Monday, May 28, 2007

Musings on attitude and healing

I've heard the stories. You know, the ones where a guy who is dying of cancer rents a ton of funny movies, spends hours a day laughing, and miraculously, he's cured.

I've worked in hospitals throughout my career as a speech pathologist, and I have seen, first hand, how a strong support system, a determined spirit, and a positive attitude can make all the difference in bouncing back and healing from major stuff. MAJOR stuff, like brain surgery and stroke.

I've read about the people who take naps and have pets have lower blood pressure, less cardiovasular issues, and all around live longer. Happy people with happy dogs.

I'm wondering if any of this applies to me. And PKD.

Obviously, a positive attitude is key in dealing with any chronic disease. We have so little control over where our body takes us, but we always have control over how it will affect us emotionally. Ok, maybe not intially when we often feel like news we get is equal to a 2x4 to the gut, but overall, long term, our attitude is one thing we can control. And a positive one only makes life more pleasant, which everybody appreciates.

But I'm wondering about the other stuff--the laughter, the determined spirit, and even the visualization therapy I've come across somewhere. You know, where you visualize something working better in your body, or you visualize a cancer tumor shrinking, or you visualize neural pathways regenerating to overcome paralysis. I have done virtually no research on the subject, but I'm sure if I Google "visualization healing", I'd come up with all kinds of stories.

And who am I to say that it's just a bunch of bunk?

Can patients of PKD approach our disease with the same kind of perspective of somebody with cancer, or a brain tumor, or paralysis? Or are we part of something different, more akin to, say, diabetes or MS? I've never heard anybody say that laughter could get rid of high sugar levels. Maybe I'm just running in the wrong crowds, though.

At the PKD conference last summer, during Q&A I asked the doctors if they had had any experience or anecdotal evidence of success with alternative therapies. As you might expect, most of the doctors scoffed at such a suggestion, except for the doctor who had recommended acupuncture as a way of alleviating symptomatic pain. This particular doctor, however, was quick to point out that acupuncture is a highly regulated field and has been clinically proven to alleviate pain. Translation: your insurance would cover it. Enough said.

The nutritionist piped in with some helpful websites, but even some of that information conflicted with other websites, and the whole thing leaves me scratching my head just a bit. And then somebody always says, "Well, if any of this stuff actually WORKED, don't you think we'd all be USING it already?"

Maybe. Maybe not.

Has anybody out there had success with alternative therapies? What do y'all think about some of the stuff we hear about that is, well, quite frankly, just a little bit out there and different? I know most people have modified their diets to try and slow down progression of PKD, and I'm totally all about that. But can the mind be as powerful a tool for healing for PKD as it has been reported to be for other ailments?

Just a thought.


stephanie said...

I have had some success with alternative therapies for pain relief and my therapist truly believes she is going to cure me ,I do not believe it and of cause if it doesn’t work it will be because I did not have faith. I just don’t buy it ,there is some evidence to suggest that stress can help some forms of cancer to grow so it makes some sense that a positive stress free life would help it but PKD isn’t caused by stress, it is genetic. On the other hand ,the doctors do not know why different people develop at different speeds ,ages and severity so there is more to learn ,one day we may find its all about attitude or alfalfa sprouts or some thing we have not thought off .

Heather O. said...


I would love to hear what kind of therapy you are doing, if you are comfortable posting that on the internet. My own personal philosophy is that alternative "energy" therapies, like acupuncture, massage and reflexology can have some effect. And at the very least, they sure make me feel good!

stephanie said...

Hi ,I have acupressure mostly with some acupunture and massage .She uses cupping for the acurpressure ,they are cups that form a sution on your skin and so are putting pressure on the points .It makes me feel very relaxed so yes even if its not doing a lot ,it makes me feel better but I did have bad flank pain before I started with her and now I have just colicky kidney pain ,much less .I am off all pain meds now so I am able to live better .Mind you ,I am very early in the disease ,my kidneys are not very big so it may not work for ever but anything that helps me funtion tll my kids are biger is a blessing.

Jullie H. said...

This is unrelated to alternative therapies, but I am also a speech pathologist with PKD. I figured I couldn't be the only one out there. I live in Las Vegas and work part time in a hospital. I have one daughter-I am also not a good pregnant person. I am the chapter/walk coordinator in LV. I love your site, even though there are others here, it is helpful to remember that there are many of us all over the country. I just started the Tolvaptan TEMPO 3/4 trial, not alternative but I am happy to be doing something after all of these years doing what I felt to be essentially nothing. Thanks for the site!

Heather O. said...

Hi, Julie, thanks for reading!