Friday, November 13, 2009

November 13

Not much new on the liver front... I'll be heading up to Dallas again at the end of the month for my last round of tests, and then hopefully I'll get on the list and on my way to a new, healthier life. I want to be sure that I remain patient... it's a long process, and I may be waiting up to a year or more, depending on how much sicker I get in that time. But I'm pretty damn sick now, so I hope it doesn't take too long!

Dealing with doctors can often be a frustrating and terrifying experience. At best, we have to remember that these guys are still human and are fallible just like anyone else. We like to believe that our doctors are magicians who have all the answers to our healthcare questions, and can simply fix us as needed. But it's just not the case. The mantle of responsibility for our healthcare lies with us. No one is better qualified to care for you or your loved ones than yourself. Doctors can provide the clues, but oftentimes, it's educated guesswork at best.

It's always a good idea to take a holistic approach. Listen to your body! It will tell you everything you need to know. In my case, there's obviously no magic cure for this disease, but there's also ways for me to stay as healthy as I can until I get that transplant. In the case of an otherwise healthy individual, there's plenty of ways to prevent many forms of illness by eating right, exercising, and following the natural rhythms of life instead of getting out of sync with them.

Western medicine, as we know, is great at treating the symptoms of a medical issue. Sometimes this is a good thing. If you've had a horrible car accident and you have some 22-inch rims lodged in your ribcage, a Chinese Herbologist won't be able to do much for you. On the other hand, be careful when a doctor who's seen you for all of two minutes prescribes a cocktail full of different drugs for you to take. Medicines often treat the symptoms, not the cause. It's kind of analogous to thinking a new coat of paint will fix your car when your transmission starts to go out.

A great case for this argument is one that is very close to me, and one that I've had to put a lot of work into myself to find the right answers. A few years ago, my dad started to develop a Parkinsonian tremor in his right hand, and would start to get dizzy spells. This progressed over time, and he would start to forget simple things, or lose his train of thought. In 2007, he was diagnosed with Parkinson's. As it progressed without traditional symptoms, his doctors recanted their original diagnosis and said he had Alzheimer's. One night in the fall of 2008, he had a major episode of dementia that manifested itself in a very violent and horrifying manner. We immediately moved my mother and him in with my brother, who is a true saint and was able to give them a safe place to stay and the care that he needed at the time. My sister, my brother, my mother and I watched in horror over the next few months as his mind and his body rapidly declined to the point of being a bedridden vegetable.

To digress for a moment, I'll interject that we're talking about a relatively young, healthy guy here, as far as dementia standards go. My dad was barely 70 years old, and had always taken great care of himself... never drank or did drugs, ran 20 miles every day for years, lifted weights and did cardio constantly, and looked like Sean Connery. I used to get jealous going into the grocery store when girls younger than me would check out my dad and not even give me a glance! This guy was superman.

Back to the spring of this year, my family dealt with the waking nightmare every day as my dad quickly slipped away... the doctors would heap more drugs on top of drugs, adding morphine to the mix as he got weaker. We held hands and watched tearfully as a priest delivered the last rites to my dad one morning in March. The nurse recommended that my mom stop trying to feed him, as this was only prolonging the inevitable.

But he didn't die. Thanks to my mom's determination, he just kept hanging on by a thread. It was at this point that we all started to get fed up with this emotional rollercoaster. If he wasn't dying, then what was going on? His doctors had provided no real answers other than a fatal diagnosis after seeing him a handful of times for only a few minutes.

I started to do research online, as did my sister. We eased back off of his medications. We tried to provide some calm, peaceful environmental stimuli to keep his brain active and keep his damaged psyche feeling safe from whatever demons he thought were out to get him. I found that music and lighting were the elements he responded to best. After fifty years of focusing on making money and chasing the American dream, it was his old blues records, Van Morrison, and Willie Nelson that started to bring him back to life.

Over the summer, he began to relearn how to do things... how to walk again, talk again, feed himself, comb his hair, count to twenty. This is not how Alzheimer's works, of course. It's a steady progression that you don't return from. Angry and hopeful, we went back to his neurologists for answers. And now they're telling us they don't know what it is, but it's probably not Alzheimer's disease. They took him off of everything... and he seems to be responding quite well!

A couple of weekends ago, I met them out at Gruene Hall on a Sunday afternoon. We walked around, sat in the sunlight, and enjoyed the sounds of the music inside. He looked great with a little weight back on, and he hugged me and wished me a happy birthday and tried to form his ideas into sentences to the best of his ability. He's improving. When my mom asked if he needed his glasses, he even cracked a joke and said, "Well, yeah! I can't see shit!" and had everybody laughing out loud.

He's not back to who he was, and he may never be, but he's not dying anytime soon, either. And if it wasn't for the persistence of my saintly mother, and our refusal to accept the doctors' poor diagnosis, this would certainly not be the case.

So, to recap: Don't let a doctor determine your or your loved one's fate. They can't. That's up to you. Take responsibility for it, and heal thyself!


1 comment:

  1. Pat,

    Great post. I am certainly in agreement w/ you on modern medicine and the pharmaceutical world. How many more commercials do we need telling us to "ask our doctor" if we need their medication? Also agree with you about meds having their usefulness and appropriate applications, trauma being a great example.

    Fasting has been used for thousands of years and has been proven over and over to work healing wonders. Sometimes the body just needs to stop working and just rest for a while. I certainly wouldn't recommend it for you without doing some homework though. Worth a consult with somebody who might have more knowledge on when to and when not to fast, though.

    Glad to hear of your dad's improvement!