My mom is a fun-loving spirit and a real trooper who taught me all I know about sarcasm. (You’ve been warned….!) In spite of that, you’d never really know that she has pretty much lived with pain her entire life, as she doesn’t usually complain. As a child, she broke her collarbone … twice, and she had polio as a young teenager, before the vaccine was developed. As a result, she has experienced much physical difficulty throughout her days. She always tired out quickly, so by the end of the day when she made several trips to the basement for laundry and then lugged it to the upstairs bedrooms, plus several more trips up to put us to bed, she was exhausted.
I can remember this condition worsening as I was in high school. It didn’t help her that I was involved in varsity sports and my dad liked to drag Mom around to all of my competitions, and still expect her to put on a nice supper, etc. It wasn’t until she was in her late 50s that she was formally diagnosed with Post-Polio Syndrome. This diagnosis explained many things and validated for her that the tiredness “wasn’t all in her head”, nor was she “just lazy”, as some people hurtfully accused her of.
Post-Polio Syndrome, or PPS, affects polio survivors 30 to 40 years after the initial illness. According to my mom, PPS is way worse than the original bout of polio, as she has been battling it for over 45 years. She has been dealing with breathing and swallowing problems (both bad enough for independent 911 visits to the hospital in 2017), less tolerance of cold temperatures (luckily we in the Midwest are pros at the art of layering), increased susceptibility to bladder and urinary tract infections (she’s had 3 already in 2019), and progressive muscle and joint pain and weakness, including atrophy. This last symptom has had the most impact to her over the years.
Up until the summer of 2017, Mom could still get around the house on her own. Then, almost overnight it seemed, she felt considerably weaker. All of her muscles are extremely weak, if not completely “gone”. Her leg muscles no longer allow her to stand for any length of time. Her “core” muscles are non-existent and I have to lift her legs onto and off the bed as she is not able to. This also affects her breathing as her diaphragm muscle is very weak. She can no longer walk without support from me (and her tricked-out walker). The muscles in the right side of her chest are completely atrophied according to one of her doctors, and she has less than 40% remaining of her left side chest muscles.
Because of mom’s PPS-induced inactivity, in 2016 she developed pressure sores on her “sit upon”, as she likes to refer to “it” as. At their worst, they were deep 3rd degree sores, but with the help of a home-visit wound-care nurse and her bag of tricks, her skin healed within about 3 months. During one of her hospital stays during that time, the attending physician referred her for an at-home hospital bed with a special pressure release mattress. It has been extremely helpful, but has pretty much rendered Mom as bedridden since. Even though her skin is topically healed, she still complains of similar feeling pain as when she had open wounds.
Next on the list are heart issues that began about 20 years ago when she suffered her first heart attack while living in Florida. Turns out she has a family herstory of cardiac troubles (see what I did there?!!), in that her sister, aunt, mother and grandmother all passed due to a heart issue. At the time of that heart attack, I was living in Hawai’i and both of my brothers lived in Milwaukee. So, my parents were all alone when this happened. As soon as Mom was strong enough, my parents sold their house and moved back to (freezing cold) Milwaukee where they would have some support in that type of an emergency.
Now, mom’s heart condition has progressed to congestive heart failure with additional medications and restricted liquids and sodium. She enjoyed a hospital-free 2018, but suffered a minor heart attack at the end of January of this year. Thankfully, there was no additional damage to the heart and she returned home with a slight tweak of medications.
Mom experiences chest pains daily, but we have learned that they may not be heart related. In 2017, her cardiologist shared they can be from the PPS as the muscles continue to atrophy, or they can be kidney disease related. They also can result from physical activity, like when she gets in and out of bed to take a trip to the commode just 3-feet away. This new knowledge severely reduced the number of 911 calls she had me make. (Yay!) Now we have a “checklist” of remedies that we go through to see if the chest pains subside on their own before dialing 911.
In addition to the breathing issues caused by PPS, they are also exacerbated by COPD. Mom never smoked a day in her life, but unfortunately my dad did and, therefore, her COPD is due to second-hand smoke. We experienced a few 911 visits to the hospital in 2017 because of an extreme difficulty in breathing. The first responders would give her oxygen during the ambulance ride, and the ER attendants would follow up with it too, which always made her feel better almost immediately. At each visit, mom requested the hospital test her to see if she was eligible for oxygen at home, but her finger always failed her. Instead, she has a nebulizer to use as needed, along with an oxygen concentrator machine that my brother, who is a dentist, was able to obtain. It is a noisy machine, but a godsend and helps her calm down and relax enough to eventually fall asleep.
So, that’s Mom’s current state of affairs in a nutshell. Thankfully, she has several activities that she can still enjoy and also use as distractions from her constant pain. She is an avid reader, “plays” on her iPad, watches old movies and all Brewer baseball games. She also loves to knit — her project for 2019 is to make all sizes of baby hats, including preemies, and donate them to area hospitals.
I’d love to hear if anyone else is dealing with PPS. Thankfully, her generation is the last to deal with it. Unfortunately, this means there aren’t many physicians that specialize in PPS, as it is a “dying” disease. So, we have basically taught ourselves about it and continue to research effective ways for her to cope with the symptoms. Please comment below with your experiences with PPS, or email me directly at email@example.com.
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