Those of us who live in North America take a lot for granted. We get food at the supermarket. Water from the tap. Heat. Air-conditioning. In the car. Connecting by cell-phone and computer. Entertainment with cable TV, DVDs, video games. (I just bought myself a Nintendo DS XL!). There are all sorts of gadgets (which us guys love!). Whose got it better than us?

PKD patients, though, can’t take their health for granted. We’re told that PKD is a “death sentence.” Rarely are we told that it’s a “life sentence.” But it is.

The “PKD Odyssey” is not always a comfortable path. On a physical level, there is often a lot of pain, and very debilitating symptoms contributing to a life of “feeling sick,”

The emotional toll is high as well. Often the inability to work, strained relationships, feeling misunderstood, even by medical professionals, insurance issues and financial burdens.

Spiritual concerns come to play as well. “What kind of life can I live with this disease?”

Yet, with all these negative aspects of PKD, it is helpful to assess where we are in the grand scheme of things.

This is 2010.

My father died of PKD in 1968. He was too far gone to use any of the very few dialysis machines in existence. There were no transplants to speak of.

Although many people speak of the “good old days,” I don’t think anyone would really want to live back in 1968. (There were a couple of assassinations that year as well!)

I, for one, have a great appreciation for the medical technology that’s available now.

Having a degree in Engineering, I can and do appreciate the design, construction, testing, and marketing of all the equipment that is found in a hospital that make diagnosis and treatment of disease as fantastic as it is compared with the past.

Even though not all doctors are equal, it is helpful to appreciate the training they have gone through. It’s not all that easy! Appreciate the fact that doctors are, after all, human beings!

And when you go on dialysis and, hopefully, your physical symptoms are alleviated, be appreciative of all the research and development that have occurred and continue to occur to make life with PKD as good as possible.

When(!) you get your transplant, and you’re super-appreciative of your donor, you will also find how appreciative you are of the “ordinary” things of life…like peeing!!

So, it’s OK to take conveniences for granted. Just take a moment to appreciate the fact that these conveniences didn’t just pop out of thin air. A lot of work went in to produce them!

I appreciate the technology that allows me to write and share this blog!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

When you see the word “results,”  you, like me, probably have your mind think of “lab results!” We know what a traumatic experience that can be!

But, thankfully, this is not the kind of “results” I’m talking about.

I’m talking about the kind of results you want to produce in your life.

Hopefully, we want to produce life-enhancing results, whether on the job, as parents, students, friends, lovers, and…patients.

Producing positive results is the reason we do anything. We don’t go to work intending to screw up! We don’t engage in personal relationships intending to make enemies!

We want to produce results that “solve” the “problem” that required our action in the first place. From doing the laundry to resolving personal life issues, we want results that a) resolve the external situation, and b) cause to feel that sense of satisfaction and fulfillment that all too often is elusive.

As a PKD patient, you want to produce the results of having the best level of health and lifestyle possible for you.

Reading the above sentence, it is clear that a first step is to determine what is possible for you.

There might be activities that have given you a lot of satisfaction in the past, but because of your disease is not recommended for you to continue doing.

So, instead of bemoaning what you can’t do, consider other activities that can approach the same level of satisfaction that you can do.

On a deeper level, if your circle of people don’t provide the support you feel you need, seek other people. You don’t necessarily have to let go of the people your with now. Just add more people with whom you can relate as a PKD patient. There are plenty of them out there! Including me!

Give yourself the gift of time to sit down and figure out what results you want to produce in your life in as many aspects as you wish. Determine what is realistically possible for you to produce.

Then, go for it!

Again, I have an e-book that will help you formulate a goal statement:

Goal Setting: 5 Steps To Developing a Well-Formed Outcome Statement (pdf format)

free for the asking by requesting it at

info@innergameofpkd.com .

Hoping you have positive life results and negative lab results!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

At the risk of sounding a bit…religious(!), I would like to discuss a subject that has only recently “come up for me.”

This subject is “connecting.”

Without connecting with other people, by definition we feel isolated. I’m sure you’ve seen reports that say married people live longer than unmarried people.

The concept of “connecting” naturally brings about questions. Questions of “criteria” of “connections.”

We have acquaintances, co-workers, close family members, distant family members, close friends, and friends that we have out of inertia.

As often written about here, many PKD patients often feel disconnected. They are not happy with this state of affairs, and as humans often do, they tend to blame the “other party” for not understanding them.

Clearly, this mindset doesn’t usually bring about the desired result of connecting with people and feeling part of the “mainstream.”

The responsibility is on the patient to learn how to initiate and maintain connections with people who are upbeat, optimistic, yet empathetic.

The usual rules apply” Be interested in the other person, listen, accept the other person for whom he/she is, don’t judge, etc.

In other words, to coin a cliche, “Do unto others…”

It may take a while for you, the PKD patient to find and connect with people with whom you feel in “rapport” with. Many people may not fit your criteria of a good “connection.”

But the search is worth it.

When you think about, aren’t some of the most meaningful moments in your life been those “deep” conversations in which you and the other person have had the opportunity to express your inner feelings, and having those feelings mutually accepted? And, perhaps, the conversation may have led you to new perspectives on life?

Baby boomers may remember a hit song by a group called “Spanky and Our Gang” called, “I’d Like To Get to Know You.” In my opinion, a very good song!

What is it like when someone you don’t know well comes up to you and says,

“Hello! I’d like to get to know you. Do you have some time when we might get together and talk?”

Unless the person is…well, you know, “objectionable,” I would jump at the chance at making a new connection!

I hope I’m not “objectionable,” because truly,

I”d like to get to know you!

info@innergameofpkd.com is my e-mail.

I’m really serious. It’s not a bad thing to be known by somebody!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Last time, we were discussing what to do if you determine that the change you desire for yourself is not possible for you.

One tactic is to modify your desired change in such a way that it is possible for you to achieve it. In other words, compromise.

Or, postpone going for your desired change until your life circumstance is such that it is possible for you to achieve it.

Generally speaking, postponing going for desired changes is not recommended. (I’m not talking about postponing desired changes due to, say, medical procedures. I’m talking about waiting passively for “things to get better.” Life is to be lived, not postponed!)

So, once you’ve determined that the desired change is possible for you,

WRITE IT DOWN!

Take some time, get a pen and notebook and answer the following questions:

• What do I want?
• Why do I want it?
• What would happen when I get it?
• How will I know when I have/achieved what I want?
• What will it take to get it?
• Am I willing to pay the price?

By this time, you will have thought about your desired change and noticed that it has become a bit more complex.

To help you in this process of determining if what you want is really worth pursuing, I have a small e-book called:

Goal Setting: 5 Steps To Developing a Well-Formed Outcome Statement (pdf format)

which I will send to you by requesting it at:

info@innergameofpkd.com free of charge.

In any case, no matter what stage of kidney disease you’re in, you can always make changes to improve your quality of life.

It may as simple as reading a book instead of watching TV one night a week.

Or, allotting time to have a conversation(!) with your family members.

Even small changes can greatly enhance your life.

So, figure out what one thing you would like to change in your life (that’s possible for you) and go for it!

You know I’m here to cheer you on!

The only thing that’s constant is change!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The question I have in mind is the following:

“If you could change one thing in your life, what would it be?”

OK. Stupid question.

But let’s ignore the obvious answer: “I would want to cured of PKD!”

Of course you would! So would I!

So, besides that, if there was one thing you could change in your life, what would it be?

Since the question says “one thing,” you might have to think about it for a moment.

Many would say, “More income!”

Some may say, “A better relationship with (whomever).”

Or, “A transplant to get off of dialysis!”

Whatever your answer, I’m sure you could visualize what life would be like if that change were made. Your visualization would be pleasant, would it not?

Now, I’m not going to go into all that “Law of Attraction” stuff.

What I will do is ask some questions to help you make the change you want, if that change is possible for you. I know that there are those who say that “anything is possible,” and from a theoretical point of view, this is correct.

I was inspired a few days ago when I watch a paralympic ice hockey game. Guys with no legs, one leg, or useless legs played “sled hockey.” It was quite amazing and competitive.

But most of us do have practical limitations or “constraints.”  Like, for instance, money! Yes, that can be overcome, but it may take away time from making the change you want.

So, the first question to be asked about your desired change is, “Is it possible?”

Most desired changes ARE within the range of possibility. You probably wouldn’t have formulated the desired change if you didn’t think it was possible.

A more pertinent question is, “Is your desired change possible for YOU?”

A reader of this blog is on Peritoneal Dialysis and trying to figure out a way that he can go camping like he used to. Hopefully, he’ll figure it out, but it MAY NOT be possible for him, at least under current circumstances.

If you determine that your desired change is not possible for you, at this time or ever, it would seem prudent to consider modifying your desired change, rather than experiencing the frustration of keeping the negative thought of NOT achieving your desired change.

To be continued…

Here’s hoping you get to keep your change!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

“Care”, like “love”, is a “loaded” word. It can mean almost anything. How many questionable activities have occurred because person A “cared” for person B?

“I’m doing this for your own good! Because I care!”

Well, it’s usually proper for a parent to do things for a child that the child might not immediately appreciate.

For adults, the state of “caring” for another person is, of course, part and parcel of “what makes the world go ’round (as well as “money” as in “Cabaret!”).

The question is, how do we learn what true caring is? Is caring for another person advising him/her to “take it easy” when it might be time for extra effort? Or the opposite, urging a friend on to put in more effort when the need is to ease back? And to what degree can one person’s immediate and/or longer term needs be known by another person, when oftentimes we can’t even be clear on what our own needs are?

Each of us, therefore, would do well to periodically make an assessment of the state-of-affairs in the various aspects of life: Money, career, relationships, personal environment, leisure activities, and determine what you have, what you need, what is possible to obtain, etc.

One aspect of life that I discovered fairly recently, is “self-nurturing.”

How do you literally “take care of yourself?”

If you were your own child, are being taken care of by your “parent” (you!) the way you want to be taken care of?

Lately, I’ve been eating a bit more chocolate than my “parent” would want me to! And I’m not exercising as much as my “good parent” would want me to!

So, how would you like to be realistically “taken care of,” in the state of life you’re in now?

Yeah, I know. I’d like be taken care of the way a rich person’s child would taken care of. Maybe. Why does the name Paris Hilton come to mind?

Obviously, the point I’m making is that is very helpful to establish criteria by which you can determine if you are taking care of yourself, and by which you can know if other people, as well-meaning as they may be, are really “caring ” for you!

Take Care!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

OK.

In previous posts, I discussed the possible benefits of having a Reality TV show depicting the real struggles of PKD patients.

It would certainly increase awareness of the disease, and maybe even shift the idea that “PKD” is more than “another cause” for which people can contribute money.

It would certainly demonstrate the “human side” of PKD.

I also indicated that all of this “awareness” would have absolutely no direct impact on the patients who may be on such a show.

But…what about PKD patients who are not on a such a show?

What would happen if a viewer knew someone with PKD? Would that viewer now be more sensitive to the life challenges of his/her PKD acquaintance?

Certainly one would hope so.

And let’s further speculate that this viewer was a supervisor of a PKD patient. Or a “friend” of a PKD patient. Or a relative of a PKD patient.

Might the general level of understanding of what PKD patients are challenged with be increased?

I would think so.

And then what?

Ah. Now to the point. So the viewer now has a greater sensitivity to the challenges of a PKD patient who is in the viewer’s “influence.”

What would the PKD patient want the newly-sensitized person to do?

In many cases, the PKD patient “merely” wants to be accepted for whom he/she is…a human being who happens to have a genetic disease which puts some limitations on his/her activities. Oftentimes, this “acceptance” may need to be provided by the patient’s own family!

The patient may need his/her employer to be a bit flexible to allow him/her time or doctor’s appointments.

And the patient may need a trusted friend or even a “significant other” to deeply share the PKD Odyssey he/she is undergoing.

This last is very important. When I was symptomatic, there was no Facebook, no on-line communities. I was fortunate that my wife had the sensitivity I needed. Why did she have that sensitivity? Because she cared for her parents as they each died of cancer.

There may be PKD patients who have nobody to share the struggle.

The PKD Odyssey is tough under any circumstances.

It shouldn’t be done alone.

info@innergameofpkd.com is my e-mail.

I know the PKD Odyssey all too well.

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Continuing on the concept of a reality show depicting the struggles of PKD patients on their “PKD Odyssey,” I’d like to discuss what might happen if such a show actually was telecast.

If directed well, the viewer would certainly get caught up in the “human drama.” The obstacles, frustrations, victories, setbacks, failures, and triumphs.

Certainly, most of us have watched shows like “Mystery Diagnosis,” which follow individuals who have rare and difficult to diagnosis diseases, and their challenges to overcome their conditions.

When I watch such a show, I first experience curiosity for the disease in question. I then internally question myself, “I wonder what it’s like to experience such a disease.”

Next, I internally ask, “I wonder what it’s like for this person to experience his/her life with this disease?”

I then watch the development of the story as the patient goes through possibly years of seeking a correct diagnosis, and then, finally, getting a diagnosis!

Of course, the next phase is seeking a treatment that works, and the TV show usually chronicles a series of treatments that aren’t totally successful, until one is found that seems to provide hope for the patient, ans we’re left with the impression that the patient will, to a greater or lesser degree, achieve a reasonable of health and live a decent, productive life.

My point is this: As a TV viewer of this, or of our theoretical “PKD Reality Show,” my curiosity, or concern, or empathy, does absolutely nothing for the individual featured in the program!

Even if 100,000,000 people watched such a program, the patient is totally unaffected!

The show was recorded way before it is aired. Therefore, the patient can’t possibly benefit from the supportive emotions of the viewers!

So, the effect of the program is: 1) Entertainment for the viewer, and 2) possible intellectual awareness of the disease in question.

For Polycystic Kidney Disease patients, while intellectual awareness is a necessary first step, it is clearly not sufficient!

What, in my opinion, is needed, is not a “one-directional” reality TV show, but a “reality forum” where PKD patients and non-patients can interact, not just intellectually, but emotionally, so to speak, by sharing their stories, (and, at the risk of insulting some message board and Facebook posters, I’m not talking about the whiny stories that some patients write describing how terrible their situation is. Everybody’s PKD situation is bad…at least for a while!)

I’m talking about sharing day-to-day challenges encountered on the PKD Odyssey. Challenges with symptoms, the medical community, employers, family, friends, relatives, insurance companies, transportation to dialysis centers in blizzards.

That’s the TRUE Reality show out there!

Do you think Mr. Mark Burnett would produce this kind of program?

I wonder if insurance companies, reluctant employers, ex-spouses, and fair-weather friends would get involved with a program like that!

Stay Real, My Friends!!!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The Reality Show.

I remember the first of the current genre: “Road Rules.” Remember that one? Quite innocent by today’s standards!

Mark Burnett. The dean of the Reality Show.

He started with the unbelievably exciting outdoor adventure race, “Eco-challenge.” A truly outstanding program showing outdoor adventurers in an amazing demonstration of skills, endurance and courage.

Mr. Burnett then went to “Survivor,” depicting some of the worst characteristics of human beings. I do not watch this program.

Now, consider a proposed Reality TV series: “The PKD Odyssey.”

Yep. I’m sure you can see where this is going.

A series showing PKD patients going through the trials and tribulations of actually living with PKD.

Episodes would include: The initial diagnosis, where an individual is diagnosed with PKD and the parent’s worst fears are realized.

The anxiety of a young person who is trying to figure out a way of telling his/her “special friend” that he/she has PKD.

A young man whose “macho image” puts him into a form of denial that he needs to start taking medication, and that he might have to modify his diet.

A young parent, just diagnosed, who is worried that her children may have inherited the disease.

A young couple who gave birth to a child with ARPKD, and, at a few months old, needs dialysis.

A man in his 40′s, who is experiencing hematuria (I wonder how graphic Mr. Burnett might make that!),

A worker who suddenly suffers severe muscle cramps while on the job.

A driver who is fighting fatigue while on the road.

A mother who is facing the decision of what mode of dialysis to go on.

An up-and-coming executive who needs dialysis, opts for hemo, but then has difficulty with his fistula.

A middle-age woman who is constantly battling nausea, and is having difficulty eating.

A patient who had a friend who wanted to be an organ donor, only to find that the would-be donor’s kidney was not healthy enough.

Do you think such episodes, if actually produced and shown to the public would put a “human face” to the term “PKD?”

Do you think it would be a popular show?

What do you think?

Let’s make “PKD” more than a three-letter trade-mark for a disease.

Let’s show the world that “PKD” is a living, courageous way of life for many people!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming