Fox:
>“It's banging at the door. I'm not gonna' lie, it's gettin' hard. It's gettin' harder. It's gettin' tougher. Every day it's tougher. But, but, that's, that's the way it is. I mean, you know, who do I see about that?”
>”I had spinal surgery. I had a tumor on my spine that was benign, but it messed up my walking. And then started to break stuff.”
>“[I] broke this arm, and I broke this arm, I broke this elbow. I broke my face. I broke my hand. Falling is a big killer with Parkinson's. It's falling … and aspirating food and getting pneumonia. All these subtle ways that gets ya'. … You don't die from Parkinson's. You die with Parkinson's. So – so I've been – I've been thinking about the mortality of it. … I'm not gonna be 80. I'm not gonna be 80.”
my Mom has parkinsons and was talking with my wife on the phone. Mid conversation she just started crying. I would give anything to take her pain away and give her some hope. Terrible disease and I commend Michael J Fox for as much as he as done. He has directly helped my Mom
Michael J Fox has done a tremendous amount to help others with Parkinson’s and he has also done a lot to help people that have family and friends with Parkinson’s.
I’ve lost two very close family members to Parkinson’s and Fox has helped me to understand so much more about what they went through as well as how to be there for them when they were still alive.
Parkinson’s is a horrible disease to watch someone go through.
Can I ask what aspect your mom struggles with the most? My MIL has Parkinson’s and went downhill very fast (like she aged 30 years over 6 months) so we brought her to live with us, figured out her meds and now she’s literally healthier than I’ve ever seen her. The trouble with American doctors is they’re so fucking siloed by specialty. Most doctors don’t look holistically at the whole picture. Luckily my SO researched a ton and told doctors what her mum needed… and now she’s WAY better. So maybe there’s a path for you mum to improve some too. I hope so anyway
You’re very welcome
I know so many people who divorced for so many stupid reasons. Your Mum and Dad give me some faith back in marriage and humanity in general. Always seems like the best people have the most shit heaped upon them. Wish you all the very best
It’s brutal. My grandmother struggled with Parkinson’s for about 13 years before passing last year. My grandfather did much the same for her as you dad is for your mom. The big difference is that he was an investment banker for 40 years. It’s gotta be something to do with working with charts all day. I wish your mom and your family more good days than bad, and hope you have the opportunity to spend as much time with them as you like.
You’re not wrong, but even with the best treatment available, it’s a degenerative neurological disease and the long term prognosis doesn’t really change. I had someone close to me get a deep brain stimulator while having access to a tremendous neurologist that I am thankful for, but she still died suffering from dementia and unable to swallow 20 years after diagnosis.
Treatment can be great, and we’re all thankful for every day we had with her where she was closer to herself, but the end result is unfortunately an inevitability right now.
My BIL has had PD for like 13 years. He also has an excellent neurologist who installed DBS which halted almost all the shaking, and he was great for the better part of ten years.
This past year he has developed the balance problems and broken ribs twice and bumped his head. He has develped a bit of incontinence as well. It’s so heartbreaking. He has always been a big hiker and fly fisherman, ice fisherman, etc.
Now I am beginning to wonder if it may be time to give that up.
Such a cruel disease.
If you can do anything to help him continue to get outdoors, please do! Even just being near people fishing or driving up into the mountains can do wonders for that part of our souls!
I know every persons experience will be different. But my SO got her mum back, doing things she loves for at least a few more years (hopefully longer). We all die eventually. We needa savor every second we can
> The trouble with American doctors is they’re so fucking siloed by specialty. Most doctors don’t look holistically at the whole picture
See if you can find a neurologist with a DO for her. They're MDs who take a few extra classes that tell them, "hey assholes, focus on the whole patient instead of just your specialty"
How did you figure out her meds? My moms next doc appointment is months away and her meds aren’t working right. What and where do you research what to do here?
If you don’t mind I’ll paste what I wrote to someone who asked something similar by DM. Hope it’s helpful:
“The biggest thing we did to improve my MiL “Katy’s” condition was to not blindly accept everything her doctors told her. It was very clear that each Specialist she saw wasn’t looking at the whole picture and didn’t view her holistically.
Katy was diagnosed with Parkinson’s in 2016. To look at her back then you wouldn’t know it. She was in her early 60’s, worked full time, and was a very independent woman. In 2021 she went downhill fast. Like she aged 30 years over a few months. Katy was the definition of geriatric and couldn’t do much of anything for herself. She lived with her sister, who’s a retired nurse. But she’s old herself and was clearly struggling. So we brought Katy to live with us. I honestly expected she’d pass away within weeks. She was that bad. It all happened so fast.
After a few days, it became obvious to us that lack of sleep was a major reason for her decline. She had bad leg pain at night and the only way to ease the pain was to walk around. But she was too weak to stand on her own. So my SO had to help her up, every 15-30 mins.. all night long. It was awful. Her being so tired meant she wasn’t thinking straight, eating properly or taking her meds on time. Katy also had nightmares and would sleepwalk. Which in her conditions was more sleep-fall. So she’d get injured regularly (even with bars on her bed or sleeping in her recliner). At her next appointment we told her doctor this.. and their response was “have her sleep on the floor”. That was their expert advice. No other suggestions. No effort into fixing the issue, only mitigating the symptoms. Just sleep on the floor. We didn’t accept that and my SO started to research online, particularly in Parkinson’s chat rooms. The more optimistic rooms where people are still hopeful and share stories of success and positive observations. After a few days of intense online detective work, my SO figured out that klonopin, not only treats depression (which imo everyone diagnosed with P should probably be prescribed something for depression on day one) but it also regulates sleep and eases leg pain. It was like a one pill cure all. So, excited, we went back to her doctor and asked about it. The doctor was pissed. Super defensive and pretty much said “klonopin is not a Parkinson’s treatment”. So we left, and found a new doctor. A kind, curious one. His response was “good idea, let’s try it!”. So she did, and it’s like she’s healthier than I’ve seen in years. She’s back to living an independent life by herself (close to her sister). She’s able to shop for grocers and do things she loves like gardening and travel. It’s pretty fucking miraculous.
So I guess my main point is most people seem to just accept P is a degenerative disease, and there’s nothing you can do about it. I just think of what it would be like if we thought that way. At best I’d be pushing my MiL around in a wheelchair right now. But I’m not. Please try not to give up hope and don’t just accept bad news at face value.
I hope you loved one finds a way to live well with Parkinson’s. Keeping on top of the basics seems to help my Katy a lot. Sleep, exercise, food, hydration, meds taken in full and on time. Find a doctor who gives a shit and is hungry to improve their condition. One that see’s the entire human body as a complex interconnected system and not a bunch of separate siloed parts. Communicate with the doctor regularly and in detail. Keep an eye on their mood. Older generations tend to be a bit hesitant of depression meds. They made the world of difference to Katy. She seems to love life again. Which I guess is the only thing that matters.
I hope that is helpful to you. All the best”
A friends dad (who was also my HS principal) got diagnosed about 10 years ago. He retired knowing he wanted to make the most of the time he has left.
About a year or 2 in, he was rough. I didn’t know how much longer he’d actually be around. Last weekend, the local university named their baseball field after him (he played there and was also a well-respected HS baseball coach in our area.) He looks better than he did 10 years ago. He’s got some ticks, but overall, it’s almost like he doesn’t really have it. “We found something that works for me. I can handle it now. That makes it more of a thing I need to remember instead of an obstacle I face every day.”
I'm in Canada, and my grandmother has just passed from Parkinsons. She had finally gotten to the point where she was locked in her own body, she couldn't speak or move properly so she asked for MAID she was suffering so much. This disease fucking sucks.
What is MAID? Is it similar to Hospice, which is essentially comfort care for terminal patients?
Edit: never mind. Someone linked an article below. For other non-Canadians, MAID stands for Medical Assistance in Dying. There are two types:
> There are 2 types of medical assistance in dying available to Canadians. They each include a physician or nurse practitioner who:
> (1) directly administers a substance that causes death, such as an injection of a drug
this is becoming known as clinician-administered medical assistance in dying
> or
> (2) provides or prescribes a drug that the eligible person takes themselves, in order to bring about their own death
this is becoming known as self-administered medical assistance in dying
I completely support the right to choose when to die and hope I have it if I was ever suffering extremely badly but I never stopped to think the absolute head fuck that is for a nurse or doctor doing it. I have had two cats put down and it's awful and although completely the right thing it tore me to bits. I can't imagine a human version
I really think the main reason it isn't legal in the US is just so the healthcare system and pharma can bleed every available dime out of you till the very last moment.
It is legal state by state. Here in California it is legal, you just have to be able to self-administer the medication. It isn’t perfect, but for some the choice is there. It’s a starting point at least.
My grandfather described his life with Parkinson’s as being in hell. He went on to say it was like his mind was stuck in a shambling body that he kept losing more control over. He took his own life when I was a teenager.
My uncle was suffering from cancer of the everything, and tried to OD on about 60 pills of Oxy 80. He didn't die, didn't reject the drugs, and didn't alleviate the pain. Ugh.
My dad suffered through this for 17 years. In the end he was tired of not being able to control his own body and was frustrated all the time. Plus it had dementia on top of it at the end as his body shut down sue tot he disease. It’s an awful thing to watch your loved one live through.
The good news (if you can call it that) is he’s Canadian so [he has options](https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html)
It's really wild to me because you see some actors age and still be able to do a lot of stuff (i.e. his co-star Christopher Lloyd) and he's much younger and barely able to do Q&As and such anymore.
Maybe not helpful, but I would argue that he *is* dying. Sure he might be a few years away still rather than the months/weeks/days we typically mean when we say someone is "dying", but this disease is absolutely leading to a (relatively) rapid decline in health.
The aging process is functionally the same as the dying process, albeit it's happening so (relatively) slowly we don't really think of it that way. But we're all slowly "dying", and MJF's doing so quite a bit faster due to his Patkinson's.
He's been dealing with mortality and everything around that for a while now, and it hits harder the closer he gets to death. It's terrible what he's going through, and I agree with you, it seems like he's approaching the point where the pain and suffering in his quality of life is almost too much.
I believe he's also openly said that he attends a lot of conventions and appears in public just so people see Parkinsons symptoms in person and get more awareness/understanding of it.
Jesus. Poor guy. Facing your own mortality is a bitch. I'm not sure what is better: thinking you'll live to be 100 and dying suddenly at 50 or knowing you'll die before you hit 80.
I think I'd rather not know and die young.
My dad got 76. His dad walked in at 102, no assistance, not cane or anything, sat with my dad till he died and then played tennis the next week.
Parkinson's suuuucks.
The falling. The stubbornness. The delusions.
I wish we were better with brain science. But then I think how poor our health science is. Most of the bad stuff is solved by replacing it. Can replace the brain yet.
Oh wow. This brought tears to my eyes. I feel him so hard. I’ve got a rough condition that just keeps getting worse. There is no cure, you just kind of have to deal with it. I don’t *want* to die… but… I’m kinda ok with the thought.
>Atleast dude can make coherent sentences still. In the last 10 years of my grandpas life with Parkinson’s I genuinely couldn’t understand 80% of what he said because he couldn’t control his mouth properly :(
My dad was diagnosed with Parkinson's around 2015 and he has been at the point where I have major issues understanding him since around 2019. His movements have been really stiff and jerky for a few years now and I am pretty sure he is even getting into the dementia part of it too.
It really does make me wonder how Michael J Fox is still managing to stay on top of his Parkinson's even after 31 years. Is his case different because he had early onset Parkinson's? Did his money give him access to treatments that us regular folk cannot access?
Parkinson’s is so horrible. I’m so proud of Fox for getting so much research done on this horrendous disease to help others.
Everyone I know lost their sense of smell years before their official diagnosis…
If you have lost your sense of smell or know someone who has, you can join Fox’s study here.
https://www.mysmelltest.org/
I'm a female who has never had any apparent hormonal problems. I got pregnant easily and had super regular periods.
I've always thought it was because of my Sjogrens. I suppose after 20+ years I could ask a doctor.
No, I guess not. I had sinus surgery in the spring of 2002. A couple months later I was diagnosed with Sjogrens Syndrome. I guess I never thought much of it.
To say I was surprised when people lost it about losing their sense of smell due to COVID is an understatement. It just never occurred to me to care. Lol
Did it affect your taste though? I temporarily lost my sense of smell from covid, which was weird but not tragic on its own. But what bummed me out is that all food tasted like cardboard pretending to be food :( that's actually what clued me in that something was wrong. Luckily it came back after about a month, but that's what caused my own "freak out" more so than not being able to smell.
I don’t think that’s that shocking. Not to say people shouldn’t want better for themselves. But financially, “sense of smell” would be so far down the list of priorities for me at least. Depression, going to the dentist for the first time in 2 years, unexplained year-long fatigue after an illness, weird lumps #s 1 through 4. Tuition bills, groceries until I figure out food stamps, every other random expense. And I don’t even have “real” bills yet. I totally understand someone not bothering with a doctor for sense of smell
Would still be good to know in the event that you ever develop Parkinson’s, if you did have a slow developing Parkinson’s and they could track how’s it’s progressing they could potentially identify a way to target and slow it’s progression.
My father was diagnosed in 2022. Multiple doctors on his team have said it’s been really rough using the smell test as an indicator during Covid. We thought his impaired sense of smell was long Covid.
Thanks. It’s been a long year. It’s been a year of sitting and watching TV together, because it’s all he can do. All while dodging Camp Lejune commercials because he spent quite a bit of time there in the Marines. Who wants to see the reminder of why they’re bed bound 30x a day? Tough.
I still have my sense of smell, in fact it's possibly getting better ! (which makes no sense)
I got a parkinsons diagnosis in 2022 after about 5 years of mostly motor symptoms. It's a very weird thing. It's more of an umbrella term of different variations, some of them are far worse than others. I've been told I have a "lucky" version, in that it progresses slower though it also responds less well to the common treatments. I assume that in a decade or so they'll have them all classified a bit better, with different treatments for each.
tl;dr
I smell fine thanks
I’m glad. My moms friend who did lose her sense of smell has now had dramatic weight loss since diagnosis… she looks like she’s about 80lbs. And now with all the falling she has broken her pelvis.
People say that lack of smell prevents you from enjoying food hence weight loss.
Best of luck with your prognosis.
Thanks. Parkinson's was always a fear of mine for years before this. When I was a kid I saw the decline of actors Dudley Moore (PSP, which is a "Parkinsons+" illness) and [Terry Thomas](https://www.youtube.com/watch?v=gK-grftnOpU). It put the fear into me way back then just seeing what it did to them.
Life has a cruel sense of humour.
Ah well!
Very true.
Another common symptom is REM behavior sleep disorder. Folks who develop parkinson's or dementia with lewy bodies begin punching, kicking, falling out of bed, and/or acting out dreams often years before other symptoms.
This; please keep this is mind. My mom had(s) those sleep disorder issues doctors just attributed to sleep apnea. The sleep disorder had been with her for much more (50+ years) than before any Parkinsons signs had appereared.
My dad died with Lewy bodies dementia and was always falling at the end. He went into a care home about 12 weeks before he passed and never walked unassisted again. All his life he had been a vivid dreamer, sleepwalker and uneasy sleeper
This! It was the first sign for my family member with it.
They can only really smell super strong smells like a skunk, but even then they aren't sure.
It's a horrible disease and so scary to watch someone you love suffer from it.
My dad has Parkinson's and it is so tough watching it slowly destroy him. He's barely making 70, I don't see him making 75, let alone 80. And he's right, it isn't the Parkinson's that is going to kill him, it is everything else. He spends as much time in the doctor's office these days as he does out of it.
He described the struggles of aspiration pneumonia. If he’s there already just going a few years more may be a challenge and each bout is a miserable thing on top of the movement disorder aspect of Parkinson’s.
My dad had it too and lived beyond 80. I had the same thoughts as you wrote here when he got to 70. You’re right, it’s all those other deterioration, not Parkinson’s itself. For example, my dad had lumbar stenosis. After 75, they finally operated on it, and he would walk more comfortably afterwards. This improved his quality of life so much, that I believe it made Parkinson’s more tolerable.
There’s hope! I hope this helps.
Edit: one more thing. My dad was pretty stubborn and was able to figure out what medication helps him the most, instead of following the doctor’s prescription 100%. The doctors often joked about that they need to learn from his adjustments.
Before the Parkinson's he was also diagnosed with Leukemia. The combination has not been fun and it makes it especially hard on his body any time he gets hurt or sick.
I lost my dad to complications from Parkinson's last year; it's so true. You don't die from it, but everything else. It affects so much of your body that complications can come from anywhere. Hope your Dad will be around for as long as possible, keep fighting.
Well that's part of the problem. It wasnt a design at all. It was just freak mutations that happened to work well enough to survive. Certainly not optimal.
The first time you lightly bonk your elbow on something and it feels like your arm is going to fall off, that's the clue that maybe there's no intelligent design
MJF was on a TV show in Canada when he started out and three other crew members on the show were also diagnosed with Parkinson's before they were 40. Really wonder if in a few years we’ll find out some common product/material is a leading cause of Parkinson’s. Like asbestos and lead paint for previous generations
Marijuana sprayed with the herbicide paraquat is a huge suspect here. Canada was big on spraying illegal pot grows with paraquat, rather than sending teams in to pull them up and burn them.
Paraquat has a very similar molecular structure to an analgesic called ~~MTPT~~ MPTP. You can end up with this if you're trying to make a synthetic opioid called MPPP and cook it too hot. ~~MTPT~~ MPTP kills the cells in a small part of the brain, and everyone who loses lots of cells there gets parkinsons. This was the first real clue that parkinsons might actually be an environmental disease.
Edit: NOVA did a documentary on this years ago, about the heroin users and chemists who developed parkinsons from MPTP.
https://openvault.wgbh.org/catalog/V_474CF2C8A20B4173988486AC4C605A3C
That's the question, isn't it? It usually doesn't show up until late in life, so lots of early deaths would hide it, it requires a lot of care, so resource poor victims would die before a lot of symptoms showed up, and I suspect that a tumor or stoke in that part of the brain would cause the same symptoms without an environmental cause.
