CF Founder and Lind Family In Need of Support

[jsb]

Breakthrough Discovery: Scientists Identify Key Protein Linked to Parkinson’s Onset

LJI scientists identify an autoimmune response that may help explain why Parkinson's disease is twice as prevalent in men. Scientists at the La Jolla Institute for Immunology (LJI) have identified a potential new target for Parkinson’s disease treatment. Their research highlights the role of a sp

scitechdaily.com

I hope research will continue as they seem to learn more frequently. I didn’t realize it was more common in men, but now that I am reading more about it, realize I have known four men and only one woman who fought this disease.

My Dad has Parkinson's, I've always thought that part of the reason why men get it a little more is the exposure to some chemicals (there seem to be a lot of older farmers with it).

 

[carvers4math]

My Dad has Parkinson's, I've always thought that part of the reason why men get it a little more is the exposure to some chemicals (there seem to be a lot of older farmers with it).

Hope your father is getting along ok.

Now that you mentioned farming, the one woman I know that had it also worked on the family farm.

 

[jsb]

Hope your father is getting along ok.

Now that you mentioned farming, the one woman I know that had it also worked on the family farm.

He's hanging in there, I think. My sister and I went with him to the bowl game and were kind of surprised (probably shouldn't have been) that even a slow, short day at Universal was too much for him. He was diagnosed 3 years ago and the the last year he's gotten a bit worse. But his neurologist thinks he's holding somewhat steady. And he's 75, so there's some natural aging that starts about this time. I'm hoping he has one more football season in him, but we'll see

Jeremy mentioned that he was hoping to get hearing aides with some of the donations and I'm hopeful that those will really help him. My Dad got some recently and we've all noticed the cognitive benefits.

My mom has a friend who is a PA and she always said that most of her Parkison's patients were older farmers.

 

[carvers4math]

Oh, I hope he can enjoy going to football games this fall. It would be a challenge at 75 perhaps anyway. Everyone around us with kids need ear protection with the blast from the stadium speakers and some of the adults do too. Hopefully that doesn’t mess with his hearing aids.

 

[Jer]

He's hanging in there, I think. My sister and I went with him to the bowl game and were kind of surprised (probably shouldn't have been) that even a slow, short day at Universal was too much for him. He was diagnosed 3 years ago and the the last year he's gotten a bit worse. But his neurologist thinks he's holding somewhat steady. And he's 75, so there's some natural aging that starts about this time. I'm hoping he has one more football season in him, but we'll see

Jeremy mentioned that he was hoping to get hearing aides with some of the donations and I'm hopeful that those will really help him. My Dad got some recently and we've all noticed the cognitive benefits.

My mom has a friend who is a PA and she always said that most of her Parkison's patients were older farmers.

Best wishes, it's an evil disease and takes a lot out of the family. Hoping he continues to stabilize and can make the best of it. I'm impressed, and you should take solice in, the fact that he was even able to do a short day at Universal. My parents took us out to lunch yesterday and the 10 feet between the house and car, 20 feet inside restaurant, and back out put me on my ass for the rest of the day. Power to him!

Since there is no known cause, but many theories of how it develops, I hope that as the older generation moves forward, there are fewer and fewer younger people getting it with more recent controls around chemicals and other hypothesized factors.

If anybody wants to watch a great movie that touches on young onset Parkinson's, Love & Other Drugs with Gyllenhaal and Hathaway is moving. You have to pay close attention to the subtle things like her always stretching, mood issues and self worth, tremors, falls, and the "prison sentence for life" to those around her. In her case, she has a likely mild case of very early onset without many of the impacts, and without the cognitive issues, but it's very emotional.

 

[Jer]

Thank you very much for the post on X/Twitter @ChrisMWilliams , it's greatly appreciated. Just getting the word out to different networks of people can have powerful impacts.

If anybody has an X account and can retweet it, I'd be indebted to you forever.

I know many are probably tired of seeing the thread and/or have other causes to support, so I do appreciate your kindness in not adding negativity. What is huge for my family, may be small for others, and I completely understand that.

It's truly real for us and there are a lot of pending life changes and decisions to make ahead as we try to find a way to dig out and find a way to build as best of path forward as we can, so just the words and sharing alone move us to tears.

 

[carvers4math]

Just bumping again.

I noticed there is something called Rock Steady Boxing (noncontact) for individuals with Parkinson’s that has locations in the DM metro. It was founded by a man in his 40’s like Jer with Parkinson’s. Just realizing how little I know about this disease.

 

[Pizzapitter]

So much here. Can't go back and read through this thread, in it's entirety.
Michael J Fox. Still around. Seems like he's had Parkinson's, since Christ was born.
Big name, big exposure.
Mohamad Ali. Forget the details, but if I recall correctly, hung in for a pretty long spell.
In terms of "nobody's," a local working stiff friend has had Parkinson's for what seems like forever.
She's not getting world class attention, yet seems to be "stabalized."
Excuse my ignorance, but it appears, light at the end of the tunnel(?).
Ps. My favorite relative Ever, recently died of lung cancer. Never smoked a cig, lived the healthiest life imagineable.
SMH....

 

[4cy16]

My mom got Parkinson's in her mid 40's and died at 60. It's horrible to watch people go through this.

 

[carvers4math]

GoFundMe has declared us at 25% although I think we are a bit under. Hoping slow and steady wins the fight. We did seem to get a boost after a lull, so thank you @ChrisMWilliams and everyone else who have shared this on social media!

 

[Jer]

So much here. Can't go back and read through this thread, in it's entirety.
Michael J Fox. Still around. Seems like he's had Parkinson's, since Christ was born.
Big name, big exposure.
Mohamad Ali. Forget the details, but if I recall correctly, hung in for a pretty long spell.
In terms of "nobody's," a local working stiff friend has had Parkinson's for what seems like forever.
She's not getting world class attention, yet seems to be "stabalized."
Excuse my ignorance, but it appears, light at the end of the tunnel(?).
Ps. My favorite relative Ever, recently died of lung cancer. Never smoked a cig, lived the healthiest life imagineable.
SMH....

I absolutely wish is were that simple as it would benefit the studies trying to find treatments. PD is wildly different across people, the reasons for which are unknown. There is Parkinson's (96% of OD cases), atypical Parkinson's, and Parkinson's Plus. Each of the types based on the entirety of symptoms. I believe the examples provided all had textbook "Parkinson's" if I remember my research correctly (big if).

I have atypical and Parkinson's Plus - which is typically much more aggressive, impacts more areas/functions, and add the high impact to Cognitive functions (i.e dementia).

While it's oversharing and not necessarily written for a non-patient consumer, the attached one-pager from neurology represents my current range of symptoms. It may help understand the wide range of impacts.

I am not trying to say anybody has any better or worse experiences, but they are unique per person, just like cancer or other diseases.

Great conversation, thank you!

 

[Jer]

I will not share any details as it was a private conversation, but I had a very emotional and compassionate exchange with Jamie Pollard this morning and cannot express enough how good of a person he is. He has retweeted the post from yesterday, which is incredible and more than generous.

While he's always led ISU in the best possible way, and obviously to incredible new heights, the way he's done it with such genuine generosity deserves as much celebration. He and his family are great role models in an otherly chaotic world.

I'm incredibly grateful and cannot explain in words my feelings towards Jamie.

 

[jsb]

So much here. Can't go back and read through this thread, in it's entirety.
Michael J Fox. Still around. Seems like he's had Parkinson's, since Christ was born.
Big name, big exposure.
Mohamad Ali. Forget the details, but if I recall correctly, hung in for a pretty long spell.
In terms of "nobody's," a local working stiff friend has had Parkinson's for what seems like forever.
She's not getting world class attention, yet seems to be "stabalized."
Excuse my ignorance, but it appears, light at the end of the tunnel(?).
Ps. My favorite relative Ever, recently died of lung cancer. Never smoked a cig, lived the healthiest life imagineable.
SMH....

Ali lived for a long time. But his quality of life was pretty rough for a long, long time. Same thing with MJF. Also those 2 have a ton of access to resources and money to help them along.

 

[jsb]

I will share just the minimal as it was a private conversation, but I had a very emotional and compassionate exchange with Jamie Pollard this morning and cannot express enough how good of a person he is. He has retweeted the post from yesterday, which is incredible and more than generous.

While he's always led ISU in the best possible way, and obviously to incredible new heights, the way he's done it with such genuine generosity deserves as much celebration. He and his family are great role models in an otherly chaotic world.

I'm incredibly grateful and cannot explain in words my feelings towards Jamie.

I emailed Jamie after the football season last year just saying that it had been another great year and mentioned that it was special for me to share it with my dad not knowing how long he could go to games. He made a generous offer to me, I’m not sure we’ll take him up on it but it was kind of him.

 

[carvers4math]

I will share just the minimal as it was a private conversation, but I had a very emotional and compassionate exchange with Jamie Pollard this morning and cannot express enough how good of a person he is. He has retweeted the post from yesterday, which is incredible and more than generous.

While he's always led ISU in the best possible way, and obviously to incredible new heights, the way he's done it with such genuine generosity deserves as much celebration. He and his family are great role models in an otherly chaotic world.

I'm incredibly grateful and cannot explain in words my feelings towards Jamie.

We are blessed to have hired that man. His family has also been through their fair share of medical issues. So grateful he has spread the word of your fight and that he is our AD.

 

[cowgirl836]

I will share just the minimal as it was a private conversation, but I had a very emotional and compassionate exchange with Jamie Pollard this morning and cannot express enough how good of a person he is. He has retweeted the post from yesterday, which is incredible and more than generous.

While he's always led ISU in the best possible way, and obviously to incredible new heights, the way he's done it with such genuine generosity deserves as much celebration. He and his family are great role models in an otherly chaotic world.

I'm incredibly grateful and cannot explain in words my feelings towards Jamie.

It's such a simple, simple thing to do. I get they can't use their platform for every single request but this seems like a slam dunk one to me. Good on Pollard.

 

[carvers4math]

Just bumping as the tickets exchanges are flying for tonight.

Need to win on Melvin’s birthday!

 

[AltoonaFish]

I emailed Jamie after the football season last year just saying that it had been another great year and mentioned that it was special for me to share it with my dad not knowing how long he could go to games. He made a generous offer to me, I’m not sure we’ll take him up on it but it was kind of him.

I’ve emailed him over the years, especially when my dad’s health started failing. He sent notes and other random stuff to him and always replied with a real response. He has a lot of things to do and always has time to respond.

 

[Jer]

I don’t know how Twitter works but would have expected a massive bump from him retweeting but it’s been really slow. I would have thought CW and he’d be the absolute largest catalyst.

Absolutely grateful and happy for anything at all, just a bit confused (that’s normal state of mind).

Again, in no way complaining as nothing changed in my heart. I can’t thank people enough for even reading, let alone sharing or donating. I’m just not social media smart

 

[carvers4math]

I don’t know how Twitter works but would have expected a massive bump from him retweeting but it’s been really slow. I would have thought CW and he’d be the absolute largest catalyst.

Absolutely grateful and happy for anything at all, just a bit confused (that’s normal state of mind).

Again, in no way complaining as nothing changed in my heart. I can’t thank people enough for even reading, let alone sharing or donating. I’m just not social media smart

Neither am I. I have a Reddit account mostly for news on the app, but have never posted and probably never will. I looked at it when pondering what air fryer to get. Even my adult sons in their 20’s -30’s aren’t on social media except for Twitch or whatever they use for online gaming. Hoping people here dropping in for the game thread will pick up the pace again.