The concept and use of Social Media is clearly one of the major characteristics of the early part of the 21st Century. People and ideas are connecting faster than ever. Both factual information and rumors now spread at record speed. There are fewer secrets now.

There is so much information out there, that even if someone were to focus on one subject, it would be impossible to learn everything there is to know, and the amount of information grows exponentially.

In on-line PKD support groups, people with PKD seek to connect, share, learn, and, often commiserate with their fellow patients. This is great. All too often, people with Polycystic Kidney Disease feel isolated, and sense that “nobody understands what I’m going through.”

The members of the support groups let each other know in no uncertain terms that they are not alone.

And yet…I have felt that something is missing in the level of connection on these forums. Sharing factual information and personal experience is one thing. And on-line support groups do this well.

But unless one is a great writer, the communication of feelings, emotions, and mindsets are, at least for me, very difficult to share.

When a patient is feeling “down” when he/she has learned some “bad” news,” sharing it on-line may offer some cathartic release, and there are heartfelt sympathetic responses, the patient still feels “down.”

This of course happens in person too. How many times when one has hospital visitors they tell the patient, “Well, hang in there, everything will be all right.”  I can tell you personally, that if I weren’t feeling rotten, I’d get up and punch that visitor right in the face!

Unfortunately, not enough people have the skill to be a good “visitor,” either on-line or off-line. It is a skill. It is learnable. For people who are ill and there friends and family, it is a skill worth developing.

The skills of being a friend/supporter of an ill person only partly translates well to on-line support groups. The main reason is obvious: Posts are not in real-time. If the group’s website has a chat facility, that’s a lot better.

I don’t know what each individual is seeking or exoecting from participating in an on-line support group.

Me? I usually respond to other’s (sometimes unwritten) cry for “emotional” support. I assist people in placing their “challenges” in a perspective that’s not as threatening as first appears to them. I don’t always know if I’m successful, but sometimes I get very thoughtful responses which makes me feel that I’ve made a real contribution to someone’s life, and it’s a great feeling!

In my next post, I will discuss the Neuro-Linguistic Programming concept of  “Pacing” and “Leading.”

Until then, I would like invite you to offer your thoughts and opinions on the “pluses” and “minuses” of on-line support groups.

I welcome your comments!

Peace and Blessings!

Coach Richie Perl

Support.

Think of a physical structure. A bridge. The steel columns and beams that hold up the roadway and anchor the bridge into the ground.

Think of the weight of the vehicles on the bridge. Think of the weight of the beams and columns themselves. We often forget that the support structures indeed have to support themselves!

We are all dependent on support. There may be individuals who are completely self-sufficient, but I don’t know of any.

Polycystic Kidney Disease patients, (as well as people with other diseases) have need for additional support.

The medical team, obviously, is the major source of support. And, based on comments made by PKD patients, such support, in conjunction with the insurance industry, is often not as supportive as it could be.

There is a need for social support. A PKD patient may need a friend to run an errand for him/her, (like picking up meds!).

Sometimes, a patient needs someone to cry to. There are days when the burden gets too much to bear. Lucky is the patient who has such a person in his/her life.

Lucky also is the patient who has people in his/her life who aren’t frustrated with the obstacles that he/she faces and do put up with the “stuff.”

Consider the PKD who has children. Who supports whom? PKD affects the patient and the family in many ways. Think of the guilt and anger that is felt in “passing the disease” to one’s children. Think of the anger the child feels when find out the parent “gave” him/her the disease.

What kind of support does the PKD patient require to keep him/her from falling into the depths of despair and victimhood…when even his/her own body can’t support life without assistance?

It takes the support of people who know the Odyssey. People who have the understanding of what it’s like to get around in life feeling sick, or being unable to eat and drink what everybody else is eating and drinking. People who have the patience to deal with the physical, mental, emotional ,and spiritual fatigue that PKD patients often live with.

If you, the PKD patient, feel you’re not getting the emotional support that you seem to need, wjy not drop me a line at:

info@innergameofpkd.com .

As you can tell, I like to write.

I WILL respond! And who knows, you may actually get some real support!

Peace and Blessings!

Coach Richie Perl

In my last post, I wrote that continuing to work while being symptomatic and while on hemodialysis provided structure, which was a major component of support for me.

Having a schedule which include taking meds, and where applicable going on dialysis, the time to eat, the time to drink,the time to  inject epo, and similar “rituals” make up the fabric of a PKD patient’s life. These become so habitual that they aren’t even considered as something out of the ordinary. It’s just the way one lives.

This is “good” in the context of a PKD patient’s life. The more habitual the behavior, the less it needs to be thought about.

