A Facebook “friend” shared the following link with me:

http://content.nejm.org/cgi/content/full/NEJMoa0907419

(Thanks, JK!)

It reports that the clinical trial of sirolimus on humans to determine if sirolimus slows down the progression of cyst formation in Polycystic Kidney Disease patients has shown that…it doesn’t.

This drug evidently worked on animals so a human trial was performed.

Well, back to the drawing boards.

I don’t know if the trial will be repeated with  different dosages, but in any case, it shows that a promising drug is merely that…promising.

We know that drinking a lot of water helps slow down the growth of cysts, and that tolvaptan is a drug already in use for people with congestive heart failure and most likely will be approved for PKD patients. Tolvaptan, for intents and purposes, is a super diuretic.

The HALT trial which is testing keeping blood pressure low shows promise.

But I fear that, while treatments for PKD may come soon, a cure will be a long time coming.

A cure will most likely involve a lot of genetic manipulation. I think we have a way to go before most of us want our genes messed around with.

Now medical biologists are playing around with in-vitro fertilized fetuses, determining which do and do not have the genes for PKD. This procedure may be problematic for those who care about what happens to the “rejected” fetuses. For full disclosure, I do.

So, it would seem that the PKD Foundation won’t go out of business in the near future!

I just wish it would focus some of their efforts to patient support. I have read that people have contacted the PKD Foundation for support, and didn’t receive what they needed. (I do not make this up. It was posted on several on-line forums.)

The PKD community does its best to support us. We give support and receive support.

Hopefully, a viable treatment will come soon.

In the meantime, we have to support each other.

If you feel you need more support in the “Inner Game” of your disease, please contact me at

info@innergameofpkd.com and let’s connect!

Hopefully, the next clinical trial will be successful!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

You’ve had a tough day.

For most people, life ain’t easy. With PKD, you’re carrying that extra burden. For some of us, that burden is quite heavy. We only have so much energy to get through a day, and some days are, well, there are days and there are days.

Kidney patients aren’t likely to go to the local watering hole with the buddies for a few cold ones on a Friday after work, as I did when I was a younger fellow.

No. We need a healthy way to “mellow out” and recharge.

So, how do you do so?

Music is usually the way I get to “unwind.” Depending on my mood, I will generally listen to New Age music. Cool, mellow, hypnotic. It slows down my brain waves, which in turn relaxes my body. A relaxed body leads to a relaxed mind, slowing down those racing thoughts.

New Age music also seems to “cool down” the environment. My wife enjoys listening as she reads her novels on her Kindle.

Yeah. Cool. Hypnotic. Mellow.

And after a half-hour or so, I’m quite recharged!

Back in the days when I was dialyzing, I would often bring my Walkman with tapes of mellow music! (Yeah. Tapes. No Discman quite yet! Certainly no mp3s!)

The point is that while upbeat music certainly can energize you, it’s helpful to know your body and recognize when your “reserves” are low.

Listening to upbeat music when running “close to empty” can add stress to your body.

Remember your blood pressure!

When you’ve mellowed out a bit, and maybe have something to eat to “refuel,” by all means groove to the Black-Eyed Peas or Green Day!

Being an “old” baby-boomer, I’ll groove to some smooth jazz, (I’m listening to “Fourplay” as I write this! They are definitely worth checking out if you like music with an “easy groove!”)

Another way to recharge is to read what most people call “inspirational” material.

I have read such material for 40 years, starting with Norman Vincent Peale. (Younger folks: He wrote “The Power Of Positive Thinking.”) That book may have helped me from committing suicide.

Of course there are more up-to-date writers today. And they don’t have to be those old-fashioned “evangelists” either.

Check out Bob Proctor, Wayne Dyer, and s publication called “My Daily Word.”

When I feel that the “world” is getting the better of me, I turn to this type of writing, and I remember who I REALLY am!

I remember that I am MUCH more than my disease!

info@innergameof pkd.com is my e-mail address.

