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

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

I know at first glance the question seems dumb.

You’re seeking to be cured!

Now!

You want “Mommy to kiss it and make it better!”

Well,  in case you haven’t heard, that’s not too likely to happen.

So, putting the desire to be cured aside, what are you really seeking?

If you’re like me (remembering that there is only one of me and one of you!) you want a sense of lightening the burden you may feel you are carrying on the PKD Odyssey.

Now the “burden” isn’t totally physical; there are social, career, financial, and other “non-medical” aspects to the burden.

These are, of course all connected. And, to be honest, not all of these aspects can be easily dealt with.

Yet, there are always possibilities to ease the burden that may not always be apparent.

Relationships can be maintained, working arrangements can be altered, ways can be found.

For each of you on the PKD Odyssey, I am sincerely interested in doing what I can as a Life Coach to assist you in lightening your burden by assisting in modifying the perception you have of your situation. There’s always another way of “looking at things.”

So, my question to you is:

If you could wave a realistic magic wand, where would you like your relationships, health (remember, within reason), and general quality of life to be in the next 6 months to a year?

And if you had that, what would that be like for you?

And how terrific would be for you?

By definition, a “coach” is a vehicle that takes you from where you are, to where you want to go.

For this to work, you have to know where you are, and where you want to go!

So, I know that you will take the time to answer the above questions so that I can serve you better.

I’m always open to have a complimentary conversation to help you determine and assist you in “getting where you want to go!

info@innergameofpkd.com is my e-mail address, and in answering the questions, you will have begun the process of lightening your burden!

Express yourself!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Living one day at a time, or even one hour at a time (which by-and-large is a good thing to do), our vision of life is necessarily limited.

You may be in a position where your main concern is getting to your dialysis center. Or that your prescriptions are received on time, or even that you have the money for those prescriptions. Or that you can get through the day with a minimum of pain. Or that you can do those necessary chores that your family has depended on you to perform.

Yes. Many a PKD patient experiences “living in the now!”

Too often, “now” isn’t a great place to be!

So, perhaps you can take time to look at your life from the “higher elevation,” and take stock.

As you look at your life from a higher elevation, you would most likely see the major (and some minor) events in your life that have gotten you where you are today. Some events were positive, some were negative, but from this vantage point, it really doesn’t matter. What happened, happened. And, equally as important, what didn’t happen, didn’t happen.

Obvious? Of course.

But as you look at this life of yours, notice the talents, skills, experiences, and expertise you have acquired and developed along the way. If you are like me and most people, many of those “positive attributes” are not being currently utilized as you travel the PKD Odyssey.

But suppose you “resurrected” an old hobby or activity that you used to do in younger days, that you are capable of doing today.

Might that change your life for the better in even in a small way? It doesn’t have to be a costly activity. If you can draw, it only takes a pencil and a piece of paper!

If you like to write, start a blog!

One of my readers writes beautiful poetry!

In other words, don’t let PKD stop you from developing your talents!

Self-expression does a lot to release the frustrations of having PKD.

I’m sure there are a lot of PKD patients who have a lot to share!

I am VERY interested in learning what talents you have to share!

Please leave comments or e-mail me at

info@innergameofpkd.com and

Express Yourself!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I can’t possibly know how you are experiencing your own life. I hardly know this for myself.

We experience what life throws at us, and we respond (or react!).

We know calm people, agitated people, people engaged with life, people who seem disassociated, and each of us experience these states at one time or another.

There is no judgment here. When adversity hits, we respond in our unique way. In spite of what many “success gurus” say, all we can do is respond with the resources we have at our disposal at the time.

When an event occurs that seems to increase our burden, it is difficult to respond initially in a useful way.

Hopefully, maturity and life experience teaches to respond in a manner which is helpful to our intentions.

But, being human, we often get stuck and may tend to repeat responses that are not as helpful as they might be.

Traveling along our PKD Odyssey, carrying a burden that, depending on your stage, can be very tough.

I remember talking to nurse practically in tears that I wish I could put down this burden even for a couple of days. Of course, at that time, I could not.

I had to learn to accept that burden. Even though I was able to increase my level of acceptance, I never completely did. I still had my need to “vent.”

I was in psychotherapy during much of this period, which helped.

Even though we must often put on a “brave face” in the world, there is a time to confide in someone who will listen and understand, and provide some measure of hope. Perhaps you have such a person in your life.

In addition, hopefully, you have the opportunity to just find a peaceful place, and “step into the quiet.”

Allow yourself to go to that place of serenity where at least, “internally,” you can put down that burden for a few minutes.

The following has and continues to help me:

The Original Serenity Prayer

by Reinhold Niebuhr (1892-1971)

God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.

Amen.

I hope this helps you.

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming