Too many times I read that “I’m not getting much support from my family and this Facebook group is the only place where I feel I’m supported.”

Wow!

What “a fine kettle of fish” this is!

For those of you who may fall into this category, I am so sorry.

I could say, “It ‘shouldn’t’ be this way!”, but I won’t, because whether it should or it shouldn’t be this way…it is!

The problem, if you feel that not having family support is a problem, is yours!

It is up to you to ask your family for support! (And by family, I also mean “close” friends who seem to be “fair weather” friends!)

Now, the first thing to determine is, what do you mean by “support?”

What is it that you want family members and friends to actually do?  Or not do?

Once you’ve answered that, then ask yourself, “Why?” Why do I want these people to do these things?

You might as well do this exercise, because once you request your family to do or not do what you’d like them to do, they will ask “Why?”

People cannot read your mind!

After figuring all this out, and it may take some time, consider writing out your requests along with the reasoning on a document, and present it, either personally, (after politely asking for their time), or indirectly, as by email, text, phone call, etc.

When your family members see a serious document presenting your requests with reasons, you might be taken more seriously.

You could also include in your document PKD related material from the web, or brochures from drug companies that you may find in doctors’ offices.

I think you’re getting the picture.

To make a “presentation” on what being a PKD patient is all about, what your needs are, and how you would like your family to support you.

Is there a guarantee?

Of course not.

But if you take your status as a PKD patient seriously, and present yourself in a “professional” manner, the chances that your family will take you seriously will greatly increase!

If you need assistance, don’t hesitate to contact me at

info@innergameofpkd.com

and we can set up an appointment to see if Coaching can help you get the family support any and every PKD patients needs!

Peace and Blessings!

Coach Richie Perl

We don’t get our “satisfactions” immediately, if at all.

Except for the obvious case of needing relief from pain, getting what we want takes time.

We want health.

Some fortunate souls are blessed with good health without seeming to do anything to achieve it.

Others are born with all sorts of problems. I include ARPKD in this category. And these days, there seems to be more in this category, like autism and ADHD.

OK.

What has that got to do with ADPKD patients?

Acceptance.

When you look at life from the 50,000 foot view, the problems that a given individual has doesn’t look so special.

I’m sure there are many individuals with whom you would like to trade places, but there are probably more with whom you would NOT wish to trade places!

On a Facebook post, I suggested that PKDers think of the diseases they DON’T have!

At a doctor’s office, are you the only patient in the waiting room? Do you fantasize the other patients’ problems? I do!

Doctors’ offices are busy for a reason!

A heck of a lot of people need medical treatment!

Now, I’m not minimizing YOUR situation. Obviously, you are the only one experiencing your discomfort.

What I’m suggesting is this when you realize and accept that you are not unique in needing medical care, and that the human body is far from perfect, you begin to take on the attitude that physical “imperfection” is the norm rather than the exception.

This realization helps lessen the sense of being “different,” or “defective.”

I sometimes get a devilish satisfaction when someone in my age bracket, who, after enjoying good health for most of his/her life, suffers some medical problem, and all of a sudden feel overwhelmed at dealing with the medical system.

“Aha! Now you know what people with health issues have been dealing with all their lives!”

Well, I’m not wishing ill on anyone, but illness happens whether I wish it upon them or not!

My PKD friends, you have enough to deal with without feeling sorry for yourselves!

Our dealings with our disease is to be looked at as a badge of courage!

“Damn it, this is tough! Carrying this burden 24/7 is often too much to bear! I wish I can ‘lay this burden down!’”

That’s the courage I’m talking about!

Look at life from 50,000 feet! Look at the suffering in the world!

Yes! From the hospitals and nursing homes to the starvation around the world and to the “unrest” in the Middle East, life on this beloved Earth is not heaven!

So, even as we deal with our own situation, here “on the ground,” remember what life looks like from 50,000 ft.

Perhaps your perspective might change!

Peace and Blessings!

Coach Richie Perl

I decided to resume blogging after about a 10 month hiatus!

The question in the title, “What would you say?” is the question I am asking to those many PKD patients who indicated in the various message boards that they have no one to talk to about their disease.

Let’s say you are diagnosed with PKD and your “circle of people,” family, friends, relatives, don’t seem to be inclined to take the time to sit down with you and listen to you talk about what you’re experiencing on your “PKD Odyssey.”

I would guess that a) you would feel hurt that your “people” don’t care enough about you to even be curious as to what having PKD is like for you, and b) you would feel frustrated that you don’t have the opportunity to express your feelings about having PKD.

Obviously, this is not a healthy state of affairs.

We all know what it’s like to “vent.” It feels good! We “need” to vent! Too much of life “sucks,” and the internal pressure of frustration needs to be released!

OK. So if you don’t have a trusted “ear” to listen to you, let’s pretend you do.

What would you say to a trusted friend about how you’re experiencing PKD?

Would you express your sense of being “defective?”

Would you complain about pain and fatigue?

What about the feeling that you might not have the future you were hoping for?

Perhaps you’d be worried about your relationships, or lack thereof.

And you would include complaining about the health care system!

In other words, you would have a whole lotta “stuff” to express!

And then…

How would you want your pretend friend to respond?

I’m sure you wouldn’t want to hear, “You think you got problems? Let me tell you about my [boss, spouse, child, back, sinus, in-law, etc.]”

No.

You want empathy. You want to feel understood, listened to, that you have received the concern that you feel you require from your friend.

It doesn’t sound like that’s too much to ask from a friend or family member.

But clearly, too many PKD patients aren’t getting it.

Perhaps you can get that empathy and understanding here.

I’ve been there.

Please let me know what you would like to express about your experiences on your PKD Odyssey that you haven’t been able to express to others.

info@innergameofpkd.com is my e-mail. It’s “password-protected.” No one else can read it except me.

Hey, it may feel good!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

I’m wondering about what to blog about today.

To be quite honest, I’ve written 122 blog posts concerning the Inner Game Of PKD, and how to attain a higher quality of life while on the PKD Odyssey.

122 blog posts seems a reasonable number.

On many of these posts, I  have invited the readers to contact me to discuss any aspects of the posts I have written.

While I have had a number of fine, heart-felt responses, only one person actually showed some curiosity of how Life Coaching might provide benefits.

One person in well over a year.

OK. I may not be the best blog writer in the world, but in all honesty, I thought I touched upon some real issues concerning living with PKD that the medical profession usually don’t address.

Have I missed the mark?

Have all these posts merely been a writing exercise for me?

I guess what I’m asking is,

What do I have to do to encourage you to be curious as to how Life Coaching can benefit you?

Since everyone is different, I can’t really give a generic answer, other than those I have shared on these blog posts.

It would be a real shame if someone could be helped by working with me, but was too reluctant to find out, wouldn’t it?

Maybe you are having some issues of life that are holding you back from enjoying a full, high-quality life.

What is the advantage of holding the suffering in, when there might be a possible solution that will release you from thoughts and beliefs that are holding you back?

You never know how a simple, but deep conversation may change your whole perspective on your situation.

How many times have you had a conversation with a friend, and in the course of the conversation, you saw a certain situation in a whole new light?

Do you remember how much your perception broadened?

I offer that kind of conversation on the subject of your individual experience of living with PKD.

I don’t know of too many people who are willing to listen to how you actually experience living with PKD, and can work with you to see your experience in that new light.

Yes. I am a professional Coach.

I do charge a fee.

But I first offer a complimentary, no-obligation telephone “Getting-to-know-you” conversation to determine if we are an “energy match.”

If nothing else, you’ll be talking to a fellow traveler on the PKD Odyssey, and so will I!

So, once again, I invite you to contact me at:

info@innergameofpkd.com

and set up an appointment for our complimentary telephone conversation.

It be interesting, enlightening, and perhaps, a lot of fun as well!

Hope to hear from you soon!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

It’s Henry Ford’s famous quote,

If you think you can, or you think you can’t, you’re right!”

Many of you have “believed” that you can overcome the limitations of PKD and experience a high quality of life, and you have!

And some of you go and do what you need to do with an attitude of “impending doom.”

There was a time when I walked around like that.

Not cool!

Now, again, I’m not saying that having an attitude of “positive expectation” will, in and of itself, guarantee all favorable outcomes.

The negative aspects of PKD are many and they are potentially life-threatening, despite what “they” say that PKD is not a “death sentence.”

We have all seen those stories of people with incredible “handicaps” overcome them and go on to amazing achievements. I don’t know about you, but what these people achieve put me to shame.

What do these people “believe,” and how do they apply their life-enhancing beliefs to their personal situations?

Quite honestly, I don’t know.

But I do know this: They don’t allow “negative beliefs” to take hold in their minds.

If you feel that your PKD will lead you to a life of suffering and limitation, well, according to Mr. Ford, you may be right!

But if you think that, in 2010, with the medical advance that we’re privileged to have access to (at least many of us. I know the health insurance situation is still an issue.), you can consciously develop the belief that you will live a full and high quality life.

Again, this doesn’t provide a guarantee.

But, come on. Who would people rather be around…Eeyore, the depressed donkey, or Goofy, who enthusiastically tries every sport?

And for heaven’s sake, if you are a parent of a child with PKD, don’t communicate your fears, consciously or unconsciously to your child. Precautions, yes. Fears, no.

If you sense that you are traveling the PKD Odyssey burdened not only with the physical aspects of the disease, but also with a sense of pessimism, please write to me at:

info@innergameofpkd.com .

There are mind games that can be played to help you change your negative beliefs to empowering ones.

Ans even if you’re “negative” about that, contact me anyway. What have you got to lose? Pessimism? I’d take that chance!

Believe it, or not!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

And we read these these accounts, we nod our heads in sad agreement. To a large extent, we all have a similar story to share.

And yes. There is shock, and fear, and sadness. Rightly so. A diagnosis of PKD is not a trivial event.

Now, as you have no doubt read, it’s not so much what happens to you that matters, as how you respond to what happens to you.

If you inherited the disease, the framework of how you respond to your PKD is largely determined by the experiences and responses of your parents.

If they experienced reasonably good outcomes, and were consistently optimistic, there’s a good chance you will respond in an optimistic way.

If, on the other hand, you witnessed real hardship, you will tend to tell yourself a story about your disease that may be on the pessimistic side.

Knowing that we humans have the capability of “talking ourselves” into almost anything, telling yourself a fearful, pessimistic story will only serve to strengthen negative, disempowering beliefs about the kind of life you will live with PKD.

The good news is that you have the power to develop a story of hope, optimism, and courage, picturing positive outcomes for your life.

Seek out people with PKD who have positive “stories” to tell. People who have found the “positive attitude” to successfully cope with their limitations.

The stories we tell ourselves are actually that — stories. They are not totally based on facts. We can’t predict the future.

But, through your story, you can direct affect your attitude concerning your disease. An optimistic story leads to an optimistic attitude.

It doesn’t cost anything to tell yourself a positive story.

So why not sit down and write a story of how you will cope and adapt to the ups and downs of your PKD Odyssey.

And keep “talking yourself” into optimism and hope!

After all, it can’t hurt!

So, what’s YOUR story?

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

It sucks.

You want “Mommy to kiss it and make it go away.”

You dread the life that you believe you may have to live.

You dread going on dialysis.

You fear being alone and not being understood as to possible limitations.

You know what?

You have every right to feel those fears and “dreads.”

So, now that you feel them, now what?

Are you going to “wallow” in those fears?

Are you going to have a lifelong “pity party?”

Well, you can. It’s not against the law.

But how helpful is it for you?

It isn’t.

You know “attitude is everything.”

You also know that a “negative” attitude can be transformed into a “positive” attitude.

Believing that you can overcome many of the limitations of PKD is the first step to doing so.

Don’t get me wrong: I’m not one of those people who will tell you to “just believe” and everything will come out fantastic for you.

Not in the least.

What I am saying is to give yourself the gift of time.

In that time, write down as precisely as you can your fears and dreads.

Let them “all hang out.” Everything you’re scared of. Even if some fears are not related to PKD at all.

A few days later, read back what you wrote as objectively as possible.

Perhaps, if you dare, you could share it with someone you trust and who is objective.

The objective is to determine which of your fears are “rational,” like, “I’m afraid that I might not be able to pursue the career I want.” which in fact MAY be the case for you, and which of your fears are “irrational,” like “I’m afraid I won’t be able to have loving relationships because of my disease.” which, based on many people’s experience, is hardly a realistic fear. (I have found that your ability to have loving relationships is not based on the fact of your PKD, but the nature of your overall personality.)

Once you have determined which fears are “real” and which are not, determine to overcome the fears which you no longer need!

I know that doesn’t sound like the easiest thing to do.

It isn’t.

But it’s very possible, by seeking evidence in your own life and other’s that these fears CAN be overcome.

Yes. Doing this will involve some emotional risk.

Like taking the initiative to reach out and ask for companionship by offering your own friendship. (A much easier task in this day of Facebook and message boards!)

But, life is about about taking chances. You won’t always win, but if you don’t take chances, you’ll always lose.

Yes. PKD sucks. But don’t make it worse than it actually is by “needless” fears.

If you need assistance in discerning “rational” fears from “irrational” fears, I invite you to contact me at:

info@innergameofpkd.com .

Don’t let false beliefs limit you!

Peace and Blessings!

Coach Richie Perl
Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Would you scream at your parent for “giving” you the disease (if you inherited it?)

Would you plead to your friends to understand that sometimes you’re too tired to do what they want to do, but you don’t want to lose their friendship?

Would you yell at your doctor who seems so distant and doesn’t acknowledge the inner (and outer) pain you’re experiencing?

Do you want to cry because your spouse loses patience with you because you’re unable to do the household tasks (or hold a job) because you’re too sick?

Do you sometimes feel that you want to hit somebody out of pure frustration???

For me, the answer is yes to all of the above!

Now, suppose you actually did all these things, and gave all those people ” a piece of your mind!”

I’m sure you can imagine the various responses and their consequences!

Probably not positive ones!

Because communication needs two parties: The sender and the receiver.

Even if you send your emotion-filled message, it only registers if the other party “receives” that message. And acknowledges to you that the message was received AND understood!

Suppose you were able to “deliver” your message of frustration in a form that is more “digestible” to your “receiver,” such that the message is more likely ro be received, acknowledged, understood, AND acted upon!

That’s what you want, isn’t it? You want something to change for the better!

What if you rehearsed want you want to say in the way that would be most likely to be listened to?

“Role-playing” is a great way of practicing what you want to say to a real person who acts like the person you want to talk to.

The feedback you receive from the person acting in the role of your desired listener will help you develop the words and tone of your message so that it will be as effective as possible.

So, write out your message, even if at first it might be, “You stupid jerk! Can’t you see I’m sick!”

Eventually, you will modify it to< “If you have a moment there’s something I’d like to speak with you about.”

I know. The first one sure feels better!

But it probably won’t get you what you want!

“Role-playing” is one of the many tools of Life Coaching.

Consider using it to help you with expressing yourself.

Keep the Conversation Going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

It is much easier to explain what we do than who we are. It takes quite some time for another person to know who each of us is.

On the other hand, it seems to be quite easy for us to pin labels on others.

He’s the “funny” one. She’s the “kind lady.” He’s the “jock.” And, lately, she’s the “dumb blonde(!)” (I’ve been labeled the “smart” one!)

As we get to be known by these labels, the impression is created that “all” we are is what our labels say we are.

Of course, this impression is false, and the consequences of relating to people based on their labels can be quite hurtful.

Yet, all too often, we have a hand in creating our own labels.

PKD patients are vulnerable to the tactic of labeling themselves “diseased.”

This isn’t always done consciously.

When I first was diagnosed with kidney disease at age 16, I didn’t deny it consciously, but walking around as a college freshman  taking diuretics, and hoping I could get through a class without the “urge,” and being vigilant for where the Men’s rooms were, well, it started to wear down some of my youthful “machismo.”

I had to face the fact: I had a disease, and I wasn’t quite like everyone else.

So, I labeled myself, “diseased.”

I took quite a while and inner struggle to accept who I was and to force myself to tap into the other aspects of my life that were quite normal!

I had to learn that I was not the only one that had an “inconvenient” aspect of life.

Some had academic difficulties. Some had difficult home situations. Some had financial problems. and on and on.

I learned to put my disease in a less prominent place in my self-evaluation. Over time, the label “diseased” just faded.

So, how do you “label” yourself? Does your “label” sell yourself short?

You are so much more than your “label!”

You may not be aware how your label might be limiting the way you experiencing your life!

Action step: Write out a self-description. Read it to someone you know and trust. Ask for feedback if what you wrote is how the other person experiences you.

A learning exercise if I do say so myself!

I wonder if you will really do this!

Who do I say I am?

A Child of God is very fortunate to have my faculties, and a kidney donated by my wife!

And, oh yeah — a Life Coach exploring the Inner Game of PKD!

Who do you say you are?

info@innergameofpkd.com .

Let’s communicate!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

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