There are Heroes Among Us

Today, I learned about a hero. His name is Tony and though his name may never be a household word and you may not recognize him on the street, he is a true hero in my book. Today he is undergoing experimental DBS Plus surgery.

We live in an incredible time of medical advances. Every day scientists find new treatments and sometimes even cures for horrible diseases. Along that journey, real people are volunteering to try out these treatments before they are proven to help or not. These heroes are real folks like you and me suffering from a plethora of illnesses. Today, I thank God for Tony and for his courage. I thank God for those who have been there before him getting poked and prodded in the name of research. I thank God for the doctors that are in the middle of the battle with us and refuse to give up. Tony, you are a brave, valiant warrior. You have a prayer warrior in me that is forever thankful. I pray that if the opportunity ever presents itself, I can be as brave as Tony.

Comments

Big Dreams Not Happening

If only we could live in a world where everyone put their innate talents and gifts together and worked to solve problems, we might have a world with less illness and suffering. It would also be a world with less multibillion dollar companies. I understand that people need to make a living and I also understand that competition between companies can sometimes spur new thought and development of ideas. I understand the need for regulations and standards for safety. I understand that all of this costs money. But when you are living day in and day out with a degenerating illness that has very few treatments, and no glimpse of a cure, you really don't give a darn about any of that. You just want to get better. You want to be able to trust that you are being given the best advice about the best treatment and you don't have time to wait for it. I will continue to dream about my ideal world but I expect that it will just stay a dream....

Medication Pumps for the Trend Setters

I jest. You have to keep a sense of humor when you are living with a condition like Parkinson's. I am actually very thankful for new treatments even if they aren't pink and pretty.

Self Advocacy in a World of Red Tape

In a perfect world, a person with an illness or a disability would easily be able to get needed services and treatments. We do not live in a perfect world and often the healthcare system is littered with red tape. Patients or their care partners are tasked with jumping through hoops, waiting countless hours on hold with pharmacies or insurance companies, and waiting months to see specialists. I wish I had the solution to this problem but unfortunately, I only see it getting worse. You need to be an advocate for yourself. Here’s what has helped me: · Be persistent, be firm and be polite. · Call often. A squeaky wheel gets attention. · Stay on hold. It is frustrating but sometimes it is the only way. · If someone doesn’t have the answer you need, ask to speak with someone who does. · ...

Rock Steady Fighter

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