When the symptoms of Polycystic Kidney Disease are experienced by PKD patients, their sense of mortality increases.

For the individual patient, this can bring about anger, sadness, fear, and depression. It also can bring about a sense of a decreasing scope of life.

For instance, fatigue can lessen your activities. Pain can cause negative moods which may affect the quality of your relationships. At worst, you feel very sick. Often you “just don’t feel up to” doing things which normally brings you pleasure.

If you are being dialyzed, you may have to give up your job, which takes away the funds which you have used for pleasurable activities. And, certainly the time for dialysis causes you to adjust your schedule around your treatment times.

Time becomes a more precious commodity. When times is “wasted,” you feel it more than before you were sick. You also may get a bit impatient when “things” don’t go as planned.

Unfortunately, so many things in life are beyond our control. Baseball games get rained out. Traffic jams occur. People “suddenly” change plans.

You too often seem to be at the mercy of “circumstances.”

All we can do is, at least to some degree, control our responses to what happens.

I found that to minimize disappointments with planned activities that don’t work out is to have a “Plan B” and even a “Plan C.”

Being prepared to have an alternative course of action when the anticipated activity doesn’t happen is a great strategy to stay upbeat in the face of disappointment.

Have several “projects” that can be worked on if your plans don’t work out. You can usually take the book you’re currently reading with you to read if a friend is late. Perhaps a notebook can be used to do some journaling.

If you’re looking forward to an outdoor activity, have an alternative indoor activity if it rains.

Keep your options open. You never know. Maybe the “Plan B” will provide a better use of your time than your original plan!

Next time, I’ll discuss some “bigger issues” that your disease may be keeping you from!

Plan aHEad!

Peace and Blessings!

Coach Richie Perl

The future.

No one knows what will happen in the next second, much less the rest of one’s life.

For you (and me,) the Polycystic Kidney Disease patient, although the future may be unknowable, the perception of your future is knowable. Not only is it knowable, but this perception of your future has a great deal to do with how you respond to your present.

When I was symptomatic, I could not “see” a future. When I thought about it, all I could “see” was fog. And, in my perception, as I moved forward, the fog moved with me. I could not outwalk the fog.

While I had this perception, I was very passive about my disease. It wasn’t a conscious passiveness. I still complied with my medical protocol. But I seemed to do it mechanically, dispassionately. Like a job. I felt I was just going through the motions. I didn’t have hope.

Not having hope, what I now call “positive expectancy,” is not a great way to travel on the PKD Odyssey.

But, as “luck(!)” (or something else) would have it, the perception of my future would change.

At this time in my life,  I was in my first year of Neuro-Linguistic Programming training. One of the concepts being studies was the concept of “Timelines,” which is a study of how we perceive the passage of time.

As part of the training, I volunteered my perception of my “foggy future.” Another student asked me, If you can’t see looking forward, when can you see looking on your sides?”

In my imagination, I looked from side to side, and I perceived (totally mentally) other PKD patients moving in the same direction towards the fog.

My new perspective was that I may not “see” a future, but I have a lot of company!

It was a significant change. My internal sense of futility changed as I internally reasoned, “Maybe it’s worth taking care of myself if for no other reason than to be a “companion” to another PKD patient somewhere down the line.”

And in fact, without consciously doing anything different, I somehow followed my protocol with more purposefulness.

What I’m saying is, that a change in the perception of my future directly made a change in my attitude about following my medical protocol.

I don’t have to tell you that a change in attitude towards more enthusiasm for doing what needs to be done on the PKD Odyssey is a very good thing!

So how do you perceive your future?

Give yourself the gift of time and really think and use your “inner senses” to become aware of how you perceive your future. And allow whatever comes up for you. Then accept it for what it is. If you perceive a hopeful future, great! If you perceive a less than hopeful future, know that like for me, your perception can change.

I’d be interested in how you do perceive your future.

I’d love to hear from you on this subject!

Please leave comments!

I’ll catch you…later!

Peace and Blessings!

Coach Richie Perl

Whether you’ve been recently diagnosed with Polycystic Kidney Disease or have been on the “PKD Odyssey” for a long time, it’s a good bet that you have experienced anger at some point or at several points along the way.

And why not? You did absolutely nothing to “deserve” having PKD. Nor all the “stuff” that goes along with it. And there is a lot of “stuff!”

From being misunderstood, having doctors that don’t understand our disease, being poked and prodded, eventual physical symptoms, strained personal relationships with people who “don’t get it,” to the “inconvenience” of dialysis, the transplant waiting list and the apprehension that occurs pre- and post-transplant, there’s a lot to be angry about.

And as hard as you may “try” to control this anger, sometimes it will come out at the most inopportune time. Like when you need to take time off for a lab test and your boss gives you “that look.” Or when a symptom prevents you from attending a joyful event.

Yeah. You’re angry. You may really “blow your stack.” Or attempt to hold it in and get a headache or stomach ache or…higher blood pressure!

“OK,” you say, “What can I do to control this anger?”

First, before you get to a state where you might “blow up,” take a moment to acknowledge that you do have quite a bit of justified anger within you.

And whatever you do, don’t ever let anybody deny your anger by saying something like, “You shouldn’t be angry. Many people have it worse off than you.” Chances are, the person who says something like this wouldn’t want to trade places with you!

The useful track to take is to express your anger. Write a journal, or a blog. Have a good friend upon whom you can “dump.” (But don’t impose too often!) Do as many enjoyable things as possible. And add to the things that give you joy. Consider investigating areas of interest that you have ignored. Say, listening to a genre of music you usually avoid. Reading about something that you never “got around to” doing.

The idea is to offset the negative effects that your anger has on your mind/body/soul with as much “pleasant” stimulation as possible. As I’m sure you’re aware, you can think too much.

So, to summarize, acknowledge and express (constructively!) your anger, and then go and do the things that give you pleasure!

It is a tough world sometimes, but there’s a lot of good stuff as well when you clear away your anger so that you can see it!

Stay Cool!

Peace and Blessings!

Coach Richie Perl

The Doctor.

As a kid, the whole concept of “doctor” brought to mind at best, a mixed feeling of fear and hope.

Fear because I was sick, and that seeing the doctor might result in getting a “shot.”

Hope, because the doctor will help me get well.

It took a long, long time to get past the fears and to focus on the “hope” aspect of seeing the doctor.

I had to become an “adult” with many years of positive experiences with doctors to get to that place.

I now view doctors as knowledgeable partners in  my overall strategy of maintaining a high level of health.

My early negative conditioning of fearing doctors is gone.

I was also “fortunate” in a strange way in my early conditioning concerning Polycystic Kidney Disease.

My father was one of those “macho” guys who would never see a doctor. And indeed, he was rarely sick.

So I was spared the experience of seeing him suffer with his PKD which nobody knew, including himself, that he had.

One day he passed out on the street. Two weeks later he was dead.

He didn’t want to be seen by anyone while he was in the hospital. The day he passed out was the last time I ever saw him.

Comparatively speaking, from my point of view, it was a relative easy death.

I didn’t see any suffering.

So when it was my turn to experience physical symptoms, I had no negative conditioning associated with the disease. To me, it was the disease that my father had but didn’t know he had, a disease that I knew about and was co-operating with my doctor and medical team from that point on.

For PKD patients who have witnessed family members suffer with the disease, it is understandable that you have negative conditioning associated with your disease. Many of these negative associations may be subconscious. You aren’t aware of them. Things like missing appointments or “forgetting” to take your meds may be due to this negative conditioning.

This is not your fault. Your survival mechanism wants you to avoid anything that appears to you as life-threatening.

The question is, what can you do about such negative conditioning if you may not be aware of some of its effects?

The question may be simple, but the answer isn’t.

All I can say to you is to be “cut-throat” honest with yourself. Acknowledge to yourself where you are sabotaging yourself. (“Oh, one bottle of cola won’t hurt.” Yes it will!)

Look at your excuses and denial straight in the eye and admit that it’s fear that is stopping you from following your prescribed protocol.

I’m not saying this is easy, but it can be done.

Life Coaching may be what you need to “ferret” out these sabotaging behaviors.

Perhaps I can help.

If you feel that you find yourself going off “your path” repeatedly, it might be helpful to contact me at:

info@innergameofpkd.com

and we can arrange a complimentary telephone conversation about your situation.

In the meantime,

Stay in Good condition!

Peace and Blessings!

Coach Richie Perl

Life has its stages. From infant, to toddler, young child, mid-childhood, pre-teen, teen, young adult, adult. “middle” age, and on to old age.

Often, the transition from stage to stage is not as smooth as we might like to be.

The transition into and out of adolescence, with its accompanying hormonal activity, can be unusually difficult. Hopefully, most of us eventually adjust.

For PKD patients, there are similar transitions. As our disease “progresses” (I’d rather say “deteriorates”) from stage to stage, external and internal adjustments must be made to maintain a reasonable sense of inner stability.

A a PKD patient’s condition deteriorates (and not all patients conditions do deteriorate, some are very stable for many years), there is a tendency to become ever increasingly frustrated, angry, and/or depressed.

This is, of course, natural and understandable. Nobody likes to deteriorate. Yet, these negative emotions have, at best, limited usefulness. These negative emotions can sabotage the positive emotions of courage, motivation, and positive expectancy.

So, if and when you begin experiencing symptoms of the next stage of PKD, expect and, for a time, embrace the negative emotions. Then, consider as objectively as you can, your current situation. Discuss your medical concerns with your medical team. (Often, nurses are better equipped to deal with the emotional aspect of our disease.)

Notice your tendency to compare your current state of health with a previous state (“I can’t do what I used to do!”). And, as you age this becomes even truer!

You may even have to go through a kind of grieving, to “let go” of your old “you”, who was younger and healthier. That “you” will never return. Remember how good it was to be that former “you!”

And then, it becomes time to adjust to your new situation. You may experience some difficult physical symptoms. You may have to suffer negative side-effects from medications. Your daily life may be quite impacted, or, hopefully not so much. But in any case, it’s helpful to assume an attitude of facing forward, and moving ahead with determination that you will do what is necessary to maintain a high quality of life.

Keep informed about your disease, keep informed about dialysis and transplant options. Surround yourself with encouraging, optimistic, and compassionate people, hopefully in person, and on-line on the message boards.

You may no longer be the person you once were, but I’ll bet you’re wiser and more understanding about the nature of life!

How have you been adjusting?

I’d love to have you post your comments!

Oh, by the way, if your on Facebook, be sure to vote for the PKD Foundation as your cause so they can win a large monetary grant.

Please check out http://apps.facebook.com/voteforacause/

Thanks!

Hoping your well adjusted,

I wish you

Peace and Blessings!

Coach Richie Perl

Polycystic Kidney Disease patients are often placed in situations that may be challenging to them:

Dealing with the fact of being diseased…therefore feeling “different” in a negative way.

Dealing with the fact that their bodies are not in their own control…therefore feeling like a “victim.”

Dealing with the fact that some family members and “friends” are “easing them out,”…therefore feeling isolated.

Dealing with the fact that they MAY have a “limited future,”…therefore developing a pessimistic, fatalistic attitude.

OK. The facts are real. But the “therefore’s” “ain’t necessarily so!”

You all know that it’s not so much what happens to you, it’s how you respond to what happens to you that makes the difference.

Yes. You are diseased. And you may be different than many who are blessed with excellent health. But there are many, many areas of life that you can get involved with and be part of the mainstream of life. True, like most people, your activities may change as the years flow along, but the world is a big place, with room for many people to engage in many activities. OK, you may not become a linebacker in the NFL, but how many people are?

Yes, you are not totally in control of your own body. But who is? There are obviously many other diseases besides PKD that humans are subject to. Being “aware of your own mortality” early in the game might be a very good lesson to learn. You learn to appreciate that which life offers you. Including the latest medical advances!

Some family members and friends will never be totally empathetic with your disease. So what? Are they so admirable? We all have our faults! Seek friendships with those who can understand and empathize with the fact that ALL humans have limitations. Those who don’t have this sensitivity will learn their lessons eventually!

Yes, you MAY have a limited future. And you and anyone else can get run over by a bus! You don’t know what the future holds. BUT…you can make healthy choices NOW! Medically, socially, and emotionally! Choose to do things that you enjoy with whatever time you have to do so! True, your activity at any given time may not be what you dream about, but being active is better than brooding and “kvetching!”

Life on this earth is exactly that…life on this earth. It is not paradise. The history of human progress has been the pursuit of making life “better.” You may be not feeling well as you read this, but I would be very surprised if you would rather live 100 years ago.

Take advantage of 2009! Be thankful for the TV remote!!! Be thankful for Social Media! Be thankful for kidney transplants with different blood types!

Maybe you might even be thankful for my blog!

Remember, it could always be worse!

Peace and Blessings!

Coach Richie Perl

As a PKD patient, you want to obtain and maintain the best possible quality of  life possible for you.

Now, I can’t know what a high quality of life is for you. But I have to assume at least that feeling well is part of it. Being pain-free and as symptom free as possible will allow you to live your life to the fullest as possible.

Now, there are aspects of PKD that may be beyond your control. Beyond a certain point, there’s a better than even chance that your kidneys will fail. (Recent clinical trials may indicate that this might not be a total inevitability.)

You may not control many of the symptoms. Pain. cramps, nausea, hematuria, size of girth, are some symptoms which can maybe only patially be controlled.

So, what is in your control? You know! Diet, keep doctor’s appointments, taking your meds, managing stress(!).

Your attitude is also in your control. Not that it’s easy. But it’s quite doable.

You see, much of the attitude you have about your disease depends on what meaning you ascribe to your disease.

If you tell yourself, (your “self-talk”), “Oh God! I have PKD. I’ll never have have a normal life again! Woe is me!”, your whole approach to dealing with your disease will hardly be one of optimism and positive expectation. This “resignation of doom” is something that you chose. It is not part and parcel of the disease.

Therefore, you can choose to apply a different meaning to your disease: “Wow! This is a tough break. But I know others who have successfully dealt with disease, and I’m going to do what I can to live the best possible life I can live!”

This self-talk (which doesn’t necessarily develop overnight) leads to an attitude of curiosity, exploration about the disease in general, and how you personally are affected by the disease. You are open to working with your medical team in a co-operative way. You seek support from those who are successfully dealing with their PKD Odyssey.

If you find yourself engaging in negative self-talk, you may ask,”How do I adopt a positive mind-set that will lead to positive self-talk?

Easy. Learn all about the disease, the treatment for symptoms, the clinical trials, the experiences of people who are doing well on dialysis or transplants, and keep mechanically telling yourself that “Hey! Other people have pretty well with this disease! Right now, I see no reason that, with some discipline and support, I can be of those people too!”

Keep doing this until you literally convince yourself that you will do what is necessary to live as well as you can with disease!

So, get out of your own way to a high quality of life by immersing yourself with all the encouraging input you can absorb about PKD!

Please let me know if I can help!

You can contact me at:

info@innergameofpkd.com

and you’ll learn how to “Get out of your own way!”

Peace and Blessings!

Coach Richie Perl

For most of us, our survival instinct has led us to fear the unknown. This is understandable. We like to know our situations, and to feel somewhat in control of them.

And, truth be told, how many of us live our lives in such a way as to minimize this fear of the unknown by doing thing in the “tried and true,” traditional ways.

There is, of course, nothing wrong with living this way. Others prefer taking great risks, and live life “on the edge.” Unless such a person has dependents, there is nothing wrong with living a life of risks.

For the PKD patient, (as for everyone,) the future is indeed unknown. Yet the DEGREE OF FEAR of the future can be decreased by education. You may be in a stage of your disease that is a new experience for you. But it wouldn’t a new experience for someone who is ahead of you on the PKD Odyssey.

Even though each of us has his/her own “personal” PKD disease, the insights of an “experienced” patient can significantly reduce the fear of the unknown, because, as I like to put it, the fog that obscures the future clears up a bit with knowledge. You can, to some degree, mentally prepare yourself for “eventualities” by anticipating some of them.

You can certainly prepare questions that your medical team can (hopefully) provide, if not direct answers to, at least some guidelines as to what can be expected on your PKD Odyssey.

Make no mistake: PKD patients get sick! The degree of symptoms varies greatly. But it’s better not to be surprised when symptoms occur!

It’s better to say to yourself, “Ah! There’s the pain, or cramps, or nausea, or fatigue that I was told about!” instead of, “What the h*ll is this??”

When you are educated about PKD, you will “forewarned,” and therefore “forearmed!”

And one aspect of being forearmed is to accept the fact that you do have a disease, and are in fact diseased. This will prevent you from being in conflict with the Self who wants to live on as if nothing is wrong. You do not want this conflict. It takes too much psychic energy to be in conflict with a Self that no longer exists!

Now, when I say accept your disease, I do not mean be resigned to your situation! You can grow from your apparent “negative” situation!

Have patience! Learn. Grow. Make your PKD Odyssey an adventure!

Develop compassion for your Self and others!

Now, if you are still in a state of anger or confusion and don’t understand how your PKD Odyssey can be an adventure, or how you can go about removing the fear of the unknown,

please contact me at

info@innergameofpkd.com

And let’s talk about it!

I’ll show you how can look at your own situation in a way that will increase the level of “positive expectation” for your future! Your PKD Odyssey may not be a tough as you now think it will be!

Rome wasn’t built in a day. Building a new Self when you have PKD takes a bit of time as well!

So, “Keep On Truckin’ !”

And Be Patient!

Peace and Blessings!

Coach Richie Perl