Moderated by Robin Riddle, CEO, Brain Support Network
For Dr. Sharon Sha:
Q: Why do we call PSP & CBD atypical Parkinsonism diseases if they have so many similarities to Alzheimer’s diseases?
A: Usually Parkinson diseases have certain pathology causing the disease and that a certain type of medication helps improve those motor symptoms. People might say Parkinsonism to imply symptoms that you see. PD & LB diseases have a different pathology because they have a similar one as well.
Q: What does it matter what the patient was diagnosed with?
A: Can better expect what is going to happen in the future, enroll in clinical trials, etc.. Can be helpful in treatments and medicines and help to provide answers for others.
Q: You mentioned new diagnostic criteria for PSP&CBD, how do these types help laypeople?
A: They help researchers mostly. Clinicians understand that there are different variants and patterns of symptoms. Then we can help counsel you when you come to the clinic and understand that better. Gives everyone greater certainty.
Q: Can a concussion trigger PSP/CBD?
A: If there were memory or movement problems from a concussion, things would be static and not get worse. Usually it doesn’t cause it, but the disease was already brewing, and the concussion brought it to light.
For Dr. Megan DePuy:
Q: LSVT loud – speech therapy for Parkinson’s, can it be helpful with PSP or CBD?
A: Yes, it’s absolutely shown to be helpful across neurodegenerative disease patients. I’ve sent many patients to be reevaluated after doing it, because I see many symptoms a neurologist hadn’t picked up on the first time around.
Q: If someone is not coughing, what are the signs of aphasia pneumonia?
A: watery eyes, irritated, etc. Usually there is nothing that is causing a red light.
Q: You mentioned the epiglottis, how can you strengthen or exercise that? Can you?
A: The muscles that are attached go all the way around your larynx/pharynx area, so you can try and strengthen the muscles that hold the epiglottis, (indirectly.) So you can move your larynx up and down. If you can strengthen the vocal chords, that helps too.
Q: Why can a PSP/CBD patient sing but not speak?
A: Right hemisphere = music, left = speech, by using music, you can use the strengths of both hemispheres. Using your musical center to help with speech and language fluency. Where your ability to sing comes from is in your right hemisphere.
For Dr. Erica Pitsch:
Q: Struggle between autonomous vs. safety and security. If someone does not have dementia and someone wants to go horseback riding or be walking on their own, what do you suggest to the family/caregiver?
A: Informed consent – weigh the benefits and risks first. Classic example is patients wanting to use a walker or not. In evaluation, walking speed is x vs. y, without the walker I could you x times, with the walker you maintained your balance. Showing the risks and benefits. Consequences of failure. Outweighing those consequences of failure. If you are OK with those, then go ahead.
Q: Why do people with PSP fall backwards? What are the options for walkers/mobility?
A: The axial rigidity (stiffness), makes us more likely to tip over. Postural instability and stiffness make the combination for people more likely to tip. Not much to catch you when you fall backwards.
Q: Medicare/Insurance – how can you get them to pay?
A: It is required to educate providers about the standard (progressing over time). Have to objectively prove that someone will get worse without it. Can’t be at a frequency that you can do by yourself. If you can track your progress, and find problems to solve, and give people a “tune-up” when you need it. But to get it paid for, there needs to be a new problem to solve or learn.
For Dr. Heather Moss:
Q: What about convergence/divergence video games? Is there such a thing for that?
A: There probably are. There are simple things that can help those. Pencil push-ups. Start with target in front of you. Look at eraser and slowly pull it in until it splits, and then repeat.
Q: I have amblyopia that is corrected so I cant have double vision. However I notice I close one eye and it does not give me the same image as the other eye. Can you comment on this?
A: In childhood due to eyes not being straight or one eye having different prescription, pathway between eye and brain doesn’t work as well. Sometimes eyes can never have double vision at all. One eye suppresses and gets ignored.
Q: Because of convergence, our neurologist said to raise reading material onto music stand, this was an easy fix.
A: Yes, with vertical eye movements. If you can’t look down, it is good to like upwards or up straight ahead to help neck posture.
Q: Eyelid apraxia – can you talk about that?
A: Controlling our eyelids is like controlling other muscles. One problem can be decreased blink. Surface of eye can get dry if not enough blinks. Can purchase eye drops to help. Eyelid apraxia is the motor control missing and can’t close. Which means you can’t open them very well. Sometimes have to use fingers to open the eyes manually. Problem isn’t that they’re weak; it’s the control to make that action.