wellness

Aspiration Pneumonia is a leading factor in the death of up to 70% of People with Parkinson’s Disease.

Swallowing is kind of an important skill to have. The ability to get foods and liquids past the windpipe or trachea and into the esophagus is complicated and involves different muscular contractions that do not work as well with PD. This difficulty is known as dysphagia, for Parkinson’s patients it is usually oropharyngeal dysphasia, which refers specifically to the transfer process. That muscular process that my husband uses to get food and water into his body is wonky and causes him to aspirate or allow substances to enter his windpipe. This often leads to aspiration pneumonia which can kill him. I had never heard of this before it was listed as a contributing factor in my father’s death from Parkinson’s.

We are working on a few different things that help but unfortunately my husband still has episodes of aspiration. He is in speech therapy, recognizing that the muscles that help him speak are also the muscles he needs to chew and swallow. Another technique he uses is breathing practice which he does on his own, he calls it his huff and puffs. We ordered a tool called an EMST150(Expiratory Muscle Strength Trainer) that he uses several times a week. Blowing short puffs into the device helps build muscle strength in his throat. My task is to have an awareness of the foods we eat. I work with him to make sure that anything I put in front of him is easy to chew and swallow.

He has undergone 2 swallow tests in the past few years, his most recent showed that he appears to be aspirating small amounts of liquids even without the cough or choking. Our next step may be to thicken his drinks but I don’t think we’re quite there yet. In the meantime, I try to be present whenever he is eating or drinking and he does his part by exercising those muscles.

Find more about the connection between aspiration pneumonia and PD in this study Risk and mortality of aspiration pneumonia in Parkinson’s disease: a nationwide database study.

Analyzing data submitted by current PD patients is giving researchers a clearer picture of the disease and may provide beneficial information for your journey.

I came across a report in Neuroscience News last week that talked about how the non-motor  symptoms of Parkinson’s appear to present differently based on which side of the body is impacted first. The study indicated that people whose motor symptoms started on the left side, like my husband, are more prone to depression and anxiety whereas patients who felt PD first on the right side reported more issues with cognitive decline and potential for dementia. Their work didn’t clarify how to know which of those patients would actually develop any cognitive challenges, it simply looked at historical data and found these relationships. Perhaps that will become clearer as they dig deeper.

There is a saying that when you’ve seen one person with Parkinson’s, you’ve seen one person with Parkinson’s. This report, coming out of the University of Geneva, looked at data collected in 80 studies and over 50 years and found that assertion may not be completely true. There are likenesses among PD patients, even though they may not always be obvious, and those similarities are going to help drive better treatments in the future.

I have always felt that Parkinson’s is a journey without a road map but, just maybe, these new reports will help us get there. The hope is that this information may be useful in creating more personalized treatment plans at an earlier point in the diagnosis. Even though my husband is at more advanced stages with his disease, this information shines a little light on where we have been and may be going and that may let us all know what to watch out for as we continue on our journey.  

This article was found in the Neuroscience News Newsletter dated July 7th, 2025. Click on the link but you may have to scroll down to find it.  

Parkinson’s and Pro-biotics can be a useful combination when trying to manage gut issues.

My husband recently had a bout of intestinal upset accompanied by about 2 weeks of intense diarrhea. We worked to keep him hydrated and, since he never exhibited a fever, he didn’t visit urgent care until it was too late for them to be able to detect what was causing the problem. As things started to settle, his caregiver mentioned that probiotics might be helpful in getting his gut back to a normal state. Knowing that my husband is not good at eating lots of green vegetables nor does he like yogurts or pickled foods that might contain live cultures, I decided to try a probiotic pill. We spoke with his neurologist about this and she agreed that it couldn’t hurt.

Let me back up a bit to say that before this episode my husband used Miralax regularly to keep things moving. He went off it when the diarrhea hit and hadn’t started it again. The probiotic we chose was a generic version from the local drug store. He took one a day with his breakfast. We saw a change in his movements within about a week, the consistency was easier to control and he was more regular. We decided to try adding the Miralax back into the mix, but it seemed to make things worse so are now stopping the laxative to see what the probiotics can do on their own. 

Studies have been done on the gut microbiome and how it influences Parkinson’s Disease. I really didn’t look into that topic choosing to focus instead on the impact to his bowels and issues with constipation. So far things are looking good, if he also gets better absorption of his carbidopa levodopa, then that will make it even better. Anything that makes our daily lives even a little bit better is a win in my book.

My information for this blog came from observing my husband’s experience and the following two websites: https://www.apdaparkinson.org/article/probiotics-and-parkinsons-disease/ and https://www.nccih.nih.gov/health/probiotics-usefulness-and-safety. I am not advocating for the anyone to use Probiotics but do encourage everyone to research this topic.

Even when not actively engaged in care for your loved one, you may find that they are always present in your thoughts.

I think about the Willie Nelson song, “Always on my mind”. My husband is always on my mind, that is to say I am always on alert, listening to make sure all is going well for him. It’s not necessarily a bad thing, but it is also not always a necessary thing. Nor is it a healthy thing for me.

When I am constantly on alert, the stress causes my cortisol levels to rise. Many studies have been done with family caregivers of people with dementia, but I am here to say that the same feelings exist in any person caring for a loved one with a chronic illness. It’s like I am always in a fight or flight mode, waiting for the next disaster to happen. I love those times when my husband takes a nap or sits down to read for a while because I can let go and take a break. I’m able to step into standby mode for a little while which gives my cortisol levels a chance to normalize. And yet I will catch myself looking over to make sure he’s still breathing, how crazy is that?

As a CarePartner, I know I must stay healthy in order to provide the care he needs, but how can I do that when just being here for him may be a threat to my wellbeing? There are techniques for alleviating stress, I know them and need to use them. There are opportunities for me to get away, I must take advantage of them. Finally, I can maintain an awareness of my own feelings and do my best to keep my husband always on my heart, just maybe not always on my mind.

For more information on what cortisol is and how it functions in our bodies check out this article I found on the Cleveland Clinic website entitled simply Cortisol.

Exercise your body, exercise your mind and exercise your soul every day to keep your entire self flexible and prepared for whatever life brings.

I put my body first because a healthy and relatively pain-free body is essential when living with someone who has a chronic illness. I know how important working out is for my husband, I don’t always remember that it is just as important for me. Exercising, getting the blood flowing throughout my body, is also key to keeping my brain healthy so it can manage everything else. Having a healthy body and brain gives me the energy, and capacity, to provide the support he needs while continuing to pursue my personal interests and self-care.

In addition to physical activity every day, I like to find ways to stretch my mind. I read the local newspaper daily and try to stay informed about current events. I find time for computer games on my tablet, solitaire and sudoku or matching games that give different challenges. I follow several Parkinson’s research websites looking for answers to challenges we face. The older I get, the more often I find myself standing in a room wondering why I am there. Any activities that might help me maintain the brain I have left has to be good, right?

Finally, I take time every day to exercise (or really pamper) my soul. I can only spend so much of my time in the CarePartner role before I find myself getting frustrated and tired. My way of fighting that is to find a space in my day to reconnect to myself. My husband takes naps daily which gives me a chance to focus on my own needs. This is my time to write or play games. My favorite activity is writing because it gives me the opportunity to vent negative feelings in a safe way rather than put them out into the world around us. I journal what’s happening in my day, but once that is done I work on creative short stories and poems. The creative writing allows me to escape into a different reality for a while. That hour or so gives me a break midday to rest, reflect and refresh my soul. He needs the sleep and I need the quiet. It really works well for both of us.