Sunday, April 25, 2010

To Dr. Joe

I am having some problems with your posts. For me they are not simple enough. We with this disease really have problems with professional type language. This is not a complaint, just telling you my side when I read your posts. I know your site is for caregivers and to help them. But I know a few of us with AD that read your blog, they may also have this problem. I still consider you a friend, even is you are a shrink. That does not make you bad. My day today is, I sucked up my blog, brain is shrinking and so is my understanding of what I read or attempt to.

God Bless You My Friend,

Driving with Alzheimer's Disease

There are a some pivotal moments in the Alzheimer's journey. Moments that are never forgotten by family and caregivers. They often have to do with loss of autonomy. They are symbolic and somewhat embedded as trail markers in the long journey. Kind of like climbing a mountain, when you get to the end of the tree line, or the first glacier, or the bivouac. The Alzheimer's journey is an uphill climb, except at the end of the climb you are not necessarily rewarded with the beautiful view at the summit. Oh well enough metaphor.
One embedded moment is the diagnosis, another is the loss of one's home, entering an assisted living, or nursing home. Another is driving or the loss of the ability to drive. It is a profoundly emotional moment.
One of the most poignant things about it, is that the disease robs the person of the ability to drive, but being the ugly little entity the disease is, an actual person, has to take it away from the victim. The doctor, or a family member, or some state employee, or worse yet contracted county employee working for the state at the department of motor vehicles. We all know how empathic our civil servant public employees can or can not be.
As a family member I have personally lived through the driving issues. As a physician I have lived through it many times more with patients and families.
It is never pleasant from any end. I talk about it a lot in the memoir. In my own personal situation, my mother was loosing her ability to operate a car. A big part of the problem for her and for most, was not the actual operation of the vehicle, but actually finding one's way, around in familiar, places. Next was the depth perception and visual-spatial issues.

Ironically, my mother was still a licensed driver, but loosing her capacity to drive. I was just seventeen, and had gotten my learner's permit. I had more capacity to operate a motor vehicle than she did, but I could not drive the car without a licensed driver in the front seat, which was my mother. I hastily moved towards getting my regular driver's license as soon as the laws permitted.

With the loss of autonomy for the driver, comes more responsibility an sometimes burden for someone else. That is a tough thing. We don't ever like to use the term burden. For some it is not, other's deny and still others thrive on taking over the transportation responsibilities. (Not to many really, but we don't admit it because then we struggle with the concept of selfishness)

Without a doubt since the end of the industrial revolution, and going back to the days of Calvin Coolidge, the writing of Sinclair Lewis operating a motor vehicle is the ultimate symbol of autonomy and power. We even make cars to be a status symbol and a signature of who we are. Remember when you were a teenager and got your license? Did your life change?

