In one of his trainings, Tony Robbins asks to consider how you internally respond to the phrase,

‘”I hope this turns out well.”

He suggests, and I agree, that when this sentence is spoken, there is a hidden message that “this” won’t turn out well!

There is a sense that this kind of “hope” is the hope of winning the lottery! Maybe yes, but probably not!

As a PKD patient, what is it that you hope for?

You hope for a cure.

Well, that’s a good thing to hope for. If you’re young, this hope may be realized. If you’re not so young, a cure, should it come, may come too late for you.

The thing about this kind of hope is that you are desiring something that is not in your control to make happen! (Unless you are a research biologist!)

Let’s look at another word: Expect.

What can PKD patients expect?

Most PKD patients can expect some sort of symptoms that will affect their lives to a significant degree.

They can expect to be highly involved with the medical profession (and the insurance industry as well!)

They can expect to make adjustments in the relationships, and careers.

They can expect to make shifts in their lifestyles.

And…with education, support, (and perhaps some coaching), they can expect to develop and apply attitudes and skills that will make those adjustments in such a way as to minimize their negative impact, and maximize the quality of life possible for you.

We do not control the fact that we have PKD. We can not control whether or not a cure is in our individual futures.

But, we can control how proactive we are in obtaining the latest information about our disease. We can control how we comply with the medical protocols prescribed to us.

And, we can seek out support from those who are ahead of us on the PKD Odyssey.

As a Life Coach,I will support you on your Odyssey, not just by passively providing understanding and a ready ear to listen to your situation, but also to provide encouragement and motivation to overcome those inevitable obstacles that you will come upon.

It is one thing to hope for something good that you can’t control.

It’s another thing to know what you can control and what you can’t, and to take control of what you can and expect the best of what the situation can provide!

I expect to hear from you!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’ve been writing posts to this blog twice a week for about eight months. I have had some fantastic responses. It’s been a joy to share my story and experiences with you.

Yet I feel unfulfilled.

I know I can contribute more.

But I can’t read your minds to know how I might be able to serve you in a more meaningful ways.

Writing blog posts is not the best means of communicating with you.

First of all, the obvious fact is that it’s written. Which means you don’t get the benefit of the non-verbal aspect of the communication that you would get if you heard my voice.

Blog posts are also not read in real-time. You may read these posts days after I have written them, and any comments made to them will happen days after I have forgotten the mind-set I was in at the time of the writing.

You understand that support is a two-way street.

I need to know what kind of support you need.

You have to let me know how I can continue to support you.

For me to write blog posts that aren’t helpful is clearly a waste of everybody’s time.

I’m asking you to help me help you.

Please write to me letting me know what you need to be supported on your PKD Odyssey.

I may be just the resource you need to help you overcome some obstacle on your path that is causing your life to be less than it might be.

Maybe you feel disconnected from your circle of friends and family because of your disease.

Maybe you’re discouraged because you aren’t able to perform to your usual level because of constant fatigue.

Maybe you feel you aren’t getting the best medical care possible for you.

Maybe you are so focused on a possible cure in the future that you are not focusing on your own self-care as much as you might be.

Maybe you’re walking around in the world wearing a mask in the attempt to hide your disease from others, and it’s taking a heck of a lot of energy out of you.

Whatever your challenge on your PKD Odyssey is, please let me know!

info@innergameofpkd.com

or please enter comments in the comment box.

You know friends, sometimes I feel that I’m writing this blog and it just goes out into the blogosphere and never returns! I hope that this isn’t the case!

Again, I’d love to contribute more. Please let me know how!

Thank You!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Life is short.

Many say that their lives “suck.”

Well, PKD “sucks.”

OK. Let’s agree on that.

Now what?

What’s your next move?

Are you just going to continue living a “sucky” life, putting up with being misunderstood? Feeling that the doctors aren’t listening to you? That you have a “potential” that isn’t quite being realized?

Why are you tolerating this state of affairs?

Yes, PKD is a “sucky” disease. But you are more than your disease. Much more.

I have had readers write to me of the frustrations they have experienced having PKD. Like I didn’t understand. Of course I understand!

You don’t have to tolerate being misunderstood by family and friends!

You don’t have to tolerate feeling that your doctors aren’t listening to you!

You can tap your “potential” to achieve goals that are very satisfying! That could also include deep relationships!

Look. Most people, PKD or not, have dreams, longings, and yearnings that will never be fulfilled. But many dreams are!

What might be the difference between one person fulfilling a dream and another person not fulfilling a dream?

What does it take to follow a dream to it’s fulfillment?

Work and persistence!

But before that, you have got to believe that the dream is possible for you to obtain!

If you don’t believe you can achieve it, you obviously wouldn’t start the process!

Do you believe that you can get your friends and family to understand you and thereby accept you more fully?

Do you believe that you can communicate better with your doctors such that you feel that you are listened to?

Do you believe that at least some of your dreams can come true?

(I was about to write, “Do you believe in miracles? Yes!”, but I didn’t want to get carried away! )

If you feel that you need a little push, or kick in the butt, let’s talk!

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

Hey! You never know! An e-mail is free! So is my response!

I believe that you can have a great life!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Greetings!

I’m back after missing a week due to an eye infection during which I couldn’t wear my contact lenses and couldn’t see well enough to go on the computer!

The subject is “curiosity” and I’m writing about this from two different aspects — 1) Curiosity about the way you subjectively experience living with PKD and 2) curiosity about this blog, me, and my coaching services.

As I went through the symptomatic stage of my PKD, I, being of a highly analytical nature, was constantly curious as to the way I perceived my disease. In other words, there were two levels that I experienced my disease — 1) the actual physiological symptoms and the emotional feelings stemming from feeling sick all the time, and 2) curiosity and “commentary” about the symptoms I was experiencing. “Wow! The cramps were really tough that time!” “Wow! My urine was really bloody this time! Eewww!!”

No doubt you have experienced this “two-level” perception of your symptoms.

The point I wish to bring out is when you are curious about your disease, you are, at least for a few moments, looking at the disease and not actually experiencing it. In NLP this is called taking a meta-position. When you’re in the meta-position, you are, again, momentarily, disassociated from the direct experience of the symptoms. It’s almost like you are observing your own symptoms. This is good. It tends to help you separate your sense of you from the sense of your disease. In this way, you won’t think that you are your disease. You are not.

The second aspect of  “curiosity” I want to discuss is the lack of curiosity about what I can do for you as a Life Coach. I have written this blog for eight months and, quite honestly, have received very nice feedback, and have answered some questions that readers have asked, but no one has ever inquired about my coaching services.

I am curious as to why you are not curious about how I might guide you along your PKD Odyssey in such a way as to experience the highest quality of life possible for you!

Can you please help me to help you by letting me know why you are not curious about my coaching services?

My intent was to share my experiences to help smooth your PKD Odyssey. I also have been attempting to demonstrate that I care about you!

Perhaps I haven’t been hitting the mark.

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

I’m curious to know what you think!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

For PKD patients, life goes on regardless of the patient’s attitude towards his/her disease.

PKD patients, like everybody else, have their dreams, longings, and yearnings. They still have a “purpose” to fulfill.

In the pursuit of these dreams, “life,” in the form of PKD, gets in the way. No big deal here. You know the saying, “You want to make God laugh? Make plans!”

What I’m saying is that PKD patients, after all is said and done, are no different than anybody else. We all have our desires. Some we are able to achieve, and some we are not. (You can’t always get what you want!”)

But, clearly, you can get some of them!

It’s a matter of focus!

There are areas of my life that I would like to focus on more than I do. And, in fact, I am improving in the area of focus.

The “obstacle” is that I have many interests! have to allocate my time to make “progress” in these areas of interests! Often easier said than done!

I’m slowly cutting back on TV watching. (Not much, but some!)

I’m sure you have goals and outcomes that you want to achieve.

But, in order to pursue these desires, you really have to answer, in as much detail as possible the question,

“What do you want?”

(Besides being cured of PKD!)

The next question, which many “success” systems don’t ask, is,

“Why?” or “What is important to you about having that which you want?”

Having a strong enough “Why” will provide the motivation to pay the price to achieve the goal.

The story of your life is largely made up of the “pursuit of your happiness.”

Think of some people whose life story is inspiring. Why is this the case?

Personally, one of my “heroes” is Albert Schweitzer. You might want to “check him out.”

What would make your life story an inspiring one? It doesn’t have to ba grandiose one like Schweitzer’s.

Sometimes, living an “ordinary” life (whatever that is) under challenging conditions is quite inspiring!

What has to happen for you to live a “life story” that is will satisfy your “Why?”

I’m curious as to what would make your life one that you would be satisfied with.

info@innergameofpkd.com or enter “Comments” below.

Remember, your “PKD Odyssey” is not just about PKD!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Much of the work of a Life Coach is dealing with the “story” of the person he/she is working with.

We all have our stories. In every on-line forum concerned with Kidney Disease, new members will post their stories about how they were diagnosed, how their families reacted, how scared they were, ya-da ya-da ya-da.

I am not disrespecting either the people nor their stories!

What I’m illustrating is the pattern that newly diagnosed patients follow:

You’re newly diagnosed. You’re in a level of shock, even if you know about PKD because of the family history. You don’t know how to physically and/or emotionally respond to your new “situation.” Your body-mind is overloaded with confusion, a sense of the unknown, fear, anger, and perhaps guilt (what did I do to deserve this?). Because of this overload, you are incapable of responding rationally, at least in the beginning.

So, you basically regress to a state of a child and cry out for help, which, if you’re honest with yourself, is really a cry for “Mommy to kiss it and make it go away!”

Fortunately, eventually you’re able to “digest” the aspects of your “new reality” and begin to make some rational decisions about your life.

So, by and large, that’s the general pattern that a newly diagnosed patient goes through at the start of his/her “PKD Odyssey.”

Clearly, though, life is not so predictable that a “ready-made” pattern of life can continue for all PKD patients. There is no “one size fits all” script or story for anyone. No. Each of us has to experience his/her own life.

For anybody, this is both a bit scary and a bit exhilarating like the roller coaster ride that life is often compared to.

The good news is that most aspects of life are not totally unique. Each of us doesn’t have to reinvent the wheel! It’s already been invented!

The PKD Odyssey is not new! It’s actually quite a well-worn path!

Yet, there are many aspects of the PKD Odyssey that are not immediately apparent as you start the journey, or even if you’re well into it.

As a Life Coach, I can partner with you to act as a “guide” to assist you in “navigating” the twists and turns of the PKD Odyssey.

Together, we can develop a “pattern” of living that will lead to the highest quality of life possible for you!

I invite you to contact me to discuss how Life Coaching can raise the quality of life for you!

info@innergameofpkd.com is the e-mail address!

May your ‘patterns” be life-enhancing!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Reading the title of this post may cause you to wonder if I’ve gone completely mad!

I understand! I might even agree with you!

But I’m not talking about the kind of joy that comes when you…say…win the lottery. Or the joy that young guys feel when that special girl says “Yes” for the big date.

I’m talking about a kind of joy that, quite frankly, I’m just beginning to explore myself.

It’s more along the lines of the joy a parent feels when their baby struggles to speak his/her first words: The parents empathizes with the baby, but feels the pride in witnessing the effort the baby puts forth in his/her process of development. Like the butterfly struggling to come out of the cocoon, you can’t assist in the process…the butterfly must do it alone!

When an individual goes through tough times, it’s certainly not fun. And no, the tough experiences are NOT a source of joy…at the moment!!!

But how many stories have we heard of people going through real tough experiences and say that they came out of it “a better person for it?”

Part of the challenge of this topic is how one defines “joy.”

I’m sure you can “reminisce” about a tough experience and what part that experience played in becoming the person you are today. While not enJOYing the remembered experience, the “lessons learned” might put a nostalgic smile on your face!

I remember being told to sit down while totally blowing a presentation at work which didn’t help my standing in that organization. In fact, I was eventually fired from that organization!

But I look back at that moment, empathizing with that “unfortunate fellow” and, with a wistful grin, realizing a) I survived,  b) the time and effort that is needed to deliver a good presentation, and c) compassion and understanding for those who put on presentations.

Now, I highly appreciate a good presentation!

For PKD patients, do you now have a better appreciation of good health? If you are dialyzing or have a transplant, how much joy are you experiencing for some of the “simple pleasures,” like not not feeling rotten all the time!

How much appreciation do you have for your fellow patients of ALL health problems?

It’s the joy of understanding, empathy, appreciation, and compassion of and for the Human Condition!

It’s looking at life from the Higher Elevation and realizing, in the biggest picture, even in the midst of pain, tragedy, and loss, that each of us is part of the human drama, and can experience joy in knowing that!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The last few posts were a bit..uh..technical!

I apologize if my writing caused your eyes to glaze over!

However, in spite of this, I really do hope that I’ve been able to communicate by a rather roundabout way the following message, which you’ve heard a hundred times:

It’s not what happens to you that is as important as how you respond to what happens to you.

My further message is that you can change the way you respond to the circumstances of your life.

As the question in the title of this asks, why bother?

Why bother to go through some of the mind games that I have suggested in previous posts?

If your life is satisfactory, PKD or not, and you find that you can’t think of any aspect of your life that couldn’t improve, then…there is no reason to bother to play mind games to change your attitudes to the events and conditions of your life.

You’ve got it, as we used to day way back when, “made in the shade!”

But if your life can stand a little improvement, especially if your PKD kind of “gets in the way” of having a fulfilling life, than maybe you should consider “bothering” to play some mind games to see if different ways of perceiving your situation might lead to a “better” (whatever that is for you) attitude, mind-set, or perception, which in turn, would lead to more empowering actions that you would now be willing and able to take which would positively enhance your life!

Or…you could keep doing what you’ve been doing, and getting what you’ve been getting!

You say your family doesn’t “understand” what it’s like for you to live with PKD? Maybe there is something YOU can do about it!

You say you don’t think your doctor takes your symptoms seriously? Maybe there’s something YOU can do about it!

You say that your friends no longer interact with you the same way anymore now that PKD is affecting life? Maybe there is something YOU can do about!

In these and other similar situations, since YOU are the one who isn’t satisfied, whether you like it or not, the problem is YOURS!

Unless YOU do something about it, the chances are highly unlikely that the other people in the problematic situation will change!

It is up to you!

Consider really sitting down and assessing your problematic situation. Chances are, a change might do you good!

I may be able to assist you in “seeing” other aspects of your situation!

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

You can “change your mind!”

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Language is limited. English, the only language I happen to know, cannot be used to describe direct experiences.

My mother gave me that lesson when she taught me about describing experiences. Her answer…”Describe the color “blue!”

Asking a PKD patient, “What’s the experience of PKD for you?” would be like trying to describe the color “blue.”

But notice the format of the more usual question: What’s it like having PKD?”

Here, the question is asking for a comparison. “Having PKD is LIKE…”

This question can, at least to a reasonable degree, be answered using language. Because the answer is given by comparing the direct experience of PKD to something that can be described as something familiar, to such a degree that the questioner can get some sense of what the patient feels.

I used to say that having PKD “is like walking around with a heavy backpack that you can never put down.”

I’m sure every PKD patient would have a different and possibly unique response. And even that response will change under different conditions.

OK. So what?

The “languaged” description, or metaphor, is NOT the experience itself! It is though, the patient’s representation of the experience. Once again, it’s the “half-empty, half-full” concept. However you describe it, the amount of water is the same.

So, it’s possible, by changing the “representation” or metaphor of the PKD experience, the actual experience can be influenced.

In previous posts, I discussed how I “represented” my future by describing as walking on a foggy road not being able to see more than a few feet ahead. That visual description was subjectively quite depressing for me. That was changed by undergoing an NLP process using the concept of “Time-lines,” in which I changed the perception, or “representation,” or metaphor of my future to a more positive one, in which I “saw” myself living a full life until at least age 80.

The payoff? I was no longer depressed about not having a future!

Yes. This is an example of “mind games” that I  often make reference to. If “played” correctly, they can have a profound effect on how a PKD patient experiences his/her disease.

Consider, if you will, a situation in which you “changed” your mind. How did that “change” come about?

After all, the only thing that’s constant…is change!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

At first glance, you may wonder how the mind is connected to Polycystic Kidney Disease.

From a physical point of view, I don’t think a direct connection can be made. I’ve never heard of anybody thinking his/her disease away!

However, the mind is involved in how your perceive your disease.

In my last post on “meaning,” we discussed how each of us creates his/her own perception of what PKD means to each of us.

This perception of what having PKD means to us obviously affects every aspect of our lives.

A further aspect of our mind’s involvement in our own perceptions is how we describe that perception. I’m basically talking about the “half-empty, half-full” concept.

The “facts” of our disease, the numbers, BP, GFR, creatinine, BUN, etc, are precisely that: Demonstrable, measurable aspects of our disease.

How we physically feel, though a fact, is not yet measurable. A scale from 1 to 10 is hardly scientific!

Yet, pain, fatigue, nausea, and cramps are what many of us actually experience!

I don’t know about you, but I never “felt” my creatinine count, nor any other “number!”

So what we actually experience is not measurable! Think about that! Can you measure the level of “good” or “bad” you’re feeling at any given time?

I can’t!

Yet our perceptions are based on these subjective experiences!

Have you ever felt rotten, yet when a friend asked how you were, you answered, “Well, could be better,” or some other statement that tended to minimize your feeling rotten, in order to not look bad to your friend?

Sometimes, because the mind tends to justify what it expresses, you actually feel a bit LESS rotten because of your statement!

(I’m not saying this always occurs. In extreme pain, for instance, this usually doesn’t work. However, sometimes your own description of your condition can be a kind of “self-hypnosis,” leading to a slight reduction of the perception of pain! Hypnosis is often used for pain management.)

So, pay attention to how you describe the perceptions you have about your disease. Telling yourself that “PKD is the worst thing ever” will tend to make that perception more intense for you.

Saying that “Having PKD isn’t the best hand that I could have been dealt, but in this day and age, I have a reasonably good chance of playing my cards right and living a fulfilling life,” will go a long way in making that your overriding perception of your disease, and propel you to act in a manner consistent with that perception!

After all, it’s all in your mind!

No. I take that back.

Some of it is still in your kidneys!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming