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:
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
Richie,
I think your point is very well taken and one that we at the PKD Foundation embraces with open arms. Just recently a member of our local Chapter contacted me about the possibility of once again having meetings focused entirely on support….that one-to-one relationship you referred to that can be so very beneficial for those struggling to cope with the challenges within the world of PKD. While this type of meeting tends to give way to education seminars and business meetings to fulfill other aspects of our mission (fund raising for research, education, advocacy and awareness programs), we should not lose sight of the fact that there is a huge emotional component to this disease that cannot be denied.
Needless to say, basic support meetings in our area are once again being planned and will take place on a regular basis very soon. In fact, it was my own need for emotional support after reeling in this crazy diagnosis that motivated me to connect with the PKD Foundation and begin this chapter nearly 10 years ago. I was desperate to connect with others and better understand the ups, downs, ins, and outs, of PKD…..the good, the bad, and the ugly.
PKD is a journey for sure and can be a lonely pathetic one if going it alone. Thank you for caring to help….we truly appreciate your wise perspective.
Karyn
Richie,your idea is great. I’ve been feeling very alone with this disease and find it very trying. Having a buddy or support group would be great…Thanks