u/whatcoulditcost

Hey, caregivers, we're hosting an upcoming AMA over on r/Parkinsons with Mayo Clinic movement disorder specialists Dr. Richard Dewey III and Dr. Campbell Dewey. I spoke with their coordinator this morning and caregiver questions are welcome. You can read more about the AMA at this link and share questions there if you have any. We're leaving the post open from now until the morning of the 14th, to accommodate readers who won't be able to join it live.

https://www.reddit.com/r/Parkinsons/comments/1x051zn/were_dr_richard_dewey_iii_and_dr_campbell_dewey/

Hopefully this post is OK with mod u/tattedbabe, please let us know if it isn't! And thank you, caregivers, for all you do.

Someone posted earlier this month asking about its status, and late today the FDA's website was updated to list it as approved. Excerpt from the Reuters article in the comments.

Bootsie Gumdrop would've been scandalized! From USA Today (sorry if there's already a post that I missed):

>In her new memoir, “I Once Knew a Guy Named Charlie,” out now, Smith, 80, writes that late “Charlie’s Angels” co-star Tanya Roberts asked Smith to join her and then husband, Barry Roberts, for a threesome while the cast was flying to Hawaii to shoot episodes during the show’s fifth and final season.

>Smith writes that Roberts, who died in 2021, and her husband had an open marriage and that Roberts was candid about propositioning others to “swing” with the couple. Smith declined the invitation.

>“I found her honesty about her sexuality to be brave and self-aware," Smith writes. "The world is made up of all kinds of people with all kinds of passions, and hooray for that. My own perspective on marriage was traditional, based on the values I grew up with. Her choice seemed complicated to me, with great potential for hurt feelings."

Gift link to a great new article about harmonica therapy for voice strengthening. Neal Tomita, a PwP who also did LSVT LOUD, says it helped restore his voice. Dr. Michael Okun endorses it, and it was discussed at the most recent World Parkinson Congress. There are also links to free lessons.

(Sometimes you're asked to supply your email address to redeem a gift link. Here's an alternate link that avoids it.)

Would anyone else find an investment or stock manipulation option helpful when reporting spam? Stock-pushing is a growing problem in my neck of the woods (r/Parkinsons), and while it's easy to click "other" when nothing else fits, the promotion of biotech penny stocks seems like a uniquely sleazy form of spamming support groups like ours.

(We've even caught some of them posing as patients or caregivers while seeking inside information from trial participants!)

She's a helluva songwriter and I wanted to share how she described her Parkinson's apathy because it's perfect:

>There is no tidy or predictable schedule to the illness. It does not consult my calendar before deciding what kind of day I am going to have.

>Parkinson’s is usually associated with movement, tremors, and balance, but it can affect much more than the body. It can bring anxiety, depression, exhaustion, and apathy. The apathy is particularly strange. You can find yourself lying there like a starfish drying in the sun, arms pointing in all directions, while nothing inside is telling you to get up, read, watch, write, sing, call someone, or do much of anything at all.

>That has been one of the hardest things to explain. It is not simply sadness or laziness. It is as though the part of the brain that sends out invitations to participate in life has temporarily misplaced the guest list.

Two people with YOPD were among those interviewed by The Telegraph about drug shortages in the UK; opicapone and co-careldopa are mentioned. Parkinson's-related excerpts can be found in the comments below. Please let us know if you've been impacted by this or previous shortages. Medication supply chain disruptions are stressful events that have happened too often in recent years.

Great article about Dr. Sara Whittingham, an anesthesiologist, Air Force vet and mom of two who was diagnosed with YOPD at 46. "It was really kind of one of those gut punches where, you know, your whole world just stops. Everything you imagined for your future gets brushed aside," she told the reporter. More excerpts below:

>In the months after her diagnosis, Whittingham couldn't stop thinking about worst-case scenarios. She feared a steep decline in quality of life and struggled with anxiety and depression. 

>Then she learned about a study examining the effects of cycling on the progression of Parkinson's. As a former runner whose activity had been limited by her earlier symptoms, she was eager to enroll.

>"It ended up being a lifeline," Whittingham said. "The more I started riding the bike, the better I felt. I felt like I was coming back to life." 

>The study was run by Dr. Jay Alberts, who noticed that some data showed patterns of activity in the brains of Parkinson's patients after exercise looked similar to the activity seen after a person takes medication to manage Parkinson's symptoms. His research, some of the first on how aerobic exercise may alter disease trajectory, showed that if patients maintained a cycling rate of 75 rotations per minute or more for 30 to 40 minutes at least three times a week, the disease progression could be slowed.

[...]

>For Whittingham, participating in the study was the first step in a new journey. A few months into the study, her husband signed up for a half triathlon — an event that involved running, biking and swimming. She began to join him in the pool. As she trained, she started to wonder if she could also compete in the race. She didn't tell anyone when she signed up. When she competed, she beat her husband. From there, her ambitions kept growing. In 2023, she raced in the Ironman World Championship. 

>"I never, ever thought that would be something that I would be able to accomplish," Whittingham said. "To cross the finish line and hear my name being called — 'Sara Whittingham, you're an Ironman' — three years after my diagnosis was just unreal." 

[...]

>When not racing, Whittingham has embraced a "new mission" as a Parkinson's advocate. She recently spoke at a policy forum hosted by Michael J. Fox, and was appointed to an advisory council for the National Institutes of Health's National Plan to End Parkinson's. She is working on a book about her experience, and said she hopes sharing her story can inspire others. 

>"The brain is such a miraculous, adaptable organ, that it will find a way," Whittingham said. "You don't need to finish an Ironman, but set the most outrageous goal you can think of. Whether or not you achieve that goal isn't the point. Taking small steps will make you stronger and give you a purpose." 

This trial was discussed here in the past and a poster shared their experience with it. Now we have an update from Biogen and Denali that the study failed to reach its endpoints. They're discontinuing development of BIIB122 for idiopathic Parkinson's disease, but Denali's Phase II BEACON study will continue its focus on subjects with LRRK2 mutations. Excerpts and more links below.

From StatNews (same article as OP but no paywall):

>The pill, called BIIB122, indeed knocked down LRRK2 in the blood and to a degree in the brain, as measured by spinal fluid. Yet trial participants who received BIIB122 did not decline any slower, as measured by multiple scales, than those on the placebo.

From Biogen (source):

“While these are not the results we hoped for, these data provide important information to the Parkinson’s community and will be presented at an upcoming scientific conference. We are profoundly grateful to the patients, families, and investigators who participated in this study and contributed to our understanding of Parkinson’s disease.”

Michael J. Fox Foundation statement on continued investment in LRRK2 research:

https://www.michaeljfox.org/news/news-context-parkinsons-drug-luma-lrrk2-clinical-trial-outcomes

Prior thread with a community member's experience:

https://www.reddit.com/r/Parkinsons/comments/1cmnjbo/biib122_phase_2b_luma_trial/