There is no clear and consistent reason that is obvious to either of us that explains the restless nights that come at random — and far too often.  Sometimes there have been a couple of long naps during the day that might explain it.  Not this time.  Sometimes there is caffeine later in the day; there was a little in the mid-afternoon.  Sometimes there has not been enough in her stomach, occasionally due to poor timing of an ice cream treat, stealing her appetite for supper.  Sometimes there is an activity the next day that has caught her attention and refuses to allow her to relax.

Sometimes it is the hallucinations.  That was the presenting reason two nights ago.  When I was using the monitor to watch, her head would lift up quickly and the she would look intently at something.  Her head moved in that way every minute or so, often less than a minute.  Often she would be up on her elbow, many times up and sitting on the side of the bed.  It lasted until some time between 3:30am and 4:00am.

The hallucinations were the usual ones, animals, threads, needles, people.  While I recognize there is a disease producing the problem, nonetheless, I got more frustrated as the night wore on.  There was, of course, no reasoning away the hallucinations.

Not long after we both finally got to sleep (a couple of commode trips during the sleep time), it was time for me to get up, since Wednesday morning is the Spiritual Formation group that meets on the deck at 7:30am.  I get up at 6:30am each Wednesday and move as quickly as I can to get myself showered and dressed, the coffee made (the most important task), set up the deck, get Mary Ann’s pills and yogurt and ice water and granola bar opened.

Normally on Wednesday mornings, I set up all the above items in the bedroom on a table next to her transfer chair so that if she wakes up before the group is done, she can get her pills taken and food in her stomach on her own.  She almost always sleeps until the bath aid comes around 9am.

Not yesterday!  After being awake and active until perhaps 3:45am, she got up shortly after 7am.   As a result, I needed to stay with her rather than go out to join the group.  After about forty-five minutes, she chose to get back into bed for a while.  I was able then to go out and participate in the group for a time.

It is embarrassing to admit how selfish I am, but I was mostly concerned about the pain in my back and the fact that both the night and my morning were being stolen from me.  I should have  been  more concerned about the challenges the day would bring Mary Ann, since she would be tired and the hallucinations would be worse  than usual.

The day went surprisingly well yesterday.  I began this post last evening but was too tired to finish it.  I just shut down.  We both got a decent night’s sleep last night.  For a few hours today, we had the wonderful gift of a young lady who lifted the wheel chair in and out of the car for a grocery store trip and our Parkinson’s Support Group meeting.  Since then a challenging commode trip and return to bed has irritated my back again, but it still seems to be improving some.  She appears a little restless at the moment, but I hope for some rest tonight.  As always, we will just see what tomorrow brings.

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Tonight we met a couple who have just received the diagnosis, Parkinson’s.  It was their first time at the Parkinson’s Disease Support Group.  I will speak only in general terms since I did not ask for permission to discuss their situation here.  As I listened to what they have been going through in incorporating the diagnosis into their lives, I couldn’t help but remember twenty-two years ago, when Mary Ann and I were in our early to mid-forties and the diagnosis came.

The couple tonight had been spending much time and energy trying to look forward, trying to determine what to do to prepare for what is to come.  There is so much information available now. I don’t know what the status of the Internet was twenty-two years ago, but, since we didn’t have a computer, its status is irrelevant to what we experienced then.

Information was hard to come by.  What was pretty unnerving was that the first Neurologists we saw didn’t seem to have much information either.  It isn’t that the disease had not been identified long before 1987.  The Neurologists we went to at first were not specialists in Parkinson’s.  Their staffs knew only the basics.  Since every presentation of Parkinson’s is different in each person, the basics seemed more harmful than helpful since they didn’t always fit Mary Ann’s experience of the disease.

During those early years, we did make occasional trips to Kansas City from Oklahoma City either to attend a Parkinson’s Symposium, or visit the Kansas University Medical Center’s Parkinson’s Clinic.  There we discovered a Neurologist and Staff who actually knew about Parkinson’s.  What was so frustrating to us as we went to the Neurologists in OKC was the discovery that we had come to know  more about Parkinson’s than the Neurologists and their staffs there.

Even at that, the knowledge of Parkinson’s in 1987 pales in comparison to what is known about it now, especially the non-motor symptoms.  I have talked about this before in other posts on this blog.  The question that has come to mind tonight is, what would we have done differently, how would our experience these twenty-two years have been different had we known then what we know now?

We talked tonight about the challenges that lie ahead for this couple.  They have worked very hard at anticipating and preparing.  They have searched the Internet and found lots of information, information that was not available when Mary Ann was diagnosed.  They have one of the best Neurologist’s around, one who specializes in Parkinson’s Disease.  Their situation is much more challenging than ours since both of them are dealing with physical problems.  The current Caregiver (now diagnosed with Parkinson’s) is likely to be needing care as time goes by. The one who has been receiving care is likely to need to become not only more independent but able to help the current Caregiver.

With the diagnosis only months old, it is hard for them to imagine how they will deal with what is to come.  When Mary Ann was diagnosed, we had no idea what we were getting into.  We did not have but a tiny fraction of the information these folks have.  The question wandering around in my head is what would we have done differently had we known what they already know, had we known what we now know.

The answer that first pops into my mind is, nothing, we would have done nothing differently had we known then what we know now.  Even with all the knowledge we have gathered over twenty-two years of listening and reading and learning, we still don’t know what lies ahead!

As we have lived out each day for all these years, we have used common sense based on the information available.  We found our way to a good doctor.  We paid attention and tuned in to the treatments and medications and reasons for them.  We went to the symposia and continued to read and learn.  When we moved we got a home that was fairly handicapped friendly and then increased that accessibility as soon as we could afford to do so.  At each step along the way, we made choices that accepted the most likely progression of the disease, choices that seemed to make sense.

We could not and cannot know what lies ahead.  We can simply create an environment friendly to our situation and trust that we will make good decisions as the days and weeks unfold.  We can only do what we have the knowledge and resources necessary to do them.  That is more than enough to do.  Yes, it means thinking about financial issues so that things are in place to the degree possible.  It means developing contingency plans within reason.  We cannot cover every potentiality.  We simply can’t.  We have had to accept that.  No one can know what lies ahead, nor is it possible to have every base covered.

The good news is that by acting responsibly, doing the best we can with the information and resources available to us as each day goes by, we have the best chance of dealing with whatever contingency may come.  There are no guarantees in life.  I am hardly the first one to come to that conclusion.  It is a truism.  By giving up the illusion that we can anticipate and prepare for every problem the diagnosis will produce in the future, we are free to live the day we are in with some peace and enough energy to deal with whatever that day brings.

The couple tonight had come to that conclusion after working very hard at assessing what the future will bring and preparing for it now. They will clearly make the best of a very difficult situation.

What lies ahead?  We have some clues, but only clues.  We won’t know what actually lies ahead until it happens.  Doing the best today with what we know, dealing responsibly now with what is actually happening, doing what we can today to position ourselves for what seems likely to come is not only a productive way to live, but it gives us the best chance of being able to deal with whatever it is that does lie ahead.

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I have come to think that for all of us, but especially those with chronic, degenerative, life-threatening diseases, very many of our choices, big ones and little ones, can be framed as choices either to live or just fill time until we die.

At the Parkinson’s Support Group meeting while back, there were a number of people present who have had Deep Brain Stimulation surgery (see the June 4th post on this blog for a description of the procedure) to lessen the symptoms of their Parkinson’s.  When I thought about it after the meeting I concluded that those who chose the surgery were choosing life.  They were choosing not to simply bide their time as the disease progressed.  While people don’t die of Parkinson’s, the Disease often in some way plays a significant part in their death.

Of course not every decision we make is on the scale of whether or not to have DBS surgery.  With that said, I have begun to think that we can ask of very many of the decisions we make, are we choosing life, or simply filling time until we die.

I have been wondering lately if in our care giving and receiving mode, we are settling into a routine that is more about waiting and filling empty spaces of time than it is about living meaningfully. Every time we set foot out of the house to eat or shop or go to a public place, a meeting, worship service, to see our kids, to go for a ride, it is a major hassle.  We are always at risk for Mary Ann having some sort of problem that is much more difficult to handle away than at home.

When we eat out, it is often pretty hard to get food from the plate to its intended destination without some of the food taking a side trip to shirt or lap or chair or floor.  Just the logistics of getting to the table to eat in the first place is not always very easy.  When we attended that Parkinson’s meeting, there was unexpected intestinal activity that was pretty tough to deal with in a very inaccessible bathroom while a couple of folks we had enlisted to watch the door waited for what must have seemed like an eternity. Heading out for a drive of any distance can present the same sorts of problems.

It is so much easier to stay home and expand little tasks to fill more time than needed, to expand their importance and create the illusion that they are more satisfying and meaningful than they really are.

It is surprising how hard it can be when making a choice to determine which option is choosing life and which is just filling time.  For Mary Ann, watching television fills a void created by losing the ability to do most of the things she used to do for pleasure. However, watching television is also a very addictive life waster — something just to make the time go by more quickly.

There are times when watching a television program or DVD can be informative, mentally stimulating, very entertaining, refreshing and renewing.  There are also times when the television brings nothing to us, but rather consumes our lives, providing no real nourishment, just empty calories.

After procrastinating for a number of days, when finally we actually did do some flower planting outside, it seemed to be time we were living, not just waiting.  When we push ourselves to commit to something, a trip out, a visit, attending an activity, it is often life-affirming.  The temptation is to find some reason just to stay home, to do something familiar, something that in no way stretches us and stimulates us to live life to the fullest.

It is not as simple as concluding that staying busy is the way to fill our lives with meaning.  Busyness can be as life draining as watching reruns just to make the time go by.  For me, sitting alone, listening to a CD of an interesting piece of music, thinking and processing things mentally, calming my spirit, I find to be life-affirming.  Sitting on the deck, watching clouds and listening to birds is meaningful and productive time.  Quietly reading something that is engaging and mentally stimulating or spiritually nourishing is life-affirming for me.

Choosing to spend time with others is choosing life.  After a few days of talking about doing so, last week we called a couple of friends who, gratefully, were able and willing to say yes to a spontaneous invitation to go for a drive in the country.  The day was beautiful, the scenery was stunning.  We stopped at our favorite potter’s studio.  We stopped for ice cream in a picturesque small town in the area.  We tasted wine at a winery outlet, very tasty wine. (I know, ice cream and wine??)

Mary Ann chose to attend a salad luncheon with friends at church last Wednesday. While it was not expected of her, she insisted that we bring a salad – another foray into the kitchen.  Friends invited us to come down the block one evening for cookies and conversation.  The time together was not only entertaining but nourishing to some meaningful relationships.

It is very tempting to avoid the hassles and just stay home.  What was the catch phrase in those old Nike commercials: Just do it!  We have committed to a ten hour trip to Northern Illinois for a family celebration at the end of July.  From there we bring our oldest Granddaughter with us to Kentucky to spend time with our Daughter and her family.  We just received another wonderful thank you gift from the congregation I served. We provided a free place for the new Pastor to stay for a few months, waiting for his family to be able to move here.  The gift is a trip to our very favorite Bed and Breakfast in Arkansas — another long trip, but exceptionally life-affirming.

Choosing life is not always done in huge life-changing deciaions. Choosing life is often done one tiny decision at a time.  The cumulative effect of those little decisions determines whether we are living or just waiting until life is over.

Whether the choice is to undergo major surgery to provide hope of an improved quality of life, or to get out of the house and head down the block for cookies and conversation with friends, the choice is ours to make.  Either we choose life or just wait until it is over.

When given a choice, my hope is to have the courage to choose the option that is life-affirming rather than life-wasting, and, as the Serenity Prayer says, to have the wisdom to know the difference.

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How would you like to have a nickel-sized hole drilled in your skull and a wire threaded through your brain from the top of your head to the bottom of your brain, right at the brain stem?  That is where your brain meets your spinal cord.  How would you like to have that procedure done while you are awake?  And then how about having a second surgery just like it five weeks later?

Tonight at our Parkinson’s Disease Support Group meeting, there were a number of people present who have done just that.  They have had the Deep Brain Stimulation Surgery to help control the symptoms of their Parkinson’s Disease.  Their willingness to seek out such a surgery should give us a clue as to just how hard it is to live with Parkinson’s Disease.  The surgery does not cure the disease, it just sets the clock back a while so that the person living with Parkinson’s returns to a quality of life they had before the medications side effects began to outweigh its benefits.  Ideally they gain four to six hours of fairly normal mobility.

A technical description of the surgery can be found on the Kansas University Medical Center’s web site:  “To treat Parkinson’s disease, DBS [Deep Brain Stimulation] delivers controlled electrical stimulation, most commonly through bilaterally implanted electrodes, to targeted cells in the subthalamic nucleus (STN) or internal globus pallidus.”

Tonight Dr. Jules Nazzaro, the Neurosurgeon who does the surgeries talked with the group in detail about how he does the surgery.  He then spent a great deal of time answering questions.  There were some in the group who were considering the surgery, one very anxious to have it done as soon as possible.  One of those present who had the surgery a year ago, when asked how it went, got up and walked around the room.  There was no obvious evidence that he had Parkinson’s.  Before the surgery he fell about a dozen times a day, had a hand tremor, was taking well over twenty pills a day to help give him some mobility.  He is now taking only four pills a day and will soon reduce that to two.  After a time those pills create at least as many symptoms as they control.  Reducing medication is one of the most thrilling of the results of DBS.

There is a rigorous evaluation about three days in length to determine if a patient with Parkinson’s is likely to benefit from the surgery.  First of all, the person needs to have what is called idiopathic Parkinson’s rather than some form of Parkinsonism.  Parkinsonism is some other pathology that produces Parkison’s-like symptoms.  Because of the time spent working in the brain itself, those for whom the disease has progressed to the point that there are memory problems are vulnerable to those problems worsening. There are a variety of criteria for qualifying for the surgery.

Dr. Nazzaro is part of a team including Neurologist, Rajesh Pahwa, who happens to be Mary Ann’s Neurologist.  Dr. Pahwa is the one who determines whether or not a person is a good candidate for the surgery.  He prescribes and manages the complex regimen of medications that control Parkinson’s.  Dr. Pahwa is a master at finding just the right formula of pills to match each Parkinson’s paticnt’s unique needs.  When the medication options have finally been exhausted, but the patient is still healthy enough to go through it, Dr. Pahwa finally recommends considering the surgery.

It was a number of years ago that he suggested the surgery for Mary Ann.  She was just not interested.  At that time, I had mixed feelings about it.  I wanted her to have it, but I was not willing to try to influence her decision.  For one thing, selfishly, I didn’t want to have any responsibility for the decision if something went wrong.  As is obvious, there are risks to the surgery.  A second consideration is the importance of the attitude of the patient undergoing the surgery.  The patient her/himself has to make the decision and be committed to the recovery.

Actually, the two surgeries putting the lead deep into the brain are two of four surgeries.  There are two additional outpatient surgeries to thread a wire from each of the two leads under the skin into the chest area and insert the two generators.  The generators are turned on and off by a magnet.  The generators stimulate  specific areas of cells, actually to reduce their activity.  The missing dopamine that causes the Parkinson’s is what usually controls those areas.  One of those areas produces tremors if not properly controlled and the other produces immobility if not properly controlled. At least that is my understanding after attending so many Parkinson’s Symposia.

As an aside, Michael J. Fox has had what is called a Pallidotomy.  In that surgery a permanent lesion is made on the Globus Pallidus to reduce its activity and help control the movement difficulties that come with Parkinson’s.  One advantage of the DBS surgery is that it can be reversed.  There is no permanent damage to the brain should some more effective treatment come along (or a cure!).  If I understand correctly, controlling the two areas has a better track record for reducing symptoms and the need for medication.

At this point in the progression of the disease, along with the other major health problems that have joined the assault on Mary Ann’s body, she is no longer a good candidate for the DBS.

The surgery is recommended now earlier rather than later in the disease process.  It is a quality of life issue.  I have often heard people say that they finally had their back surgery or knee or hip replacement surgery when the pain was worse than their apprehensions about the surgery. The same is so for DBS surgery.  When finally the symptoms of the Parkinson’s itself and the side effects of the medication are  frustrating enough, the DBS surgery offers hope for a better quality of life.  There are not guarantees that come with the surgery, but the track record is very good.

University of Kansas Medical Center did the first DBS surgery, and Drs. Pahwa and Nazzaro are among the very best in the nation.  For those who are suffering the effects of Parkinson’s Disease, if the time is right, DBS surgery offers hope.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

Would you believe, he told us at our Parkinson’s Support Group meeting to take our daily antioxidants and low dose aspirin.  He is Mark L. Weiss, Ph.D. whose life is centered on doing research on the potential of what is called Wharton’s Jelly.  Wharton’s Jelly is found in umbilical cords, a non-controversial source of stem cells.  Let me add immediately that Dr. Mark pointed out that he is not a medical doctor but a Ph.D. Any choices we make concerning medicine, even over the counter medicines should be checked out with our medical doctor.  He did say that it seemed pretty safe to suggest doing what every doctor and most everyone else also suggests, that we take antioxidants and low dose aspirin.

His encouragement to do so comes with the answer to the question, why?  Parkinson’s disease is caused by the death of the neuron cells in the brain that produce dopamine.  What kills those cells is an oxidant as in “anti”oxidant.  What first popped into my mind when I heard that was, broccoli wins again.  Eat those antioxidants.

The process that sends those killer oxidants on the attack is inflammation. Oddly, one of the hints that inflammation can play into the process that produces Parkinson’s Disease came after the flu epidemic of 1918.  There was an increase in Parkinson’s Disease after that epidemic.  Non-steroidal anti-inflammatories such as aspirin reduce inflammation. That is why the Cardiologists suggest taking them — to reduce the inflammation in the heart.

What was exciting about Dr. Mark’s presentation at the Parkinson’s Support Group meeting tonight was that certain umbilical cord cells (UCMS) found in Wharton’s Jelly can produce a form of stem cells having properties that hinder inflammation, interfering in the cycle that produces the death of the Neurons that supply the brain with dopamine.  In addition, there is a bonus that results in the rescue of the neurons that are dying.  If that is not enough, there is evidence that those particular stem cells can be transplanted without triggering rejection.

Please understand that what I have just written is what was heard by a retired pastor who has no formal medical training other than making thousands of hospital calls, listening to multiple doctors who deal with Mary Ann’s many medical problems, and going to many a Parkinson’s Symposium.  I could easily have completely misunderstood.  I will email my blog address to him and invite Dr. Weiss to comment and correct, although I am sure he has much better things to do.  All who read this post need to understand it is just my take on what I heard.

What I left wtih tonight was not so much an expectation that there will be anything that comes of this research that will change Mary Ann’s situation.  It was more an excitement that there are possibilities for slowing down the progression of the disease in those diagnosed with Parkinson’s.  Even hope that may not change our situation is hope.

Tonight I gained a level of understanding of this disease that I have never experienced before.  I credit the knowledge and communication skills of Dr. Mark.  I can’t speak for the rest of the group, but judging from the questions, it appeared that most of us gathered in that room now understand the disease process of Parkinson’s as well as some Neurologists.

Gathering with a room full of people who understand what it is like to live with Parkinson’s Disease is comforting.  We talk the same language.  We can talk about things that would either bore others or cause them to feel uncomfortable.  For some reason I feel empowered just by knowing more about the disease process.  It demystifies it.  Knowledge is power.  That Dr. Mark and others in the research community know as much as they do, increases the likelihood that a number of approaches to treating Parkinson’s will emerge in the years to come.

Tonight’s Speaker: Mark L Weiss, Ph.D. Professor of Neuroscience at Kansas State University; Associate Director of the Terry C. Johnson Center for Basic Cancer Research; Founder of the Midwest Institute for Stem Cell Biology; Anatomy and Physiology, College of Veterinary Medicine.

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.

Who can we talk with about our predicament, who isn’t tired of hearing it or just doesn’t have any frame of reference to really understand what we are going through?  It is terribly easy to become isolated.  Since conversation isn’t an easy thing to accomplish when words for one are difficult to find, let alone get out where they can be heard, a longing to talk and listen and be understood. 

Last Thursday evening Mary Ann and I attended a monthly Parkinson’s Support group meeting in our area.  The group varies in size, but lately I would guess there have been thirty-five to forty-five of us in attendance. 

I remember the first support group we attended just a few years into Mary Ann’s diagnosis.  It was in another city — a large group with Parkinsonians at all levels of symptoms.  I can remember seeing one man in particular who was so dyskinetic that it was all he could do just to stay on the chair, arms and legs flying everywhere.  I suspected it would be so.  After that visit to a support group, it has been all but impossible to get Mary Ann to another one anywhere.  It just seemed scary to see the possibilities for her future right there before her eyes.  It was a denial shattering experience. 

Now that I am retired, we have started attending a local Support Group.  Mary Ann is now far enough along in the progression of the disease that there are few, if any, more debilitated than she is present at any given meeting.  Last Thursday was one of the times we separate into two groups, Caregivers and Carereceivers.  Those who attend the support group seem to especially appreciate the evenings we divide into the two groups. 

There is an agreement we make when we head into our respective rooms.  What happens in Vegas, stays in Vegas.   We are free to talk openly about our respective struggles without concern that what we say will be shared with anyone outside those gathered there.  That means, I will not share what was said, at least in specific terms, only in general terms. 

Both Mary Ann and I especially appreciated our respective group conversations last Thursday.   In the Caregiver group, we share our unique circumstances and our central problem.  We understand each other.  We help each other by sharing how we have dealt with challenges that are just coming over the horizon for others.  We pool our knowledge and each leaves with a new piece of information, a new possibility for dealing with whatever we are going through at the moment.  If nothing else, we have had a chance to vent for a moment with people who actually do understand what we are going through. 

It takes courage to break out of our isolation and open ourselves to people, most of whom we barely know.  When I was working full time, my circumstances allowed me to talk freeling with caring people with whom I worked.   When I retired, that outlet ceased.  That support group ended.  I realize now even better just how important it is to take seriously the need to connect regularly with people who are traveling the same landscape, who can support us in very concrete ways with information and insight. 

The Leader who facilitates our group on the evenings we divide into the two groups is the Caregiver Program Specialist for this Area’s Agency on Aging.  The website for our Area Agency is www.jhawkaaa.org. I suspect that in most other areas there are such programs available.  We discovered that help is available for some of the equipment that is needed to help with the mobility and safety of our Loved Ones. We discovered that there are programs that provide respite care so that Caregivers can have a break from hours to days, including overnight.  There is even some funding that allows that care to be given at little or no cost to folks who need the help, with no income guidelines restricting its use.  While there may or may not be funds in your area, it is important to look for support options.  We cannot do this for long by ourselves.  For our sake and the sake of our Loved One, seek support options. 

In our case, the combination of family, Volunteers, paid workers from private agencies, and County or Regional programs for the Aging combine to help us find a balance that raises our quality of life.  For those who have earned income and must use paid help to keep working, there is a tax credit available for dependent care. 

One piece in the support puzzle for me is an online group for the spouses of those who have Lewy Body Dementia.  Since Mary Ann has now been diagnosed with Parkinson’s Disease Dementia, the group has been a meaningful addition to my world of Caregiving.  That group is available at any time day or night.  They are as close as the keyboard on the computer.   Members of that group share completely openly, confident that others understand.  Someone in that group has been, is now, or will be experiencing their plight.  Members can cry on each other’s shoulder or laugh at the silliness we sometimes encounter.  Whatever the chronic disease that lives at your place, there is likely to be an online group to be found by searching for the name of the disease adding words like support or support groups.  I found this group through the Lewy Body Dementia Association site,  www.lbda.org.

Caregivers do not only give the hands-on care, we are charged with the task of seeking out and managing options for support that keep us and our Loved Ones safe and healthy.  When someone asks what he/she can do to help, suggest conducting a search of resources.  As Caregivers we are often overwhelmed with the steady stream of needs.  It is important for each of us to move out of our isolation and through our reticence to reach out to others for support. 

If you want to write a comment about this or any of the posts on this blog, look to the column on the right side of this page, titled “Recent Posts,”  click on the name of a post and you will find a box at the end of that article in which you can write a comment.  Clicking on the title of the post you are reading will accomplish the same thing.  Comments are appreciated.