One of the first challenges I faced after being diagnosed with PKD was getting to ACCEPT that fact. It may sound ridiculously oversimplified, but the way I felt about the diagnosis was the same way I felt about getting a pimple on my face. I wanted it to go away as fast as possible.

As it sunk in that the PKD wasn’t going to go away, I went through the usual self-pity. “Why did this happen to me?” Of course I knew exactly why it happened to me. I inherited from father, who had dies two years before my diagnosis. Shoot! What a revoltin’ development!

And the damn thing was that there was nothing to be done! Nothing at all until the BP became elevated!

Great. I got a disease through no fault of my own that nobody can do anything about. (This was in 1970.)

Talk about powerlessness!

Well, I soon reasoned that since there is nothing I can do about it, at least in the early stages, then (as we say in New York City, “fehgeddaboudit!” ). Which, to a reasonable degree, I did.

I developed a career as a computer programmer, got married, went on vacations, and lived a typical life of a cubicle-dweller.

The PKD was definitely in the background, though not denied. My blood and urine were tested every few months, and everything was as it “should be.”

The point of this narrative is merely my own living version of the “Serenity Prayer.”

For PKD patients, these are the cards that were dealt to you. There’s no “re-deal!”

You are not the only one with a less than fantastic “hand” of cards!

As you progress along your “PKD Odyssey,” take the opportunity to use your computer to connect with other PKD patients, and if possible, get involved with your local PKD Foundation chapter.

It’s a heck of a lot easier to accept your situation when you “travel” on your “Odyssey” with others on the path.

If you are having some difficulty in accepting your disease, give me a holler!

I accept you because I understand and have experienced the sense of being “different.”

Please e-mail me at:

info@innergameofpkd.com

and let’s connect!

Keep the Conversation Going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’ve been noticing that a number of PKD patients have been indicating to me that they are not able to communicate their feelings, concerns and even needs to family and friends.

Even though I have recommended journaling to express your thoughts and feelings, clearly we all need human interaction to keep us in the flow of life.

In this discussion, I will not attempt to “solve” the problem of not being able to communicate with family and friends, but perhaps we can take a closer look.

Our diseased kidneys are part of our physical bodies. The effect of these diseased kidneys are physical, emotional, and social. It’s quite unfortunate when people in our circle don’t want to acknowledge this about us. It is a form of rejection. (And I don’t mean organ rejection! )

So, if you feel somewhat rejected, I’ll assume that this is something that you DON’T want.

You want to be accepted as fully as possible for who you are (cysts and all) by your family and social circle.

Let’s turn the tables. Who does a person have to be in order for you to be accept him/her?

You want a person to be friendly, reasonably open, a person who allows a give-and-take, someone who offers some praise for your “good deeds” and accomplishments, someone with whom you feel you have, or can develop a level of mutual trust, and someone who won’t abuse that trust.

The obvious question is: Are you such a person to the people in your circle?

Or, (and not accusing anybody, since I don’t know who reads this) are you abusing your PKD situation playing the part of a helpless victim seeking sympathy, or even pity?

If you were to play this part, it would be clear why people in your circle would push you away. They all have their own problems. Oh sure. Someone may help you with a chore, or give you a ride occasionally, and that’s great. But you’re looking for connection, understanding, and nurturing.

What would it take to be the kind of friend to your circle that you would want for yourself?

You know the answer! Be a friend to the people in your circle! Show concern for their issues. As difficult as it may be for you, be as “regular” a person as you can be, within your capability.

The responsibility is yours for your circle, as it is mine for my circle, PKD or not!

Hint: I’m sure that some of your experiences on your PKD Odyssey may be of some help to someone in your circle. Offer that experience humbly! You have a lot to offer your friends and family!

I hope my offerings are accepted!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As human beings, we have feelings. Joy, happiness, pleasure, satisfaction, and, of course, frustration, anger, sadness, despair, etc.

And, again, as human beings, we express these emotions. From laughter, to tears, from shouts of joy, to the silence of depression, our emotions get expressed. Externally…or internally.

