We who have PKD are constantly barraged with messages from The PKD Foundation to be a part of the movement to “increase awareness” of our disease.

And, indeed, we should do what we can to “share” articles, websites, and personal experiences (our own and others) of both  the medical aspects of PKD and the subjective experience of actually having the disease.

Why we must do this was brought home to me very strongly by two individuals who have been, shall we say, “hassled” at their workplace because of their disease.

I make a big distinction between “ignorance,” and “stupidity.”

“Ignorance” is understandable. We aren’t born knowing a lot of things. We have be taught by others, shown things by others, and of course, personal experience is the greatest teacher.

Even if our parents went along their “PKD Odyssey,” each of us must travel our own personal journey.

Yet, we interact with other people. Some of these people have a great deal of influence, and yes, even power over our lives.

For us to have a “high quality of life,” it is helpful to have such people as allies rather than adversaries as much as possible.

Ignorance is eliminated with information. Stupidity can probably never be completely eliminated, unfortunately.

Most of you have been in positions of having to tell the important people in your lives that you have PKD, and have had to explain what that signifies.

It is clear that more has to be done to make “society” aware of this disease.

To this point, many people with PKD who have yet to have physical symptoms have been unwilling to share the fact that they have the disease. To some extent this is understandable. Hiding one’s weaknesses is part of our survival mechanism.

Hopefully, this “denial” strategy will no longer be necessary. If the health care law provision prohibiting refusal of health insurance due to pre-existing condition actually is put into practice, people can freely “admit” there disease, and get insurance, and begin whatever treatment will come down the pike. (As for now, drink a lot of water, if you’re in the early stages!)

As more cases of PKD “come out of the closet,” corporate HR departments will have to deal with those individuals who have the disease and, perhaps, even support such individuals by providing more flexible working conditions.

So, share your stories! Tell the world what it’s like to live life with Polycystic Kidney Disease! Having PKD is no shame. You didn’t do anything wrong except to be born!

The world needs to know our stories!

I’d like to know yours!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

That’s the title of a book I once owned. Yep. I lent to someone and…

Anyway, the point of the book was to experience the present moment as much as possible.

Suggestions included: closing your eyes and really notice and appreciate the taste of the food you’re eating. Experience the touch of your partner, and other sensory-based activities.

Now, yes. I certainly realize that “pain” is a sensory-based experience. But even some pain, if not too extreme, can be the source of a weird sort of “appreciation” if you realize what the pain is telling you.

I’m sure many of you are aware of the exercise where you attempt to “notice what color your pain is,” or to “listen to the sounds that the pain is producing.”

I did say it was a bit weird! But, it certainly can’t “hurt(!)” to give these exercises a try!

Why? Because it expands your capabilities of perception. To put it another way, it develops and increases your perceptual flexibility.

Again, what is advantageous about this? An increased perceptual flexibility allows you to perceive situations from different points of view, or in “different lights.” A changed perception brings about a changed “meaning” to an event or situation.

Case in point: Say you’re a PKD patient is about to undergo your first round of dialysis. Naturally, you’re quite apprehensive. And that’s good! (I would certainly question the mental state of a person who wouldn’t be apprehensive!)

Now, as you’re getting prepared for the dialysis session, you could be thinking, “Wow. My kidneys are shot, and I’m forced to be dependent on dialysis to stay alive. I don’t know how I’m going to deal with this. This is rough.”

And you’d be 100% right!

But, with a flexible perception, you could perceive you’re situation as follows: “Wow. It’s come to this. Not the best situation. But…I’m still here. My kidneys are shot, but I”m not. I know that many people have gone along this path and done OK. Some, even more than OK. Well, since this is the hand that has been dealt to me, I’m going to make the best of this. I’m going to comply to the diet and medication to the absolute best of my ability, and live my life as best as possible under these circumstances, and seek appropriate support from those who can provide it. And if I do the right thing, I may even be fortunate to get a transplant. Hmm. In a way, it’s kind of interesting to know that what I am to do is so plain for me to see. So…let’s do it!”

That’s what you do “Until the Messiah Comes!”

I hope your Perspective is Very Flexible!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

In order to obtain and maintain a high quality of life, it seems that a good first step is to determine the criteria of such a life for you.

In other words, you would want to answer the question, “What do I want?”

And to be as specific as possible.

This may not be as easy to to do as it first seems.

Think of how much time it takes for many young people to figure out what occupation to engage in. Think about how challenging it is to decide on various aspects of life, from buying a house, to choosing a movie to see, to wondering which shampoo to buy at the drugstore!

A useful step is to assess your life and determine what you don’t want. Then, check if the opposite of those things are what you do want.

Next, you will want to determine if what you want is possible to obtain. The usual example is the 5′ 3″ person who wants to play professional basketball. Possible, but not likely!

One thing probably everyone wants is good health. “Good health” is a relative term. The criteria for “good health” is for me at my stage of life is probably different for you at your stage.

In fact, as I write this, I realize that it might be worth asking the question to your nephrologist. “What is considered ‘good health’ for me?” I’d be curious if any doctor would actually answer that question in useful terms.

The idea here is to know what level of health is possible for you…and for me.

Blood pressure, the condition of the heart, which is often negatively affected by hemodialysis, some depression, some osteoporosis, (which I have, which prevents me from ice skating, an activity I have loved since age 4.) all have influence on the quality of life possible.

So, for me, the answer to the question, “What do I want?” is, the best health possible for me at this stage. And to help me attain it, I am compliant with the protocols assigned to me, perform some appropriate level of exercise, keep an optimistic attitude, and recognize what is my scope of control and what is not.

Then, I can start getting more specific as to how I utilize my time to create as fulfilling a life as I can , given all the constraints that being on this earth holds us to.

I’d love to hear your comments!

To The Good Life!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The “Pursuit of Happiness!”

You know the game:

School, job, money, and for many, marriage and family, trying to save money to obtain “the finer things in life,” trying to stay ahead of inflation, giving much of your soul to your employer or business…and in the end…well, you know the end.

And that is the game for people with “advantages!” Good family , good education, decent health, and similar attributes provide them with “entrance” into the “game.”

And as you know, there are no guarantees. (Duh!)

So, with all the above in mind, what kind of “happiness” is worth pursuing?

I can’t answer that question for you. But I’ve observed in myself and in others that a quality that might be labeled as “happiness” often is experienced in the attainment and achievement of “meaningful” desired outcomes.

It’s the process of attaining “mastery” in an endeavor about which you are “passionate.”

The process that I went through in becoming a Trainer of Neuro-Linguistic Programming made me “happy!”

When I assist an individual to perceive his/her situation from a new, empowering viewpoint causes me to feel “happy!”

When I was fortunate enough to go to Israel and pray at the Western Wall, I was ecstatic!

OK. That’s some of my “endeavors” that brought me some happiness.

Going forward, I intend to accelerate my own growth by learning self-hypnosis.

And you. What endeavor are you passionate enough to develop mastery in so that you can experience a sense of happiness, or triumph, or, yes, ecstasy?

There are enough areas of interest in the world for anyone, with or without Kidney Disease, to master and feel terrific about yourself!

For many of you, it’s the mastery of your own emotions in the context of dealing with your disease! And that’s no small feat! I support you wholeheartedly in this endeavor!

Consider the arts: Writing, drawing, painting, poetry, singing, musical instruments, sewing and knitting and other crafts.

How about chess, video games (not too violent!!!), charity work (The PKD Foundation!), faith-based activities.

Find your passion, develop reasonable expectations for the depth of involvement you’re comfortably able to deal with, and …go for it!

This kind of “living your passion” is a big part of a high quality of life!

Oh by the way, if you are having some difficulty in mastering your emotions in dealing with your disease, let’s connect!

info@innergameofpkd.com is my e-mail!

Keep On Truckin’, my Friends!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The ideal of democracy, according to the Declaration of Independence is to provide the right to life, liberty, and the pursuit of happiness.

Notice that it doesn’t say achievement of happiness!

There aren’t any guarantees!

