Tips for Overcoming Healthcare Challenges

For those with a rare disease like Primary Periodic Paralysis, access to affordable health care isn’t just a privilege. It’s a necessity.

What are the biggest issues when dealing with Health Care? Tons of red tape… 

There can be many challenges that pervade the health-care system, making it difficult for someone who may need to see multiple doctors each month, pay for different medications, and possibly other health care needs.

Always remember, you are your BEST advocate. You have to do your homework, be confident and stand up for yourself.

Did you know that your local representative can help advocate for you?

If you are getting “the runaround” with your healthcare provider, call your local representative. Have a written outline of the problem, the diagnosis that is relevant, all insurance information, prescribing doctor information. Show up prepared with a list of questions to ask them. Their answers will help you make the decision on whether or not you want them to be your doctor.

When it comes to the array of medical equipment for those with mobility issues, there are so many options to choose from. Sometimes it can be hard to decide what is right for you. 

  • Manual Wheelchair
  • Electric Wheelchair
  • Arm Crutches
  • Canes
  • Rolling Walker

Each of these types of equipment has its own world of customizations. It can be very overwhelming to find the right equipment for needs. Here we will dive into the nuances of medical equipment that can help you if you have mobility challenges.

Did you know you can receive help from a wheelchair seating specialist? 

Ask your doctors and consider looking up a wheelchair specialist in your area to help answer your questions about medical equipment assistance.

When you visit a seating specialist they will most likely work with a physical therapist to assess your needs. This report is sent to your insurance company along with your wheelchair order. It’s important to tell them how this wheelchair will bring you independence and how it will change your life, quality of life and make you more mobile. Be sure to include the things you would like to do and what kind of life you have. 

For instance, you may like to travel independently and need a chair that is lightweight, easy to assemble, and transport it in a car service or plane. 

For Primary Periodic Paralysis patients, you can even get a wheelchair that has an assistive device like a smart drive to avoid trigger rest after exercise attacks.

This could occur for PPP patients in situations where you are actively pushing for a long time and then sitting, like in an airport or when navigating cities independently.