinson’s disease.

Underlying mechanisms and stress-induced changes to

the neuronal networks have been highlighted. Examples

of stress induced reversible symptoms that resemble

parkinsonism in humans and in animal models raise the

question whether emotional stress can cause striatal

degeneration in susceptible patients.

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Have you read about Psychosomatic Parkinson's? Worth searching and reading about it.

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Hi Despe. I will look, but I have a question unanswered by the neuros : does DaTScan discriminate between psychosomatic Parkinson's and other forms of the disease. My old neuro says no.

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Haven't searched that, Xenos. Probably DaTScan can't differentiate, so your neuro might be right. My husband has been "diagnosed" by a Mayo clinic neuro who didn't perform any kind of tests other than physical observation. Next available apt with a MDS, not Mayo but Vanderbilt, is in May. Called Vanderbilt early spring and the first available apt was for next year in May!! Until then, I have to assume based on Mayo neuro that it is PD. Even with a DaTScan nothing is 100% certain. That is the frustration of this disease. :( Until then, MP, B1, vitamins and exercise will have to suffice. I have become my own doctor as I can't get one until next year, although I have an apt with a local DO in October.

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7 month to get an appointment !...

You are right : we are all becoming our own doctors :-(

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AJCHH Vol. 23 No. 1 March 2002 Identification of the Role of Distress and Personality in the Onset and Prevention of Parkinsonism: A Study by BRIAN MAGRATH, Psychosomatic Therapist New South Wales ABSTRACT This study investigates the possibility that there may be a human personality type, which may be prone to the onset of Parkinsonism. Should this be so, it may then be possible to identify those personalities before the disorder develops. It was also intended to investigate the probability of interventions by psychosomatic medicine, [PSM], such as hypnosis, being of value in the treatment of Parkinson’s disease, [PD]. One hundred and three, [103] subjects diagnosed with Parkinson’s disease, and a similar number who are not, as a control sample were presented a questionnaire for completion. The questions related to personality characteristics, life details and the influence of clinical depression. The ages of the two samples were kept in similar age-band quantities, by random removal of subjects from the control sample. By analysis, the prevalence of diagnostically discovered clinical depression in the PD sample was 40.8%, whilst in the control sample was 10.7%. It appeared that a “Quantum of Regret” attached to all loss experienced by humans, may contribute to the loss or depletion of cells which produce neuro-chemicals, dopamine in particular, and therefore lead to the onset of Parkinson’s Disease and, perhaps, other neurological disorders. Should it be that this factor may be identified in the individual, then its removal may affect the cytological responses within the body of the individual. This study received the approval of the Human Research Ethics Committee of the South Eastern Sydney Area Health Service, New South Wales, Australia.

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What an interesting post - so glad you shared it with us. Suffering Socks

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There was yet another PubMed, describing the healing of two women "once the stress issue was taken care of". If I am not wrong, these two cases were DatScan controlled. But the way stress was removed of their life was not developed.

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wow..thanks for all of the info...i really connected with 'quantum regret' post. i''ll have to look into that more. i believe our inability to process emotions could be a part of the problem too. thought id share this ted-x video i just came across on that subject. i thought it was very good.

youtube.com/watch?time_cont...

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Thanks for giving details to watch the ted-x video. I agree entirely with your post and shall watch the video tomorrow as it's past bed-time for me. Suffering Socks

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Why b6 on it own? Why not try a combined b complex like vitacost.com/life-extension...

As well as the B1.

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I too avoided levodopa for 2 years. But it meant giving up some things I loved - like step aerobics. My doctor said to me "why wait? You are losing this opportunity to not only do things that are good for the PD, but you are missing out in life." I started taking it and wow, my life returned to almost normal! I even climbed to the top of Angel's Landing in Zion! Fast forward 7 years. Yes, I am now taking more meds, but I am still enjoying life, and ME is still ME! Don't lose yourself to this disease. Be strong, but be smart. If something is available that will work, why not try it. Yes, some people can't tolerate it, but you won't know until you try. I wish you much luck. AND, I hope you are exercising!!!!

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61,male, diagnosed May 2015,no meds,mild tremor left side and some stiffness. Every other day I Exercise 30 to 40 minutes at 80% hr, weights 2x week, supplements b1, magnesium, med marijuana. Progression slow....but considering c/l. Reside in Canada.

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I'm in a similar situation and resisting c/l. I got my personality back after being lost in space for almost an year. B1 helped me a lot. I may try c/l sometimes in the future.

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This might be helpful: medium.com/parkinsons-uk/st...

There is also a study that should be reporting soon on the benefits of early levodopa therapy (the LEAP study)

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Try mannitol works really well (for me) has lifted my mood and kicked apathy into touch. You can search here forposts on mannitol but basically it a plant derived suger subsitute used in diabetic products. Allso good wirh other symptoms. I get mine www. Syncolein. Com

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How did you use it, how much and when ?

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Look on syncolein.com has details theee. I take 1 tablespoon a day as told by Dom from syncolein. See my page for more posts

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I think I know what you mean. I liken myself to being a star being sucked into a black hole. Although I have a sense of humor and don't feel depressed (maybe a bit down sometimes) but lose interest quickly in people visits. The old me has faded. I do needed activities mechanically because I have to. Apathy was never ME nor feeling a lack of pleasure (anhedonia), opposite of hedonistic ( pleasure in self).

Mucuna P. has improved my motivation to do things and desire to cook and even sew, even if there is no real pleasure taken in eating it. (So I won't starve...yeah). Is this what you mean? I've tried antidepressants but did not help. It is worse than being stiff, tremor or slowness. I often wonder how prevalent in Parkinson's it is. Came about the same time as hypomimia. I laughed at a description someone likened it as "my bitch face". Kinda think it may describe me sometimes. I worked at improving my sense of humor. Watch funny things on TV as much as I can and don't dwell on negativity. My star may shine even inside a black hole. Ha! Take care 😡 😆

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Exactly thank you

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Interesting analogy rideabike. I never thought of my having apathy that way-as a star being sucked into a black hole. When one goes from a personality plus outgoing type, positivity, to being somewhat withdrawn and quiet, and just not interested in socializing most of the time, then a sort of blase approach has set in. I am less interested in making food, and deriving pleasure from eating, going out, or much of anything. I can sense the old me fading, and I'd rather not have it that way. I can't seem to find a solution to this apathy, and your explanation really sums it up well. I don't dwell on negativity, though, because that just makes things worse.

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Apathy really is awful to fight every day and it's really hard to explain to friends. People are either on their phone or tablet or hardly let you finish a sentence before walking away. I understand that they don't understand but this site is great because people listen so I am learning to listen and pay attention to how I'm listening and I guess that is a plus. On bad days I just hibernate and that's OK too. I appreciate your reply so that I know others feel it too.

I hope there is a forum on the mental aspect of PD sometime.

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That is a really good idea, to have a forum on the mental aspect of living with PD. This needs to be addressed, for sure.

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C/L has mostly removed my tremor and fatigue, allowing me to exercise which is probably the most effective treatment for PD. I see no reason to try it.

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I am reading this article and I think you might find it enlightening. It's about the different types of PD it covers some of what you wrote.

outthinkingparkinsons.com/a...

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Thanks! I, also, had a genetic test with 23 and me, and found out many interesting things.

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