How do you recharge?

I’d love to know and share it with the PKD community!

Thanks a lot!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Summer is here,

We have that urge to be outdoors. It’s a good urge. We are natural creatures. Most of us get recharged when we’re out in nature.

Yes. The summer has its downside for those on hemodialysis: You get thirsty!

Now, when I was on hemodialysis, and it was a really hot day, I actually didn’t go very far. I happen to live across the street from a playground.

I take advantage of that playground by siting on a folding lounge-chair (in the shade!) and reading or listening to the Yankee game on radio.

When it gets REALLY hot, I go down to the playground sprinkler and run through for a cold spray wearing my t-shirt, which gets soaked! The wet t-shirt keeps me cool for quite a while, and then I go do it again!

Now, for the ladies…(OK. There are some of you whom I wouldn’t mind seeing in a…well, I’ll stop right here!)

A spray bottle of water along with a wet wash cloth can also keep you cool in the hot weather.

And while resting in shade you can play games on your favorite hand-held gadget!

Yes. It is difficult for some of us in the hot weather. But with some preparation and self-imposed limitations, we can enjoy the outdoors in an enjoyable way!

A great time of day to be out is when the sun is setting. Depending on where you live you can watch the birds coming home for the night!

Being out in nature, to whatever degree you can is reminder that the world is much bigger than anyone of us.

I know that in the few times I’m able to go to a wooded area, I feel the sense that I’m part of something bigger. Even seeing an animal as common as a squirrel reminds me that my circle of concern MUST be greater than my own concerns.

That feeling is actually enjoyable for me. It expands my boundaries of what I habitually think about.

Ans sometimes, I even lose the sense of myself, feel totally connected to the natural world.

And that is the most enjoyable experience of all!

Stay quenched, my friends!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The doctor’s waiting room.

Boy, have I spent a lot of time in waiting rooms!   I wish I had that time back. I might be a few years younger!

I’m sure you have too!

What do you think about while in a doctor’s waiting room?

“How long do I have to wait?”

“Hmm. That person doesn’t seem so good.”

“I hope taking this time off for this appointment doesn’t affect my standing at work.”

“I hope the doctor doesn’t have me go to another facility for a test.”

“I scared of what this pain is.”

“What if it’s serious?”

“What do I tell my family?”

“How bad are my kidneys?”

Well, I would suspect that most of your thoughts are not the most pleasant ones to enter your brain.

I know. I’ve had them all.

The negativity of the “usual” thoughts was so unhelpful to me, that over the years I’ve “tested” different mental strategies to “tame” my mind.

The mental strategy I now use is “thought suspension.”

In essence, I think of “nothing.” Well, one can’t easily think of “nothing.”

Actually, what I really do is put boundaries on where my thoughts go.

First, I acknowledge and accept the fact that I need to be seen by a doctor because my body is far from perfect.

Second, I experience a grudging sense of gratitude that I have access to good medical care. (Grudging, because I REALLY wish I didn’t  have to be there!)

Third, I zone in on my surroundings. I notice the pictures, magazines, and plants (if present) in the room. I quietly notice the other people in the room.

As I do that, I start to…well, zone out! I go into that day-dreamy, half-sleep state that is learned by being a New York City subway rider!

This method relaxes my mind and relaxes my body, which often helps my blood pressure reading!

Now, if you are new to waiting rooms, I wouldn’t expect you to have this technique mastered.

But here’s a hint: Think of a chore you need to do periodically that is just a pain in the…butt to do. You know how you do it with your mind kind of half somewhere else?

Well,when you’re in that waiting room, make believe that you’re about to do that chore, and let that “half of your mind” drift to pleasant thoughts, like who is pitching for your baseball team tonight.

Before you know it, you will be seeing the doctor and you will be focused to discuss the matter at hand!

Eventually, you will transform “thinking in the waiting room” to “waiting in the thinking room!”

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

As we have often been told, we can look at challenging situations as “the glass being half-empty or half-full.”

This phrase, “true” as it is, has been so overused that it has lost much of its impact.

So, I’d like to “re-impact” the value of this famous phrase.

Continuing somewhat from my last post, we know that you can “talk yourself” into almost any emotional state.

I’m sure that most of you, either personally or through observation, have a experienced a young person being rejected by a would-be “special friend” responding by saying something to the effect that “I’m a complete loser because So-and-so rejected me!” and is done with considerable histrionics.

You also know that it isn’t helpful to respond to that young person by saying, “You’re not a loser!” because it goes against what the youngster is experiencing and your comment, although said with the best of intentions, won’t be “heard.”

When a PKD patient is facing a current challenge, it often happens that his/her mind, because of its survival instinct brings up the “worst-case scenario.” (See the comment on my previous post.)

OK. The situation is probably not as dire as your mind makes it out to be. So, how do you train your mind to see the situation as “half-full?”

Well, given the principle stated above that “you can talk yourself into any emotional state,” start telling yourself “good things.”

Like, “Well, at least the diagnosis was made now and not later.” or, “Let me find out as much as I can about this situation.” or, “Hey, I’ve been through challenges before. Here’s just another one one my PKD Odyssey.”

You get the idea.

Because it’s not just the words that you tell yourself.

The words cause mental images to form in your mind which in turn causes various hormones to work on your body in either positive or negative ways, depending on the inner images.

I would think it would helpful to generate as positive an emotion as you can!

Don’t you?

Therefore, notice what you tell yourself when you are presented with a medical challenge. If your mental words conjure up a worst-case scenario, take a deep breath, and ask yourself, “Is this REALLY the case?”

It probably isn’t.

At least wait until you get the complete information.

Because if you see the situation as the glass “half-empty,” pour it into a smaller glass!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

Worry:

Filling your mind with the thoughts and emotions of the worst that can happen in the future.

Concern:

Logically and intellectually considering possible negative effects of a future procedure.

There is a difference.

Emotions.

The great “success gurus,” like Napoleon Hill and Maxwell Maltz always prescribed “visualization” with feeling to assist in achieving desirable goals.

I happen to think that health is a desirable goal.

Now, hold on.

I’m not going to tell you that merely visualizing with feeling a state of good health will provide that for you.

For Polycystic Kidney Disease, life doesn’t work like that.

Actually, what I’m suggesting is kind of the opposite:

Don’t visualize with feeling any negative effect that has yet to happen!

Why use the power of your mind to increase the possibility that something bad might happen?

If you feel pain, and you don’t know what is causing it. develop the mental skill of NOT jumping to terrible conclusions until you get your doctor to diagnose the condition.

Or, similarly when your waiting for lab results, be like a member of a jury — come to no conclusion until you’ve examined the evidence.

Is this easy to do? No. Of course not. Our survival mechanism correctly produces the emotion of fear whenever something in our bodies is not right. That’s obviously a good thing.

But, hopefully, we have a bit more control of our minds than a wounded animal, who will attack someone who wants to help it.

It’s helpful to use the fear in some beneficial ways.

• Accept the fact that you’re experiencing discomfort.
• Seek assistance quickly.
• Vent to trusted friends.
• Trust the system (I know, not always easy to do).
• Know that processes take time.
• Pray, expecting positive outcomes.
• If applicable, go about your normal activities as much as you can.

That period of time of “not knowing” can be rough. But if you have a sense of “the spiritual,” learn to “give it over” to God, or the Universe, or Source(?)

These are not signs of weakness in any way shape or form. They are the proper uses of your mind to move into the state of “positive expectation.”

Give it a try!

info@innergameofpkd.com is my e-mail address.

I’m always open to discussing the use of your mind for beneficial purposes!

After all, it’s your mind that plays The Inner Game Of PKD!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

The first time I got into  car to drive car solo, I was nervous. I gripped the steering wheel very tightly. I had to consciously remember all the steps of driving. With no one to remind me. My heart was racing. My stomach was tight. My mouth was dry. Well, I put the key in the ignition, checked the mirrors, put it in gear, and very gently stepped on the pedal. The car moved. Well, here we go!

Obviously, I survived!

If I was in a similar situation today, I would use my mind to help me make such a challenge easier.

How?

Perhaps you saw the Alpine skiers in the Winter Olympics just before their ski runs. They closed their eyes, and mentally skied the course, successfully!

In other words, when they did their actual runs, to their minds, it was not the first time!

In this day of multi-media, there are many videos of medical procedures. (I recently saw You-Tube videos show cataract operations, which I will probably have to undergo in the not-too-distant future.)

Here is a link to to a site that has and introductory video about kidney dialysis:

http://www.careflash.com/video/kidney-dialysis?lc=en

Getting as much information in as many formats as possible will prevent your mind from producing overly fearful thoughts which are definitely not helpful.

Here’s site which shows kidney transplant surgery. It’s over an hour.

http://video.google.com/videoplay?docid=5778624554431891564#

There are more if you search.

You don’t have to have your mind build scary thoughts based on faulty knowledge!

You can learn about your condition today as never before!

You can learn from the videos, and make a list of questions for your nephrologist that will indicate to him/her that you are willing to research your own condition. Most doctors like this. You will most likely have a better rapport with your doctor by speaking as intelligently as possible about your condition.

Make your mind an ally by giving it as much good information as you can. You will be so much more prepared and have a higher level of confidence as you journey along the “PKD Odyssey!”

See you at the Videos!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming

In mathematics and physics, phenomena that change with time are often plotted on a graph with time as the horizontal axis. The further to the left on the axis you go, the later time advances.

Clearly, our lives are phenomena that change with time. We can “plot” events of our lives along a “time-line” starting from birth (or conception) at point zero, and subsequent events to the right of point zero, as time increases.

We have a marvelous capability. It’s called memory. We can remember many events that took place in our lives. Some pleasant, some painful, and mostly, the ordinary events of daily life.

But some events, usually negative ones, somehow make an imprint in memory that’s deeper than an everyday event. These events are often described as traumatic. Some of these events may cause phobias. Consider a young child being barked at by a large “friendly” dog. This child may be afraid of dogs for the rest of his/her life.

Or, more to the point of this post, a child may have had a “traumatic” experience in a doctor’s office, and have carried this “negative” imprint of doctors all the way to adulthood.

Similarly, a child may have witnessed a parent suffering from a disease, let’s say, polycystic kidney disease, and didn’t yet have the mental capacity to fully understand and process the parent’s experience. You can easily understand that this child, when later on in life is him/herself diagnosed with PKD, will perceive that diagnosis in a rather negative, probably even a fearful light.

This, and similar experiences which occur early in an individual’s time-line can distort a patient’s perspective of his/her current situation. In effect, the patient is carrying baggage from the past.

Although some aspects of the past experience can be helpful, by and large, the negative baggage is not helpful.

OK. So if you recognize that you have had a somewhat traumatic experience relating to your disease or to the medical professional, it would seem helpful to get rid of the baggage!

The key is simple! The realization may not be easy!

The young person who experienced the traumatic event is not the “you” of today! The younger “you” didn’t have the capacity to process what was going back at that time! The current “you” does!

The suggestion is to play a “mind game” in which the current “you” goes backwards along your time-line to the event and “parent” the younger “you” concerning the traumatic event.

This will disassociate the current “you” from the trauma experienced by the younger “you” in such a way that the current “you” will be much less affected by that early traumatic event.

I know this may be a bit confusing. I know it works. I’ve done it!

Please let me know if you would like further explanation of this NLP “mind game!”

info@innergameofpkd.com is my e-mail address!

And may your time-line be a long one!

Peace and Blessings!

Coach Richie Perl

Certified Professional Coach

Certified Trainer of Neuro-Linguistic Programming