When hypoparathyroidism symptoms affect cognitive function

It's important to also focus on things that bring joy in life

Written by Bari Vapnek |

Banner for

Having hypoparathyroidism means dealing with more than just low parathyroid hormone and calcium levels. Many patients have muscle cramps, tingling in their extremities, fatigue, muscle weakness, anxiety, and depression. These extra challenges make life difficult.

After nearly 30 years of living with hypoparathyroidism, I developed stage 3 chronic kidney disease. Thankfully, the hormone replacement therapy Yorvipath (palopegteriparatide) has since helped me maintain my kidney function.

Currently, my biggest challenge is cognitive function that seems to go beyond brain fog. I often feel confused, disoriented, and forgetful, something that began to manifest last November, when I couldn’t remember my computer password. Things have gotten worse since then.

Recommended Reading
A physician uses a laser pointer to highlight the words

Daily use of hypoparathyroidism drug leads to rapid gains in kidney health

Sometimes I forget things I’ve done, and a photo on my phone will remind me about it. I also find it embarrassing when I’m talking and have to suddenly ask, “What was I just saying?”

Because of all of this, I worry about my children. I often find myself telling them the same stories repeatedly. I can tell they get frustrated, but they’re always very supportive. They’ve grown up with my hypoparathyroidism, so they understand how much it affects my daily life.

How I’ve responded

I’ve started using simple daily strategies to manage my confusion. I keep sticky notes around the house to remind me of important tasks, and I use phone alerts to jog my memory throughout the day. I keep a notebook handy to jot down things I need to remember, such as doctor appointments and errands, and I try to follow a daily routine as much as possible. These tools give me a sense of control and help me get through the tougher days.

I’ve found ways to manage my memory lapses, like using a wall calendar to keep my schedule visible. I also set out my medications before bedtime so that I remember to take them. These small steps help. They don’t fix my memory or confusion, but they do help me avoid missing things.

I’ve also been playing brain games and using the Stroop Color and Word Test, a neuropsychological test, to help strengthen my mind. Using these tools helps me restore some cognitive difficulties.

A photo from a phone shows the top of the Empire State Building, which is lit up with orange and blue lights. The blue lights are the same tone as the night sky.

The Empire State Building lights up New York City after the Knicks win the NBA championship in June. (Photo by Bari Vapnek)

Last month, I had several neurological tests. My doctors at the Marcus Neuroscience Institute in Boca Raton, Florida, told me that my brain looks healthy, and I was relieved that there were no signs of calcification (calcium deposits in the brain) or Alzheimer’s disease. The results did show, however, that I have increased memory issues, cognitive decline, trauma, post-traumatic stress disorder, and depression.

I cried as I read the report from my cognitive and psychological tests. When I have moments like that, I try to comfort myself by reaching out to a friend or taking a quiet walk outside to clear my mind. Sometimes, letting myself feel sad for a while and then talking to someone I trust helps me feel less alone.

I’m currently enrolled in Ascendis Pharma’s PaTHway60 Phase 3 clinical trial, in New York City, to test the tolerability and efficacy of palopegteriparatide at doses above 30 mcg/day in adults with hypoparathyroidism. During my first appointment, my symptoms worsened. I was fortunate to be able to discuss my neurological reports with my doctor, Mishaela Rubin, whose calm demeanor comforted me during this tough time. She reassured me that I’m not alone, and that depression is common among hypopara patients. Still, Rubin was concerned about my disorientation, poor judgment, and confusion.

Given all of this, I concluded that it’s important for me to also focus on things that bring me joy. In my case, that’s sports. I was in New York during the NBA Finals, and seeing Knicks fans fill the streets after their team won the championship offered me positive energy and some great memories, which I made sure to capture in photos and video.

I know I’ll get through this current phase of depression. The Knicks aren’t the only champions, as I feel like a champion, too. I’m part of an important clinical trial, and I’m determined to stay positive and keep showing up. Life with hypopara is anything but easy, but I believe that anything is possible as long as I continue to bravely spread my wings.


Note: Hypoparathyroidism News is a strictly news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hypoparathyroidism News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hypoparathyroidism.

Leave a comment

Fill in the required fields to post. Your email address will not be published.