However, if your pursuit of happiness is to have any chance of succeeding, it seems that a good way of approaching it is to think of it as a trip, or a journey.
First, you have to know where you want to go. Then, you have to know where your starting from.

OK. That’s obvious.

So, where do you want to go? What situation will provide you with happiness?

What comprises a “happy,” or “high quality” of life?

Each of us must determine this for ourselves. And, as time goes on, the criteria for a high quality life will probably change.

For many people, this is not as easy as it sounds.

If asked you the question, “What do you want?”, you and I would probably answer, “I want to be cured of Polycystic Kidney Disease!”

And indeed we do.

We know that isn’t possible at the present time.

So, “Besides that, what do you want?”

Again, you and I may answer, “More money!”

Yes.

Let’s try another question.

“Besides being cured of PKD, if there was one thing in your life that you could change, what would it be?”

I think this is a better question. It forces you to think about all aspects of your life and to evaluate them in terms of the level of satisfaction you derive from them.

A standard list of life aspects are is the following:

• Career
• Money
• Health
• Friends and Family
• Significant Other (Romance)
• Personal Growth
• Fun and Recreation
• Physical Environment

Again this is a standard list. You are certainly free to add, subtract, or change these categories.

The idea is to rate the level of satisfaction you are deriving from each of these areas of life (or whatever your categories are) on a scale from 0-10, 10 being wonderfully fulfilled, and 0 being, well, let’s keep things polite!

This exercise will help you determine the starting point of your pursuit of happiness, and a higher quality of life!

To be continued…

Hoping to help you pursue YOUR happiness, this is

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Quality of life.

That term is easily bandied about. I use it myself. The professionals at my dialysis center used that term to reprimand non-compliant patients.

It’s like “good art.” You may not know what it is, but you know it when you see it.

So, each of us has to define “quality of life” for ourselves.

Now, since we just mentioned that the “quality of life” is difficult to define, how would you know if you have a high quality of life or not?

One approach is to look at your life in a way similar to the way you look at a product, like a computer, or an automobile.

There are certain “features” in a product that you require the product to have in order for you to consider it “quality.” If you can’t afford the product with all the desired features, you compromise.

As you examine your life, you recall situations that were just…fantastic!

Maybe it was a social gathering where you were the “life of the party” and hated for it to end.

Maybe it was one of those…romantic moments!

Maybe it was the time when you solved a really difficult problem, and actually got rewarded for your solution!

Maybe it was that “spiritual” experience that you had in a nature setting.

What I’m suggesting is that the quality of your life is the quality of your experiences. It follows then that in order to have high quality experiences, it would be helpful to put yourself in the environment where such experiences are most likely to occur.

For the PKD patient, depending on the stage of his/her disease, entering an environment where high quality experiences may occur can be somewhat problematic.

Case in point: Before I was symptomatic, I took several wilderness vacation trips–two to Alaska and one to India.

That came to an end as I approached kidney failure!

So, as with the purchase of a car or computer, sometimes we have to compromise–this time with ourselves!

To be continued…

Have a Quality day!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programing

In one of his trainings, Tony Robbins asks to consider how you internally respond to the phrase,

‘”I hope this turns out well.”

He suggests, and I agree, that when this sentence is spoken, there is a hidden message that “this” won’t turn out well!

There is a sense that this kind of “hope” is the hope of winning the lottery! Maybe yes, but probably not!

As a PKD patient, what is it that you hope for?

You hope for a cure.

Well, that’s a good thing to hope for. If you’re young, this hope may be realized. If you’re not so young, a cure, should it come, may come too late for you.

The thing about this kind of hope is that you are desiring something that is not in your control to make happen! (Unless you are a research biologist!)

Let’s look at another word: Expect.

What can PKD patients expect?

Most PKD patients can expect some sort of symptoms that will affect their lives to a significant degree.

They can expect to be highly involved with the medical profession (and the insurance industry as well!)

They can expect to make adjustments in the relationships, and careers.

They can expect to make shifts in their lifestyles.

And…with education, support, (and perhaps some coaching), they can expect to develop and apply attitudes and skills that will make those adjustments in such a way as to minimize their negative impact, and maximize the quality of life possible for you.

