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
Have you connected with the PKD Foundation? There are chapters in most states and I have formed great and valuable friendships through the Foundation.
Hi, Howie!
Yes. I’m in the the Long Island (NY) Chapter!
But many folks aren’t near a chapter, and there aren’t enough fellow patients to form one.
Given the fact that there are still many PKD patients for whatever reason choose to stay ‘in the closet’ about their disease, Richie I think that your idea is a good one. I believe that having someone you can share your emotional ups and downs with in a safe comfortable setting is very important. While PKD Foundation meetings often try to accomplish this, I think there are probably still people who may prefer the one-on-one contact you are referring to. Although I shout about my disease from rooftops for the sake of PKD awareness and believe it is our responsibility as a group to do so, I totally respect everyone’s right to handle their disease and their personal situations as they see fit.
As both a chapter coordinator and member of the Board of Trustees for the PKD Foundation, I talk to people all the time about PKD….both physical and emotional aspects of the disease. I am totally open to joining you in your efforts to ‘buddy’ with people to help them deal with their PKD challenges on various levels. As for the best way to do this, I have to agree that the internet has opened the PKD world up quite a bit lately…..however, I do not have any other ideas or suggestions at this time. If you or someone out there comes up with a idea that I can help implement, just let me know! It would be my pleasure to do what I can.
Karyn–PKD Foundation Memphis Chapter Coordinator
Hi, Karyn!
One step in this process would be to spread this idea to “people of lnfluence.”
Clearly, the “gut-level” impression of The PKD Foundation “on the ground” is not totally positive in the area of “patient support.”
I would suspect that the way to go is through the chapter co-ordinators like yourself.
How do you feel about that?
Peace and Blessings!
Coach Richie Perl
Hi Richie,
I beg to differ with you. In the 10 years since my diagnosis, something that hit me like a ton of bricks because I have zero family history of this….I am a tried and true ‘mutant’ if you will….the PKD Foundation has been the one place that has given me the inner strength and courage to live each day to its fullest. The relationships that I have made, the knowledge that I have gained, the researchers and doctors I have met, and the patients of ‘experience’ I have befriended have more than made up for what I was sorely missing in my life when PKD took me by storm.
While the PKDF began as strictly a research organization some 28 years ago, the chapter movement evolved as ‘friends groups’ to offer support to those in need. Obviously, we cannot be everything to every one, and everyone’s needs will vary. Today’s ‘chapters’ have expanded their goals to include education, advocacy, awareness, and fund raising for the purpose of helping the organization as a whole find treatments and a cure for PKD. Our vision that ‘no one suffer the full effects of PKD’ would be unrealistic if we could not enlist the help of chapters full of active, motivated participants.
The support element is there….but many people still are unable to see and share our vision as far as I’m concerned. They allow their fears and denial to paralyze them and they do not take a stand against PKD….they wallow in self pity and ask that the PKDF hold their hands. I promise that we do as much hand holding as humanly possible….we have loving, generous staffers in place, as well as people….most of whom are PKD patients….. who step up to run chapters as volunteers.
I find your statement that claims PKD patients don’t get what they are needing from the PKDF sad and frustrating. I go back to JFK’s ‘ask not’ speech. Coping with PKD and finding a solution to the PKD problem is seriously a two way street. I know I do my part….I can see that you do yours….the question remains, how many of us out there are truly contributing anything (financial or otherwise) to helping the PKDF make life more manageable for those suffering the ill effects of this disease?
And in answer to your question….yes, the chapters can probably do more to support those needing emotional TLC….but at this moment in time, I feel that we are doing the best that we can. I can certainly pass along your ‘buddy’ concept to ‘the powers that be’ at the PKDF, but this will only be something that can implemented by strong chapters with good leadership having regular meetings…..again, each chapter is run by volunteers doing the best that they can with the few members willing to step up and work with them. Until more people transition to ‘volunteers’ I believe that the kind of support that you question coming from the PKDF will be hard to find.
Karyn
Karyn,
No doubt you’ve gained much from your association with the PKDF. Obviously it does much for the patients, over and above the mission to find (and fund) a cure.
I concur with everything you have written.
And that’s exactly the problem!
May I beg your indulgence and permit me to use your own words to illustrate what I mean.
“The support element is there….but many people still are unable to see and share our vision as far as I’m concerned.”
Specifically, what is this “vision?” It may exist, but I have never actually seen it spelled out.
The “tagline” on the PKDF website is “for research in Polycystic Kidney Disease.” It doesn’t include the words,”and support for PKD patients.”
I keep hear that the “mission” has changed.
I am ignorant of the change both from what and to what.
Perhaps other people are equally ignorant of this “mission.”
If there is such a “mission,” what is it? Is it published anywhere? Can it be disseminated through the usual Internet outlets?
)
(Rhetorical questions, Karyn! I’m not giving you the “third degree!”
I quote your next sentence:
“They allow their fears and denial to paralyze them and they do not take a stand against PKD….they wallow in self pity and ask that the PKDF hold their hands.”
Precisely!
Yet, if the PKDF doesn’t develop the “notoriety” as THE source for TOTAL SUPPORT for the PKD patient, the association that the PKDF forms in many patients’ minds is “merely” that of fund-raising. (Read: asking for money.)
Case in point: Last week at the Tri-State Walk fpr PKD in NYC, I was “manning” the PKDF “Mission Tent.”
All that was there was the usual green and white brochures which are who knows how old, and those cookbooks which were for sale. There were also “pinwheels” to honor living and deceased patients.
If there were ten people out of the several hundreds that were there who bothered to seek information, that was a lot!
I was personally asked only several questions!
This tells me that patients already know as much as they think they need to know, or, going to the PKDF Mission tent wasn’t worth the trip!
This is not a good sign!
New York City doesn’t even have an active chapter at the moment!
The chapter co-ordinator isn’t even on Facebook! New York City!!!
Don’t you think the PKDF might consider some improved public relations to educate the public about the disease, and develop itself, as I mentioned, to be “THE SOURCE for TOTAL SUPPORT for the PKD patient?”
I don’t know how it is in your neck of the woods, but around here, The Susan G. Komen Foundation has become such a strong fund-rasiser, that breast cancer has almost become (and I am being a bit sarcastic here) the “hip” disease! There’s not too much “stigma” associated with breast cancer. Why? Because the publicity generated by the Susan G. Komen Foundation brought it “out of the closet!”
What’s my point in this ramble?
Specificity.
I’m aware that chapter meetings do have some sort of structure, but clearly it leans largely towards fund-raising, and general education and awareness (mostly to people who already have quite a bit!)
Much more emphasis needs to placed on developing materials and programs aimed at helping patients deal with the subjective experience of actually having the disease. I like to think that my blog contributes to that in some small way.
Wouldn’t it be great if the Foundation can add such material and programs to its offerings?
Karyn, I think you can see that this topic REALLY gets me going!!!
PLEASE understand that my passion comes from what I know my training has done for me and a few others with whom I’ve had the privilege of working.
“No one cares how much you know until they know how much you care.”
Karyn, you’re the best! (I did see the video of you on your news channel! You were terrific!)
Your family is beautiful!
Thank you for your service!
And thank you for this dialog!
Let’s keep the ideas flowing!
Peace and Blessings!
Coach Richie Perl
Hi Richie,
You, Bill Brazell (aka Kenny the Kidney) and I should have a ‘chat’ someday! We are all preaching to the choir! The only thing I can say is that in my opinion the PKD Foundation, as opposed to any other organization that I am aware of, has been trying its best to fulfill the needs of PKD patients not just here in the USA, but globally. Truly, an awesome task for an office of only 55 employees, don’t you think? Unlike other not for profit groups we are small, yet lofty in our goals. We truly put our money where our hearts and our mouths are…..’to promote programs of research, education, advocacy, awareness, and support in order to discover treatments and a cure for PKD and improve the lives of all it affects.’ If it looks as though we have turned into nothing more than a fund raising machine to support research, then I am both embarrassed and sorry for that….I promise, that is not our intention.
