Two weeks ago I was evaluated @ the Cleveland Clinic in Ohio to see if I am a good candidate for DBS, I was, even though I "looked good" haha. Sorry, I'm getting off the subject. Anyway, since developing this dreadful disease I have struggled with not only the physical symptoms but extreme, frequent, and often unrelenting anxiety. Several years ago I was questioned by my neurologist as to whether I felt depressed. My answer was "no" but I did complain of the anxiety. The Dr. asked me if it was "physiologic or psychologic" and repeated that question whenever I mentioned the symptom. Since seeing him, I have been to another neurologist, top-rated in the field. In mentioning the anxiety again, he said little other than telling me to see a psychiatrist, which at some point I did, since the crawling out -of- my skin feeling continued to intensify throughout the last 6 years. I always felt like I was not coping well enough, that it was a personal flaw I had and it was me. Well, at the cleveland clinic, it was explained to me that many, many people have anxiety as part of the illness. If those other Drs had just told me that it would have helped, you guessed it, relieve the angst I felt, thereby decreasing the anxiety. Could it be they didn't know? Is this like that first MD telling me there is no pain in PD when I complained about it??? I'm sorry for the sarcasm, but this disease is bad enough without compounding it with professionals who either don't know or don't care about their patients. It makes me so frustrated. So if any of you out there have this, it is NORMAL in this illness and know you are not alone. Be Encouraged, FG

So hard to compare what we feel inside. We hardly even have a vocabulary about what we feel. The talk about Parkinson's Anxiety, but to me it does not feel like anxiety; sometimes it feels like dread. Panic-inducing, the horror, the horror, the horror.
But sometimes it feels like extreme discomfort all through and inside my body and my skin feels like it wants to get off me and crawl into a ditch somewhere.
As a feeling, it really, really sucks.
But I have no way of knowing if that is what they call anxiety, or if it is the same as anyone else feels. In any case, it is not in itself part of a movement disorder. It's more like being tormented by something scarey.

Floridagal, you have brought up a very important topic for all of us, one that is still shrouded in misconceptions. We are coming into the light of each other's experiences here, where the truth is told. In your experience, and Bob's experience, and everyone's, we are as strong as the truth.

In my not-so-humble opinion, a neurologist who asks a patient to diagnose herself in psychiatric matters is displaying the inconceivably arrogant attitude so common to the specialty. Patients hold them in awe for the length of their training (10 tp 15 years after high school is not unusual) and the difficulty of its content, but there are many pursuits in life which take the equivalent in effort and dedication, so I don't understand why they have to demonstrate their self-perceived superiority so assiduously. (Disclaimer: not all neurologists, but enough to be a discouraging force for the patient population).

The likely best diagnostician for a psychiatric disorder is a psychiatrist, just as it takes a neurologist specializing in movement disorders to diagnose movement disorders with any degree of confidence. If the disorder is thought to be from physical causes, such as brain in jury or PD, the ideal doctor would be a neuropsychiatrist--a doctor trained in BOTH specialties, predominantly psychiatry. Let me make it clear that I don't mean psychiatrists who specialize in psychoanalysis; they are like any other doctor. They ask you questions like "how's your sleep?" and slowly fill in the picture that is diagnosis, which may lead to attempts at treatment, one of which might help. For several years, a neuropsychiatrist was a member of my Parkinson's Disease team. I was luckier than most to have such a physician available to me.

The neuropsychiatrist once told me of a time when a patient was brought in for admission to the psychiatric ward by a law enforcement official who was asking the reason for whatever the woman had done under the burden of deep depression.

"Is it in her brain or in her mind?" he asked.

"What's the difference?" our hero-doctor replied. "The patient is suffering, and needs treatment. That's all that matters to me."

Back to the Land of Neurology. My automatic respect for neurologists disappeared one day when I came to see that, over time and in many ways, a neurologist I was consulting must have thought: (1) I was crazy because I had been seeing a neuropsychiatrist; (2) that I shouldn't bother him by mentioning nonmotor syptoms such as despondency when in the off state; (3) that I wasn't really suffering unless I elected to ride around in a wheel chair, and (4) these and many other things meant I should go off my PD meds unsupervised by him, and then come in to be examined for cogwheeling and no other symptom, because, he said, "We can't trust our patients." I refused to endanger my life (due to the risk of neuroleptic malignant syndrome) by going off all meds, but I did let him examine me in the off state. Cogwheeling was indeed found by him and, later, by another neurologist. I absolutely cannot understand why he then wanted me to reduce my meds until I was no longer taking them.

I have't seen him since.

"You ask why I don't live here? Honey, how come YOU don't leave?" Bob Dylan said that.

The keys to the mystery of Parkinson's Disease will be discerned by an endocrinologist, an interist, a gynecologist, a rheumatologist, and a gastroenterologist. And I said that.

FG - I'm glad the Cleveland Clinic was able to set the record straight - good people working there! Your experience is not unusual; anxiety and depression have a high rate of occurrence with PD, but are often overlooked or under treated. I'm not sure why this is still so often unknown by many neurologists who deal with PWP; it should be standard knowledge; there is work yet to be done to get the word out.

FG,

Wow, Jaye you too...when I read these experiences and reflect on my own recent doctor visits, I am really peeved that these people earn that much money to essentially insult our intelligence. Think of how people squawk that teachers should earn merit pay; they are too coddled with summers off, yadda yaddaa. Why don't we start paying our physicians in the same manner cause in the end analysis we are paying for an outcome. I bet if their salaries were dependent on how accurately they diagnose, there would be a huge move toward biochemical testing for brain disorders, or a lot of neurologists would be sleeping in their Mercedes sedans.