We do not control the fact that we have PKD. We can not control whether or not a cure is in our individual futures.

But, we can control how proactive we are in obtaining the latest information about our disease. We can control how we comply with the medical protocols prescribed to us.

And, we can seek out support from those who are ahead of us on the PKD Odyssey.

As a Life Coach,I will support you on your Odyssey, not just by passively providing understanding and a ready ear to listen to your situation, but also to provide encouragement and motivation to overcome those inevitable obstacles that you will come upon.

It is one thing to hope for something good that you can’t control.

It’s another thing to know what you can control and what you can’t, and to take control of what you can and expect the best of what the situation can provide!

I expect to hear from you!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’ve been writing posts to this blog twice a week for about eight months. I have had some fantastic responses. It’s been a joy to share my story and experiences with you.

Yet I feel unfulfilled.

I know I can contribute more.

But I can’t read your minds to know how I might be able to serve you in a more meaningful ways.

Writing blog posts is not the best means of communicating with you.

First of all, the obvious fact is that it’s written. Which means you don’t get the benefit of the non-verbal aspect of the communication that you would get if you heard my voice.

Blog posts are also not read in real-time. You may read these posts days after I have written them, and any comments made to them will happen days after I have forgotten the mind-set I was in at the time of the writing.

You understand that support is a two-way street.

I need to know what kind of support you need.

You have to let me know how I can continue to support you.

For me to write blog posts that aren’t helpful is clearly a waste of everybody’s time.

I’m asking you to help me help you.

Please write to me letting me know what you need to be supported on your PKD Odyssey.

I may be just the resource you need to help you overcome some obstacle on your path that is causing your life to be less than it might be.

Maybe you feel disconnected from your circle of friends and family because of your disease.

Maybe you’re discouraged because you aren’t able to perform to your usual level because of constant fatigue.

Maybe you feel you aren’t getting the best medical care possible for you.

Maybe you are so focused on a possible cure in the future that you are not focusing on your own self-care as much as you might be.

Maybe you’re walking around in the world wearing a mask in the attempt to hide your disease from others, and it’s taking a heck of a lot of energy out of you.

Whatever your challenge on your PKD Odyssey is, please let me know!

info@innergameofpkd.com

or please enter comments in the comment box.

You know friends, sometimes I feel that I’m writing this blog and it just goes out into the blogosphere and never returns! I hope that this isn’t the case!

Again, I’d love to contribute more. Please let me know how!

Thank You!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Life is short.

Many say that their lives “suck.”

Well, PKD “sucks.”

OK. Let’s agree on that.

Now what?

What’s your next move?

Are you just going to continue living a “sucky” life, putting up with being misunderstood? Feeling that the doctors aren’t listening to you? That you have a “potential” that isn’t quite being realized?

Why are you tolerating this state of affairs?

Yes, PKD is a “sucky” disease. But you are more than your disease. Much more.

I have had readers write to me of the frustrations they have experienced having PKD. Like I didn’t understand. Of course I understand!

You don’t have to tolerate being misunderstood by family and friends!

You don’t have to tolerate feeling that your doctors aren’t listening to you!

You can tap your “potential” to achieve goals that are very satisfying! That could also include deep relationships!

Look. Most people, PKD or not, have dreams, longings, and yearnings that will never be fulfilled. But many dreams are!

What might be the difference between one person fulfilling a dream and another person not fulfilling a dream?

What does it take to follow a dream to it’s fulfillment?

Work and persistence!

But before that, you have got to believe that the dream is possible for you to obtain!

If you don’t believe you can achieve it, you obviously wouldn’t start the process!

Do you believe that you can get your friends and family to understand you and thereby accept you more fully?

Do you believe that you can communicate better with your doctors such that you feel that you are listened to?

Do you believe that at least some of your dreams can come true?

(I was about to write, “Do you believe in miracles? Yes!”, but I didn’t want to get carried away! )

If you feel that you need a little push, or kick in the butt, let’s talk!

info@innergameofpkd.com is my e-mail address.

Hey! You never know! An e-mail is free! So is my response!

I believe that you can have a great life!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming