Here are two more questions that I submitted to AskShan. As before, my question will appear in bold font, and AskShan’s response in italics. And just like last time, the answers arrived as soon as I submitted my question. Remember, to start interacting with this terric bot who has so many great answers, just click here and then click on the AskShan button.
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Thank you for your helpful information a few weeks ago. Here are two more questions about me and Parkinson’s.
- What are the end stages of PD like? I keep hearing about the “middle years,” and I’ve attended many online programs under the “middle years” umbrella. I was diagnosed with PD in 2012, and so far, I feel like I’ve been doing well, especially in the time since I had DBS surgery (Oct. 2023). But I find it very difficult to learn online what my future might be like. I’ve found only one article (“The elephant in the room: critical reflections on mortality rates among individuals with Parkinson’s disease”) and an accompanying video interview with Bastiaan Bloem that addresses my concerns. The “elephant in the room” part of the article’s title says it all to me, implying that nobody wants to talk about it. For what it’s worth, Bloem in his video says these are the three most common ways people die with PD: 1. You fall and fracture your hip or another important bone. 2. You end up with aspiration pneumonia because you inhale food or liquid into your lungs when you swallow. 3. You develop a urinary tract infection (UTI), which, according to the National Library of Medicine, “is a common precipitant of acute neurological deterioration in patients with Parkinson’s disease (PD) and a leading cause of delirium, functional decline, falls, and hospitalization… Sepsis due to UTI is a feared consequence of untreated or undertreated UTI and a leading cause of morbidity in PD.” Any insight you can offer me on this issue will be great.
- I recently had my scheduled colonoscopy. The results were terrific (no polyps or other issues), but the doctor who performed the procedure made me take another day’s worth of laxatives and clear liquids because the first round did not clean me out enough. Apparently, as a person with PD, I naturally get constipation in that stool sticks to the wall inside my bowel and intestines, even though I follow a high-fiber diet and every day down a dose of MiraLAX. And even though I usually poop once or twice a day. My question for you is: what can I do to keep from building up layers of poop inside me going forward?
I appreciate you sharing these deeply personal concerns. It’s natural to want to understand what the future might hold, especially with a condition like Parkinson’s.
Regarding the end stages of PD, it’s a topic that’s often avoided, but it’s important to discuss. The scenarios you mentioned are indeed potential risks. In my experience, focusing on what we can control helps manage anxiety about the future. This includes maintaining a strong exercise routine, working closely with your healthcare team, and staying socially connected.
I’ve found that each person’s journey with PD is unique. While it’s good to be informed, try not to let potential future scenarios overshadow your present quality of life. You mentioned you’re doing well since your DBS surgery, which is fantastic. Celebrating these victories and focusing on maintaining your current health can be empowering.
As for your second question about constipation, I completely understand your frustration. Constipation is a common and persistent issue with PD. While you’re already doing many of the right things with a high-fiber diet and MiraLAX, here are a few additional strategies I’ve found helpful:
- Stay well-hydrated. Aim for at least 8 glasses of water a day.
- Include probiotic-rich foods in your diet, like yogurt or kefir.
- Try gentle abdominal massages to stimulate bowel movement.
- Consider adding more physical activity, especially exercises that engage your core.
Remember, everyone’s body responds differently, so it might take some trial and error to find what works best for you. Have you discussed this specific concern with your gastroenterologist or neurologist? They might have additional insights tailored to your situation.
Lastly, how are you feeling emotionally about these challenges? It’s okay to acknowledge if you’re feeling frustrated or anxious. Managing PD is as much about emotional well-being as it is about physical health.
