Tips for Caregivers
Your article, “Ready to Roll” (June/July 2025) got me thinking. I am a caregiver for my wife of 35 years and have her home. Having been in the safety industry for a good many years, I wonder if caregivers think to notify local fire/EMS/police of their spouse or family member who might be on an upper/lower level in the event of emergency situations. Many times, we tend to address vital needs for someone with an illness and fail to consider the “simpler” things that often get overlooked. —Lee R. Longe, Jackson, GA
My husband, Dr. John Pauze, passed away several months ago after a long struggle with Parkinson's disease. Regarding your article, I totally agree with the patient facing continuous decline in physical function. Brain fog was a major issue for him. I bought a whiteboard, and with a permanent marker, I drew nine lines across and listed his medicines on each line and seven lines down the board to represent the days of the week. I would check off and mark the daily dosages he had been given for the day, and the next morning, I could erase the board so he could start fresh. It was much easier than the individual plastic reminder cases that are hard for elderly patients to flip open.
I really enjoy your magazine. It is very comforting for caregivers to know they are experiencing normal events and also that it is okay to have a 10-minute pity party and then dry your eyes and get back to work. —Bonnie Pauze, Stafford, VA
Exploring Options
I have trigeminal neuralgia, and things that help include supportive friends, taking walks, traveling, distraction techniques, reading, journaling, and bird watching. Keeping a daily journal of all the things you did accomplish is a great way to see on paper what you are capable of doing. This has all been so hard for me because I used to be such an active person, but I just need to be present and do what I can each day to keep myself happy and in shape.
Exploring other options if you can is something that you have the right to do. You really have to be strong both physically and mentally. Support is everything. Accepting the situation and seeing a therapist helps, too. —Laura Hunnewell, Chicago, IL
Similar Journeys
Please accept my gratitude for the outstanding article on Rep. Jennifer Wexton's journey with progressive supranuclear palsy (PSP) (“Former Representative Jennifer Wexton Breaks Barriers with AI-Generated Voice Amid PSP Battle” April/May 2025). Of course, the accolades go to her for sharing and reliving her challenge with this disease foremost.
My husband passed away on Oct. 21, 2024, from PSP. He was diagnosed with Parkinson's disease in 2017 at 71 years of age. Two years later, his diagnosis was changed to PSP. So much of [Rep. Wexton's] story was his story in terms of disease progression and diminishing independent life skills. With the support of family, hospice, and staff in our assisted living facility, he never fell, never had pneumonia, and passed at home.
Thank you for bringing her brave, motivated existence with this neurodegenerative illness to us, your readers. —Melissa H. Zaletski, San Diego, CA
Insight into Prior Authorization
I have comments about the article, “What are Prior Authorizations?” (April/May 2025). I've been diagnosed with myasthenia gravis for almost 10 years. The treatments are insanely expensive, and I have faced numerous requests for PA [prior authorization] and initial denials. While it is often best for one's own clinician to appeal on our behalf, I have had doctors who refused to appeal. I have had great success appealing on my own behalf. I wish everyone knew that this is an option. We know ourselves better than anyone. Once you receive a denial, the insurance company has to give you a letter explaining their reasons. A patient can write a letter of appeal which addresses each one of those reasons. It can be highly successful if a clinician is less than timely, or unwilling. —Kerry Holder, Six Mile, SC
Spotlight on CRPS
It was nice to see the story on complex regional pain syndrome (CRPS) (“What is Complex Regional Pain Syndrome?” April/May 2025). I have had CRPS for over 50 years. Like many chronic CRPS patients, my daily pain is generally rated about an 8 to 9 [out of 10] on the pain scale. I tried innumerable treatments, including medications, hyperbaric oxygen therapy, and low-dose ketamine therapy. I spent a number of years in a wheelchair. I was blessed with parents and a loving wife who fought for me and supported me throughout.
My family and I used to run an international CRPS support organization for patients and their families, American RSDHope. The best part was always connecting patients and their loved ones with others dealing with similar issues.
Find out all you can about your disease from experts who understand it. Reach out to others for help/support, and always remember you are not alone and this life is temporary. Thank you for sharing our disease. —Keith Orsini, Taylorsville, NC
CORRECTION: A story in the June/July issue about agrihoods misidentified the writer. Alice Garbarini Hurley was the author. We regret the error.
