Living With Parkinson's Meetup: Q&A - April 2023

During this session, panelists answered questions from the chat on everything Parkinson’s.



Time Stamps:
0:00 - Introduction
11:25 - Importance of working with experts in Parkinson’s
12:40 - What is a biomarker, and why does it take so long to develop a drug for Parkinson’s?
17:00 - Challenges with diagnosing Parkinson’s
20:50 - Potential impacts of surgery on Parkinson’s symptoms
24:59 - Making sure all medical providers have critical information
29:12 - Brain fog
35:18 - Having Parkinson’s and caring for others
42:40 - Speech therapy for Parkinson’s
49:29 - How to get out of being frozen
54:19 - Conclusion

[triplefoam]

You folks are the greatest group of superhero’s that I have ever seen assembled! Marvel should immediately sign you all for their next blockbuster movie! Thank you for taking the time to share your PD adventures!

[cathyarcher]

I just loved listening to you guys. All of the comments that I understood and I know most people don’t made me happier and smile more than I have in along time

[tammydawnhardin]

I am new to Parkinson’s. I have had it longer than I realized bc I have very severe refractory RLS since I was 28 yo. And some of these overlapped and I assumed was RLS. It wasn’t until my teeth began chattering at nap time when I realized something else is going on. I’m grateful I’ve found you all and I’m hoping to find some like minded individuals that carry PD and RLS. THANK YOU!

[maneeshajoshi]

Hi Heather 's surprise is true for me too. It is surprising to find yourself being able to do anything. I liked her term mercurian nature. Truly it is so. Also pharmaceuticals helping great.

[splashesin]

I have come across statement where at Harvard they were able to see something using MRI a certain way to show dystonia had been happening. I think that could helpful to have on hand while dealing with the social security administration. Of course I don't know how to afford that and find the folks who know how and where to focus and read the MRI.

[judypaterson]

I have PD as my husband did. (He passed away a year ago) My daughter and I did the swab for bio markers. Neither of us had the marker for PD, go figure

[cathy]

You can request the use a local anesthetic that doesn’t contain epinephrine to eliminate the risk of any adverse reactions associated with epinephrine. Individuals with Parkinson’s Disease may need to research the contents of all anesthetic medications
untoward potentially serious side effects.

I have had two dental procedures by a general dentist who used local epinephrine free anesthetic with good results from the anesthetic ie. I did not have pain during the procedure and I was able to relax and cooperate.

Finding out the complexity of the dental procedure and the length of time you are required to be in the office, actual time for the procedure to be performed, amount of time you will need to be in the office prior to and during the procedure. It’s important to find a
dentist who is familiar with Parkinson’s disease, thoroughly understands what is meant by the “ON” and “OFF” period of the day, the medication used for treating tremors and other symptoms of Parkinson’s disease, include any symptoms . A dentist with experience with different treatment strategies, has been open to treating Parkinson’s patients who are experiencing severest symptoms, difficulties with pain management, different stages of the disease and have worked closely with and have injected local anesthesia into the mouths of many patients are have been important to me.

[splashesin]

I agree with Heather about how dismissive and criminalizing people are in general, about neurological symptoms they do not understand or cannot readily see or recognize.

[judypaterson]

My daughter and I took the swab test for bio markers. We both came back with no bio markers found. I have had PD for 13 years and my husband had PD for 10 years before he passed away last year

[splashesin]

I often wonder if it's any of the differential diagnoses, but frankly Parkinson's sounds like the lesser of the evils, difficult as it is. Whatever it turns out to be, doesn't really change how it continues to effect me in my general life experiences. I'm just doing the best I can, with what I have, day to day. I am really interested in the biomarkers though. If it could help narrow things down, faster, to help other people understand what they find strange about me.