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

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

None of us can do everything we want to do.

It’s a big world, and it offers much to experience.

With life being what it is, the more we experience, the more experiences we want. There are never enough experiences to satisfy us.

We are also limited in what we can experience by the fact that we have bodies! Bodies which need to be fed and cared for.

For many of us, our bodies at times need more care than at other times. The constraints that our bodies establish can be very frustrating. I know too many people for whom PKD ended relationships, including marriages.

So, how do you deal with the constraints that PKD has established?

Believe it or not, not that much differently than people who have a greater degree of health.

As I bumped along on my PKD Odyssey, I noticed that my interests gradually changed from a wide spectrum of interests with little depth, to a much narrower range of interests with greater depth.

In other words, I gradually and “naturally” let go of areas of interests that, when I reflected on the for awhile, I actually no longer was interested in them! Much of the “letting go” was in the area entertainment. I got to the point where I was no longer compelled to watch the “latest and the greatest” movie, music group, TV show, etc.

I have never watched an episode of “Seinfeld!”

As a replacement, I developed (and am still developing) interests in more “classical” endeavors, such as spirituality, classical music, and chess.

Now there’s nothing wrong with keeping “up-to-date.” I watched Justin Bieber last night on the fireworks show. OK. Fine. Now I’ve seen him. I’m not a 14-year-old girl, so he’s not a big deal for me. And that’s the way it should be.

But when PKD has got you in a state of greater constraints than you’re comfortable with, you might want examine what it is you want to do that you’re unable to do right now.

There was a time when I liked to go hiking. When I was sick, that wasn’t possible. But it was possible to watch the nature shows on TV, which is what I did.

Acknowledge your limitations. (But don’t assume that they are permanent!)

Determine what you can do, do that, and at least for the time being, let go of what you can’t do!

You might actually be surprised at what you can do!

Many of you nay remember “The Birdman of Alcatraz!”

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The sirolimus clinical trial failed to establish that the drug retarded cyst growth.

OK. We know what doesn’t work.

Clearly, anything even resembling a cure will not be available in the very near future.

Even a viable treatment is not expected for at least three years.

So, we march on along our PKD Odyssey as we have been: keeping our blood pressure down, eating the low-protein (but not too low) diet, watching our kidney function deteriorate, hoping we will avoid dialysis, eventually, for many of us, going on dialysis, waiting for a transplant, or, for some of us lucky patients, getting a transplant and hoping it works for a long time.

We hope that we will have the health insurance to cover all the medical costs.

We hope that we are understood and supported by our circle of friends and relatives, and the medical professionals we deal with.

For some, this happens. Great social and medical support, good discipline to comply with medical protocols are the inner and outer resources which are available.

For others, the story is not so simple: Lack of insurance, some denial by the patient and/or family members, inability to communicate with medical professionals, a feeling of being misunderstood and a sense of isolation, even a sense of impending doom.

So. What to do.

Hope. Positive Expectancy. “Realistic optimism.”

To exaggerate just a bit, I think you would agree that being in the world with an attitude like “Eeyore” (the depressed donkey in ‘Winnie the Pooh’) is probably not the healthiest attitude to adopt. (And as one who takes Zoloft, I know how easy it is for a PKD patient to experience depression. It’s actually a symptom of PKD!)

OK. Some depression may occur. Let it not get the best of you!

Like in Monty Python’s “The Life of Brian,” let’s “Look on the bright side of life!”

The medical technology is better than ever. There’s a new Health Insurance Law easing into effect. More and more donor kidneys are usable. The chances of living a full life with PKD is a heck of a lot better than it was even a few years ago.

On the “social” aspect, while not completely equivalent to a good supportive circle of friends and relatives, the on-line forums are available to connect with other patients on the path.

True. As the phrase goes: “PKD sucks!”

But the resources available (including being coached by me!) can provide the PKD patient with the means to travel the PKD Odyssey with optimism and a fair share of joy!

info@innergameofpkd.com is my e-mail. Please let me know if you need help in uncovering  and discovering your inner resources to ease your journey on your PKD Odyssey!

Oh, In full disclosure, my favorite cartoon character is Goofy!

Gawrsh!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming