Something Needs to Change

The research is out there. The case studies are available. Exercise helps those with Parkinson's. In my opinion, it isn't just beneficial, but it is necessary if you want to live a full life with PD.

I know the docs are busy but this isn't brand new research and those being diagnosed need to know that exercise will help them and the sooner they start, the better. It is crucial that the word gets out to the patients...those who live day in and day out with this disease. They need to know it on the day of diagnosis. How do we get the word out if the doctors aren't telling the patients?

It is left up to the patient and/or care partner to do the research and find out for themselves. On top of dealing with a life changing diagnosis, you now have to do your own research, be your own advocate, and find your way to better health on your own.

I wish I could personally appeal to every neurologist out there and show them the research and show them what I have done for myself and tell them what I have seen in others. I don't know if they would even listen or believe it's true. Maybe we need to bring Parkinson's patients into the medical schools and nursing schools to bring awareness and show them real living examples of the benefits of exercise.

If you sense frustration in my writing, it is because I hear of patients who have been living with PD for months or sometimes years and are not aware of how they can help themselves.

I'm not sure of the solution to this problem but we need to work together to figure it out.

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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