Non-Motor Symptoms of Advanced Parkinson's

[@suetreadgold2482]

Thank you for all the information you give to us. I have been diagnosed around 4 years. When I’m feeling down about my diagnosis I can usually find something that will make me less isolated. Belong to a support group and we have a specific PD exercise class now funded by our local council. Living in Australia 🇦🇺

[@Michael-he7xn]

There’s soooo much applicable to my situation right now. Thank you very much for posting.

[@davisphinneyfdn]

We're glad you found value in this. We're here for you!

[@Michael-he7xn]

Thanks for doing what you do guys.

[@noelig4152]

I'm in the PERSEVERE Study, and I recommend it for all who qualify. The material is pertinent. It requires less than an hour a week; longer if you have a mentor; or for a few extra requirements of the study. My mentor has prepared me for unexpected circumstances and is a wealth of info.

[@davisphinneyfdn]

Thanks for sharing your perspective on the study!

[@chrisgoodman1921]

I am now just listening to this. I went to two Neurologist’s 2 years ago. The first was not a movement order specialist. But did recommend a DAT scan when it came back saying I had Parkinsonism, Lewy Body Dementia, Supra Nuclear something or multiple ……She said. Come back in a year & maybe you will have a symptom I can address. Second one said you have Parkinsonism, but it could be one 100 diseases. Come back in 3 months & we will evaluate further. Both said I’ll give you medicine if you want it. I went to Rock Steady boxing. I had stiffness, dragging foot, hunched over shoulders. But my biggest complaint was the fog in my head. It was never clear. I was falling asleep every day in the afternoon. When I was in a group I felt like I was watching a movie, I could not keep up with the conversation, everyone seemed in the room but distant. I kept asking everyone at Ro k Steady did they not have anything like that (over 40 people). Finally I got in at Mayo. God provided. They listened. They addressed the physical right away with Carb/levodopa. My physical symptoms seemed to go away using that the next 3 months. But then they addressed cognition, REM, mood & behavior, insomnia ….urgency y &frequency i have added autonomic symptoms, swallowing. Balance…..a number of issues that have occurred over the last 6 years. My wife & I go to each appointment with a medication list & time each is taken. Any changes. They would ask which 1 or 2 is most important. It was addressed. Follow ups. Is email or call until the next appt. I have LBD w Parkinsonism. We knew after the second meeting it was more than a movement disorder. But 3 PET scans later, a 5 hour cognition test, and then as the symptom list grows around 2021 he called it LBD. DR asked the first time we could recall the foginess, it had been a year. So now he says it’s been 7 years. He has given me a great quality of life. 3 years ago we hiked Angels Landing in Zion. 2 years ago Mt Rainer in a 12 foot snow bed. 1 year ago Mt Rainer in September. But this June, I literally tried to stand & it was as if my legs were rubber. We went to the local PT Neuro Center. Helped movement some, but they did not understand LBD. When the PT said she thought it was just in my head, I really did not have a problem. My DR has written an RX for the new pump, if we can get approved, minimize the wearing off. Sorry this has been so long. But I encourage people to pursue every option. Good luck

[@davisphinneyfdn]

Thanks for sharing your story. It's not uncommon for people to have a long road to a clear diagnosis. Here is a blog post that might help those in the middle of that: davisphinneyfoundation.org/parkinsons-parkinsonism/

[@NancyMellon-b8d]

This was so good. You explain everything so well. Thabk you!❤

[@davisphinneyfdn]

Thanks for the feedback, Nancy. We're grateful to Dr. Fleisher for sharing her time and expertise.

[@SuzanneHackett-z4h]

thank you.. any thoughts on medical probiotics? I currently take Neuralli which is supposed to help with gut/brain impacts on Parkinson's.

[@davisphinneyfdn]

At this time, there isn't enough clear evidence to make a universal recommendation about probiotics for Parkinson's. It's important to note that the impact of probiotics likely depends on many factors, from manufacturing protocols (which have variable regulation) to the gut microbiome of the person consuming the probiotic. Multiple studies have found that probiotics can help with digestive impacts and gut health for people with Parkinson's. However, there are so many variables at play that at present there is not an easy answer on this subject at present.

[@roberthead375]

Thank you for all you do. Davis Phinney was one of the first places for information I found after my diagnosis in late July of this year. Your information has really helped me not feel so isolated with what is happening. Symptoms, issues etc. I have seen significant improvement in my motor symptoms with sinemet, low dose naltrexone and Rasagiline. My non motor symptoms have not improved as much and have issues with agitation, anxiety, apathy, multi-tasking and peripheral hallucination Speaking of that, and I may be the only one, but I find the blurred background and the "morphing" edits somewhat difficult to watch. Although I do recognize them for what they are, there is a split second I wonder if it's Parkinsons related. Just an observation. This topic of addressing non motor symptoms is very informative and helpful. Thanks.

[@davisphinneyfdn]

Thanks for your comment and your feedback. We're so glad you've found our content helpful. With regard to the morphing edits: that these could be difficult is understandable. We'll explore whether there may be suitable alternatives.

[@jvargas454]

May I ask if there is a down side of using edible cannibis everyday to sleep? Before being diagnosed with Parkinson, I was not a user of cannibis, but having tried it, I am aware of the affects. I have had a long battle with insomia. It was not uncommon to finally fall asleep exhausted at 3:00 am, then waking at 6:00 am. I don't use it to get high and I only use enough to get through the night, which is normally about 6 hours.

[@davisphinneyfdn]

Thanks for your question. There has not been much high-quality research into extended use of cannabis by people with Parkinson's. There are multiple small studies and anecdotal reports that show positive impacts on sleep, though. There are some general risks to be careful about: chief among the risks is the risk of falling when waking (for example, to go to the bathroom, due to the some of the effects of cannabis. Other risks include some elevated enzymes levels, which may be impacted by the specific strain of cannabis ingested, and worsening of cognitive symptoms, but again, this list isn't comprehensive and there has been limited research. We'll reach out to Dr. Fleisher to see if she has any additional comments to add. If you choose to use cannabis, it is a good idea to talk with your care team about this, and to seek advice about the best delivery method for you. Of course, there are also legal issues to consider, which will vary depending on where you live. Here is a 2022 report that discusses multiple studies of cannabis and Parkinson's: journals.sagepub.com/doi/full/10.3233/JPD-212923

[@jvargas454]

@@davisphinneyfdn Thank you. Yes, I did consult with my care giver and I was told to try it and see if I benefit. Cannabis is legal in my state.

[@BlairHysong]

Check out the side effects of your medication. When I was diagnosed I was sleeping 4 hours a night. I brought this with my support group and everyone said they’re getting only 4 hours also. When I looked at the side effects of two of my meds, it said sleep disruptions was possible. I stop using the patch Neupro ( I was getting red burn marks on my abdomen being sensitive to the adhesive) and another med , I forget the name. After I stopped those 2 meds, I started sleeping like a rock. I get at least 6 hours a night minimum. I do use melatonin, half a Xanax, and maybe once a week a slug of NyQuil .

[@jvargas454]

@@BlairHysong Good advice. Thanks.

[@splashesin8]

❤😊

[@edwardf.zawieruchasr.1756]

I

[@chrisgoodman1921]

I am now just listening to this. I went to two Neurologist’s 2 years ago. The first was not a movement order specialist. But did recommend a DAT scan when it came back saying I had Parkinsonism, Lewy Body Dementia, Supra Nuclear something or multiple ……She said. Come back in a year & maybe you will have a symptom I can address. Second one said you have Parkinsonism, but it could be one 100 diseases. Come back in 3 months & we will evaluate further. Both said I’ll give you medicine if you want it. I went to Rock Steady boxing. I had stiffness, dragging foot, hunched over shoulders. But my biggest complaint was the fog in my head. It was never clear. I was falling asleep every day in the afternoon. When I was in a group I felt like I was watching a movie, I could not keep up with the conversation, everyone seemed in the room but distant. I kept asking everyone at Ro k Steady did they not have anything like that (over 40 people). Finally I got in at Mayo. God provided. They listened. They addressed the physical right away with Carb/levodopa. My physical symptoms seemed to go away using that the next 3 months. But then they addressed cognition, REM, mood & behavior, insomnia ….urgency y &frequency i have added autonomic symptoms, swallowing. Balance…..a number of issues that have occurred over the last 6 years. My wife & I go to each appointment with a medication list & time each is taken. Any changes. They would ask which 1 or 2 is most important. It was addressed. Follow ups. Is email or call until the next appt. I have LBD w Parkinsonism. We knew after the second meeting it was more than a movement disorder. But 3 PET scans later, a 5 hour cognition test, and then as the symptom list grows around 2021 he called it LBD. DR asked the first time we could recall the foginess, it had been a year. So now he says it’s been 7 years. He has given me a great quality of life. 3 years ago we hiked Angels Landing in Zion. 2 years ago Mt Rainer in a 12 foot snow bed. 1 year ago Mt Rainer in September. But this June, I literally tried to stand & it was as if my legs were rubber. We went to the local PT Neuro Center. Helped movement some, but they did not understand LBD. When the PT said she thought it was just in my head, I really did not have a problem. My DR has written an RX for the new pump, if we can get approved, minimize the wearing off. Sorry this has been so long. But I encourage people to pursue every option. Good luck