Favorite Resources Part 3

This month's favorite resource is the Aware in Care Kit provided by the Parkinson's Foundation. The Aware in Care Kit is a hospital kit for people with Parkinson's.

Unfortunately, many medical professionals in the hospital setting are not familiar enough with Parkinson's to understand the specific needs of a person living with PD. The Parkinson's Foundation notes that three out of four people with Parkinson's will not receive their medications on time when staying in the hospital and this can cause unnecessary complications. The kit contains fact sheets on the necessity of getting medications on time, a list of medications that may be contraindicated for people with Parkinson's, a Parkinson's ID bracelet, a hospital action plan and information for specific things like Duopa and DBS. It is recommended to keep a supply of your current medications in the bag to bring with you on any hospital stay. Medications must be current and in their original containers. You can order an Aware in Care Kit here.

The kit is free but you pay shipping. You can also download all the printed materials in the kit for free here.

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

Search This Blog