So what happens? Often the victim has a sense that they are not a good at driving and what it entails. They may be anxious or not want to drive in unfamiliar places, but they can't quite articulate it, so it is up to others to figure this out. That leads to one of the most common phenomenons I see as a doctor. Driving the familiar routes. Only to the store, the gas station, the beauty parlor, to church. Just a few blocks or miles, sometimes a route driven for forty or fifty years. The route may not have changed but the disease changed the person.
So I commonly have gotten over the years this: "Mom or Dad, only drives to the store, or to church. There is no one to take them to the store or to church. They are comfortable with that. That's OK right doctor?"
Well sadly it seems okay, but the honest to God truth is, it is probably not okay. Remember Alzheimer's is a variable disease, on a day to day basis, with a downward decline over months and years. There are GOOD days and BAD days. Some days the driving will be spot on, and others maybe not so much. You never know.
The doctor once again gets to be the non-caring and non-understanding bad guy. The bearer of bad news. The messenger gets shot. The doctor does not get it. They only drive to church and the store. The doctor is a jerk, Let's go to somebody else that says its okay to drive.
The truth of the matter is, you can find another doctor who may look the other way, these may also be the docs that are rather apathetic in trying to treat the disease. -since there is nothing you can do about it ultimately- bad attitude.
Remember most accidents happen within a mile or two of home. a motor vehicle is a potential deadly weapon, sorry it just is.
Notwithstanding the fact that there are a lot of really crappy drivers on the road. Driving is w weird thing, most people believe themselves to be an above average driver. Not to mention the fact that you have little rude hormone boys under thirty thriving on the pseudo power of the vehicle, and with each generation, now angry little rude girls also driving with that false sense of power. No respect for others or the deadly weapon they are operating. Not to mention the fact of all the 45 year old victimized by life adolescents, who are operating the weapon under the influence of mi sued alcohol or whatever illicit drug, they use to make there life seem better, Then we have the popular misuse of benzo's and the ever popular ambien, and opiates. Of course we can blame the doctor there. Prescription drugs are a problem, and society continues to minimize how we throw these around, so when the doctor takes it more serious than society, people don't like it, so they go to another doctor.
So throw in the Alzheimer's victim, it robs your judgement and reaction time, throw in everybody else on the road, and it is a bad set-up. The poor AD victim may not be able to react to all the carelessness on the road by others, let alone themselves. And Yes there are bad drivers within a mile of your home.
As a Doctor it is less tense when the AD has stopped driving on their own, or at a family member's urging. That is not often the case, so the doc has to start the process. This is not to mention the fact that the doc is also responsible for whatever happens on the road. Hence lots of lawyers. So it is a legal thing and an ethical thing and always painful for everyone taking away the privilege to drive.
So the doc sends a letter to the DMV, depending on what state you live in.
Here is the best part, the public employee at the DMV can sort of do whatever they want, not so much accountability for behavior day to day, as you may or may not know in the public sector, The DMV employee may be nice or mean. It is about them and if they have a bad day or family life or whatever. Hence they may give the AD victim one or a few chance to pass the test. They may start over. Yes it is all computerized, but believe me there is leeway depending on where you live. In addition if you live in a small town your loved one may even know the employees at the DMV. What do you think will happen- there is some variability depending on how the employee feels about your loved one over the years. Throw in the factor that your loved one may be having a good or bad day, when they visit the DMV. You have a total crap shoot. They may or may not pass. If they don't pass, the chips fall and lots of consequences, and change. If they do pass, everyone sort of denies the illness a little bit and life goes on, and God forbid nothing happens on the road.
This is why nobody knows what to do in the end about the driving issue. The neurologists tried to develop some guidelines recently but i9t is still a major quandary. In the end family members are still in limbo and filled with anguish over this. Doctors get to be once more vilified over it. It is heart-breaking and scary. It is a sad moment and part of the ugly process of the disease stealing from the person and their dignity. It can be pure anguish for the family. It is a universal moment filled with a myriad of emotions. You are not alone.

Tuesday, April 20, 2010

Why is bipolar a stigma but not depression?

What is amazing is how far we have come in eliminating the stigma of depression. It is now more okay than ever to speak of depression, to know what it is and even admit you might have it. But God forbid if you have something else. Take bipolar disorder for example, poorly misunderstood, feared, hated, stigmatized and generally a black mark to have, by our unforgiving society. Probably over-diagnosed in some venues, and yet missed in many others. The depressed part of bipolar, looks just like major depression, indistinguishable in that phase, from unipolar depression, that is why it generally takes on average of about 11 years for someone with bipolar to actually get the correct diagnosis, and therefore treatment. Plus it feels pretty good to be manic, till it gets to be a bit much. Sometimes the only subjectively bad part of mania is overwhelming anxiety. Objectivity can be lost by the sufferer.
Here is the actual problem that nobody seems to get, even lots of doctors/
Most people with a mood disorder do not fit into a perfect box or pigeon hole. There is a whole area or bipolar spectrum disorders that don't fit the classic DSM-IV definition. The so-called "soft bipolar' disorders. The truth of the matter is, it is on a continuum Hence for these individuals lots more antidepressants prescribed, remember it is easy to diagnose the depressed part. And whats great is that most of the antidepressants are approved by the government for treatment of anxiety. Except there is probably more anxiety associated with the bipolar spectrum problems than major depression. Antidepressants generally will stop working at some point for people with bipolar, or even make things worse. That is why correct diagnosis leads to correct treatment.
If you mention bipolar, the gloves come off. If you simply discuss "mood cycling", kind of like a roller coaster, except cycling enough to cause problems, then everything is okay. It is a safer way to say things. It gets away from labels, and the vicious cycle of stigma. It is more acceptable. Then you can get down to actually discussing treatments for the mood cycles. You don't have to argue about the diagnosis anymore, when you just treat the person, and their symptoms- One needs to get away from labels
Maybe the problem with Alzheimer's is similar, the same with dementia. Let's face it, there is still a big stigma, if there was not, we would be a lot closer to a cure. Perhaps if we called it something like "cognition slip" instead of Alzheimer's, people would stop reacting to it as if it is the plague or some black mark on one's spirit.

Thursday, April 15, 2010

They Say Phsyc's Know What They Are Doing!

My name is Joseph Potocny, you see Dr. Joe and I have known each other for sometime now. But let us question his sanity, he is a MD I am an AD (Alhziemers person) and have FTD as well. Now who knows more him on the far left or me on the gentle right.

I thank Doc for asking me to blog here, I guess he is ready to be punished for the well shall we say less than upstanding life he has led. Not true, he is a good guy. 

I have had the disease for over 3 yrs confirmed, by the time you know whose professsion would listen to me. So today like many days has been filled with times of where the hell am i and what am i doing.  I was going to do this as a video, but he told me creatures were not allowed to appear in person.  I read docs' blog daily as he makes posts, some I just do not understand, that is the way it is. Others he is right on.  See he was a victim of this disease on the other side and could not understand why his mom was leaving him. I live on the other side of the tracks and do not understand why people are leaving my brain and world. By the way Doc and I are getting married next week last I knew.

I hope to be back latter, but with a more direct post that I do as normal. Just to prepare you visitors and friends of Dr. Joe, I am very blunt and not always choosey about my words. Nor do I use spell check.  Read his book, I think you will find solace and vindication in it ( wow big words ) must be getting late.  I needed help from my wife with my thought processs on trying to understand it. But I need help in finding the bathroom.

God Bless & Keep You & This Country of Ours!

