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

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

OK.

So I took the last eight posts to describe the major part of my PKD Odyssey.

Perhaps, as was my intention, that it helped to “humanize” the process. It’s one thing to hear someone telling you about hemodialysis, it’s another to listen to someone describing the process.

But above and beyond that, I learned a number of concepts, practices, and, what I like to call “mind games” that I used to cope with the…challenges…that I faced.

1. I learned to stay in the present, as best I can. I learned NOT to project what may or may not happen in the future. I can’t control the future. All I can do is make the best choice NOW based on the best available information that I have NOW.

2. I learned to look at my situation from the higher elevation. The world is bigger than me. Polycystic Kidney Disease may be unique to me, but it is not unique to the medical professionals. They know what they’re doing, provided you co-operate, and respectfully ask for THEIR co-operation! Also, if I had a bad day, pain, cramps, nausea, I realized that this one day is not the totality of my life.

3. I learned to “turn off” my emotions when I had to experience something that was a bit undesirable, like, for instance, injecting myself with “epo” to control anemia. I basically became like a robot, and, shutting off the negative, protesting “voices in my head,” I proceeded, mechanically, robotically, to do what I had to do.

4. I learned the judicious use of the facility of “comparing.” I DID compare myself to those who I considered worse off than I was, and offered a silent blessing to them, and a silent word of gratitude that I was where I was. I DID NOT compare myself to those who ate and drank normally. My thoughts were,”Well, this is where I am right now. Envy for healthy people doesn’t do me any good, while full acceptance does.” I also figured that I was someone else’s “negative comparison!”

5. After my transplant, I certainly went through a stage of great appreciation for the human and technological advance that made my transplant, (and by extension, all “medical miracles.”)

6. I developed a great compassion for people whose health is less than optimum. As a result, I use my training as a Life Coach and a Neuro-Linguistic Programmer to assist PKD patients through their Odysseys.

If you feel that some aspects of your PKD Odyssey is somewhat more challenging than you would like it to be, I invite you to visit “My Coaching Services” page at

http://innergameofpkd.com/my-coaching-services/

and contact me at:

info@innergameofpkd.com

to set up a complimentary “PKD Odyssey Strategy” session. My training and experience may lighten your burden as you travel down your own “PKD Odyssey!”

May your Odyssey be an easy one!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro_linguistic Programming

To continue my “struggles,”

I suppose it was natural that I didn’t associate the difficulty I had in getting dental X-rays to PKD.

Dental X-rays? Yeah. To put it politely, there is such thing as the “gag reflex.”  As the 1990’s moved along, dental X-rays were getting harder and harder for me to tolerate.

If you, as a PKD patient, have noticed this, I hope this comforts you in that you are not alone!

I also didn’t make too much of noticing that my fingernails were becoming more and more brittle as time went on.

A symptom of PKD? The condition of my nails improved considerably when I was on dialysis and are almost perfect after my transplant!

In any case, my kidney function was on the decrease. Yet as many of you know, not much can be done while there is still ample kidney function! (I wish something could be done. Both then…and now! Well, you could drink a lot of water!)

At last, in 1995, my primary care physician referred me to a nephrologist, who I later found out is one of the top nephs in New York City (as published in a local magazine of top doctors.)

And the monitoring began. The blood tests for kidney function and hemoglobin, the 24-hour urine collection (in what I called “the little brown jug!”)

And the symptoms started. Fatigue. Painful bone bruises (really tough when standing on the crowded NYC subway!) And, the leg cramps. I had those bad.

Waking up at night, legs locked, forcing them to stretch only to have the muscles on the other side of the legs cramp up. The pain was quite severe.

Then the time came to inject myself with epo. I developed this whole routine of setting up a tray in the bathroom with my..er..paraphernalia and shot myself up! Well, I kept telling myself, “This is a heck of a lot better than a transfusion!”

And it helped! The fatigue diminished!

All this while still working as a computer programmer for a major bank!

What fun!

More later!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The future is never really here, is it? Tomorrow becomes today and the next is future. We never actually get there.

What we do experience is a flowing “present.” In effect, it is always “now.”

But…our minds have the ability to create “visions of the future.” This, of course, is a great capability. Nothing would be created if were not visualized as a future accomplishment.

Our gifted minds can visualize all kinds of “futures.” Positive futures, (or positive expectations) and negative futures, (or worry, fear) are possible results of our “future visualizations.”

Much of how we visualize the future is based on experiences we have had in areas of life similar to what we are “futurizing” about.

If you have had an embarrassing experience in public speaking as a child in school (as I had), thinking about an upcoming speech will probably put you into a state of fear, even if the upcoming event has nothing to do with the childhood episode.

Likewise, an early positive experience (say, playing a musical piece at a school recital) will likely lead you to look forward to  more musical expressions.

As a PKD patient, the view of your future may be largely influenced by your early experience with doctors, and, for many of you, the PKD experience your parent has had. (This of course assumes you inherited PKD. Not every PKD patient does.) If your parent had a difficult time, you may be viewing your future negatively. (Or not at all, as was my case. At one time, I literally couldn’t ’see’ my future!)

Habitually viewing future negatively, whether the distant future, (long range dreams and longings) or short-term future (“I fear that my numbers are not going to be good the next time the doctor examines and tests my fluids.”) certainly doesn’t put your mind-body in a positive state. The imagined future (imagined, because it hasn’t happened yet) will play a large part in how you approach life as you travel on the PKD Odyssey.

The same mind that created your “negative future” can be trained to create “positive futures.” There is no cost to quietly, persistently, and consistently tell yourself that there will be positive outcomes. As you use words in your new, “positive self-talk,” corresponding images will form in your mind. Slowly, these positive images will take hold and dominate your thinking and soon, you will be visualizing “positive futures.”

This takes a lot of practice, and a lot of support. You don’t want to be around a lot of people who are “whiners.” You want to be around people who have overcome difficult situations. If your own circle of people doesn’t provide encouragement for you to visualize a positive future, seek support from the message boards, like www.dailystrength.org and www.kidneyspace.com and similar sites devoted to Kidney Patients.

If you need more encouragement, I would be happy to provide as much encouragement as you need!

I’m here at info@innergameofpkd.com where I can not only share my experiences, but also help you create a positive future!

To The Future!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Following up on my post about “frustration,” I’d like to introduce my concept of “Mind Games.”

In Neuro-Linguistic Programming, there is a concept known as “re-framing.” This is a fancy term which merely means putting a different spin on a situation.  It’s the “half-empty, half-full” principle.

In playing “mind games,” there are a lot of “What if” questions. Often they are used to “re-frame” people’s perception of the future.

“Worry” is imagining a negative future outcome. When you face upcoming surgery, your survival instinct naturally is concerned about problems. Now, in the present moment, there is nothing you can do about any problems with the future surgery, other than following whatever medical protocol is given to you.

So, what if you completely trusted your surgeon and hospital staff to perform your surgery successfully? You wouldn’t worry! You would look forward to the process of surgery and recovery and enjoying the benefits of the surgery!

Personally, I have “re-framed” going to the hospital for whatever procedure I am to undergo as “going to the body shop!” The metaphor of “hospital” equating to “body shop” serves me in several ways: It de-personalizes the procedure, shifting it from “me,” to “my body.” I feel less “invaded” in this mind-set. I also shift the concept of “surgical procedure,” which can be a bit intimidating, to “body repair,” which is more tolerable for me.

When I go to my nephrologist, I mentally consider it going to my “inspector,” who checks me out for problems. Again, this re-frame de-personalizes doctor appointments for me.

Another use of “mind-games” is for when people ask the pathetic question, “Why is this happening to me?” Well, in many situations, you darn well know why! If a person gets lung cancer after smoking for forty years, well, there’s the answer!

However, if it’s something like having “de novo” PKD, (you have the defective gene and your parents don’t), the “why” question naturally comes up. my response is: “If you knew why, what difference would it really make? You still have to deal with your disease. So, consider the ‘reason’ as one of those ‘mysteries of life’ and place your energies into obtaining and maintaining as high a quality of life as is possible for you, instead of wasting it on seeking a reason which may be both unknowable and unhelpful.

Is playing these “mind-games” easy? No. It takes practice. But I think you can see the benefits of using your mind to “re-frame” what appears to be negative into at least a less threatening situation for you.

What ‘mind-games” do you play?

Keep minding your mind!1

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming