Thanks for your comment. During all of our live recordings we do have someone in the chat who distributes questions to the interviewer. That person also documents questions that don't get addressed live.

This is Chris from the Davis Phinney Foundation's content team. Thanks for your comment. You're not alone in this perspective. In fact, there was an article published wherein a group of clinicians and researchers suggested changing from YOPD (young onset Parkinson's) to EOPD (early onset Parkinson's)--pmc.ncbi.nlm.nih.gov/articles/PMC9547138/. After consulting with the Foundation's ambassadors and other people living with YOPD, the Foundation learned that the vast majority preferred YOPD over EOPD. As someone who was diagnosed with Parkinson's at 37, I have thought about this for myself, and while I go back and forth, I personally prefer YOPD because it seems more accurate and precise than EOPD. For example, YOPD puts my Parkinson's in an understandable context: compared to the more common age of onset--the last I read was that the average age of onset is 60--I was, in fact, young. All that said, I get what you mean about not feeling "young." There are physical and psychological impacts of Parkinson's that contribute to me not feeling especially "young."

We're here for you!

Hello - Here are a few resources related to this topic: davisphinneyfoundation.org/6-ways-to-reduce-parkinsons-freezing-of-gait/ and cdn.davisphinneyfoundation.org/dlm_uploads/2020/07/EVC-2019-WS-Gait-Balance-Freezing.pdf

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We're here for you. Feel free to reach us at [email protected] if you have any questions. And here is a resource for people who are newly diagnosed: cdn.davisphinneyfoundation.org/dlm_uploads/2024/09/Newly-Diagnosed-Checklist-DIGITAL.pdf

Our Living with Parkinson's Meetup panel meets with a live audience every third Thursday of the month, except in December, when we usually take a break for the holidays. You can register to attend live on this website: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/

We're glad you found value in this video, and we agree, much of what is discussed in both of our monthly meetups may be of interest to anyone connected to Parkinson's.

Thanks for your comment! Dopamine agonists can be a good tool for restless leg syndrome, and we're glad you and your care team have found a dose that works well for you!

Multiple panelists experience restless legs. Some techniques used to try to manage restless legs include massage before bed, prescription sleep aids, melatonin, and use heat pads or warm baths before bed. Some people find benefit from certain dopamine agonists or an extra dose of levodopa before bed, too. Talk with your care team before adjusting any medication or supplement use.

Way to go keeping busy and staying active with exercise! Keep at it! Assuming you fall asleep easily at night (and not during the day when you don't intend to fall asleep), this, too, is great news. Sleep improvements are one of the nice benefits of exercise that many people experience. Loss of appetite and shifting moods are relatively common, but both may be worth discussing with your neurologist.

The panelists see their neurologists at different intervals based on their needs and their providers availability. Most are between 2-4 visits per year, but some are more frequently, especially depending on treatment changes that may be necessary. Some panelists also communicate using online patient portals (when available) to correspond with one their provider as needed. DBS can be performed for unilateral or bilateral symptoms, and because Parkinson's is progressive, periodic updates to levodopa dosing are pretty common. You might ask your neurologist if a modification is warranted next time you see them.

We're glad you found us, too! It seems like you took a reasonable approach: diagnosing Parkinson's can be difficult even for very experienced physicians, and there are so many aspects of Parkinson's. Had you dove head right in, it might have been an unnecessary stress for six months. As you approach your appointment, you might find our worksheets helpful. One of them is about preparing for appointments and is intended to help you bring up your most important questions during your visit: davisphinneyfoundation.org/every-victory-counts-manual/online-content/worksheets/

Here is more information on the topic of nutrition and Parkinson's: davisphinneyfoundation.org/resources/nutrition/

Because Parkinson's affects the whole body, you rightly observe that there are some conflicts between strategies for dealing with issues. As you point out, more water may help constipation, but worsen urinary impacts. Dr. K. notes around 19 minutes into this video that increasing fibre intake can help balance this out because fibre can absorb some of the extra water, so these things work in tandem together. Dr. K. also mentions that in cases of severe constipation, an enema may be an important step, followed by establishing a regimen which may involve increased fibre, increased water, milk of magnesia, miralax, or an alternative regular laxative intervention.

This depends on a variety of factors, including whether the weight loss is intentional or unintentional as well as other aspects of a person's health. If one is trying to lose weight, a gradual decline (around 1-2 pounds/week at most) is often considered a reasonable rate of weight loss. There are, of course, different approaches to HOW one loses the weight and there are different schools of thought about the balance between decreasing calorie intake and increasing rate of activity. It's a good idea to talk to a member of your care team about this topic--at the next visit you have with your primary Parkinson's care provider, you might ask the RN staff about the best targets for your specific circumstances.

Your questions are exactly the types of questions a genetic counselor would be able to help with. Note that there are genetic counselors who focus on neurological conditions, and some who focus specifically on movement disorders. It is unlikely that you'll receive any actionable advice about treatments, prognosis, etc, regarding a variant of unknown significance, but a genetic counselor will be able to help you understand what is known about the specific variant in question, and, importantly, they will be able to help you and your family consider the likelihood that this gene may be a factor in the health of other members of your family. Three ways to find a genetic counselor: 1.) findageneticcounselor.nsgc.org/ 2.) Call the nearest movement disorder center and ask them to help you connect with the best genetic counselor. 3.) Ask the person who ordered the test to help you connect with a genetic counselor. In general, it's worth noting that there are few individual genes that any expert would possibly say can "cause" Parkinson's and there are many genes that experts have found to be associated with Parkinson's. While there are some symptomatic patterns and speed-of-progression patterns associated with some common genetic variants, there at present no approved treatments that target any specific genetic variant's impacts on a person's Parkinson's. Treatment research is ongoing for more common variants associated with Parkinson's--GBA and LRRK2, for example.

We're glad your treatment is going well! Thanks for letting us know!

Thanks for your interest, Jason! Anyone is invited to attend our live sessions as an audience member and contribute through the chat. Register here for access: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/ As for our on-screen panelists, we tend to feature members of our ambassador cohort. More on our ambassador program is available here: davisphinneyfoundation.org/ambassador-search/

One thing you can do is join us live for our Living with Parkinson's Meetup each month: davisphinneyfoundation.org/event/webinar-series-living-with-parkinsons-meetup/ A lot of people find value in connecting with a neuro-PT who they ask to help them find ways to be motivated to keep active. You can put "neurology" in the search box at the following website to start your search for a neuro-pt near you! www.choosept.com/find-a-pt

Thanks for your feedback. We are fortunate to have such exceptional experts contribute to our community!

You're spot on: the study referred to in the discussion of forced exercise is one which involved use of a tandem bike. More on this topic is available at the two links below: davisphinneyfoundation.org/the-effects-of-forced-exercise-on-parkinsons-motor-and-non-motor-symptoms/ davisphinneyfoundation.org/how-to-exercise-to-improve-parkinsons-symptoms-the-science-behind-parkinsons-exercise/ As for those who are wheelchair or bed-bound, there are some stationary bikes that are available for purchase with forced exercise capabilities, although they can be pricey. There is also some research which we funded a few years back and the results of this research may be available soon: davisphinneyfoundation.org/feasibility-of-low-load-resistance-training-with-blood-flow-restriction-in-people-with-advanced-disability-due-to-parkinsons-disease/ Finally, because each person's capabilities will vary--at all times when living with Parkinson's, but especially in the later stages--consulting with a neuro-trained physical therapist is an excellent option for finding the best exercises for someone living with advanced Parkinson's. Searching "neurology" and your zip code at this website is a good place to start: www.choosept.com/find-a-pt

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Thanks for your message. It is certainly possible for someone's experience of Parkinson's to progress rapidly. Each person's Parkinson's experience is unique. are a few other things worth saying: 1.) There are multiple staging systems, and some have more clearly defined stages than others. 2.) Dyskinesia is not necessarily a sign of advanced Parkinson's, different people require different amounts of levodopa to experience symptom relief, and experiencing dyskinesia could just mean that dosage of medication might need to be adjusted. A movement disorder specialist is often best suited to evaluate this. 3.) Many people find talking with a family counselor can be helpful in responding to a Parkinson's diagnosis in the family. Psychology Today has a good tool to help you find someone to talk with: www.psychologytoday.com/us/therapists 4.) While we can't speculate about any person's intention regarding when they share their diagnosis, this is a deeply challenging decision for many people. Here is a blog post discussing some of the challenges some people encounter: davisphinneyfoundation.org/share-parkinsons-diagnosis/ 5.) You might find value in joining our Care Partner Meetup: davisphinneyfoundation.org/event/parkinsons-care-partner-meetup/