Friday, April 9, 2010

Health Care Reform

As a doc, I often get asked the question, what do you think of the new health care reform? I can give the usual answers, "Well we needed to do something." "I am cautiously optimistic." These are true statements. The plight of the physician in 21st century America seems at best to be uncertain. That is what it is: a plight. It is hard for me, just like everyone else to predict exactly what is going to happen. It is so convoluted and complex, thousands of pages and issues. So many gradients and steps. I do know as a society we are more in the "here and now" and all about immediate gratification, more than ever. That is no different in the personalities of politicians and lawmakers, than it is in anyone else. We are all about image and appearance in the here and now.
Being in the here and now is fine for meditation, but I am not so sure it is fine for making laws and planning for future society.
So the facts I can speak of are true and relative to my plight. I know right now I would be deathly afraid, like so many Americans, not to have health insurance. Life is unpredictable, and you can't live your life and plan for castatrophe but on the other hand, things do happen. Anyone reading this knows that. Hence things like AD in a family member etc. Hence many of us know this and maintain health insurance as best we can. My family is in pretty good health and for an average policy we have to pay nearly a thousand dollars a month. I am quite certain that those premiums will go up considerably with health care reform. Once again trying to do the right thing and take care of your family, often seems to go with punitive consequences.
That issue of the insured premiums having to go up in cost to cover those without insurance is an absolute farce. I know that many people only access care in the ER and don't pay a bill; those debts go somewhere right? It would be most interesting to truly trace a dollar in cost for health care. If the insured covering the uninsured and thus paying higher premiums was actually true and not a "catch-all" chant, the insurance industry would be more like: breaking even. That is actually not the case, is it?
From the perspective of a physician practicing on his own in Northern Minnesota in 2010, here's what else I can tell you as fact.
Right now it is almost impossible to treat a patient with a prescribed therapy and medication without fighting with an insurance payer to get that prescribed therapy covered. Every single day I fill out forms, requests, appeals, protests, to try to get a patient their appropriate medication. You don't get to be a doctor anymore, because that struggle takes lots of time, so it takes you away from trying to take care of patients.
You struggle with people that are sitting on the phone in some cubicle, who don't really know anything about patient care and most importantly the name and the face and the life of that patient or any patient of a doctor to whom they are denying care.
They are working right; trying to make a living just like everyone else. Public sector and private sector employees. They are basically taught, in so many words that the physician is the "bad guy". It is ingrained and instilled in them, at their little week-long training seminars at some Radisson or Holiday Inn (lunch included), that the physician is somewhat of an advesary; trying to prescribe expensive and unneccesary treatments. Now they might not fundamentally have that "chip-on-the-shoulder" prevasive American attitude about doctors, yet it is pretty easy to tap into. It get's you kind of fired up and believing. Plus you get to make a living. It is almost justice, yet no name or face to the patient, the person needing the treatment. It's not new and it will get worse, I can see it everyday in my practice.
One of the saddest parts of the plight is that the patient holds the doctor accountable. It is just human nature. So you have the insurance company demanading that you prescribe what they want, You know as the doctor, it is not the optimal therapy. You advocate and fight for your patient. We used to win those battles but over the last year, we are consistently starting to losse those battles. no matter how hard we fight. In the end it is still about the doctor-patient relationship and that human connection, not the insurance company. In the end, The doctor has let the patient down, not the insurance company, More devisive, more advesarial, than ever. I promise you: that will only get worse. And the distribution and justice and equity and fairness, just does not loom on the horizon with health care reform.
I think it was absolutely pathetic when President Obama had all those people, (physicians) standing around in their white labcoats, for photo ops. How stupid do we really think the American people are? How demeaning to physicians. Sort of like a beauty pageant or a dog show. I mean more importantly those people in white lab coats standing around for the photo ops, (physicians right?)- who exactly was taking care of their patients that day? Maybe their partners, right?
Heres another fact, in Minnesota I still get to keep paying an extra 2% income tax called the provider tax, a tax to cover the uninsured. If you take care of patients and make a livng at it and don't work for some large corporation or institution, where it is all rolled in and you simply get a W-2 at the end of the year, well then it is not an income tax right? For me it is an income tax, since I derive my living directly from caring for patients. No filters, no employer. I promise you it would feel so much better if we actually covered everyone in Minnesota, but there are still thousands without insurance. So where does my extra income tax, (2% back to the state for taking care of patients) go? God only knows. If only we could get rid of the small or private practitioner everything would be better right? A dying breed. A thing of the past. Sort of like the airlines or banks. We only need a couple of health care entities, corporations, that will improve health care right? I mean look at how good the banks are doing, and the airlines.
Let's look at the VA, the largest health care entity in the USA. In my experience from patients I talk to, you either have a fantastic health care experience or an awful harrowing one. That's just what I see and am told directly by patients. Not too much equity or fairness or consistency, just sort of hit or miss. The private sector is not much different. The idea seems to be: more people managing health care, more executives, more people employed in the health care industry, trying to make a living, governing the care. (oh and going to lots of meetings, focus groups, committee assignments, clip boards, Coach briefcases, company or federal credit cards, hotel check-ins at government rates or corporate rates, for more committee regional meetings and retreats all around the country, first class or coach and basically walking around as health care executives)- somebody has got to pay for ALL that. No patient name, no face.
Eventually there will be no choice, there will only be a couple of entities, and payers, governing all of health care. Does less choice improve quality and the health care experience? Maybe, maybe not. I know as human beings, it is nice to have options, choices. Right? Sort of helps the human spirit. Less choice and more monopoly is not the same as justice or decent care, but few seem to get that.
Here's another FACT I can tell you. Remember that mantra, ever so popular, "You get to choose your own doctor". Well here is the honest to God truth in my plight. There is this entity in Minnesota called GAMC. It is an arm of Medicaid. Starting June 1st, patients with this insurance, have to go to a designated provider, a care coordinating organization, a big entity of which I am not part of-(to thy own self be true). There is a clump of money to cover all these patients given to large health care entity: no more no less. Some patients cost a lot to care for and some don't cost much, right? If you come in under cost at the end of the year you win if you spend more taking care of patients, you loose. It is called capitation. A ceiling or top. It is something I first heard of in 1990, back in New York state during my residency. It didn't work back then and it went by the wayside,- most states learned from that, but now it is back. Nice incentive right?- That good old capitation.
So the bottom line with this GAMC is that patients with this insurance, many that I have followed for years, are not allowed to come and see me anymore. They have to go somewhere else. Not a problem right; the large institutions have good doctors, no question, and also lots of other people in the doctor role, providing medical care, like nurses, and physician assistants and things. Cheaper and all, and no of course it is not watering down the care. No problem. But if you even remotely imply that maybe the physician still offers something the nurse prescriber does not, you get annihilated. That is the most politically incorrect thing of all time. The fingers point and the physician looses. Arrogant, prima-donnas that those doctors are, right? Easy to be politically correct on that one, patient does not get too much say.
So my patients with GAMC don't get to come and see me anymore, they get to change their doctor sometimes after many years. The government provided insurance says so. No one notices that good outpatient care prevents inpatient hospitalizations. Wow.
I wrote my senator, Yvonne Prettner-Solon. she wrote back and said she didn't like it; she voted against it, was on my side and that was it. She is a democrat, in Minnesota, unbeknown to most around the country the democratic, party is called the DFL. It stands for democratic farmer labor, a remnant of days gone by, but it sticks. She is a nice person and a psychologist- my state senator, but there was not much she could do for my plight, and more importantly the plight of my patients. Roll the dice, hope for the best, lets how it shakes down. PATIENTS DO NOT GET TO CHOOSE. Sorry but that is the honest to God truth: One little example in my little corner of the USA on the Western tip of Lake Superior. It is really happening, and there is a tremendous momentum of more to come.
I called my local news; it was pretty easy to get interviewed. It was actually easier to get on the news, than it was to get an appointment with a physical medicine and rehab doc at one of the large institutions for the herniated discs in my neck. No lie.
So they interviewed me. I talked for 20 minutes. I got a 10 second sound bite, that at least covered my most important point. The physician-patient relationship; the therapeutic alliance is still the most important thing in health care.
The tease for the story was "GAMC creates headaches for some private physicians in the area". Nice divisive tease right? Make it about the doctor, subtly reinforcing that adversity. They could not mention the fact that it is about the patient and what that it will all actually mean for those human beings. It is something that it is actually significant for those human beings, those names and faces, that have to, after years, disrupt their care. If we make it about the physician having a "headache", we can deny the reality of what is really happening right? Get lost in our emotions and subtle reinforcing of that physician adversary. Oh well it is only the media, but I tried. It is not like we believe everything we here on TV and read on the Internet, or is it?
Put it this way, I came from a long line of physicians, my father who died when I was sixteen was the first; he inspired a lot of others. My son is 14, I always had a vision of him maybe going into medicine. I guess he would be better off becoming an attorney, he will do what he does, but I am not steering him towards medicine. I just can't do it. I see the doctor and the healer, the ideal, simply deteriorating. Every single day, every year, every decade. That is so very sad.

Monday, April 5, 2010

Hello all. Just a quick blog and an excuse to upload a picture of my dad and myself. My daughter, wife and I visited my folks at the memory care home yesterday on Easter. I go visit them every Sunday no matter what and take my daughter. It is always tough to visit but we look for the bright spots. One blessing is that my daughter still has a strong connection with my folks. She is not shy at all and will play with them non-stop. She has visited every weekend since my mom moved in with dad. She played blocks with grandma and grandpa yesterday for about 30 minutes straight. Dad seems much less agitated when he is playing with her. He lights up. My daughter and I make a day of it and usually grab daddy/daughter lunch on the way back from "grandma and grandpa's new home."

Couple of weeks ago I visited and had on my Georgia Tech pullover (I'm a GT alumni). Dad saw me walk-in with that GT shirt on and immediately went to his closet to pull out a GT hat. That was totally cool. I gave him that hat several years ago. We clicked a pic of that visit and I wanted to share. Thanks be to God.

Saturday, April 3, 2010

WTCM 580 AM Traverse City, Michigan I will be back on the radio in Traverse City, Michigan on Monday April 8th at 9:08 Am on the Norm Jones Show talking about the book and AD. You can listen live on the link, or if you live in the area tune in. 580 AM Talk Radio WTCM.Happy Easter and Passover.

Joe Potocny Living With Alzheimer's Blog

I would like to thank Joe Potocny for the honor of being invited to guest blog on his piece of the internet.
Joe has Alzheimer's. Joe is a tough, smart and dignified guy. His mission is to help us to all remember. Joe lets us know that you never ever cast aside a human being who has the disease. It is as simple as that. He has a fantastic blog and you see his essence and spirit in the glowing faces of his offspring. The disease never ever takes that away. Joe read my memoir When Can I go Home? I was greatly honored to get his thoughts and his review. I mean why not just ask someone who has the disease? They are people just like everyone else. They count and they matter. Sometimes it was a little hard for him to get through the pages, he did it, he took it seriously and responsibly, because he knows it matters but most importantly: he matters.
My gratitude for him knows no bounds. go to his blog and read his thoughts, his feelings. This disease is not about what we assume it is about, it is about names and faces, people who matter, human beings who count.
Here's to you Mr. Joseph Potocny.......

Talking about the book with the Lake Superior wind....... a calm day