We attempt to express our emotions constructively. Especially when we are around others.  As much as our “loved ones” love us, it wouldn’t be helpful to continually express negative emotions around them. Nobody can tolerate a “whiner” for too long.

So when the “adversities” of PKD build up negative feelings within, what are some constructive ways of expressing them?

I know for myself, I give myself a little “self-indulgent time” to feel sorry for myself. You know , the old “pity party.” But I only do it for, oh, maybe half a day. Then, I find some chore that needs to be done and I do it. Activity usually “snaps me out of it.”

Journaling has been a useful tool. Getting internal feeling on paper in English (in my case) forces me to go through a process of “languaging” my feelings, and makes them more objective, almost “tangible,” and somehow, a bit disengaged from my “soul. The feelings seem to “transfer” from my “soul” to the notebook page.

And of course, sometimes it helps to talk. Preferably with someone who knows how to listen. This is not always easy to accomplish since most people don’t how to “listen.” There is a skill to listening.

A number of PKD patients have mentioned to me that they don’t get to express their PKD experience with their families. It’s understandable, but sad.

I wonder what it would be like if they actually would be able to talk to someone who knows how to listen, is empathetic, and who cares.

Sometimes, you just may need to talk, and “vent.” sometimes, you may need some feedback — someone to act as a “sound board.

“Do you think I overreacted when I put down my sister-in-law for serving a meal with all those potatoes, when she knows I can’t take too much potassium?”

Issues like these do come up in the life of a PKD patient.

I’ll let your imagination go wild with the above quote.

I understand. I know how to listen. I can help you “see” some of your issues from a more “positive outcome” viewpoint.

As I said…I can listen!

If you need a “listener,” please contact me at:

info@innergameofpkd.com and you will be heard!

I’m all ears!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Given that this is the age of “Social Media,” I was wondering how Polycystic Kidney Disease patients feel about these sites. Facebook, Twitter, LinkedIn (the general sites) and KidneySpace (for all kidney diseases) HopeSquare (sponsered by the PKD Foundation), and DailyStrength (which covers all aspects of health and has a Polycystic Kidney Disease discussion group).

All these sites perform helpful functions. Yet, I sense that there is something missing.

Maybe I’m going a bit deeper than most people, but…that’s me!

For me, the social sites do give you the opportunity to connect with people that you wouldn’t ordinarily connect with. And, assuming that the other person wants to connect with you (which is not an automatic assumption!), this is good!

The question is the level of connection. I just get the feeling that there are PKD patients out there that may need a level of connection with other patients that the social sites don’t provide. Here’s what I mean:

The social sites correctly provide great privacy. You reveal only what you want to reveal. This, of course, is how it should be. The question for PKD patients looking to have a deeper connection is, what’s NOT revealed? How do you develop the trust so that one patient feels ready for a somewhat deeper connection with another?

It can be done, of course. You can use the “chat” function, and use private messages, and even request personal e-mails for more detailed communication, as the trust develops.

This is fine for individuals. I don’t know about you, but I would like to know as many PKD patients as possible!

Yes, I certainly would like to apply my training to help patients experience the highest quality of life possible for them.

And I’m also aware how positive local PKD Foundation chapters can be when patients and their families interact face-to-face! No social site can provide what face-to-face contact can!

Do you think that weekly conference telephone calls might be useful in bringing the “real-time” dimension in having PKD patients connect with each other?

I’d like to know what you think! Please add your comment below or contact me at

info@innergameofpkd.com

and perhaps we can make something happen!

Let’s keep the conversation going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Polycystic Kidney Disease patients want what everybody else wants!

Health, abundance, loving relationships, the freedom to express our inner longings, and to feel that our lives count for something!

So, what has to happen for us to attain that?

Well, if I knew the answer to that, I probably wouldn’t be writing this blog!

But I do know this: We can at least take a good look at what we think is topping us from attaining this!

Our disease is a “gift.” (I’m not saying that it’s a welcome gift. But it’s a gift just the same. We “received” it with no effort on our part!   )

Does this “gift” of PKD stop us from attaining the great things in life? Clearly it doesn’t have to. There are PKD patients who are experiencing ALL the good things in life!

If you are such a person, congratulations! Carry on!

If you are a person who is going through a tough time, physically, emotionally, financially, or socially, I truly feel for you.

I’ve contacted people through the Social Media who are going through difficult times. Employment and insurance problem rank high. I really hope that the Health Care nonsense gets resolved in a compassionate, humane way.

The question to be asked is, “What is blocking me from attaining the good things of life that seem worthwhile to me?”

I myself am asking this question. I find that I’m not utilizing my time in the way that most serves me. I’m unsubscribing from a number of “e-zines” that take too much of my time to read, and now demand that videos be viewed.

The suggestion here that, although there may be aspects of your life that are not desirable, take some time and, well, look at your use of time!

Check what your actually doing during a typical day. Determine how much of the day is under your control. Notice how you make use of that time. TV? OK. But if your social life isn’t what you’d like it to be, perhaps a better choice of time use may serve you better.

In other words, in whatever aspect of life that you seem to have control over, CONTROL IT! Don’t allow yourself to let go of that control and have life control you even more than it does!

Develop a new hobby! (Drawing with pencil on paper isn’t an expensive hobby! Neither is writing!)

I’m sure somewhere in your past you observed or participated in some activity that stimulated your interest!

Develop that interest! Be pro-active not only in your health care, but in as many aspects as you are able to!

That’s what life is all about! Involvement!

BTW, I’m revisiting my interest in chess!

Less e-mails. More chess!

What are you interested in?

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer Neuro-Linguistic Programming

When you receive a diagnosis of Polycystic Kidney Disease, among the many pieces of information you receive is the now oft-repeated phrase, “This isn’t a death sentence.”

What takes a bit of time to sink in is the the concept that although PKD isn’t a death sentence, it is a Life Sentence. Until such time as medical science can alter our genes and their actions concerning our kidneys, we are PKD patients until the day we die.

It is a 24/7 experience.

It is an experience that may be difficult to share with people who can’t or won’t invest the time and energy to be on the receiving end of your attempts to describe, explain, share, vent, or emote what your experiencing.

And those who may be “there for you” initially, may become a bit weary of “receiving” the “gory details” of your experiences on the PKD Odyssey. You don’t want to “push” your friends away. You know you can’t constantly “bend their ears.” You yourself have listened to enough “tales of woe” from other people.

So, how do you release the “emotional pressure” that is built up as you undertake the challenges of the PKD Odyssey?

These days, many people write blogs about their journey on the PKD Odyssey. This can be very helpful, both for the writer, who gets to express his.her feelings about he journey, and for the potential reader, who, as a fellow traveller on the Odyssey, can get the benefit of the writer’s experience.

For my part, I blog in order to share not only my experiences on the PKD Odyssey, but also to share “hints” or “techniques” that I’ve “picked up along the way,” especially as a Coach and a trainer of Neuro-Linguistic Programming.

When it comes to describing, explaining, sharing, venting, or emoting your PKD challenges, I can help you communicate your experiences by assisting you to use more sensory descriptions of what you are actually experiencing.

So I may ask you, “Does your fear have a color?” or “When you experience the hesitation of telling a loved one of your latest setback, where in your body do you feel that hesitation?”

And, chances are, you will come up with an answer! Thus more fully describing the totality of your experience, and feeling that you have more effectively communicated what you are actually going through!

Most of your friends probably have the skill or willingness to undergo this sort of internal exploration.

If you find that you are frustrated in expressing to people what you’re going through on your PKD Odyssey, feel free to give me a holler at:

info@innerganeofpkd.com

and schedule a “Complimentary Consultation” to discover how we might work together to make your PKD Odyssey as smooth as it possibly can be for you!

PKD may be a “Life Sentence,” but it doesn’t have to imprison you!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As a Certified Trainer of Neuro-Linguistic Programming, the use of language is of great importance to me. We all know that words have power. Concepts and ideas that have changed the world had to be converted to words in order to be communicated and implemented.

In the discussion about “support,” it is all too easy to assume that we all understand the meaning of support. In the case of PKD patients, there are so many aspects of the disease that require different kinds of support, that the word “support” itself has become so generalized, that in ordinary conversation, it has lost much of its intent.

With this in mind, I’d like to consider the the point of view of the person who requires some support of one kind or another.

As a PKD patient myself, my first “requirement” to be considered “supported” was to feel that I was being heard and understood. At the young age of 16, when I was first diagnosed with kidney disease, I didn’t feel that I was. Since my Dad died of PKD two weeks after he passed out on the street, our family had no experience of the “PKD Odyssey.” My Mom had severe emotional problems, and, although she tried her best, she couldn’t quite provide the sense that she understood what I was going through. In addition, I didn’t have the emotional vocabulary to describe what I was feeling.

So, I started on my Odyssey, and, although not totally alone, I wasn’t traveling with the sense that I was understood.

OK. So what does it take to feel “understood?”

In Neuro-Linguistic Programming (NLP), the main intent of the practitioner is to “see the world through the lens of the client.”

The way for that to happen is to be “in rapport” with the client.

The best example of “rapport” is watching a young couple in the state of infatuation. The two individuals are almost like one, sometimes almost literally performing a mating dance!

When a patient feels “connected” to a person offering empathy, that feeling of “connection” is a major step towards feeling “understood.”

You know the drill: Quiet, calm, reassuring words. Listening without judgment. Gently asking for clarity from the patient to make sure you clearly “receive” the “message” that is being “sent.” (A message that may contain facts, in combination with strong emotions such as fear, anger, guilt, and the like.)

And when the patient finishes a “message,” the next step is to “feedback” the message, to ensure that the listener “heard” it correctly, and allow the patient to clarify the message if necessary, until the patient feels as much as possible that the message has been “received.”

Until this point, the listener should not provide any of his/her own input to the process. You can’t comment on a situation in a helpful manner until you understand the situation as much as possible.

I’ll discuss more on this topic next time.

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Continuing with the idea of human-to human support, I would like to, at the risk of pointing out the obvious, discuss the benefits of “live, real-time human contact!”

Most of us have had the experience of “venting” to a willing (or unwilling!) listener. We feel a sense of being “unburdened,” at least for a while.

Similarly, when sharing a “win,” something positive (“My creatinine was a bit lower!”) to a listener, there is an increased sense of validation in the process of sharing.

These are no small benefits! The ability to use language to express feelings is a big part of what makes us human. Consider poetry and literature. Consider the fact that artists can use language to express feelings, and that we as readers can benefit by having the artists express our feelings for us.

A willing and knowing listener, who by the virtue of traveling on the same PKD Odyssey as the speaker, can increase the sense of “unburdening” and “validation” that the speaker experiences, thus making the sharing more effective than “merely” posting the issues on a message board.

Plus, there is real-time, two-way interaction, during which the “message” can be clarified if the listener doesn’t “get it” at first.

“Friend, I hear you when you say you feel like crap. Do you mean physically, emotionally, or both?” (“Feel” can mean physical sensations, or “mood.”)

In the process of clarifying the message, the speaker must go through a process of utilizing language to more precisely describe the state of being he/she is experiencing. The clearer, more precise the message, the greater the sense of “unburdening” (catharsis) or validation.

The feeling of both being “listened to,” AND being “heard,” is a very satisfying feeling. In many respects it’s like the year-and-a-half old child struggling to be understood, and the satisfaction when “Mommy” finally understands what he/she is trying to say! Or, trying to make yourself understood in a foreign country. Doesn’t it feel great when “they” finally understand what you want?

So my friends, how can we “up the ante,” so to speak, in providing a level of support that is more effective than on-line message boards?

Years ago, the concept of “pen-pals” was popular. This is 2009. Can “phone-buddies” be a viable form of “support?” With the technology available, I think it is.

What do you think?

info@innergameofpkd.com

Keep the conversation going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming