I’ve been active on several kidney disease related message boards for nearly two years now. In that time, I have yet to discover what, as a group, PKD patients mean by “support.”

Now, yes, of course I understand that people want to feel understood, accepted, and a part of society in as “normal” a way as possible, and for many individuals their disease kind of “gets in the way.”

I also understand when individuals seek some level of reassurance through “social proof” for their symptoms, treatments, and feelings.

When I was going through symptoms, treatments, and feelings, the Internet wasn’t nearly as developed as it is today, so I didn’t have the benefit of message boards and the like. My “support” came from seeking out stories, both positive and negative, of people’s experience with PKD. I took the positive stories to heart, while keeping the negative stories on the “back-burner,” so that my attitude did not consist of only seeing my PKD Odyssey through rose-colored glasses.

But this is 2009. There are message boards, chats, blogs, Facebook, Twitter, etc. All these vehicles allow for “private” messages that can be utilized to increase the level of “connection” between any two people.

I myself have a “buddy” that I met via a teleclass we were taking. We started connecting, and for nearly two years we have had weekly telephone calls ostensibly about coaching and marketing, but it has also developed into quite a friendship.

I have a number of Facebook and HopeSquare “friends” with PKD. I can’t easily tell who would be interested in pairing up as “buddies.” (A large majority of my “friends” are female! )

On Facebook, I believe the list of my “friends” are public. The challenge is to determine who would be open to be “buddies.” There are possibilities that can be explored.

I’m on Facebook under “Richie Perl.”

http://www.facebook.com/richie.perl

The “caveat” of course that having “buddies” calling each other doesn’t necessarily guarantee “support!”

Most of you know that “support” can become a “mutual whining society!” So, depending on “buddies” for support may not produce the desired results. But, then again, it might.

If you have any ideas on how to implement a procedure by which PKD patients can seek and locate other PKD patients for the purposes of becoming “buddies,” I’d be happy to do what I can to help the process.

As of now, my suggestion is to join the various PKD groups on Facebook, check out the members of these groups and message then to first become Facebook friends, and then, if the comfort level is there, to exchange phone numbers.

Comments are most welcome!

Peace and Blessings! (to my “Buddies!”)

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro_Linguistic Programming

Yesterday I participated in the Greater New York City area Tri-State PKD Walk. I volunteered to “man” the PKD Mission tent.

The display of support for those of us with the disease always provides the strong reminder that, even though we talk about “the disease,” the discussion is really about human beings, and the experience of the highs and lows of the PKD Odyssey, not only for the patients, but for the people who love them.

Young people who are apprehensive about their futures. Parents who wonder whether their children should be tested to see if they have PKD. Older folks who are grateful that they have overcome the disease. (Like me, so far!) Organ donors whose sacrifice might not have produced a totally desired outcome.

The medical professionals who do their best to provide for the human needs of their patients, above and beyond the dedication they have for the medical needs of their patients.

We, in the PKD community, all have our parts in this ongoing human drama. The young person who asks a question about the disease is as needed in the community as much as the nephrologist. The people who set up the informational websites and those who manage the on-line message boards are also part of the community.

No one can travel the PKD Odyssey alone. And we don’t. The challenge is to utilize the means of communication, on-line and otherwise, to develop a full community so that we can support each other on our respective PKD Odysseys.

Too many people still don’t totally accept their disease. It’s understandable. Nobody wants to “stand out” in a negative way. But if such a person were aware of the amazing strength that the PKD community possesses, the fear would diminish, and the association with those who have traveled a while on the Odyssey would definitely increase the self-esteem of those newly diagnosed.

I’m talking about things like having  PKD “buddies” that can connect by phone or, preferably, in person for support where having PKD is not a barrier to friendship. (It takes one to know one!) It’s very helpful to have as much “human-to-human” contact, where one could trust another to understand the ups and downs of the Odyssey, and perhaps offer that knowing hand to hold as well as someone to celebrate the triumphs (without envy!)

I would love to know if this is an idea worth pursuing.

Please let me know what you think. You can leave a comment on the blog or e-mail me at:

info@innergameofpkd.com .

On-line forums are great, but nothing beats human-to-human communication!

Keep the conversation going!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

At church I heard a word that I haven’t heard in a long time: Fortitude.

The online dictionary defines fortitude as:

Strength of mind that enables a person to encounter danger or bear pain or adversity with courage.

Noticing that the word “courage” is part of the definition, it seems clear that what is needed to “bear pain or adversity” is a combination of a strong mind and a strong heart.

For Polycystic Kidney Disease patients, the quality of fortitude is absolutely necessary.

“OK, Richie,” you say. “But i’ve just been diagnosed, or I’m facing dialysis, or I have to make a decision about accepting a live donor’s kidney. I’m scared and I’m not ashamed to admit it! I’m not very full of fortitude right now!”

I understand! I recently wrote about my panic attack after initially being diagnosed with Kidney Disease at age 16.

Fortunately, time is part of the equation in PKD! For most of us, our disease develops slowly. We have a chance to digest and absorb our situations. We have time to learn about our disease and the “PKD Odyssey” that we’re on.

As we become more familiar about the “world” we’re in, the fear begins to dissipate.

As we connect with others on the PKD Odyssey, and realize that we’re not alone, we begin to develop that “fortitude” that will allow us to deal with what we have to deal.

It seems to me that connecting with others that are on the Odyssey, gives us a chance to “model” the positive characteristics of those who have develop enough fortitude to have overcome the challenges that were faced and are continuing to be faced.

I’ve corresponded with a number of individuals with PKD who seem to be somewhat isolated in terms of connecting with other patients who could provide examples of fortitude that these individuals could emulate.

In other words, the suggestion is that “it takes one to know one!”

If you sense that you, the PKD patient could use an injection of fortitude, I would like to invite you to contact me at:

info@innergameofpkd.com

to discover how to tap into your natural store of fortitude. Having your mind and heart aligned is a powerful “posture” to deal the challenges of PKD and its non-medical ramifications.

Much of life is about overcoming adversity. Think of people who have been unable to overcome some challenges in their lives. Isn’t better to meet the challenges with..fortitude?

I wish you sound mind, brave heart, and good cheer!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

It is easy for me to preach “optimism” when I have been operating with a kidney transplant for well over 11 years, with the barest minimum of difficulties. (Hernia repair, fistula repair.)

For those who are experiencing debilitating symptoms, and are having difficulty coping with the direct symptoms of PKD, the side effects of treatment, or the situation of NOT receiving the proper treatment, it is difficult, if not impossible to be optimistic.

I understand!

When, as a 16-year-old boy, with a very painful right kidney area, I found myself flat on my back on the cold, hard table of an X-ray machine, with the HUGE camera hanging above me, and having to wait while the IVP (intravenous pyelogram) dye was circulating through me, I had my first (and so far, only) panic attack.

The transition from being a (relatively) care-free teenager to a boy with a disease was very tough indeed! (Consider my 16-year-old male machismo!)

I didn’t know what hit me! I was scared, ignorant, wishing it would all go away!

It didn’t!

Instead, something else came! An ongoing transition from that scared, 16-year-old boy to an individual who developed coping skills that have served me from then until now.

Some of them are:

Internal Assessment — How am I right now? What specifically is not the way I believe it’s “supposed” to be? What is specifically OK?

Pause – To digest new information. Especially information received from a doctor. Usually, when being hit by a bunch of numbers, I learned to ask, “Doctor, what do these numbers mean to me as far as daily living?” or other, similar, appropriate question.

Compliance – Follow the doctor’s orders!

Perspective – Merely taking pills isn’t a major impact on my life! Likewise, being on dialysis is the price I have to pay to stay alive! OK, it’s a deal!

Trust – In myself! That I will do what I need to do to obtain and maintain the highest quality of life possible for me at any point in time. Trust in my doctors AND in my ability of asking the appropriate questions to ensure my understanding of my situation on my PKD Odyssey!

Faith – That after a decision is made, that it is the best decision under the circumstances, and that, along with my active participation, the result is the hands of God. And that includes the decision for my wife to donate a kidney to me, and my decision to accept it.

That 16-year-old boy is now a 61-year-old man. A bit worse for wear, but, all things considered, he hasn’t done too badly at all!

So, be optimistic! Each of us have amazing inner and outer resources available to us!

Utilizing these resources will ease your progress on your PKD Odyssey.

If you would like some assistance in uncovering and discovering your resources,

please contact me at:

info@innergameofpkd.com

and we’ll schedule an informal, yet informational chat about your inner resources, such as courage, curiosity, and…optimism!

Let’s make your PKD Odyssey as smooth as it can be!

I’d also love to know what you’ve learned so far on your Odyssey!

See ya down the road!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Joy. Fear. Sadness. Ecstasy. Anger. Satisfaction. Depression,Triumph.

Like Jim Valvano said, to have a good day, you’ve got to laugh, and you’ve got to cry!

Without emotions, we would be robots. Emotions, in and of themselves, are GOOD!

We like “positive” emotions, and, at least most of us, don’t like “negative” emotions.

However, we experience what we experience. Bad news usually triggers “negative” emotions. And, obviously, good news triggers “positive” emotions.

But since emotions have motion, we don’t have to hold on to them. Especially the “negative” ones!

As we experience, let’s say sadness, it’s natural to characterize the sadness we feel as, individually, “my sadness” and “I AM sad.” Of course, this phraseology increases the sense of “ownership” of the emotion. (if this was a “positive” emotion, like “joy,” this is desirable!)

For “negative” emotions, I have learned that by “de-personalizing” the way we characterize a “negative” emotion, it loses the “hold” it has on us.

When I get sad or angry, after I identify and acknowledge that I “am” sad or angry, I make a shift.

‘l think, “Hmmm. Wow. This (not “my”) anger has really got a hold of me. This anger may be justified, but it is not helpful.

And as I self-think this way, the anger is somehow less “attached” to me. As I continue to perceive the anger as something separate from me, my subjective of “anger” decreases!

In Neuro-Linguistic Programming, this is an aspect of what is known as dis-association. The idea is to “objectify” that which is normally perceived as part of one’s identity.

“My” anger becomes “this” anger. “My” problems become “these” problems.

Even talking to a doctor:  Changing “my” pain” to “this” pain in my back reduces any sense of “whining,” which, in my experience, doctors aren’t thrilled dealing with!

Consider the following:

“This is what we must do!”  and

“I am of the opinion that this course of action would be most beneficial.”

OK, OK. That’s a bit extreme, but I think you get my, er.. the point!

So dis-associate from “your” “negative” emotions! And look at them from a more objective viewpoint.

You might learn something about yourself. You might even amaze yourself!

That’s a great emotion!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

After participating in several on-line forums, and trying my “hand” at chat rooms, the following question occurred to me:

Would a teleconference call which would consist of a discussion of general and personal issues concerning PKD be something that would interest you?

There are many people on the PKD Odyssey, and in many different “places’ on the journey.

There are those who, at any given time, are in a position to offer assistance, and those who are in a position to accept assistance.

The benefit of a teleconference call is obvious – it’s in real time. Vocal expressions can be utilized to enhance the message which is being communicated. Clarifications as to the meaning of a communication can be made. More of the personality can come through. Sharing can be made on a deeper, more authentic level, leading to closer, interpersonal connections with people who are experiencing the Odyssey.

There will be no need to “explain yourself.” We would all be in the “same boat.”

Information, encouragement, and real help can be communicated in a real, human (not “virtual” or “sound bites”) manner.

The telephone has been around longer than the computer! Yet, as far as I know, the method of the teleconference call has not been used to connect PKD patients in a “live” community.

Maybe I’m just “old school,” but the “message board” method of communicating, though extremely valuable, seems to me to leave out a lot of the “human element.”

What did we do before e-mail?

We spoke on the telephone and wrote letters! I can’t remember the last time I actually wrote a personal letter to someone!

But I do recognize that expressing yourself to a willing listener can be very freeing. The power of speech should not be taken for granted.

How many of us wished we had more time to talk to our doctors about our concerns?

Wouldn’t talking to people who understand your situation be the next best thing?

I would really like to explore this concept.

I really would like your opinions.

Please offer your comments below, or at

info@innergameofpkd.com .

Maybe something GOOD can happen!

Keep the lines open!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Having Polycystic Kidney Disease, how do you characterize yourself?

Do you characterize yourself as someone who is a victim of circumstances about which you have no control?

Well, to some extent, that is in fact the case.

Now, accepting that, how are you responding to this?

Do you have a sense of “Wow! I have an incurable disease. I feel like a marked person. I’ll never be really healthy. Will I have any kind of life? Will I be able to have love in my life? How much pain will I experience? How long will I be able to work?”

These are all normal responses, and the questions are the proper ones to ask.

Now, in the “real world.” PKD patients are in all stages, with differing amounts and degrees of physical symptoms, different kinds and degrees of support, different access to high quality medical care, etc.

We’re all different.

Yet one major aspect that we can control is how we characterize ourselves.

Although we are told that PKD is not a “death sentence,” it is, so far, a “life sentence.”

Do you feel like you are soul imprisoned in a sick body?

Or do you feel that your “life sentence” is an opportunity to develop your self within the limits of your disease as you now experience it? With the added understanding that part of your adventure, or “Odyssey” may take you to place where some level of healing, physical, emotional, and spiritual can take place?

In other words, are you internally responding in a passive or active manner?

Do you consider yourself “merely” a patient, quietly “obeying” your doctor’s orders? Or an active participant in your own care, seeking information, asking questions, seeking support, educating people in your circle, living as much life s you can?

The way you “visualize” your own self, the way you describe yourself in relationship to your disease, has a major impact on your quality of life.

If you feel “intimidated” by your PKD, I believe that you don’t have to be. Yes. You must acknowledge your disease, but you can live a full life if you discipline yourself to respect the limits that your disease imposes on you (diet, medications, pain, time for dialysis, time for appointments, etc.) and work around those constraints.

Focus on what you CAN do. Not on what you CAN’T do.

And you can do a lot!

Don’t let a couple of diseased kidneys hold you back! A great Odyssey awaits you!

I hope to “see” you on the road!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

In my last post, I discussed the “inconveniences” that your Polycystic Kidney Disease may present to you. Inconveniences like a limited amount of time for having “good times.”

There are also major aspects of life that your PKD may keep you from. Like a job! Like a marriage! I’m sure many of you can relate!

It is a well-documented aspect of kidney disease that depression is a likely part of what must be dealt with on the PKD Odyssey. (Full disclosure: I take Zoloft.) So, on top of the physical aspects of PKD, there are the emotional aspects, which, if not dealt with, can add more to your burden.

The point here is that for life to be reasonably worthwhile, we need certain “satisfactions.” When a PKD patient is symptomatic, either directly from the disease, or from “side effects” of treatment, there is a good chance that the capability of the “pursuit of happiness” will be diminished.

You may not “feel up to” being with friends, doing pleasurable activities, and just being and expressing “who you really are.”

I’m sure that you can see that this limitation of activities is not helpful for one’s well-being, over and above the effects of the disease itself.

As usual, part of the way to deal with these “limitations” is to determine what is, and what is not in your control.

One thing to remember: You can’t control other people. If a friend or even a spouse “chooses” to withdraw, as painful as it is, ultimately there is nothing you can do about it. (You can may the other person feel guilty enough so that he/she will stay, but you probably wouldn’t want that to be the basis of any relationship.)

What IS in your control is your attitude. OK. Some of you will have a relatively minor effect from your PKD. Some will have a greater effect. But one thing everyone can do is: Ask for help! From your medical team, from your family, from your friends, from the people on the PKD message boards, even, believe it or not, from me!

Help may be discussing side effects from your treatment with your doctor. It may be asking family members to sit down with you to discuss the “new reality” concerning your disease and its ramifications. It may be to keep your friends up-to-date (in a casual manner, so they don’t feel like a captive audience to your “descriptions”). Or, it may be  to ask that good, supportive friend for a “few moments” of his/her time to “get something off my chest.”

You may not always get the help you request. Nobody ever does. Others have their own problems. But if you make your requests in a sincere, honest way, your chances of receiving the help you need will increase. Put yourself in the other person’s place. You wouldn’t want to keep hearing a friend “whining” about his/her situation.

If you need someone that will LISTEN to you, contact me. We can schedule a complimentary telephone conversation to determine what you might be able to do to have the highest quality of life possible for you.

I’m at:

info@innergameofpkd.com

Guiding PKD patients to a higher quality of life,

I wish you the best that life can offer!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming