Parkinson’s is not my favorite disease.

Parkinson’s Disease is not my favorite disease. I’d rather have gotten measles or mumps or something light and temporary. Unfortunately, PD came in the night in the form of restless legs syndrome, and hours of insomnia. I began stumbling on occasion, usually my left foot catching on small bumps or shadows. It was not until I went through several doctors, eventually finding a neurologist who diagnosed PD. It was a relief to put a name on that feeling of something not being quite right. Of course, now I had something to worry about, something to keep me from doing all the things I wanted to do. With the medications Azilect and Mirapex my life improved but then I decided I wanted more. I’m still working at a full time job, still enjoying life, and I’m trying new exercises and new medications. My doctor is very conservative with prescriptions but then, he doesn’t have PD. I do. I’m in a fight with PD and I’m don’t want to just slow it down or even keep it at bay. I’m trying to reclaim some of my youthful abilities. I’ve just begun to fight.
Written by Dan Roberson

4 Responses

  1. Dan,

    Thank you for the comment! I hope your brother has great success from DBS, as I expect he will. I have seen several videos on it and although invasive, seems to be the best treatment option available for PD.
    Recently I started looking into homeopathic doctors. Again I found I could not trust them. As much as I would love to, the majority of people that I called seemed to not understand that in the end, I was in charge of my health, not them. For instance, I was not willing to change my diet regime and yet all of them insisted that I would have to go over my diet and do some sort of elimination diet. For around $200 for the first visit, I couldn’t comprehend why they insisted on doing something I told them I wouldn’t do. I’m confused how we ever let doctors dictate what our choices are. I am thankful that the internet has opened up the doors for more information and options. I read scholarly articles all the time, doing my best to be as informed as time allows and I wish that the majority of doctors were motivated by doing the right thing and learning new information rather than their pocket book.
    Thank you for the kind words and the kind of support needed to keep up this site. Keep up the great stories….writing things that make people laugh can be the best cure of all!

  2. There is always hope that things change for the better. My brother has undergone DBS (deep brain stimulation) and he is looking forward to improved activity. In the meantime I’m watching studies with non-invasive spinal electrical stimulation. It shows great promise and may be out next year.
    Since I also have arthritis in both knees and have been considering two knee replacements, I’m interested in Synvisc treatments as an intermediate step. I have to make my own decisions and have to be aware of what’s out there. I don’t trust doctors to have cutting edge knowledge. Neither do I believe they always consider patient needs. Sometimes it’s all about what insurance will pay or what the patient can pay.
    Not all doctors go into practice wanting to heal patients. Most expect to be well paid, whether the patient lives or dies.The doctor has been trained to perform but he/she is not god and most of them rely on salespeople for information rather than doing their own research.
    It is good that you are helping people stay informed. Keep up the good work.

  3. Hi Dan,

    This question is fairly debatable but a lot of research shows several factors which increase your chances of getting PD. Head trauma, DDT and Paraquat pesticides, genetics and being male. So if you think about it, if you’re a male and have been exposed to those pesticides, suffered from a head trauma at some point and it’s in your family, then your chances are really high you’ll get Parkinson’s…..at least that’s what I get from it. As far as deterioration goes, you just can never tell. You could be one of the lucky ones where your disease progresses very slowly. I believe in doing your best to keep up with research so that you can try things decades before there’s proof that it works. Coenzyme Q10 is a good example of that one. Please check out that post in particular, along with LDN. The newest supplement I’m trying, called Polypodium Leucotomos is suppose to be great for Alzheimer’s. If nothing else, it guards you from the sun and lessens your chance of skin cancer. Knowing that it’s good for the brain, it’s also yet one more thing you should consider taking to stop the progression of PD. Joining a support group is helpful to. http://www.dailystrength.com has been a life saver for me. I think it’s especially hard to have a disease that’s progressive if the people around you aren’t incredibly supportive. Sure self pity is bound to strike us from time to time. But how can it not? I know for me, I’m always researching and learning so much that, there’s plenty of information out there that can be downright scary. Living in reality is important too. Having a progressive disease is frightening and the best we can do is learn all that we can, take whatever we think could be helpful, surround ourself with loving supportive people, and find new ways every day to enjoy life. Keep us posted on your progress.
    Take care,
    Sarah

  4. My younger brother recently asked, “How do you get Parkinson’s?” He was evidently concerned about his own chances of getting the disease. Afterall, I have PD and our older brother has PD. Is it caused by pesticides or is it genetic? Will there be a cure in the near future? Is my deterioration due to PD or the aging process? At work I’ve been told I need to quit because of PD. At home my wife tells me during a phase that I’m full of self pity. Everyday is not the same. Most days I smile at the world and enjoy everything. But some days are a struggle. I’m learning that pain lets me know I’m alive. No one wants to hear me complain so I smile and wade through another day.

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