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

It isn’t what happens to you that matters. How you respond to what happens to you is what counts.

It follows that how you respond to having Polycystic Kidney Disease (PKD) makes a big difference on how you cope with its trials and tribulations.

As a PKD patient, you know that you are on a lifetime Odyssey. While on this Odyssey, you experience:

• Physical symptoms
• Lifestyle changes – diet, activities
• Changes in the nature of your relationships (family,friends, work, and community)
• Extra stress at the workplace
• Doctor visits and treatments which may be troublesome
• Financial issues
• Other “inconvenient” challenges

Coping with these experiences, for you, the PKD patient, is the main, overriding factor of your life.

The “Inner Game”

The “inner game” of PKD is your set of responses to the challenges you are facing. This includes the mental, emotional, and even physiological skills that you use which create the attitudes, perspectives, strategies, and motivations that you employ for those responses.

Now, quite honestly, this “inner game” is never “won,” because the “game” is never over.

However, these mental, emotional, physiological, and even language skills can be developed in such a way that you can be “winning” this “inner game.”

As you develop these skills and apply to them to your life as a PKD patient, you begin to notice that you are better able to cope with the challenges you face.

Playing the “inner game” in a winning way is like having a set of extra-strength “shock absorbers” to absorb the effects of the bumps on your Odyssey. The bumps are still there, but you experience a “smoother ride.”

So, what inner skills are needed to play the “inner game” in a winning way?

• Mental Flexibility – the ability to adapt to changing situations easily.
• A Sense of Adventure – see your Odyssey as the adventure of your life.
• Positive Expectancy – go through life expecting that you will experience the most positive outcome for YOU.
• Living in the Present – “The past is a canceled check, the future is a promissory note, the present is your wealth.”

Sounds great, right?

OK. I know that “developing these “inner game” skills while dealing with the challenges of my PKD is easier said than done.

But, what might be possible for you and the challenges you face, if you had help?

What If a Life Coach would support you?

As a Life Coach and PKD patient, I travel the PKD Odyssey as well. I will partner with you to help you develop and apply the skills you need to play the “inner game” in a winning way such that the PKD challenges become easier to handle. I’ve been able to develop those skills in my life, and I can coach you on how to develop them for yourself.

Typical challenges that we discuss are:

• Maintaining a positive relationship with your own body.
• Keeping a high level of self-esteem.
• Overcoming the sense of “victimhood.”
• Designing strategies to preserve positive relationships with family, friends, and co-workers while making new connections.
• Building rapport with medical professionals.
• Constructively expressing frustration.
• Working through the “should s” that may be ruling your life.

The Life Coaching Process

The process of Life Coaching mainly consists of your Coach asking you pointed questions, and you answering as best you can. Your answer will lead to further questions, In this dialog, you will move toward perceiving your “inner truth.” This “Inner Truth” consists of the core beliefs, rules, values, and internal structures that govern your life. If some of these “truths” are no longer helpful to you on your Odyssey, we will explore alternative viewpoints and devise action steps which will produce more positive results. Your “Inner Truth” will be your own.

Me: “What is the biggest impact of PKD on your life right now?”
You: “I seem to have less energy than I used to.”
Me: “How does having less energy affect you?”
You: “I come home from work and I’m too tired to handle the household chores.”
Me: “Household chores?”
You: “I usually “pick up a ‘few things” from the store on the way home, and cook dinner for my family.
Me: “Tell me, is it written in stone that you have to do both of those chores?
You: “No, but that’s the way we’ve always done it.
Me: “Do you think it might be time for a change in the way you’ve ‘always done it,’ since you are no longer the way you always were?”
You: “Yeah. Maybe it’s time to do things differently.”

And so on…

As you can see, this dialog will most likely lead to a new domestic “system” that will lighten the burden of the PKD patient.

Other Life Coaching techniques include “role-play” and “verbal journaling” (reflectively speaking what’s on your mind). I have many resources to draw from that you may find helpful.

The result of the Coaching Process is that you will have discovered, uncovered, and applied inner resources (such as “courage”) and outer resources (such as the internet) to make your Odyssey as smooth as it can be.

So reflect a moment on your current experience of PKD and your Odyssey.How are things working out? How is the experience affecting the quality of your life?

I ask you to consider having me partner with you as your Life Coach.Together, we will work out strategies and outcomes which will allow you to successfully work through many of the challenges that you face on the Odyssey of PKD, and start winning.

I’m looking forward to partnering with you!

Onward!
Coach Richie Perl

P.S.

Allow me invite you for a complimentary 25-minute “Discovery Session” during which we will discover the best way to smooth out the bumps you’re experiencing on your Odyssey. In this session, you learn how Coaching works, and learn if the Coaching Process and the Coach is right for you.

Also, please consider subscribing to this blog, “The Inner Game of PKD.”

When you do, I will send you my workbook,

“Goal Setting: 5 Steps To Developing a Well-Formed Outcome Statement.”

This workbook will guide you through the steps of formulating a goal in such a way that will provide you with a clear target on which to focus your efforts.

So, enter your name and e-mail in the boxes at the left, and get started on empowering your life!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

There are times when I need to be by myself. To be solitary.

This is in addition to my meditation time.

I need to “process” what is going on in my life.

“Circumstances” (like Dr’s. appointments) have led to the cancellation of several plans of enjoyable events.

Sometimes even “simple” joys of life seem difficult to obtain.

So, I tend to “brood.”

But…even though I experience some “down” time like everyone else, I also realize that to remain “solitary” is not healthy.

We need companionship.

Now, nobody can be all things to all people, and we shouldn’t try to be. We all have our strengths and weaknesses. We all have something to offer in the way of companionship, and we all have needs to be met through companionship.

When it comes to Polycystic Kidney Disease, it is often difficult to find empathetic, understanding companionship.

I didn’t have it when I was symptomatic. Yes. My wife helped a lot. But, if one hasn’t experienced the fatigue, the pain, the cramps, the hematuria, and the nausea (often at the same time!), it’s tough not to feel that you are, somehow, “disconnected” from the “mainstream.”

Sure, the on-line discussion boards help. But it’s not the same as a soothing voice that can calm you down, and reassure you that what you’re going through now is not permanent, and that eventually, through treatment, you will feel better, and that in the meantime, that companion will be there continuing to provide gentle encouragement, just the way a mother “hushes” her baby.

Now, you may say, “Oh, I’m grown-up now. I don’t need “mothering.”
Would you turn it down if it was offered to you?

I wouldn’t!

I wish I had it at the time!

No. I’m not a “mother.”

But I know how to soothe!

info@innergameofpkd.com is my e-mail.

Contact me and be soothed!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Suppose you were given the chance to design Paradise for yourself.

(You never will, totally, but this is a mind game. You never know where this may take you! )

Presumably, in your Paradise, you enjoy perfect health.

So, now that you’re healthy, what do your surroundings look like? Where do you live? With whom?

Sometime back I saw a travel show featuring areas in southern Italy which seemed amazing, with the waters of the Mediterranean keeping the temperature in the 80′s for much of the year. I can deal with that!

Who are you living with? (Remember, this is a mind game! You are allowed to dream here!)

Who are your friends?

I would have optimistic, friendly, active people. People who use their life energy in joyful ways.

What are you doing in your Paradise?

I’m often canoeing, or hiking, and at other times, practicing meditation.

And lots of parties! Listening to great music of all types and dancing with my very youthful wife, and some other pretty ladies!

Ans, for many people, doing something of service often adds to the sense of fulfillment, what service are you offering to the world?

Obviously in my Paradise I am a great Life Coach, offering my services to those who a bit “stuck” in life. Those who are not quite sure what next step to take to manifest their “Paradises.”

Now, for some of you, this exercise may sound silly. But, if you actually take the time to do this, you may conjure up some aspects of your Paradise that you might be able to make happen now! Or at least a darn good substitute for them!

Why not give it a shot?

It costs NOTHING!

I’m curious what comes up for you!

Please e-mail me at:

info@innergameofpkd.com and share what Paradise is for you!

Maybe together, we can make our Paradises a reality!

Hope to see you in Paradise! (But not to soon! )

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming