We all know what  it’s like to start something new: Enthusiasm mixed with apprehension. The first day at a new school, or a new job, or in a new neighborhood. And, operating under the premise that “it’s only the first time once,” you find that the second day is a bit easier.  As you gradually get the “lay of the land,” you find that your “new” situation rather quickly becomes “old hat.”

Starting your “PKD Odyssey” is a bit different. You didn’t choose to go on this journey. Although you have a lot of apprehension, you don’t have any enthusiasm. In other words, you’re experience the negative force of fear, without the positive force of enthusiasm.

Your “PKD Odyssey” is tough to travel on as it is. Without some form of positive force acting upon you, you can easily succumb to discouragement, and even depression.

Now, I’m not going to give you some “magic formula” that will transform you into a happy-go-lucky person, smiling your way along the Odyssey of pain, illness, possible surgeries and dialysis. I don’t believe such a “magic formula” exists.

What I will discuss is the word “courage.” It comes from the French word for “heart.” My dictionary defines “courage” as “the mental or moral strength to venture, persevere, and withstand danger, fear, or difficulty.”

What do you think of that definition? Technically, it’s correct. But it seems to be missing what the word is all about: Heart!

“Heart” is what the Inner Game of PKD is all about. As a Life Coach and Trainer of NLP, I can show you all sorts of “mind games” that can be played to change attitudes about difficult situations. But if your heart isn’t in it, the results won’t be lasting.

So. how do you put “heart” in your journey? This is one of those answers that are “simple, but not easy.”

Love yourself. Treat yourself as you would a little child with PKD. Reassure yourself. Associate with “positive people.” (I know this may be difficult for some people.) Learn from people who are ahead of you the Odyssey.

Also, be very wary of the message forums. Many of the people who post on them are the ones with problems. This is not a criticism. They are seeking support in the best places. What I’m suggesting is that the people who are most successful on the Odyssey have no need to post on these message boards. My sister, who had her transplant donated by her husband never goes on the these boards.

Feed your heart! In whatever time in your day you have for yourself (!?), do what satisfies your inmost Self! Create! Express yourself (positively!) Don’t allow your disease to totally take over who you really are!

Be your own Best Friend Forever!

Maybe I can be your second best friend forever!

Peace and Blessings!

Coach Richie Perl

Having PKD, or any disease for that matter, puts a label on your identity:  “I am diseased.”

This is not a label that one grows wishing he/she has.

Nevertheless, fact is fact: You ARE diseased! Your kidneys are not built correctly.

OK. Now what?

Wait a minute. Maybe you’re not saying OK. Maybe you don’t accept the fact that there is a good chance that eventually you won’t have what most people would consider a “normal” life. Maybe you even deny the diagnosis. Maybe you think that “Mommy will kiss it and make it go away.”

So you go about your business as if nothing is out of the ordinary. This is fine. There is no crime being committed here.

The question is: In not accepting your disease, what are you NOT doing that might improve your quality of life in the possibly not too distant future?

Are you doing what is necessary to keep your blood pressure in the acceptable range?

Are you maintaining a kidney-friendly diet?

Are you educating yourself about PKD and what possible symptoms may arise and what treatment options are available to you?

Are you preparing your family for future possibilities?

Are you preparing yourself for future possibilities?

Good old-fashioned fear may be stopping you from facing what may lie ahead. This is understandable. But not helpful.

It’s one thing to have PKD and b..ch and complain. Or sulk and get depressed. Or ignore it all and go on as if nothing is wrong. These are the easy courses of action to take. But you know that these won’t get you any healthier.

YOU ARE DISEASED! Be as proactive as you can to master your situation as much as possible!

Educate yourself. Talk to other PKD patients. Go on the message boards. Read up on the literature. Learn the state-of-the-art of PKD research.

Become knowledgeable about your disease so that you can ask better queations to  your medical team. When you ask meaningful questions, you will be more respected as a patient. And this is very important. You don’t want to be treated as a number!

Whether you like it or not, you are on a lifetime “PKD Odyssey!” Make it a lifetime adventure so that your Odyssey will be as problem-free as possible!

Now, I understand that you may feel overwhelmed at the prospect of having a less-than-perfect life.  You may have inherited the disease fro a parent who did not have the best quality of life. Just remember, you are not your parent, and your are living in 2009, not 10, 20, or 30 years ago!

Many, many people are living perfectly fine lives with PKD, being treated with dialysis, or kidney transplant. And, many people never even reach the stage where such treatment is necessary!

but if you still have a sense of overwhelm and difficulty fully facing up to your disease, please consider contacting me at

info@innergameofpkd.com

and arrange for a complimentary coaching conversation which may change your attitude to one of optimism and positive expectation. In this conversation, you will welcomed, accepted, supported, and encouraged on your PKD Odyssey!

You’re on a lifetime journey. You might as well make it as pleasant as possible!

Peace and Blessings!

Coach Richie Perl

It is well understood that one of the many challenges facing the Polycystic Kidney Disease community is raising public awareness about our disease. It seems that almost every other disease is recognized by the general public except ours.

It is my humble opinion that in this age of Twitter, Facebook, LinkedIn amd YouTube, raising awareness about PKD shouldn’t be as much of a challenge as some make it out to be.

However, I wish to discuss another kind of awareness. This is the awareness that many PKD patients can develop for themselves.

First, there is the awareness of the state of the art of medical technology in the care and treatment of the symptoms of PKD. At-home and overnight hemodialysis protocols have developed to the point that survival rates match those with kidney transplants. Medications following transplants have evolved over the years to offer more options to deal with any post-transplant issues.

Second, there is the awareness of the Social Media communities that offer support and practical, non-medical advice, along with virtual “hand-holding” for patients going through “trying” times. In taking part in these virtual communities, a patient feels a part of a community, rather than apart from society. Imagine what life must have been for PKD patients 15 and more years ago, before the internet brought people together in this virtual way. The sense of isolation must have been very difficult to deal with, above and beyond the disease itself.

Third, PKD patients can become active in local chapters of the PKD Foundation. In these chapters, PKD patients are welcomed, accepted, and understood. A patient doesn’t have explain him/herself in order to feel “at home.” Collectively speaking, we know what you are going through.

This feeling of acceptance is no small matter for many patients. All too often patients feel that they are not totally accepted nor understood by their community at large. Sometimes, there is a feeling of being rejected even by their own families!

To know that there are real flesh and blood people that are going through  and have gone through what you are going through is often an unbelievable boost your self-esteem!

For those patients who feel any sense of isolation, I highly recommend joining a local chapter of the PKD Foundation.

Check out www.pkdcure.org to look for your nearest chapter.

In other words, the awareness I’m talking about is the awareness of all the resources, medical and social, that can make your PKD Odyssey as bearable as possible.

And, if you feel you need someone to talk to one-to-one about any sense of isolation you may have, please, please contact me at

info@innergameofpkd.com

for a complimentary coaching conversation on how you can feel a full part of society.

Until next time,

Be Aware!

Peace and Blessings!

Coach Richie Perl

The first person that I ever spoke to about living with PKD was in 1987, after I had ruptured a cyst. This was a gentleman whose name was given to me by Dan Larson , head of the PKD Foundation. I spoke to this gentleman on the phone. Unfortunately, I do not remember his name. But what he told me about his life with PKD was EXTREMELY encouraging. He told me that he was on hemodialysis, worked, and played softball regularly. He said, “You can have a full life with PKD!”

It was very fortunate that my first conversation with a PKD was a positive one. It definitely was a major ingredient in the development of my attitude towards my disease.

Basically, I was told that I still had much to live for and much to look forward to.

I know that younger folks with PKD worry about their future. And this is good. Indifference is usually not helpful. However, “worry” is often wishing that a bad thing won’t happen. And whatever you focus on tends to expand.

Many of us tend to fill our minds with “what if…what if…” and conjure all sorts of negative scenarios. Why this is, I’m not 100% sure.

But suppose the mind was filled with “I wonder what would happen if I…” wrote a letter, made a telephone call, initiated a contact, asked a “deep” question of an acquaintance.

The suggestion is to develop a positive “Big Why” for your life. Give yourself a mission, a purpose!

If some avenues of life appear closed to you, seek one that is open to you! Dwell on what you can do, don’t waste psychic energy bemoaning what you can’t do!

I was told of a man who wrote a book while on hemodialysis. He utilized his time productively.

Again, for younger people “worrying” about attracting a mate, remember that medical technology is improving daily. Keep up with the latest developments. Connect with other PKD patients through the internet. Join the various “message boards” and be encouraged by those who have travelled the PKD Odyssey ahead of you.

Developing an attitude of  “positive expectancy” as you go your Odyssey will help you keep your eyes open for life opportunities that put a “charge” into your life.

True, there are days when you don’t feel “positively expectant.”  This is understood. But I think you’ll agree that having a “Big Why” will help prevent your mood to get too far down.

Let’s connect! Perhaps I can assist you in developing your “Big Why!”

Please contact me at

info@innergameofpkd.com

to set up a complimentary coaching conversation on developing your “Big Why!”

Why Not?

Peace and Blessings!

Coach Richie Perl

I will not waste your time. Having PKD is not something you wish upon a star for.

We ALL want a cure.

Down deep, what we want is for “Mommy to kiss it and make it go away.”

Since that’s not going to happen, what would be your second wish?

What one thing would you change (among many, but if there was just one thing) about having PKD if you could?

In other words, what is the biggest dissatisfaction of walking around with PKD?

For me, the biggest dissatisfaction changed over the years. Looking back, the thing that enters my mind as I write this were the painful bone bruises I suffered. That’s the one thing I had the most difficulty dealing with. The pain of standing and walking added to an already tough burden of fatigue and weakness. Especially standing on the New York City subways. I can almost feel the pain now. Not fun.

Somehow, I was able to deal with the hematuria, the ache, the fatigue, and the 24/7burden of walking around with PKD.

My wife was VERY understanding. My Mom, who didn’t know what happened to my father, and later learned about PKD, understood the best she could.

And since I didn’t try to deny or minimize what I was dealing with, my friends and co-workers accepted my situation for what it was.

How about you? What is your biggest dissatisfaction with life as a PKD patient? Physical symptoms? Emotional frustration at being able to do what you want to do because of weakness or dietary restrictions?

Do you feel that your medical team is not as responsive as you would like them to be?

Do you feel misunderstood, or even un-understood by people from whom you need support?

Do you sometimes want to cry, or punch somebody? I did! (Want to that is! Although I did often notice tears of pain from the bone bruises while standing on the subway!)

I invite to comment on what is your biggest dissatisfaction as a PKD patient.

Please take this opportunity to post your comments, if you feel more comfortable in communicating privately, please address your comments to:

info@innergameofpkd.com .

Who knows? I may actually be able to make a suggestion that can make life a bit easier for you!

At least you can’t say that nobody listens to you!

Peace and Blessings!

Coach Richie Perl

Participating in several “message boards” relating to kidney disease, and specifically PKD, one thing stands out because of its absence: The limited number of male participants.

Now, even considering gender-based generalities, that women may have more time to spend on-line, the ratio of female-to-male message board entries is extremely high.

Now, being a male-type person, I know that the “Macho Man” is rarely prepared to announce his weakness on the “World Wide Web!” Horrors!

I understand perfectly.

Men’s survival instinct requires them to put forth a strong image to the world. And this is good. This seems to be how Nature designed it.

Yet, under certain conditions, mankind has learned to set aside some of those survival instincts in order to gain co-operation for the greater good.

Not every male is constituted to be the Alpha-male and lead the pack. Some MUST be followers. All Chiefs and no Indians don’t result in getting too many things done.

I was not thrilled to be diagnosed with PKD at the age of 22. I didn’t know what that would mean in my search for mate. Fortunately, serious symptoms didn’t occur for me until my mid-30’s. And that’s a story for another time.

My father died of PKD in 1968 and NOBODY knew he had it (maybe not even himself, I’ll never know)! Maybe he didn’t want to “burden” the family. THis was not helpful. It would have been nice to know.

The inner emotional pressure of walking around with an incurable disease is very large. It must be released. In fact, it will be released, one way or another.

Just like adolescents under the pressure of meeting externally-imposed expectations, the pressure of having PKD will either be released constructively, or destructively.

Lashing out at loved ones, or co-workers at the slightest provocation, or its opposite, being non-responsive, are not helpful in the long run. This leads to pushing away the very people who are needed for literal support.

Ingesting substances that are not the healthiest for one’s health is also  self-destructive. And when that burden of PKD gets a bit too much to bear, this is all too often a “convenient” release of the pressure.

So what are some constructive ways of release the pressure of walking around with PKD?

Expressing your feelings! Yeah, yeah, guys. I know what you’re thinking. “What you mean, my feelings? I got this d..n disease and I’m stuck with it. What does expressing my “feelings” got to do with that?”

This is the correct question to ask!

Remember how you expressed yourself when you lost that “wager” when the place-kicker missed the field goal and you didn’t make the spread? I KNOW you expressed yourself VERY well!!

Look, guys. Find someone you can talk to. A clergy-person. A fellow PKD patient. Someone who knows how to listen. Someone who TOTALLY understands!

Being a Life Coach, I am trained to listen and to help you constructively release that pressure by helping you use the energy of frustration in ways that helpful to yourself and your family.

It really might be worth a try.

You can contact me at :

info@innergameofpkd.com

to schedule a complimentary coaching conversation.

In the meantime, take a look at these message boards:

http://www.dailystrength.org/c/Polycystic-Kidney-Disease-PKD/support-group

www.hopesquare.org

and for general kidney disease issues,

http://www.kidneyspace.com .

You can always comment on my blog here.

But whatever you do, express yourself…constructively!

It feels sooo good to release!

Peace and Blessings!

Coach Richie Perl

At first glance, it may seem a bit odd to put together two such apparently diverse phenomena as Polycystic Kidney Disease and meditation. And you’re right. It is odd.

The connecting concept is how we experience life, and for PKD patients, our disease.

Aside from the physical experience of the disease, there is what is known as the “meta” experience of the disease.

Let me explain. In Neuro-Linguistic Programming, the concept of “going meta” is to look at not only the direct experience of something, but also what you experience ABOUT the initial experience.

Example: Two people of similar age and social standing get the news that their kidneys are failing and that they need to decide which method of dialysis they will undergo. Obviously, this is hard news to absorb, no matter how long you’ve known it was coming. One person,  A, even after a day or two to digest the information, goes into a fairly serious depression. The other person, B, again after a few days, takes a deep breath, and thinks, “OK, this is what is for me to do, so let’s do it!”

Same news, different response. Why? Both receive the news hard. Who wouldn’t? But what the first person thinks ABOUT the news is very different from what the other person thinks ABOUT the news.

A is using his mind to compare his present state of health to what it was, what it should be, what he wants it to be, and generally over-thinking ABOUT his situation.

B, on the other hand, thinks ABOUT his present state basically as “It is what it is,” and, if not totally ready, (I doubt anyone is ever ready for dialysis) at least is willing to take the next steps without letting his mind go crazy with the “shoulda coulda wouldas.”

My personal with meditation (I have experienced several methods) has helped calm my mind so as to largely slow down the “meta” experience whenever I receive less than positive news.

There are times when our “gut level, fight-or-flight response” serves us well. And that is good. But there are times when we have to “override” and initial reactions and calmly (as possible) RESPOND to situations which aren’t all that pleasant.

For this reason, I really suggest that, if you haven’t tried it, to quickly learn some form of meditation and give a good try for several months. Chances are, you will better to be able to control the “reactive”nature of your mind, and make better responses.

OM! Namaste!

Coach Richie Perl

When you think about your disease, what thoughts come into your mind? If you’re like me, the thoughts that come up aren’t particularly pleasant ones.  Oftentimes. I alternate between thinking, “God, I wish I could get rid of this burden!” to “What crap am I facing next?”

Well, I do have those thoughts, but when they come, as soon as I am aware that I am thinking these thoughts, I catch myself and think,”Whoa, Richie. What’s a better thought?

And here is where I begin to mentally talk to myself. I usuually begin with gratitude: “Hey, you’ve doing more  than OK for over 11 years with the transplant. You’ve been quite stable with your numbers. Just relax and look at the good things in your life. Let’s face it, you have it better than a lot of people.”

And that gets me back “on track.”

Now, granted, your situation may be a bit tougher. I’m not suggesting that you can “self-talk” your way out of a serious medical situation.

Yet, you know that having as good an attitude as you can towards your situation is indispensable. So, how can you “self-talk” your way onto a “better” attitude?

Become curious. Allow your mind to be like a little child who wants to know everything!

“Hmm. I’m feeling a bit more sluggish than usual. I wonder what is causing this and what it might indicate.”

“Hey, you know? I’m feeling a little less pain in my back than I did yesterday. I wonder how that happened.”

These kinds of questions shifts your mind, and consequently your attitude, from being a passive “recipient” of “troublesome” information to an active mental “seeker of truth.”

Developing an attitude of curiosity adds to the sense of “adventure” to your “PKD Odyssey.”

I remember my first hemodialysis treatment. I knew that this was what there was for me to do. So, when I went, (alone, mind you, by choice,) I went with an attitude similar to my first day of high school. A bit fearful, but very curious. I had NO resistance to the experience I was about o have. Why? a) I had no choice. b) I knew many, many other people go through it OK. I was going to be of those who will do well on henodialysis. As it happened, I was only on hemodialysis for 5 months. But I did quite well. I was able to manage my fluid intake quite well, because I was curious to see how close to a liter I could come every day. It was a little challenge for myself.

Hey! It helped!

So be curious about your situation, and “self-talk” yourself into a more positive attitude!

Peace and Blessings!

CoachRichie

Neuro-Linguistic Programming Technique

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Pacing and Leading

As we go through the adventure of life, most people encounter some form of ill-health. As youngsters we get some of the childhood diseases that quickly spread through the schools. So we know what it’s like to be sick.

What isn’t often direct taught is how to be a friend and to offer support to one who is sick. It often seems that the sick person him/herself often doesn’t know what would be helpful (aside from physical assistance, like running errands or doing light chores).

People with Polycystic Kidney Disease (and other diseases) need to feel accepted as full human beings who happen to have a disease. It’s difficult enough for a PKD to accept him/herself, especially when newly diagnosed.

The PKD patient is often in a position to help friends and family learn how to accept them!

When you, the patient, are approached by a friend who is concerned about you, the friend may not know what to say beyond “How are you?” and “What are the doctors doing?” After the “factual” information is communicated, the patient is hoping that the friend will remain a friend as the disease progresses. Therefore, the patient will not usually reveal too much more about his/her subjective experience of having the disease. It may sound too much like whining, which no friend take tolerate for too long!

So, how does the patient express his/her situation in such a way that the friend can still accept him/her as a friend, and not feel pity for the patient?

Initially, have some printed material about PKD. Either a brochure from a pharmaceutical company, or from a reputable website. This will explain the disease to your friend from a neutral source.

If the patients senses that the friend is unsure of what to say next, the patient may continue the conversation with, “You know, friend, although I’m certainly not happy having this disease, I’m optimistic that I’ll have a good outcome!”

This is known in Neuro-Linguistic Programing as “Pacing ” and”Leading”.

Pacing in the sense of figuratively walking next to a friend at the same pace Staying right WITH the friend.

Here, the patient paced the “insecure” friend who might not know what to say, and is in a state of slight confusion by saying “Even though I’m certainly not happy having this disease…” This communicates to the friend that this is indeed not a happy situation. It gives “permission” to the friend to be empathetic with the patient. The friend now knows that the subject matter is serious.

Now the patient doesn’t want to leave the impression of “doom and gloom” on the friend, so he/she follows up with “…I’m optimistic that I’ll have a good outcome!”

The patient now has “led” the friend to a more positive “state’ by expressing his/her optimism. The friend has learned the “facts” of PKD, the idea that it is a serious condition, and at the same time doesn’t associate the feeling of “doom and gloom” with the patient, but rather the friend understands that the patient is upbeat, a person with whom the friend still want to associate.

As a PKD patient, you certainly don’t want to “push people away.”  And as you educate yourself about your disease, you get to gradually, where appropriate, educate the people in your circle about your disease, and the adventure you’re having in dealing with it.

Who knows, you may even increase your popularity! I’m sure you have noticed how blogs there are written by people with PKD!!!!

Peace and Blessings!

Coach Richie Perl