I like these song picks and want to bookmark this to come back and go play them. I also have a long list, and will have to think through ones that get me the most. Music keeps me moving every day. It's hard to just narrow it down. 😂
@sandysullivan8707
4 ай бұрын
A can testify to LSVT loud helping me. My parkinsons p.t. evaluation has showed improvement in my leg strength. I have faithfully exercised for over a year every day.
@davisphinneyfdn
4 ай бұрын
Keep it up! We're glad LSVT is helping!
@Cassie66179
Ай бұрын
My song is “Staying Alive “ by the Bee Gees
@TheOnBoardLife
4 ай бұрын
about my reaction to Still. I'm conflicted about it. With a vast and eager audience, there was no clarion call for outreach to parkies who don't live in a massive flat in New York, with his own PT and access to the very best treatments. At the end of the flick we watched MJF walking off into the sunset with his family. And God bless him for all that he has done, but so much more could have been said and done. And that coming from someone who respects MJF for what he has done. He truly is the patron saint of PD patients. On another angle, I try to avoid many of the fictional accounts of PD. I find it to be very emotional, and that triggers me into excessive anxiety and sadness. Like you said about the restaurant show; why would I want to watch something I experience first hand everyday. But I do watch many of the reputable scientific content available, but it is all getting to be repititious. As far as "newsy" coverage of PD, I agree with the panelist that when something is announced that is a legitimate advancment, I will somehow someway learn of it post haste. For instance, if you, MJFF, APDA, PDA and my neurologist all tell me the same thing about some advancement, I'd be pretty sure it's a winner. I don't need Ed Begley flapping his yap from Tiajuana about eating squid reducing tremors. If any of them were actually cured they'd be featured on the evening news, not in a nine minute poorly produced KZitem video.
@davisphinneyfdn
4 ай бұрын
Thank you for this thoughtful comment. The subtleties you discuss are examples of why we thought this topic might be worth discussing, so thanks for sharing your perspectives!
@ChrisSmith-fc5oq
4 ай бұрын
I am late to the party. But a specific song about Parkinson's is a video of Blame it on the Parkinson',". Another couple of psa,s are Michael fox and Mohammed Ali. They play off o& each other..links to follow in a further comment.
@davisphinneyfdn
4 ай бұрын
Thanks for the recommendations!
@splashesin8
4 ай бұрын
Once again, an excellent group talk❣️❤ Just loving this initial listening. I know I will go back through to participate on some of these topics in the next few days. I wanted to really hear what everyone was saying before letting my mind get too distracted thinking of things yet. I had an interesting encounter with a woman while I was out about three weeks ago, who came over to speak to me as I was finished filling the water jugs at our reverse osmosis stand, before heading into the supermarket. I realized I had heard her coming out of the market while I was taking a hard turn to get the water outside a bit east of the automatic doors. I felt like I recognized her voice, as she was talking to a person probably pushing her cart out to the car, but wasn't absolutely sure she was someone I knew. She must've watched me from her vehicle or something for awhile, and came over to talk to me as I was drying the outside of everything off, arranging jugs and other items so that I wouldn't buck anything off the top of my mobility gear as I pushed it and navigated back under the shade of the eaves and into the store. Anyway, she was congenial and spoke as she came walking up as I was headed back towards where I had heard her exit earlier. I think she must've also run into the next store over for a little bit, because while she was talking a person ran over to hand her a card she had dropped inside the other store at the check out. So she said she just wanted to come over and speak and ask me how I was doing, and I said I was doing a lot better now that was done with water filling and on my way back to the shade and in out of the sun. Then she said, "I'm just so sorry that this happened to you." I wasn't sure which thing was bothering her, so I just said it was okay, and I was really used to it and did this stuff all the time. Sometimes things would seem really overwhelming initially but that it really helped me to keep moving even if it was slow going, and that thankfully I had this great gear that really helped a lot and made thing easier than the years before when I was just carrying it all on my back. That I had learned to start and stop sometimes taking breaks along the way, like I was about to do for a little while next, before getting back up and shopping some more. She said she knew, what wrong with me, and I said, "really"? ...and she said yes, and asked me if I had and children and I said,"No, I don't." ...and she said everybody should get to have at least one, and that she had a daughter. She was telling me a little about her daughter and then before I could get her name or ask how she knew what was wrong with me, it sounded like someone exited the market and flagged her over that she she knew, and she had to run. She hugged me a little from the side and went on. So I'm not sure what she thought was wrong or how she was so sure or if we know mutual people that knew us in different other activities or if I have only known her over the phone once in awhile. I did find out she retired from being a realtor for many years, so, not a physician. 😅 Still it's a mystery to me. Now I wonder if maybe one of her relatives has something similar, although I don't know which thing she was identifying me as having. Many people miss recognizing any of what's really happening at all, or can't wrap their heads around more than one thing like there's a quota. Then astoundingly some people who know me well enough to know better simply forget my actual real limitations when they just want to go into warp speed, or go into situations not as prepared as I have no choice but to be prepared at all times to make things not be a problem, or something I will not be self contained with. I can't just run through someplace that is only open five more minutes the way I could when I was only just blind. So now I don't know if I have made a stranger upset because I'm so motor neurally impaired or hurt a person's feelings that I know contextually over the phone but didn't instantly guess it was her (I think I might know now, possibly) by her voice alone without her saying her name first in person encounter. I can't find that other part out until Monday which is eclipse day. I don't know if she'll be in her office or not as we are in the totality zone for near her time to punch off the clock around noon. Ironically my friend who is also blind says to me that anyone can tell I'm having some kind of motor impairment, and various of her family members can tell, when they are out driving and see me, besides just her who could tell before anyone else sighted could. Why I've told this story I don't know for sure, just a recent thing. I was just trying to explain to the woman how fantastic it is to still be able to get out and that my tools I have to make that as easy and safe as it is are wonderful to have, and keep me more able to keep on moving, which keeps me moving! I will try to be briefer on my media responses. 😂
@davisphinneyfdn
4 ай бұрын
Thanks, as always, for sharing your journey and perspective with us!
@user-xe6ig8mq1d
4 ай бұрын
Stutz is a great documentary- it’s not about Parkinson’s per se but Phil Stutz (Jonah Hill’s therapist) has Parkinson’s
@davisphinneyfdn
4 ай бұрын
Great recommendation! This made our blog post last June, even though it didn't come up during the Meetup this month: davisphinneyfoundation.org/parkinsons-movie-tv/ Dr. Stutz's way of mitigating some symptoms through quick physical activity is a good tip.
@user-xe6ig8mq1d
4 ай бұрын
I Have a Good Day Every Now and Then by Paul Thorn. Just the chorus though - I’ve got my poet husband working on changing the lyrics to reflect the “Parkinson experience”.
@davisphinneyfdn
4 ай бұрын
Thanks for the song tip!
@newworld6474
2 ай бұрын
I take 1 1/2 levo pills around 5 times a day plus around 2 1/2 pills scattered around before sleep , during sleep(bathroom break) and if get up early... would you be similar?
@davisphinneyfdn
2 ай бұрын
Every person's medication regimen is unique to their experience, but what you describe is similar to the regimen that some members of the panel have taken (either currently or at some point in their time living with Parkinson's).
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