Monday, November 5, 2012

Long time for Alzheimer's blog.

Hello blog readers especially all of you in the UK that seem to be faithful readers! I realize I have not blogged since March I believe, much too long, I would like to say I have been busy, and I have, but that is not an excuse. I expect you will hear from my dear friend Joe Potocny shortly after I post this also. He loves to jump on after I post and it is always good to see him.
I know everybody just wants to know, "Is Alzheimer's a mental illness?" (see prevous entries over the years)
As far as Alzheimer's, not a whole hell of a lot to report in the trenches. You are all aware or should be of the concept of biomarkers which is the rage in the Alzheimer's world. Basically blood tests, spinal tap cerebrospinal fluid tests, neuroimaging MRI's PET scans etc, looking at ways to identify Alzheimer's months and years before it ever clincally shows up on a day to day basis. The idea is if we identify it really early before it is even there, we can develop better treatments, and even preventative treatments. The giant Alzheimer's Assosciation continues to clip along, non-profit that it is. One noble thing they are doing is trying to get the "experts" to come together, to work on this stuff. I give them much credit. Remember I tought you I think, that the first order of bussiness for any non-profit is to stay in bussiness. Second, secretly every expert it seems want to be the first to win the "space race' that is discover the cure for Alzheimer's. So the mission to make this not competitive and make it truly more collaborative is a noble thing. I know I am cynical and I know every expert and every Alzheimer's associaiton person has been "touched" by Alzhiemer's be it a grandmother, in-law, aging parent, or spouse. Everyone has been touched it seems, that's how prevalent it is.
We tend to gauge people on how close a relation that relative was, are they still living, etc.
Example I know when I show up at the local Alzheimer's walk, I feel more removed and left out, my pain is not as poignant objectively as some family member currently living throught it.
Nobody seems to give a crap. I mean my mother has been dead for 25 years now from Alzheimer's, so get over it right? I seem to have less creidbility as a survivor as the years go on.  Perhaps I have gotten over it, the fact that I am not on the inner circle anymore, put some daylight between it and me. Perhaps when you are over it, you still feel bad.
So anyways the biomarker stuff is not cmoing to you corner primary care any time soon. If this ObamaCare stuff continues you can and will see a lot less attention to more meds and treatments being developed. My opinion, and prediction. Many in the know would vainly and sarcastically refute that, but I am sure it is true. God help us tommorrow at the election.
I am seriously considering changing up the focus of this blog. There are so many places you can go to find out the latest fads and Alzheimer's news. I know you get things here that others don't know or say or are afraid to say. You have heard all the stories, you know the course, you will survive. If you are going through it, someday you will be like me 25 years later, still feeling bad but wondering why you don't fit in at an Alzheimer's walk, or if you are like me, and lost somone to AD a kong time ago, you know EXACTLY what I am talking about.
Good luck voting, don't be ashamed or embarrassed anymore to vote for the right guy espeically if you live in a geographic region or demogrphic that exepcts you to vote a certain way.
Lets wage a war on political correctness and be proud of who we are again! Vote from your heart not from hate.

Friday, March 9, 2012

25 years ago my mother died from Alzheimer's disease.

From my sister Madeline the other day on facebook_

"Today is March 6th. 25 years ago today, my mother left this earth and moved into heaven. She was 69 (5 days short of her 70th birthday) and I was 29. For almost the last 10 years of her life-she did not know who her children were. She lived in a very good nursing home with wonderful care. When she was diagnosed with Alzheimers Disease in 1980-no one had heard of it except my physician brothers and sister in law who was a medical geneticist. You learn how cruel life really can be when your parent asks you who you are. I tried to do everything I could to fight against Alzheimers-(became the youngest board member of the Alzehimer's Association, gave trainings and talks- everything physically possible to annihilate this killer disease. Now those words are a part of the American fabric.
I only found out something so special about her last year. When I was a teenager, I spent a total of two years on the adolescent medical floor at St Vincent Hospital in Erie. (My parents had met there when my father was an intern and my mother worked there and volunteered for decades there.) Last year, while perusing through her scrapbooks-I found that she had been the president of the Hospital Guild when they raised funds to open an adolescent unit. She never once mentioned that to me. Nor was it she that told me that she used to play the organ at the Warner theater in Erie to go along with the films in the 1930’s. So many things I can never ask her about.
Everyone felt her kindness and caring and how loved her life so much-as a wife,mother, daughter,musician, community volunteer and so many other roles. My greatest sadness in life was not to have parents around as an adult-how lucky people are that could have this kind of relationship-truly a gift. My luckiest gift was to have had the parents I did even though it was for a short time. Luckily, my parents named me after my sweet mother-We were the two Madges. God bless Madeline Mary Mentz Sivak-March 11, 1917-March 6, 1987.

Madeline Sivak "It was so heartwrenching painful to try to explain to people what was wrong with my mother-as if dealing with it at 20 wasnt hard enough-the insensitivty of most people was what now I consider amzaing seeing how AD is now-"TRENDY DISEASE". obviously we might have what you call bitter feelings-I just don't think we can ever get rid of them it was such a heartwrenching decade."

How I'm feeling about it all lately.....

"a quarter of a century of broken heartedness now and a piece of yourself and your very fabric, identity and self-worth ripped from you slowly and sadistically unrelenting-thats what AD in a parent does to you as a kid, (despite all the hope and positve spin BS on the disease), and then you cover the wound that never really heals and limp through life- Thats Alzheimers disease, and nobody really cares becouse it is too icky to talk about, until it happens to them. Then they want to know how you got through it, so you say "I tried to tell you, don't you see? This is why I am like I am" I so wish I had something to offer them. I promise Alzheimer's in a family member does not make you stronger- it weakens and chronically wounds you. Sorry"

Monday, February 20, 2012

Glenn Campbell and Alzheimer's Disease -Music as a Gift for AD

Was watching Fox News the other night (because I watch Fox News, and I am not ashamed) anyway they had an AD special on and were talking about Glenn Campbell. He of course has AD and is still touring. It was wonderful to see. Music is fantastic, it permeates the temporal lobe and the memory long term and the personality. It soothes the soul. It seems to be preserved as a memory longer than almost any other entity or medium.
Leeza Gibbons was also interviewed along with Maria Schriver. Leeza is an incredible spokesperson, and presented wonderful metaphor about the primary caregiver being the first rsponder iin an emergency. I really wish she was more of a National Spokesperson for AD. She does not seem too political and very kind, (not sure if that precludes someone from a position like that, but she is a wonderful advocate. You could feel the emotion and pain in both her and Maria, just below the camera interview surface. I have always maintained that if it is 1 year or 100 years that the pain of AD in a loved one the heartbreak never really goes away, but you do go on.
Anyways I love Glenn Campbell, this is a wonderful action to tour and raise awareness that people with AD are just that- PEOPLE.
My son will be going to several nursing homes in the Duluth area and playing guitar and Piano for the residents. Again nothing better than music. He is 16 years old and I am not able to emphasize to him how lonely many residents are and how powerful music is and what a gift he has in music to be able to do this.
His grandmother my mother died from AD five years before he was born.

Saturday, January 28, 2012

Your Father is Dead. Grieving Children-Fathers and Sons.

It was 34 years ago today January 28, 1978, The residents of  Cleveland and Buffalo and Erie PA (where I was), remember it as the "blizzard of the century". It was a Saturday Morning and the wind was howling and the mountains of snow were piling up. In Cleveland. it was and still  remains the lowest recorded barometer reading in history.
 I had just turned 16 a month before. On that  morning, I stood in the driveway trying to jump start our car, as somehow my father in the hospital at Cleveland Clinic 100 miles away from Erie, had taken a turn for the worse. We had to somehow get the car started and make it 100 miles in the blizzard to see him. No one including myself, believed in his mortality. It wasn't magical thinking, it was just that my father the strongest, smartest person, whom could provide all forms of safety and security, like no one else in the world ever would or could.
As I stood in the driveway, that phone call came- the one that in an instant changes the course of your life-   'we didn't need to come to Cleveland now'. My Mother in a panic shouted  to my sister and brother, "Dad just died."
My first thought was, "Oh no. Now what am I supposed to do?"  34 years later I am still trying to figure out the answer. It is a timeless question for the ages maybe only asked and answered in a way between fathers and sons. I do wish I would have asked him when he was on earth, but I am not sure I would have been ready for the answer then. It might be something that is demonstrated through life, a question we go back to and revisit over the life span.
In that blizzard. I knew then that life would never be the same. I wondered what it would be like for my father to be dead. Would he be all right? How could he leave us? What would the world be like now? What was I supposed to do right then and what was I supposed to do for the rest of my life?
I had a lot of questions and there was now a fundamental problem that has plagued me forever. If the most secure thing in the world -my Father , could die, then there really was nothing secure at all in the world.
I had lost part of myself and part of my identity. When you lose part of your heritage, you roots and your essence, it might figures that one would not know where they were supposed to go or what they were supposed to do from then on in the future.
My life has never been the same, The world has always been a bit more uncertain, and maybe a little cruel, without that safety and security. His loss has colored every aspect  of my life. All the success and all the failures, all my roles as a man have been touched by this loss. From father to husband, brother, uncle, friend. personally and professionally.  All of the good and all of the hardships, since he died, oh so many hardships, the pain, the sorrow and agony, which I mostly as a man have kept to myself- all these have been colored by his loss, and they have been experienced and endured without him.
On earth I was nobody's son anymore. My mother soon took sick with Alzheimer's. It is a foul, lost feeling not being anyone's son, not belonging to anyone. We create relationships through out life, some are fostered and  nurtured, some are lost and decay, but there is no bond like a father and  son. There is only one.  

Tuesday, January 3, 2012

Forget the Politics...Sorry....Doctor vs Provider what is difference between a psychiatrist and a psychologist??

"Uhm same thing?" psychiatrist or psychologist? Nope. "Uhm ( from the sophisticated smarty pants of society) a psychiatrist can prescribe meds and a psychologist can't. True but is that the only difference, is that the defining divergence?"
As you probably know I am now from what I can see the most politically incorrect PRO-PHYSICIAN Blog I can find on the world wide web in the English Language. As you know I don't side step stuff by providing the same constant SAFE-helpful information on common medical problems that you can find in a thousand places on the Internet. Granted my blog is true honest and candid, it is highly opinionated, and I like to think I speak for a lot of doctors whom are simply terrified to say some of the things I say about the adversity a physician is up against in this day and age in the practice of medicine. Of course I don't provide SAFE blog posts on all the latest medical technology ipod and ipad apps and all that BS. Another good clean and SAFE fun topic for doctors to blog about.
So I have an opinion on this question and some facts. I even discuss  it somewhat in When Can I Go Home?
Yes psychiatrists are physicians and they can prescribe medication,
But so can Clinical Nurse Specialists and Nurse Practitioners, and Physician Assistants, all have varying degrees of prescribing authority and autonomy and this varies by state. In a couple states psychologists can ever prescribe psychiatric meds.
The honest to God truth is that this physician extender, or mid-level practitioner model had its origins and motivations in necessity. No one wants to go into the Field of Psychiatry. There is a shortage of psychiatrists.

(I did a recent interview for the Minnesota Medical Associations monthly journal talking about the recession and the effect on depression. The sophisticated and educated Free-Lance Writer hired by the Association to conduct interviews had no idea that psychiatrists were just about the lowest paid specialty in Medicine.)

Okay so we know people don't go into psychiatry to make money and if they think they are , then they are misguided and ignorant, no big issue there.

I won't get into all the reasons why there is a shortage of psychiatrists, it isn't about the money, it is a host of reasons.

Now when you take the shortage issue and you couple it with that fact that politically and perceptually doctors are arrogant SOB's whom only care about making money and therefore just not good people, than you have the legitimization and flourishing of mid level prescribers in psychiatry.

Let me illustrate my point further by example.: I had a student nurse once, whom was getting a masters degree and essentially then getting her license to prescribe psychotropics, I was supposed to teach and train her. She was a good person and quite bright and caring toward patients. I asked her, "What is the difference between a physician and a nurse prescriber?" She advised spontaneously, " nurses are different than doctors. Nurses talk to their patients"
I will never forget that. To this day it irks me and hurts my feelings to no end. She truly believed that and was indoctrinated into believing that, She was not stupid just politically brainwashed.
All I do all day is talk to patients and give and give and give my energy all day. It has nothing to do with the biological mechanism of the meds. It is what a doctor- a good psychiatrist does, Nurses and psychologists do not have a monopoly on talking to patients.

So once I was at a music shop and buying my son some guitar strings the quintessential music story pony-tail guy saw my credit card signature and he said "Ahhh... MD making decisions"  he actually had it right. No one has ever signed anything since the day I graduated form medical school below my signature, An MD always gets to sign at the most bottom line, I swear to God. The signature underneath everyone Else's assures that individual is the master of all liability and assumes all responsibility when the rubber hits the road,

Now the reason I talk about liability and responsibility goes to making decisions. By the nature of training the physician is really not allowed to have a comfort zone for making decisions, Decisions imply ultimate responsibility and liability. Sure you can have colleagues to consult get second opinions, but in the end the physician really has no where else to go. By the nature of the training doctors make life and death decisions in the middle of the night after no sleep for forty hours. That is pressure. Psychologists don't have that kind of training,
I may have blogged about this in the  past but the point got driven home to me a couple weeks ago. Talking to some psychologists and one in training, this therapist trainee was overwhelmed and intimidated by a patient. She wanted to pass the patient off to someone more experienced, she did. no problem right? So how does that work. Will there always be someone more experienced and how did they get that way?
Training more Training and supervision.
Okay here's the bottom line as a psychologist in your training it is ethical and appropriate to give the patient away to someone Else if you are scared and over your head. No problem sounds like the right thing and it probably is, especially for the patient (psychologists call em' clients like lawyers and accountants and advertising executives have 'clients') I don't want someone who does not know what they are doing.

Now jump back 20 years, I'm in my residency I am overwhelmed and intimidated by a patient, I don't even want to see the patient behind a closed door. "Please someone more experienced take this patient off my hands. PLEASE! I'm just a resident,.... a doctor in residency training.
So an old supervisor long dead now says to me, you will have lots of patients over the years who are overwhelming, frightening, you have to learn to work through it, accept it deal with it, get good at treating them. There may be no one in the end more competent to fall back on. Get supervision guidance. Learn. I did, the patient lived and got through the year and things went okay, I did all right, and actually helped the patient. I did not have the luxury to dump the patient on someone more experienced.
Therein lies one of the most fundamental difference between psychiatrists and psychologists and nurses.
If a  doctor does not know what they are doing, they damn well better get some supervision and figure it out, they don't get to send the patient somewhere else because "ohh it's too hard"

Anyway I hope and pray for all of you blog readers caregivers around the world that you had a Blessed Christmas or Happy Hanukkah and have a wonderful and prosperous New Year.  And thanks for Reading my blog in 2011. I know most people are looking for the difference between delirium and dementia and depression, or questions about Alzheimer's being a mental illness. I will keep blogging in 2012.
I do not forget all of you caregivers world-wide, and we will hope and pray for some SIGNIFICANT Alzheimer's progress in 2012.

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