O.K., now that you discovered that you have an incurable progressive neurological disorder, what are you going to do about it? Start taking meds right away, wait awhile till things start to get worse, try any number of “alternative” treatments, look on Craigslist for anyone selling new brains. It turns out that the gold standard treatment is still carbidopa/levodopa, which has been around since the 1960’s. However, after awhile, you have to start taking more and more to get the same results and side effects can start to occur at the higher doses. I opted to hold off on starting PD medications for as long as could. There were however those alternative treatments…
So what is it about incurable diseases and the human propensity to try anything that is out of the realm of mainstream medicine. I have an anthropology degree and a masters in public health, so you would think I would rationally discard all those alternative treatments . Well I didn’t. You ever walked into a hospital or doctors office and see people smoking and then get inside and find out that the guy who was blowing smoke rings is the guy who is now giving you a rectal exam? I mean there is no greater association with cancer than smoking. It has been studied over and over again and costs us billions in terms of health care and loss of life (ironically smoking is the one thing that has shown to be protective against PD). Yet there is that doctor puffing away. Talk about rationalizations! Well it kind of the same thing with having an incurable disease. And it makes sense because what we can’t give up is hope. Hope that one of them might actually work in reducing symptoms or even, dare I say it, cure the damn thing! Without hope you have given in and given up. I have an abundance of hope and will never throw in the towel. I am however still rational, so let me describe a few that I did and did not try…
There was a health center I went to on the east coast (I live in California) where a healer claimed he could cure cancer and many other conditions including PD. It involved group visualization, and for a lack of a better term, Voodoo dolls. The treatments could even be done by phone. Well I visited the clinic and as I was waiting to be seen, they were setting up the room for a group. The guy setting up the chairs clearly had Parkinson’s and he wasn’t looking to good. I thought to myself, the guy works here and it clearly wasn’t helping him, so I got up and left.
There was acupuncture. It helps with so many conditions and I had been to one for back pain so I thought why not. It didn’t seem to help. But I might try it again with a different practitioner as the one I was seeing asked me which leg hurt worse! He clearly was not paying attention.
I tried CQ10 (vitamin supplement) at high doses as it had showed some promise at being neuro-protective. Well that stuff is EXPENSIVE and they ended up doing a trial and found that it wasn’t effective. The kids were overjoyed as their Christmas budget substantially increased.
I went to a chiropractor since one of my main symptoms is rigidity. And that seemed to help a bit, but again the cost of bi-weekly treatments started to impact the budget and the stiffness would return anyway within a day. But I would tell others that it is worth a shot.
So I have more to tell, but I don’t want this to become a novel, and hopefully you will want to come back for more. Hey a guy still has to work to pay the bills! 🙂