I just love that brain vs. head mentality as it perfectly encapsulates how they must classify everything into a state of "It's not mine, it's his". Nothing is ever treated as interrelated. Here is my particular take on it:

Saw a psychiatrist who agreed that I might need some sort of drug like a benziodiazepine for my anxiety. Yet, he wants my neuro to prescribe it, so it's in my head and my brain- makes sense. Then the psychiatrist actually asks me to "show me what your tremor looks like, yes, he wanted me to mimic my own tremor! Not sure what he really wanted to know and suppose I was written up as non-compliant.

Onto an endocrinologist who declared I was entirely "normal" according to tests and told me my problem was "neurological", and I said you mean "psychiatric"? Again, it is both in my brain and mind because you can't possibly be experiencing a thyroid problem...never mind that it leaves me unable to walk. They also took the opportunity to scoff at all the blood work and urinalysis ordered by my GP...who is the only one to take me seriously.

Anxiety...I have it in spades too. It is nothing new but just now shows up a little differently. I have been anxious for as long as I can remember; feeling always a slow burn inside a constant simmer of worry going on. Yet, I never knew why. It started in my early 20's and stopped at the age of 41 with the introduction of levodopa. Funny, how powerful our brain/mind is...I no longer feel that on edge burn that wore me down everyday, but our mind will find a way to express it through our bodies and I think this accounts for whatever our primary symptom is. It also seems to set out the welcome mat to new symptoms. According to doctors it is why I have episodic weakness in which I can't walk. Never mind it is different than FOG.

If I do get depressed, it feels more a situational response. For instance, being dismissed by doctors has sent me into a funk. I know I'll get over it, but it is the seemingly innocuous words or gestures from them that hits home...this is simply the beginning of all this. I don't experience clinical depression...yet

Laura

It drives me nuts too. I think the difference between real anxiety and the PD kind (at least for me) is the "real" kind begins with a dreaded or unpleasant event that causes that dreadful feeling in the pit of your stomach. (Things like first dates, or speaking in front of large audiences or (my favorite) taking a big test.) PD anxiety begins with the horrid feeling in the pit of your stomach then you look around for some reason to blame it on. Usually there isn't anything which only makes it worse because the knowledge that there is nothing to fear only means it isn't obvious and will probably sneek up on you or you are actually crazy and soon will be living in the "snake pit".

Glad i'm not alone in this. More fun in the SP with pals.

in the SP?

I was referring to the "Snake Pit".

pkel said:
"More fun in the SP with pals"

Ah, yes, the Snake Pit.
I love your decision to call it the SP. Fun with pals at the SP

Is Darcey bringing his guitar over for Friday Night Blues?
Nah, he's in the SP tonight.
Yeah, always more fun in the SP with pals

Anxiety et al. I, too, will be looking at it very closely over the next year, and like Fiona in the "I'm getting better" thread, I hesitate to say too much or too little about something I know very little about. Live it, but don't know what it is. Quite something. It digs a tunnel into you and you don't even have a word for it. Okay, so call it anxiety.

It comes at me in waves, at times and circumstances of its choosing. Anxiety knows when it can cause the most havoc. It attacks. If you think back, you can often see patterns, and things that look like they might have triggered the attack.

I used to make notes about that. I was going to be a learned gentleman about movement disorders; the Walter Cronkite of Mirapex.

But then a whole bunch of stuff happened.

So all I can say without confusion is that these days, (insert dramatic orchestral build-up here) When Parkinson's Anxiety Strikes, What do 9 out of 10 anarchists recommend? We travelled to the deepest boreal forest to ask Bob, who quotes Linda: FIRST OF ALL, SLOW DOWN.
Across the board. All the time. In everything you do, think, feel, decide. Slow down. Things will get done a lot faster. Fine wine: sip slowly, taste and taste again. Is your life not more than fine wine? Listen deep inside yourself to see your own reactions to things, before plunging into making the decision.. Take ten minutes to slowly look at what its about and how that fits you. Or a day.

And the other thing I do is I throw things at it. sometimes you get the bear but this time the bear got you.

With real bears, do not run. Back slowly away and throw it your peanut butter and jelly sandwich; then back away some more and throw it that big jar of honey you always carry with you.

Same with the bear attack from Parkinson's. I observe what it is doing, I try to see how it is affecting me and if it is trying to deliver a message that I am not eager to hear; I check to see if maybe the bear is right to knock me over before I go on, something that the bear sees in me instinctively and I built a wall around it and pretend it's not there;

BUT, if it turns out that this anxiety thing is actually a bear that views me as lunch, I start throwing things at it. Whatever I can grab hold of and throw. Music, dance, breathing exercises, the advice of shamans such as Linda R and Darcey J., walking in the forest, especially at night (keeps you wide awake because we have night photos of REAL bears in the forest - you know, Parkinson's is quite chicken, as diseases go. Sometimes it disappears instantly when there is danger around).
I throw lots of stuff at it, if anything works, I throw more of that. Doesn't cure me but sometimes gives me a 30 minute coffee break, free of PD; and so then the Beast is less fearsome. Fear is a big problem. But hey, I ran circles around that thing for 30 Minutes. It ducked when I threw things. It comes back, of course, but it's not the only decision maker here and I'm the one who pays the rent, so sometimes I get to set the rules. Sometimes I can tell the anxiety to go away, and it goes away.

Jimi Hendrix was a U.S. Marine, you know. NIght-time low level parachute drops. Good enough for Jimi, good enough for me. Let's have a war against PD, let's fight the disease, and I jump out of the Hercules into the PD jungle, armed to the teeth, with a Jimi guitar solo on my earphones.

Starting to think that actually it will all get solved by love.

mrmojorisin said it best.