In the 10 years that I have been part of the PKDF, I have watched an evolution of growth….some of it painful, some of it extraordinarily wonderful! We cannot offer the support you talk about without beefing up our infrastructure. A case in point….this year we have added an education department that is now cranking out webinars to help educate and support those who (1) do not get adequate info from their health care professionals, (2) do not have the resources to go to PKD conventions (3) who may feel too busy in their lives to take the time out of their day to go to a support/education meeting (4) or simply have zero resources where they live. However, people still need to take advantage of this free service…..many do, many do not. What more can we do about that?
As an FYI…..there has been some discussion about adjusting that ‘tag line’ you mentioned. We are acutely aware of the fact that our organization has morphed into something much more than it’s originally intended ‘research organization for PKD.’ While finding a treatment and cure would be awesome, there are still 12.5 million men, women, and children out there with various degrees of expectations from the PKDF. For me, finding out that I was not the only one in the world with PKD was my ‘whew’ moment….but then learning about the horrors of the disease from people in online chat rooms became my ‘oh my god’ moment.
I personally find it therapeutic to talk about PKD, the plight of the disease, my personal story, the horrors people face, the triumphs of those who overcome PKD challenges, etc.,…..but how many people are ‘out there’ like us? My guess is not nearly enough people have found their voice with PKD yet the way they have with breast cancer. I lost my mother-in-law exactly 31 year ago to breast cancer because she feared mastectomy and watched a tumor grow under her arm until she could no longer hide it. While I blame her for not acting and for robbing my children of the opportunity to love here and grow up with her, I understand that she was paralyzed by a fear back then that ultimately lead to her death. I believe that women through the years have found their voice…after all, we are 50% of the population at risk for this! But also, it has taken at least 25 years since her death….it is a painfully slow process for all diseases to find patients with a ‘voice.’
My question, however, is this…..when will PKD families, outside of the few we have now, find their voice and loudly proclaim that PKD IS KILLING OUR FAMILIES! Also, when will doctors take us seriously? When will nephrologists take a more proactive role the way oncologists have with breast cancer patients? When will they refer their PKD patients to our chapters? When will they refer their patients to the PKDF for correct info? When will they realize that PKD patients need more than just a blood and urine draw and a ‘call me if you have any issues between now and your next visit.’? All the oncology groups here in Memphis offer hope and healing support for cancer patients….how many nephrology groups offer emotional support for patients in ESRD, on dialysis, or transplant?
So Richie….I share you fire, your passion, your commitment to try to help PKD patients….but as my father used to say, ‘you can lead a horse to water but you can’t make him drink.’ As frustrating as this is, the bottom line for me is that we do the best we can with what we have to work with. My hope is that one day everyone will ‘get it’ and the support you and I think should be available will be waiting for people when they want it, need it, and seek it.
Have a great day,
Karyn
Karyn,
First of all, let me offer my gratitiude for the time and effort you’ve put in to respond and create this “thread.”
The example of your mother-in-law is precisely what I’m talking about.
A “process” took place (and is still taking place) in these 25-30 years for women to “find their voices” in the challenge of breast cancer.
What is this process? How can this process be applied to the “world” of PKD? Surely, it need not take 25 years!
As for your properly asked “When will…” questions, my training suggests that these questions be changed to,
“What has to happen for…?”
Clearly, “If you keep doing what you’ve been doing, you’ll keep getting what you’ve been getting.”
What are the people in the “cancer world” doing that is, and has been, helpful that we can learn from, and yes, copy and modify for the “PKD world?”
Each one of us can only do so much. But, if an organized “task force” can be developed, to discover strategies and tactics that are the components of the “process” that women have undergone, perhaps your “hope” will become a reality!
I am acquainted with Bill. I am aware of the mutual frustrations we share. I am certainly open to further communication.
Peac and Blessings!
Coach Richie Perl