If you had the chance to express your feelings about having Polycystic Kidney Disease, what would you say, and to whom would you say it?

Would you scream at your parent for “giving” you the disease (if you inherited it?)

Would you plead to your friends to understand that sometimes you’re too tired to do what they want to do, but you don’t want to lose their friendship?

Would you yell at your doctor who seems so distant and doesn’t acknowledge the inner (and outer) pain you’re experiencing?

Do you want to cry because your spouse loses patience with you because you’re unable to do the household tasks (or hold a job) because you’re too sick?

Do you sometimes feel that you want to hit somebody out of pure frustration???

For me, the answer is yes to all of the above!

Now, suppose you actually did all these things, and gave all those people ” a piece of your mind!”

I’m sure you can imagine the various responses and their consequences!

Probably not positive ones!

Because communication needs two parties: The sender and the receiver.

Even if you send your emotion-filled message, it only registers if the other party “receives” that message. And acknowledges to you that the message was received AND understood!

Suppose you were able to “deliver” your message of frustration in a form that is more “digestible” to your “receiver,” such that the message is more likely ro be received, acknowledged, understood, AND acted upon!

That’s what you want, isn’t it? You want something to change for the better!

What if you rehearsed want you want to say in the way that would be most likely to be listened to?

“Role-playing” is a great way of practicing what you want to say to a real person who acts like the person you want to talk to.

The feedback you receive from the person acting in the role of your desired listener will help you develop the words and tone of your message so that it will be as effective as possible.

So, write out your message, even if at first it might be, “You stupid jerk! Can’t you see I’m sick!”

Eventually, you will modify it to< “If you have a moment there’s something I’d like to speak with you about.”

I know. The first one sure feels better!

But it probably won’t get you what you want!

“Role-playing” is one of the many tools of Life Coaching.

Consider using it to help you with expressing yourself.

Keep the Conversation Going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As has been well-documented, we are more interested in what people do than in who they are.

It is much easier to explain what we do than who we are. It takes quite some time for another person to know who each of us is.

On the other hand, it seems to be quite easy for us to pin labels on others.

He’s the “funny” one. She’s the “kind lady.” He’s the “jock.” And, lately, she’s the “dumb blonde(!)” (I’ve been labeled the “smart” one!)

As we get to be known by these labels, the impression is created that “all” we are is what our labels say we are.

Of course, this impression is false, and the consequences of relating to people based on their labels can be quite hurtful.

Yet, all too often, we have a hand in creating our own labels.

PKD patients are vulnerable to the tactic of labeling themselves “diseased.”

This isn’t always done consciously.

When I first was diagnosed with kidney disease at age 16, I didn’t deny it consciously, but walking around as a college freshman  taking diuretics, and hoping I could get through a class without the “urge,” and being vigilant for where the Men’s rooms were, well, it started to wear down some of my youthful “machismo.”

I had to face the fact: I had a disease, and I wasn’t quite like everyone else.

So, I labeled myself, “diseased.”

I took quite a while and inner struggle to accept who I was and to force myself to tap into the other aspects of my life that were quite normal!

I had to learn that I was not the only one that had an “inconvenient” aspect of life.

Some had academic difficulties. Some had difficult home situations. Some had financial problems. and on and on.

I learned to put my disease in a less prominent place in my self-evaluation. Over time, the label “diseased” just faded.

So, how do you “label” yourself? Does your “label” sell yourself short?

You are so much more than your “label!”

You may not be aware how your label might be limiting the way you experiencing your life!

Action step: Write out a self-description. Read it to someone you know and trust. Ask for feedback if what you wrote is how the other person experiences you.

A learning exercise if I do say so myself!

I wonder if you will really do this!

Who do I say I am?

A Child of God is very fortunate to have my faculties, and a kidney donated by my wife!

And, oh yeah — a Life Coach exploring the Inner Game of PKD!

Who do you say you are?

info@innergameofpkd.com .

Let’s communicate!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The concept of “venting” is so ingrained in our society today, that it is almost discounted for what it really is:

A chance to verbalize feelings, that aren’t easily communicated to others and even to ourselves, such that we can begin to conceptualize them in (our case) English.

This is no small accomplishment. Think of babies who haven’t learned how to talk yet. It’s kind of tough to know what’s wrong when they are clearly not feeling well.

The frustration that we experience when either we have difficulty “putting into words” what we feel, or if we can express our feelings, when the expression is not “believed,” or negated, (“There’s no reason for you to feel upset!”) is often very detrimental to our individual self-esteems.

There many experiences that are very difficult to “put into words.”

Remember your first crush? You may have asked a parent, “How do you know when you’re in love?”

The answer for most of us was, “You’ll know!”

Gee. That was helpful!

But in fact, it was! I’m not sure I would like living in a world where every emotion can be reduced to “merely” brain cells firing in a particular part of the brain! (Which, by the way, we are heading towards!)

It seems to me that most people, which of course includes PKD patients would benefit from an environment where feelings, (especially and obviously negative ones) can be expressed safely, with the assurance that the expression will be accepted, never dismissed, and listened to.

Yes. A psychotherapist”s office is the ideal place for this to occur. I experienced this myself. It helped greatly. Unbeknownst to me, my therapist happened to work with dialysis patients along his career path. I basically lucked out.

Not every PKD patient has that good fortune. Too many times, even doctors will “dismiss” patients’ “human” concerns about their lifestyles. While somewhat understandable from the doctor’s viewpoint, it’s not helpful for the patient, as that sense of frustration just increases.

I’m not telling you anything that you don’t know. We NEED to be listened to. By someone who gets “where you’re coming from.”

Let’s consider a way of establishing a method where PKD patients can express real concerns to people who can listen and who know how to respond in such a way as to make the patient feel that the “internal pressure”  has been released.

Any ideas?   info@innergameofpkd.com is my e-mail.

The world can be a frustrating place when you’re on the PKD Odyssey.

Perhaps you may even want to talk to me!

Peace and Blessings!

Coach Richie

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

There was a time when I anticipated the “freedom” I would experience when the “Christmas Vacation” from school would come. I looked forward to going ice skating with my friends, and just having more time to spend doing enjoyable things without the responsibility of school work.

Then there is the feeling of “dread.”

Studying for the “dreaded” final exams! In early June when the weather was fine and so were my glands! The gals were wearing less and guys were seeing more!

This was torture!

I survived!

If you are like me and were diagnosed with PKD, the anticipation of an unknown future lead to dread.

Our survival instinct seems to be programmed to anticipate the worst of a situation, so that we could do something about.

This instinct fails us when we are more or less powerless to stop the negative consequences of a situation like PKD.

We conjure up all sorts of troubling images of a future with PKD, including physical symptoms, and life on dialysis.

And, again, this is “normal” given our survival instincts.

But, it’s not helpful.

The anticipated negative scenarios that our minds conjure up can be so vivid as to convince ourselves that they are inevitable. This tends to foster a negative attitude about how we will live with PKD.

What if you talked with people who have already gone through what you’re afraid of, and offered you alternative scenarios that you might also anticipate?

Scenarios that are not so “dreadful,” but more “rational,” and not so threatening.

Now, I’m not talking about looking at the PKD experience through rose-colored glasses.

No. I’m talking about the idea that all the negative consequences don’t happen all at the same time. The imagination doesn’t usually factor in “time” in the “dreaded” scenarios. The imagination tends to “compress” dreadful thoughts into a “short time-frame,” which in reality, for PKD patients, usually isn’t the case.

Also, “re-framing” fearful thoughts in helpful.

So many people are dreading dialysis.

I did too.

When my day came, it wasn’t a joyful experience, but it wasn’t as bad as I anticipated it would be!

I figured that it’s preferable to the alternative, and thousands of people are living on dialysis. And, if they are following the correct diet and other proper courses of action do quite well. I determined that I would as well. And, for the most part, I did.

My point?

Like in the old, old TV series, “Dragnet,” go after “just the facts!”

You’re imagination is a wonderful tool.

Don’t let it carry you away into visions of “dread!”

Imagine good things!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I remember when I was in my teens, it seemed that everybody was telling me what to do and who to be.

Do you remember those days?

As I was living it, I wasn’t totally conscious that the “socialization process,” while of course necessary, took its toll on my “self-identity.”

It’s no wonder that so many people need some time to “find themselves.”

We’re told what to wear, where to go, and with whom, and our cultural “tastes” are dictated by the “powers that be” in pursuit of the almighty dollar.

So it’s tough enough to “find yourself” under the best of circumstances.

When you have the additional “ingredient” of Polycystic Kidney Disease,” it’s that much harder to know “who you are.” At some point, much of your life, and by extension, your “sense of self,” will be dictated by your disease.

It seems to me that most of us would benefit by “stepping into the quiet.”

I’m talking about those times when your mind quiets down from all the noise, external and internal.

Now, it’s easy to literally turn off the “external noise.”

It’s not so easy to turn off the “internal noise.”

But it certainly can decrease.

Being in the quiet, over time, can allow you to remember who you are. To reconnect with the “you” who may have been lost in the noise of the culture, and the very real concerns and worries about life with PKD.

Taking time for quiet reflection and journaling are great ways to step into the quiet, and I highly recommend those practices.

Yet, for many PKD patients, solitary reflection may not be enough. All too often you may be “caught” in a cycle of thoughts and feelings which are not helpful.

How many times have you heard people giving the advice,” Don’t dwell on the negative things.”

Easier said than done when you’re caught up in negative feelings like fear, worry, loneliness, and being misunderstood by people close to you.

Sometimes it takes another person to help you “put things in proper perspective.” someone who will have you gently consider other perspectives on your situation.

Imagine a quiet conversation where you are allowed to be who you are, and can express your fears, worries, and other troubling thoughts, to someone who will listen and accept you and your expressions of feelings that all to often aren’t allowed to be expressed.

As your Life Coach, not only will I listen, but I will quietly ask you if there might be other ways of thinking about your situation.

In other words, offering you a different “spin” on how you view your life situation.

You may come out of such a conversation with a brand new “sense of self” that is more aligned with the “real you!”

Many great realizations and “AHA!” experiences occur “int he quiet.”

I’ve had many!

Could it be that you can “find yourself”…in the “quiet?”

If you feel a bit “lost”  in the noise, let me invite you to “step into the quiet!”

info@innergameofpkd.com is my e-mail.

Feel free to contact me about how “stepping into the quiet” can help you remember who you really are.

I wish you

Peace and Quiet!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Human beings are social animals. We live in “tribes,” as the latest terminology labels our habitual social connections.

We all know the power of the call to conform to our tribes’ social norms. Especially in younger years. Many of us feel compelled to see the latest film, whether it matches your preferences, because we don’t want to feel left out when the particular movie is discussed by our friends.

Feeling left out is one of the worst feelings that can be felt. Remember the high school shootings?

And it doesn’t matter what age we are when we feel left out.  It’s a terrible experience.

So when a PKD patient experiences symptoms either directly from the disease, or as side-effects from treatments, and must limit his/her engagement with his/her tribe, the feeling of being left out often begins to be experienced.

Initially, members of your tribe will inquire about your health status, and show concern.  But, all too often, that “tribal concerns” fades away.

At best you may feel “marginalized.” You make such an effort to experience the sense of belonging, and, although you may achieve it for a brief time, the feeling often fades, and you feel isolated again.

You may “push” yourself onto your tribe, kind of “shaming” them to keep you part of them, but that often leads to resentments and you may end getting exactly the opposite of what you were trying so hard to achieve.

Consider PKD patients as a “tribe.”

Since every case of PKD is unique, it would very difficult for the “PKD Tribe” to “establish” social norms.

We each have our stories, our Odysseys, our triumphs and our setbacks. And members of our tribe would understand!

Case in point:

At my local PKD Foundation chapter, one gentleman got up to go to the Men’s Room. He got a big cheer! And he appreciated it!

I don’t think that would happen in his usual “tribe!”

Perhaps it’s time to seek methods of developing a “PKD Tribe” that goes beyond local PKD Foundation chapters, which, quite frankly, are not really structured as a “Social Tribe,” or on-line forums and message boards,which, though very useful, don’t provide (in my opinion), the level of connection that many people are seeking.

Right now, I don’t know what technology is available to create a more “real-time” community experience.

I don’t particularly like “Chat Rooms.”

Any thoughts?

No PKD patient should feel disconnected, or feel “left out.”

There’s enough “life energy” in the “PKD Tribe” to accept every PKD patient!

What do you think?

Please comment below on the blogsite or write to me at:

info@innergameofpkd.com .

I’d love to expand our tribe!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

No one can take away the burden that Polycystic Kidney Disease patients carry. Not doctors, not family, not friends.

Each PKD patient must bear his/her own burden in his/her own way. Clearly, that often brings on a sense of isolation. So, this in effect becomes an additional level of the burden — the disease, and the feeling of bearing it alone.

True. On-line and “live” support groups to assist in alleviating the sense of isolation. But, sometimes, just expressing the feelings of psychological fatigue over and above the physical fatigue in writing doesn’t always do the trick: The computer doesn’t respond in the way you would like it to!

Sometimes, you may want someone to share your feelings of rage, at God, at the doctors, at so-called “friends” who don’t “get it.”

Sometimes, you may want someone to give you the permission to cry, and be there to soothe you.

Sometimes, you want to share one of those little moments of triumph, like an improved reading on a blood test, or getting a good night’s sleep, or not experiencing a side effect from a medication.

And you want to share these feelings with someone who isn’t patronizing you. Like a John Wayne’s “Well good for you, little lady!”

You want to share these feelings with someone who has experienced these feelings, who has and still is to a degree still carrying that burden. Someone who has and is walking the walk.

Imagine sharing your burden with someone who will provide the “space” for you to feel perfectly comfortable in hearing what you have to say. Someone who will really LISTEN.

So that you feel UNDERSTOOD!

Someone who, after allowing you to express yourself, will help you discover ways of perceiving your burden in ways that will make it seem lighter.

As a Life Coach, I can work with you to uncover skills and capabilities that can be used to put greater meaning into your life. For instance, you may find that you can get satisfaction from writing, or doing craft work.

I heard of an individual who wrote a book while on dialysis.

Heck, these days, with on-line colleges, you can even study a favorite subject!

But mainly, I work with you not as a PKD patient, but as a human being who happens to have PKD.

Why not contact me and find out how being UNDERSTOOD can make a big difference in your life!

info@innergameofpkd.com is my e-mail address.

What have you got to lose?

I’m a very understanding guy!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Those of us with PKD, and especially those who volunteer with the PKD Foundation, (which I have) would give, and have given a lot of money for a cure to be developed.

As I have read the developments in the research for a cure for PKD, I have yet to determine exactly what a cure would look like.

Will it be a pill that you take? Somehow that doesn’t seem feasible.

Will it be a series of some sort of radiation treatments? Perhaps some sort of “radiation” will be discovered to alter the responsible genes or what they do.

Will it be some sort of surgically implanted device that secretes chemicals that “fix” the responsible genes?

Who knows? What was science fiction not too long ago has become fact.

I’m old enough to remember the polio scare in the early ’50′s!

I sure hope there’s a cure, however it will be implemented, soon! But, I wouldn’t hold my breath!

I suspect, though, anything resembling a cure will, at least initially, come in the form of just “selecting” zygotes who don’t have the PKD genes.

Well, that would work. Just like the “Brave New World” of Aldous Huxley.

I will not be affected by any “cure” that comes down the pike. Probably most people now experiencing the effects of PKD will not be affected.

I’m more concerned about the quality of life of PKD patients NOW!

Too many PKD patients have had to put their lives either on “hold,” or at least in low gear as they cope with living with the disease.

Yet, what if patients could re-direct some of their dreams toward directions which are possible to achieve, in spite of, or possibly even because of their disease?

If a given patient can find a dream that is possible to achieve, and then go through the adventure of moving towards that dream, and then achieving that dream and celebrating the joy of that achievement, wouldn’t that be a kind of “cure?”

I think it would be!

What are some dreams that you believe you can achieve even with the experience of PKD?

I’m really interested in what you would like to achieve.

Maybe I can help!

Please add your comments or write me at  info@innergameofpkd.com !

Thank you!

Dream On!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I have recently noticed an aspect of Polycystic Kidney Disease that is rarely discussed.

The scenario is simple, and common:

Individual is diagnosed with PKD.

Significant other wishes to support the patient.

Significant other doesn’t know how.

Significant other feels powerless and often guilty for not being able to support the loved patient.

OK.

What needs to be learned by the patient AND supporters of the patient is that the “PKD Odyssey” is not only taken by the patient.

The family (however that is for the patient) is along for the journey.
A diagnosis is a shock for the patient, of course. But it is also a shock for the significant other(s) of the patient.

We are not born knowing how to cope with PKD.

We all must learn, patient and supporter alike.

The disruption that a diagnosis of PKD is indeed a challenge, if not immediately, certainly down the road when symptoms appear.

But the challenge is also an opportunity of developing a close relationship between patient and significant other.

Let’s face it: When “things” are going well, there is not much of a reason to explore the “important” things of life.

(Please don’t get me wrong: I’m not suggesting that you “invent” adversity to improve a relationship! That would be stupid and it won’t work!)

But, when there is a real challenge, the closeness that can develop between patient and significant other is “priceless!”

To achieve such closeness, it requires honest, understanding, sensitivity, and that strange word, love.

The patient and the significant other are two different individuals. Each one will make his or her own meaning of the disease, based on each of their own “lenses” through which they view life.

The rapport and closeness that can develop as each one slowly develops his/her meaning of the disease and shares it with the other is the key to a successful “partnership” on the PKD Odyssey.

The patient has just as much of a responsibility to “support” the supporter, as the supporter has to support the patient!

Because when each understands what the various aspect of PKD means for themselves and shares it with the other, you have a mutual base for communication and empathy, caring, and compassion.

Neither the patient nor the significant other wanted PKD. But now that it’s here, let it be a point of sharing and understanding, rather than a point of disconnection.

If you feel that you are not getting the understanding you would like from your significant other, drop me line at

info@innergameofpkd.com and let’s see how we can get you the understanding and support you so richly deserve!

You don’t need to walk the PKD Odyssey alone!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming