Hi to all you who have won the rare neurological disease lottery!
This is the first in a series of blogs where we will discuss medical tips, share medical care horror stories and come up with ideas to help SRNA raise money.
I’m not a medical professional nor have I played a doctor on TV. I am not providing medical advice. Check with your doctor before you change, add or subtract anything from your medical routine.
I invite all of you to send me your tips, which I will pass on.
- The most important decision you make when facing a chronic disease is to choose the right doctor or team of doctors. The right doctor should answer all your questions as many times as you ask. He or she should treat you with respect. Return your calls in a timely fashion. Encourage you to learn about your disease. Provide copies of medical records without hassle.
- To get the most out of a doctor’s visit, it is a good idea to bring someone with you who can listen to what the doctor says and be able to repeat it to you. When you are in crisis and/or pain, it is hard to comprehend everything you are told. You may be focused on one issue and miss other things. If the doc gives you unexpected news, you may not hear anything else!
- You also have some responsibility. Doctors respond better to patients who treat them with respect. Be honest with the doc. Withholding information out of embarrassment or any other reason hampers the doc’s effectiveness. They’ve heard it all. Realize the doctor’s time is valuable so don’t waste it. If you have several questions, write them down so you won’t forget any. Call if you need to, but don’t overdo it the calls or you may not be taken seriously when you really do need help.
- SRNA website has a list of doctors that have been vetted for knowledge, competence and compassion. If there are none listed in your area, check with support group members or other TM patients. Check with friends.
- I hate fundraising. When my son sold candy bars for Little League I’d buy them all. That said, we all want to help SRNA fund camp, research, and patient advocates! I belong to a book club that meets monthly. Each meeting, we donate $10 to a cause chosen by that month’s hostess. Other groups could try the same thing.
Next column I will focus on things your doc should have told you and didn’t!
Don’t forget to send me your tips and ideas! My email address is email@example.com. First tip will get an autographed copy of my novel, DOG DAYS!
A quick plug – I have recently written and published a novel DOG DAYS, which is about relationships between men and women, mother and daughter, lawyers and clients and people and dogs. Follow Kristin’s journey as she goes to prison after pleading guilty to a crime her boyfriend commits. After she’s released, she works at The Dignified Dog, which provides obedience training and dog daycare and is run by a psychic and animal communicator. Suitable for older teens as well as adults! All proceeds from the book go to SRNA. It’s available for $9.99 plus postage on Amazon in paperback and Kindle. If you want a signed copy, contact me at the email above! Looking forward to getting your tips and insights !
Ms. Barbara Sattler is on the Board of the Transverse Myelitis Association. While a city court magistrate in Tucson, Arizona, Barbara contracted Transverse Myelitis. She took four months to recover before returning to work and was later appointed to the superior court bench. Barbara retired in 2008. Since retirement she has written a novel and has committed the publication’s proceeds to SRNA. She is currently working on her second novel.