Yet, there is an “inner structure” of perception that we all have. PKD patients perform the listed behavior. But it makes a big difference in a patient’s well-being of how he/she perceives that behavior.

At the risk of perpetuating stereotypes, you can imagine that a young man of about 17, 18, or 19 might not be thrilled being dependent on medications, much less dialysis. Dependency doesn’t help his macho self-image. (Ask me how I know!)

Older people may have modified the need of appearing so invulnerable, as the “Odyssey” tends to humble those traveling on it.

So, what kind of “inner support structure” can one build to create some inner stability?

One is: attitude. Most of us, having asked the famous “Why me?” question have come to learn about the “Why not me?” question. There are many people with problems, physical, emotional, family, professional, financial, etc, etc. Who are you NOT to have some problems?

Without getting too religious, we all have our “crosses to bear.” At some point, we must come to accept our situation. When this comes, we stop looking outside ourselves for “pity,” and looking inside ourselves for self-pity.

This is a big step. When we accept ( and not be  “resigned”) who we are and what we are all about, especially in relation to out disease, we can now move forward to “constructively engineer” our lives within the constraints of our disease and the “habitual behaviors” mentioned above.

In effect, you largely become your own source of support!

And as we travel along our Odyssey, and deal with the the bad (and the good), we move ahead as confidently as we can, doing what we need to do to construct the best quality of life as we can, to best of each our abilities, within our limitations and constraints!

I’ll see you down the Road!

Peace and Blessings!

Coach Richie Perl

From initial diagnosis until the end of life, the Polycystic Kidney Disease is on an Odyssey. An endless journey that leads one through a whole range of physical and emotional highs and lows. Anyone on this Odyssey will rarely, if ever, be bored.

The shock of initial diagnosis, the ordeal of telling the people close to you, the fear of a limited life, the onset and worsening of physical symptoms, the day of being told that dialysis is necessary, the fear and newness of dialysis, the restrictions that dialysis imposes, the hope for a transplant, the wait, the hopefulness when an organ becomes available, and hopefully, the joy of a uccessful transplant, the fear of rejection, the balancing of meds and their side effects…that’s the overview of the Odyssey.

But describing it in words is nothing like “the real thing,” the actual living experience of  these stages. As we know, ther are days…and there are days.

PKD patients often seek some sort of support. I have asked people on various forums what they mean by support. Believe or not, I have never received an answer.

For me, support has several components:

First, the understanding of my nephrologist. This, surprisingly, is not always a given. It takes some skill to have your neph treat you as a person over and above a set of numbers. I helped this happen by relating my symptoms in the contect of my real life. Example: my bones were very weak and I often had bones bruises in my feet. I would tell my neph how painful it was to stand on the subway. This was something to which he could relate. It made me more “human” to him. I have a great relationship with him that has gone on for 14 years.

Second, understanding from my family and friends. In the mid 90′s, the Internet wasn’t like it is today. In order to explain the disease to those “who needed to know,” I had a brochure describing the disease from one of the pharmaceutical companies. I showed people the brochure. Since they were readin gabout the disease from a “neutral” source, it wasn’t like I was “whining” about how bad the disease is. The reaction of those reading the brochure indicated to me who would helpful, and who wouldn’t be.

Third, structure. I was fortunate that I was able to work through the symptomatic stage and through the hemodialysis stage. Although I was often fatigued, the work kept my mind somewhat off myself.

I’ll continue this on my next post.

In the meantime, I’d love to hear what your definition of support is.

Please enter your comments below.

Thanks!

Peace and Blessings!

Coach Richie Perl

For most of us, our introduction to the “real” world takes place in the playground.

The playground. The preliminary version of the “jungle” that the world is often portrayed as. The playground. Where we learn that not everybody has our best interests at heart as hopefully our parents did at that age.

We learn that other kids are “bigger,” “stronger,” more “aggressive,” etc. As a result, we are introduced to the concept of “comparisons.” We learn that other kids have “more” of what we want: Toys, abilities, (I can ride a two-wheeler. Can you?)

For many of us, there are least several areas where find ourselves on the short end.

Similarly, at school. There are always kids smarter, more attractive, more popular.

Then, there are the entertainment and athletic stars, whose assets often put our own to shame. (Try hitting a curve ball!)

A Polycystic Kidney Disease patients, we are not immune(!?) from making comparisons to those who are healthy. After all, we have been trained to do this, and making comparisons isn’t necessarily a bad thing. (How high in his/her class did your doctor graduate?)

Yet, when our disease limits us in our pursuit of our dreams, comparing our situation with those who are “healthy” (a relative term) we add an additional load to our burden. It’s bad enough to experience the limitations of our lives on their own  terms. It’s not helpful to look at others and make ourselves feel worse by noticing what “they” can do and we can’t.

Each of us are unique individuals. Everybody has a superior and an inferior in every aspect of life. OK. You have a disease. You are not the only one. Most of us have walked through hospital wards. You see what goes on.

Consider this comparison:  Someone may wish that “all” they had was PKD!

I had this personal revelation at my dialysis center when I saw the people with diabetes come in, remove their prosthetic leg, and got ready for dialysis. One woman was blind. Yeah. It shook me up.

I developed gratitude that “all” I had was PKD. Let me accept this burden, and carefully navigate MY “Odyssey,” and not worry about anyone else’s.

You are not alone. This 2009. Current medical practice is quite good (no, not perfect, but better than it was), and research is ongoing, and the future looks good.

Accept your situation, but don’t be resigned to it. Do what you need to do, and keep the dialog going so that there is no sense of isolation.

If I can be of service to you, please let me know by making a comment or contacting me at:

info@innergameofpkd.com .

Peace and Blessings!

Coach Richie Perl

Many people say they like surprises. I am not one of them. I like to know what is happening, or what will be happening, especially to my body.

I’m sure many of you have had the experience of seeing a doctor, and, after the usual cursory exam, promptly tells you, “I’m scheduling you for a _____ test. (It doesn’t matter what it is. The blood pressure goes up regardless!) The doctor often goes on to say, “It’s probably nothing, but I just want to make sure it’s nothing to worry about.”

I’m sure he/she’s not as worried as I am!!!

Hopefully, at this point, you have the presence of mind to ask, “What exactly is this test for, and why do you think I need it?”

Again, hopefully you have enough rapport with your doctor that the answer will satisfy you. You NEED to know!

Now, most patients with Polycystic Kidney Disease have good relationships with their nephrologists. But such relationships ought not be taken for granted. If you don’t feel that warm feeling of confidence that “things” are “under control,” you need to speak up.

You don’t want any surprises!

Nothing should be “assumed!” It may take a play-by-play of what the test or procedure entails to get you to feel as comfortable as possible.

I don’t know about you, but I’m a much more co-operative and compliant patient when I’m educated about an upcoming test or procedure. And, often the procedure produces better results because the stress level is at a minimum.

In a similar vein, (pun intented!) knowledge and anticipation about potential PKD symptoms would be extremely helpful for newly diagnosed patients. I recently described my experience with a painful burst cyst, and I found out that some patients weren’t aware that such a possibility of such a painful event existed.

Well, I’ve got news for you: Neither did I until it happened to me! I would have reacted better if I knew that such a possibility existed.

Polycystic Kidney Disease has several related conditions that you wouldn’t connect to bad kidneys: Brain aneurysms and hernias (of which I’ve had two on the same side!) are potential problems.

Seek out as much information about your disease as is reasonably possible. Use the internet to research the latest developments.  Any questions? Ask your doctor!

Keep surprises down to a minimum.

Here in New York City, there is a clothing store whose tagline is:

“An educated consumer, is our best customer.”

Become an educated patient!

Peace and Blessings!

Coach Richie Perl

One of the amazing capabilities that we human beings have is the ability to create and apply meanings to events. These meanings which we create and apply to events lead to how we react or respond to them.

For example, the recent death of Michael Jackson had no particular meaning or significance to me. I was annoyed by the media coverage. However I can certainly understand and relate to those for whom this event had an extreme significance.

For the record, when the great jazz saxophone player John Coltrane died in 1967, when I was 19, I was deeply affected.

When it comes to your Polycystic Kidney Disease, what meaning do you give to it?

For most of us, upon initiual diagnosis, we apply a very negative meaning to the diagnosis. This, of course, is natural. Our survival instinct is not thrilled with negative medical information!

Before we learn about our disease, our imagination runs wild. We imagine all sorts of terrible suffering. This use of our imagination, if understood, serves a very useful purpose for us: It scares us.

Hopefully, it scares us into finding out as much about our disease as possible. And, today, we almost suffer from too much information.

Too much information? Well, suppose as part of the information about PKD, you know or learn of individuals (family members, for example,) who have or had many negative experiences with disease, including what may be considered a premature death. These stories will impact you in a negative way, and you may apply a discouraging meaning to your “PKD story.”

Of course, you wouldn’t be human if weren’t negatively affected.

But…there a positive stories as well. Stories of people who have done exceedingly well both on dialysis and with a long-lasting transplant.

The suggestion is obvious. Become familiar with positive stories. Allow these stories to make a bigger impact on you than the negative ones. Create and apply meanings that with diligence and compliance, a fulfilling life can be lived.

Change the meaning of PKD from:

“This is a terrible disease, I’m going to be horribly sick and then I’ll die young”

to:

“Well, this is a tough break. But I guess I’m on a new adventure. I’m going to work with the medical team and do what I can to have the best quality of life possible. And, if “things” don’t go the way I would like, at least I’ll have the knowledge that I gave it everything I got. I will also be grateful for all the good things that I can contribute and receive while on my “PKD Odyssey.”

From a fellow “PKD Odyssey” traveler,

Peace and Blessings!

Coach Richie Perl

In the world of “Personal Development,” there is a statement that is practically considered a “Sacred Truth.” The statement is:

“What you focus on, expands.”

I’m sure you know someone who would be categorized as a “complainer.” Maybe this person is very, very close to you(!)

The complainer consistently puts what is “inconvenient” in the forefront of awareness. You know what that does to the “atmosphere.” It isn’t pleasant.

But, let’s be fair. It is easier to complain than to do something about it. We often need to “vent” the pressure which is built up as our frustrations grow when “things” don’t go our way.

Yet, doing this habitually may lead us to be blind to the “good things” of life and turn us into “crabby” people.

Having Polycystic Kidney Disease is, in my opinon, truly “not fair.” We did nothing to deserve the life limitations that this disease imposes on us.

OK. It’s not fair. So what? Whether it’s “fair” or not, we still have to deal with it.

So, what would be helpful to focus on?

Well, when I was being treated in the dialysis center, I would see patients with diabetes come in, remove their leg prostheses, and get ready for dialysis. There was one woman who was also blind. Wow!

As tired as I was being dialyzed from 8:30 PM to midnight and having to go to work the next day, I was thankful that I wasn’t one of those people.

I focused on that the fact that I was indeed still working. That I lived in a time that dialysis existed. That I lived in a time where medical technology was so much better than when my father was diagnosed with PKD and died shortly after.

I focused on what I still could do and not what I could no longer do. I could still work, read, write, enjoy music, TV, movies, etc. I could write, think, discuss things.

In fact, as I processed all of this, I realized that I could have had it a lot worse.

Now, don’t get me wrong. I wasn’t happy that I had PKD. But I trained myself to focus on what I still could do.

The “stuff” I had to do to keep myself as healthy as I could I labeled as “inconveniences.” Like injecting myself with “epo.” And taking my own “numbers.” It wasn’t that nig a price to pay to keep functioning in the world.

Keep focusing on what is good in your life. You will keep the “channels” open for further good.

Peace and Blessings!

Coach Richie Perl

Having had all the usual childhood diseases (measles, mumps, chicken pox, etc.), plus weekly allergy shots,plus several trips to the emergency rooms for “injuries,” I was not unfamiliar with the doctor’s office when I was diagnosed with acute pyelonephritis when I was 16.

So, when I was diagnosed with Polycystic Kidney Disease at age 22, two years after my father died of it, I somehow felt the fulfillment of an inevitability.  Sort of like carrying on the family tradition.

When symptoms started showing up in my mid 30′s, I started to feel, as many PKD patients do, “defective.”

Now, externally, my life was pretty “normal(!?).”  Job. Marriage. Divorce. Girlfriends.

But when I experienced a burst cyst, and exhibited hematuria (blood in the urine), I began to really feel differently about myself. I felt like a sword was hanging over me. (In a very real sense, there was one. Technically speaking, there still is.) I still was working, but my perception of  “future” was rapidly changing.

I was so fortunate that the woman I was dating was willing to travel the “PKD Odyssey” with me and married me. Yet, even so, as the years went by, and my “numbers” deteriorated, I found that I had no perception of “future” at all!

When I thought of the “future.” I perceived a country road on a very foggy morning where you can’t see more than a few feet ahead. And as I took a step, the fog just moved with me, so that I really couldn’t see ahead.

Well, walking around with no sense of future isn’t helpful when you’re in conversations centering around the subject of  “future plans.” When friends were express their “dreams,” I felt out of place, and consequently began to be depressed.

It was only when I was studying Neuro-Linguistic Programming, and we were studying the concept of  “Time-lines,” did I learn, with the help of my classmates, how to develop the concept of “future.”

It is difficult to describe the therapeutic effect that had on me. The sense of not having “plans” went away. I started at least contemplating plans. I felt that the perception of my disease still included life in the “future.”

Now, granted, I wasn’t jumping for joy that I had PKD, but my perception was not a defeatist one. Without a doubt, the new positive attitude helped me see the various “negative” developments as “temporary.”

And, as it happened, they were. I now have the same attitude about everything: It’s temporary.

After all, from the higher elevation, isn’t everything…temporary?

Peace and Blessings!

Coach Richie Perl