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:
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
