Friday, April 29, 2011

NAMI lunch meeting Monday October 10 at Center Stage Deli

hear ye! hear ye!

NAMI Schenectady holds its monthly lunch meeting Monday, October 10 at noon at Center Stage Deli, 2678 Hamburg St., Rotterdam. Speaker is Darin Samaha, director of the Schenectady County Office of Community Services. Darin will tell us about the local effects of the changes in delivery of mental health services directed by NYS Dept of Health and Office of Mental Health. We've learned there are three providers of services vying to be the operator of a health home in this area and beyond. RSS, Inc. is one, Ellis Hospital in combination with Hometown Health and Visiting Nurse Service is another and Fidelis Care, Inc. is the third. One or more will be chosen by NYS Health Dept to run a network of agencies and organizations as case managers and care coordinators. They will focus on monitoring high cost users of medical and mental health care in hospitals and nursing homes to find ways to hold costs down.

We arrive before noon at the deli, have tables reserved for us at the rear of the restaurant and start the meeting shortly after 12. We order individually off the menu--no need to reserve with us. Center Stage Deli is about two miles south of its juncture with Altamont Avenue at its northern end. From intersection of State St and Brandywine Avenue, go south on Brandywine three blocks to Duane Avenue on your left, turn east on Duane and proceed around bend and over bridge to stop light. That is where Hamburg joins Altamont Avenue. Take left fork at the light onto Hamburg and drive at least two miles south to restaurant. It is on the right, just after U-Haul truck rental place and in small block of stores near the road, with sign in front.

Pls read of other events in our October E-News newsletter to be sent by e-mail about Oct.1. It lists dates and times for weekly relatives support groups and the DBSA consumer support group as well as events happening this month. Find back copies of the E-News on our website, See you there. Roy Neville 377-2619

Monday, April 11, 2011

Swimming with the sharks or What I did on vacation

I was out in the Gulf off Florida's Sanibel Island in late March swimming in six feet of water parallel to the beach. I go about a quarter mile up the beach and then turn around and swim back, leisurely, just enjoying the pleasure of it. I'm almost always the only one in the water who swims out this far and stays out for any length of time. I overcome the resistance of waves lapping, the bumps in the water as I paddle along in broad, even strokes. The minutes pass. Nothing disturbs me. There is no sound out here. The children and the grownups I see on the beach as I slowly pass them are silent from here even though it is noisy where they are. Their chairs and beach umbrellas and swimsuits dot the shore with bright colors.

Now I swim with my face underwater and see only yellow--the color when water has a white sandy bottom. When I look toward the shore the water is gray-green and when I look the other way farther out facing toward Mexico it turns dark blue. The line of the dark blue meets the middle blue of the sky at the horizon. I float on my back and look up the sky and the sky infinitely absorbs the color blue. I can stare into the blazing sun, too, which makes me see a blob of orange. It is dreamy and delightful. The sea buoys up my body, now motionless. I roll to one side and take in the whole scene on the beach, pleased that I am the only one here and they can look out and see me daring to be out alone--the old guy with the bald head. I cruise along swimming slowly, my arms moving effortlessly, my breath coming easily and I regard all those on the beach as off in another world.

The days are perfect for a swim--85 degrees and water temperature 72. It is so peaceful. I am aware, however, of the slightest feeling of dread. That spooky feeling that everything could be smashed in a split second. There are sharks around. They roam close to shore in the warm waters surrounding Florida. They are all predators but the small ones that the anglers pull in out of the surf and less aggressive species like hammerheads aren't going to bother me. Just the big guys. You eat sharks—they serve fried shark balls at one of the restaurants, even though they're garbage eaters and carry germs. My father served us shark steaks that he caught with an ordinary line off the pier at Clearwater Beach in 1937.

Over on the Atlantic side you do hear of encounters. It isn't fun because these marauders are sheer power and evil. They have rows of big, sharp teeth like you see on Discovery Channel when they extract one from the sea and open its jaws. No way to escape those jagged tines. The thing is, sharks are dumb or don't see well because they sometimes bump into a swimmer with an immense whack and miss getting a good bite. That's the story I keep in mind, how a teenage girl on her board off Lantana Beach on the Atlantic side was smashed into but the shark missed making a kill. She told the newspaper it felt like getting hit with a truck. And he drove her down in the water to drown her. I'm in only a few feet of water so that doesn't scare me but the idea of being bowled over while I'm innocently watching the girls on the beach, does.

I believe sharks have a miserable time trying to catch anything at all. They don't want a human, that's not their main food. The story is that the surfers lie on their boards waiting for a good wave and the poor shark mistakes the shape of the board for a dolphin, his favorite meal. So I'm careful not to lie motionless on my back too long or dangle a leg that might look like a meal to a shark. I keep moving a little.

Would I know how to fight back if one of these monsters attacked? I learned from Discovery Channel you punch them on the snout in a sensitive place just above the upper lip. Or was that an alligator? They release their grip, although your arm or leg may be inside their jaws by then. Those rows of teeth—BIG, pointy and razor sharp, are going to take a chunk out of you. And you know what that means? You bleed profusely in the water and that immediately attracts all the sharks from South Beach to Acupulco, because they smartly pick up the scent.

So the gambit is not to flop in the water and fight tooth and nail, so to speak, or try to wrestle with a leathery skinned beast far bigger than you and uglier, who loves chomping pieces of flesh off other animals. That's what he does for a living. You run for it—you swim like you never swam before, straight for shore, like you're Michael Phelps racing for the wall in the 100 meters in the Olympics. You yell for help —they will point to you but they won't come. Would you head out from shore to make a second meal for some leviathan? Anyway, you don't stop till you reach beach because the shark has had a taste of you and he's just following the trail of blood now, with a few of his brothers, licking at your toes.

They will lay you flat on the sand while the blood oozes out and the waves lap at your feet. The bystanders will ooh and aah at your gaping punctures. Your wife can't look. The children are told to draw away. When the EMC's come they gently shift you onto a gurney and carry you through the crowd to their vehicle. You wake up to find yourself in a whitewashed hospital room, attended by sweet young nurses. They coo and hover over you while you put aside the pain and tell them how you fought off the biggest of the big sharks. The photographer snaps your picture with the gash in full color. And you'll take a copy of the newspaper back home to show your buddies up north what bravery is really all about. (Roy Neville)

Sunday, April 10, 2011

The doctor as God and how to talk to one

(from A Letter To Patients With Chronic Disease, July 21, 2010 by Dr. Rob in Better Health Network)

This is from a piece in Better Health, a bloggers network on the internet. Dr. Rob opens by confessing he's just an ordinary guy who happens to be a doctor and he's really afraid of chronic patients because they know their illness better than he does. With someone seriously mentally ill, he's aware he can't do much more than practice pharmacy. He's up on that but knows its limitations. So we have this strange apology from Dr. Rob to his chronic patients: “You have it very hard. After spending 16 years listening to the stories, seeing the tiredness in your eyes, hearing you try to describe the indescribable, I have come to understand that I, too, can’t understand what your lives are like. “How do you feel?” when you’ve forgotten what “normal” feels like? How do you deal with all of the people who think you are exaggerating your pain, your emotions, your fatigue? How do you decide when to believe them or when to trust your own body?

Dr. Rob says he can’t imagine. He says “You scare doctors. I am talking about your understanding of a fact that we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand. But chronic, unsolvable disease stands square in our way. You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you. We don’t want to face things we can’t fix because it shows our limits. We want the miraculous, and you deny us that chance.”

OK, Dr Rob: Where is this going?

“So when you approach a doctor,” he continues, “especially one you’ve never met before--you come with a knowledge of your disease that they don’t have, and a knowledge of the doctor’s limitations that few other patients have. You see why you scare doctors? Let me give you advice on dealing with doctors:”

“Don’t come on too strong--yes, you have to advocate for yourself, but remember that doctors are used to being in control. All of the other patients come into the room with immediate respect, but your understanding has torn down the doctor-god illusion.
“Show respect--I say this one carefully, because there are certainly some doctors who don’t treat patients with respect, especially ones like you with chronic disease. These doctors should be avoided. 
“Keep your eggs in only a few baskets--find a good primary care doctor and a couple of specialists you trust. Don’t expect a new doctor to figure things out quickly. It takes me years of repeated visits to really understand many of my chronic disease patients. 
“Use the ER only when absolutely needed--Emergency room physicians will always struggle with you. Just expect that. Their job is to decide if you need to be hospitalized, if you need emergency treatment, or if you can go home. They might not fix your pain, and certainly won’t try to fully understand you. That’s not their job. 
“Don’t avoid doctors--one of the most frustrating things for me is when a complicated patient comes in after a long absence with a huge list of problems they want me to address. I can’t work that way, and I don’t think many doctors can. . 
“Don't mess with the wrong people--you should keep looking until you find the right doctor(s) for you. Some docs are not cut out for chronic disease, while some of us like the long-term relationship.”

My comment: the trouble with this is that there are patients arrogant enough to try to bamboozle the doctor into prescribing medicine they want in the amounts they want, rather than listen to the doctor. If doctors are this insecure they're missing something in the relationship. He's underestimating the role he plays in society as God. In our culture we bow down to doctors. Only if they reek of malpractice--poor prescribing, misdiagnosis and the like, do we complain and move on. People with serious mental illness have indeed had it hard with doctors, not because of what he says but because doctors don't trust the patient to accurately describe symptoms and history. And the docs don't have an awful lot to go on.

So how do you talk to your doctor? Just to take one example. Let's say you're overweight. Or you're switching from one drug to another because the drug you're taking isn't working. There's a great book that talks about this, by Peter J. Weiden, MD et al, called “Breakthroughs in Antipsychotic Medications--A Guide for Consumers, Families and Clinicians” (1999). Weiden says people get nervous talking to their doctor about medication. “The doctor is the expert and they don't feel comfortable raising the question of switching medications.”

He suggests a respectful approach that also lets you in on the decision. You might say, “I'm having a lot of side effects on the medication I'm taking now. Do you think I might have less trouble with one of the new atypical antipsychotics?”or “I've been taking this medication for six months and I'm still having a lot of symptoms. I'm wondering if it might be time to try a different medicine. What do you think?”

Weiden affirms, writing over 10 years ago, that “it's important for you and your doctor to reach a decision together. Be sure to give your doctor all the information you can about what is going on with your illness and your life at the moment. If your doctor says it's not the right time for you to switch medications, be sure you understand why.”

Let's say you and your family have already met with your doctor and decided that it's time to change your medication. “Make the switch,” he says, rather than hesitate. “It's impossible to know ahead of time exactly how your body and brain will react to going off your old medication and starting the new one.” You'll be taking the new medicine while staying on the old in what is called a cross-over. He goes on to talk about the effect of the change on your side effect medicines, how to avoid relapse, and deal with a temporary increase in symptoms. “Sometimes switching medicine is like doing road work,” he says. “When the highway department starts repairing a road, things usually get worse before they get better.” The doctor has good sense. His way of dealing with his patients has a lot more going for it than the hustlers who sell a message today that recovering patients should tell the doctor what is best. That won't work for long. Doctors are changing, too, we believe. They no longer act like God, or shouldn't. (Roy Neville)