Strong to the end
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
As those of you who follow this blog know, Sheryl has been suffering from both PD and cancer for many years. This morning, cancer took our beloved Sheryl and she is no longer suffering. It is a comfort to know she was with me, our sons, and a few close friends for her last breaths and that she went painlessly under the care of hospice. Sheryl will continue to help all of us cope with our worldly troubles through the record of her countless articles and web postings and, of course, her book. It gave us great joy to read the comments, replies and postings that she received after each article sh ..read more
Visit website
I’m baaack!
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski The year 2022 did not get off to a good start for me, though it could have been much worse. After experiencing several instances of shortness of breath, a chest X-ray confirmed that there was fluid around my right lung. It took a week to get an appointment to have the fluid drained, and that was too long. Just as I walked up to the emergency room door with my husband, Tony, I collapsed on the ground behind my walker. He called for help and I was immediately surrounded by medical staff pumping my chest and trying to restart my heart. At this point, I was technically dead ..read more
Visit website
Sleeping better under weighted blanket
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski Nearly two-thirds of people with Parkinson’s disease struggle with sleep disturbances that negatively impact their daytime alertness and quality of life. Twenty-three  years into my own journey with Parkinson’s, I average only four to five hours of sleep a night, far less than the seven to nine hours recommended to enable healthy adults to function best.   Over the years, I have tried everything from prescription sleep aids, antidepressants, and melatonin to touchless massage, infrared beds, and crystal therapy. Nothing helped my sleep is ..read more
Visit website
Drug Holiday? Not for me!
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski With my most recent CT scan showing my cancer continuing to grow and spread, my gyne-oncologist urged me to take a “drug holiday.” This would help determine if my medication is still working or if I can safely discontinue it, reducing many unwanted side effects and enjoying a better quality of life for whatever time I have left. As appealing as a drug holiday sounds, especially to those of us who swallow more than 200 pills a week, I felt like my doctor wants me to walk off the field . That was her first mistake. I am anything but a quitter. I didn’t battle Parkinson ..read more
Visit website
Flipping phones
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski An Apple loyalist since Steve Jobs marketed his first personal computer in the late 1970’s, it saddened me to trade in my iPhone for an Android flip phone. I put off making this momentous switch for as long as I could, seeking help at my local Apple store and repeatedly calling the company’s accessibility support line. Everyone did their best to help me but could not find the right combination of settings to resolve my iPhone issues. I had no choice but to see what the Android market had to offer me. Just how critical were my iPhone issues? Very… as I could not perform eve ..read more
Visit website
Expert opinion is empowering
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski My latest CT scans reveal a recurrence of my cancer, spreading beyond my original tumor discovered six years ago. My doctor assured me that this was more common than not in the course of this disease. As long as there are treatments I have yet to try, I will keep fighting for additional time to see my two beautiful granddaughters (a one-year-old and a four-and-a half-year-old) grow up and realize their dreams. Now, some 22 years into my journey with Parkinson’s disease, and also fighting cancer, I hope I am creating fond memories for my grandchildren to have when I am gone ..read more
Visit website
Remembering another PD warrior
Living Well With Parkinsons Disease
by mydancingintherain
2y ago
By Sheryl Jedlinski Early this month, the Parkinson’s disease community lost yet another long-time patient advocate and I lost a friend of more than 20 years. Linda Herman and I met on line shortly after I was diagnosed with Parkinson’s in 1999. Only four years into her own journey, Linda had already made a name for herself as a dedicated patient advocate.  Volunteering as a research subject, Linda worked with doctors, scientists, and fellow patients, to raise awareness and advance the understanding of Parkinson’s. Her efforts helped identify new ways of treating this ..read more
Visit website
PD patients lose a strong advocate
Living Well With Parkinsons Disease
by mydancingintherain
3y ago
The Parkinson’s disease community lost one of its most influential early patient advocates with the passing of Perry Cohen, PhD on May 9. Diagnosed with Parkinson’s disease (PD) in 1996, he dedicated his remaining years to advocating for the interests of people with Parkinson’s (PWP) in the development of new therapies.    As the founder and director of the grassroots Parkinson’s Pipeline Project, Perry worked tirelessly to promote his vision of patient-centered healthcare, with the goal of improving individual health outcomes, and making patients partners ..read more
Visit website
Navigating the FOG
Living Well With Parkinsons Disease
by mydancingintherain
3y ago
By Sheryl Jedlinski I live my life on “high alert,” waiting for the next Parkinson’s disease symptom to blind side me. Most recently, the culprit was “freezing of gait” (FOG). One minute my walker and I were moving in concert up and down the aisles of a big box store; the next, my feet suddenly stopped moving forward, despite my obvious desire to keep walking. It was as if they were glued to the ground. Standing like a statue, my hands tightly gripping my walker, I felt invisible. How else could I explain why other shoppers zip around me without so much as an “Excuse me,” let alone an offer o ..read more
Visit website
No gym? No problem!
Living Well With Parkinsons Disease
by mydancingintherain
3y ago
By Sheryl Jedlinski When fitness facility operations first were curtailed to help slow the spread of the COVID-19 pandemic, I found myself locked out of my gym with no access to my personal trainer. There was a time I would have celebrated an indefinite reprieve from exercise, but having worked on and off with personal trainers for most of the 23 years I’ve had Parkinson’s disease, I knew it would exact a heavy toll on me. Regular exercise is as important as taking our Parkinson’s medications “on time, every time,” doctors tell us. While not a cure, it has helped me better manage periods of s ..read more
Visit website

Follow Living Well With Parkinsons Disease on FeedSpot

Continue with Google
Continue with Apple
OR