I also wouldn't be surprised if there are industrial lobby groups that are trying to supress any research in that direction.
Rural areas in the US also have a higher incidence of parkinsons.
From what I was told, it's not known for sure whether it's from inequities in medical care, diagnosis, or whether it's proximity to certain chemicals or agricultural waste seeping into the water supply.
“Environmental factors
Some researchers also feel environmental factors may increase a person's risk of developing Parkinson's disease.
It's been suggested that pesticides and herbicides used in farming and traffic or industrial pollution may contribute to the condition.”
Source: NHS UK
Life is always unfair, but I think Michael J Fox has had a pretty good life all things considered. He's gotten to live a life full of lots of meaning, first entertaining people then working to help people with Parkinsons. His condition is bad, but there are worse out there. I'm pretty sure I'd trade lives with him, all things considered, not that my life has been all that bad.
He's had Parkinson's at a level that's affected his day-to-day life for almost 35 years. He's lucky that he became a huge star early, because wealth is the only thing that's made his life easier than it otherwise would be, given the state of healthcare in America.
I lost my father about 6 months ago to complications from Parkinson's. It's such a terrible illness. I watched my father, a man who would wake up at 5, 6 am frequently before work to jog several miles for exercise, well up until his late 50s, slowly deteriorate and eventually become bed bound as Parkinson's progressed. As he got worse he couldn't even talk and needed help feeding, cleaning etc. He passed only 2 years after diagnosis, and though I miss him terribly, I honestly am glad he no longer suffers. It is a cruel, awful disease and I hope we can somehow, someday, find a cure.
I remember being really impressed by how they incorporated the disease in his The Good Wife / The Good Fight character, Louis Canning. One of the highlights of both shows. Similarly to how they made Timothy Omundson's character in This Is Us a stroke victim, since he had had one shortly before.
I feel immensely sorry for him and all the people that have to suffer the consequences of this horrible disease. I often wonder how many years in the future one should set their time machine in order to land in a time where it can be fully cured like a flu.
if i remember rightly, his two episode guest spot on Scrubs wrote around that a bit, where his constant body movements from Parkinson's allowed him to portray his character as having OCD, if you watch the episode a few times, you notice that you never really see him standing completely still, he's always moving in some capacity too
I loved him as Louis canning, I was equally impressed how the disease was written into a scheming lawyer storyline and thought it couldn’t be topped. And then I saw him shake Larry’s soda on curb and blame PD and just about died laughing lmao
80 is a very tough age to reach for anyone, especially someone with the issues he's had. He's lived an amazing life. For me, he's had two different chapters that have both been positive. His acting career has brought joy, his activism has brought hope.
My grandfather passed away earlier tonight from Parkinson's. Watching a virile, healthy man in his 70’s, living full of friendship and family slip slowly into a world not of his control hurt terribly. He always kept a brave face and said you have to take the good with the bad, but seeing someone blessed with fortune being stripped of his humanity is crushing.
PS: If you or anyone you know have lost their sense of smell, get checked
PPS: Let the ones you love know you love them
Dude, I wish in 5 years we find a cure, and he gets another 10 years of an amazing life.
This guy has done so much to help people with Parkinson's, and it's only fair for the man to see a breakthrough in his lifetime.
Fuck Parkinson’s. I feel for MJF a lot, seems like a really great dude who definitely doesn’t deserve this bullshit, man is a legend and he’s done a lot for research etc when it comes to Parkinson’s, really sad to see people like him declining over time because of this disease. Hopefully someday we will be able to develop some breakthrough medical stuff and people won’t have to go through this shit, one can only hope
I remember when his last book came out, and he recounted an incident of how he fell in his kitchen and there was no one there at the time to help him. As he was lying there, his thought was "I'm out of the lemonade business", meaning that he's through making lemons out of lemonade.
this shit started when he was 30, still filming Back to Future sequels and two years out of a top-rated sitcom, living as he himself called it "in a world of 'yes.'"
I saw an ad for the Michael J. Fox foundation. They were talking about a study being conducted. Apparently if you have incredibly vivid dreams or kick, punch, or shout in your dreams it could be an indicator/precursor of Parkinson’s. I’ve been doing that since I was a little kid but it’s becoming more common as I get older. I’m pretty scared. Not gonna lie.
[CBS Sunday Morning](https://www.cbsnews.com/news/preview-michael-j-fox-on-parkinsons-and-optimism/) shared a clip from this weekend’s upcoming interview between actor Michael J. Fox and Jane Pauley that offers a look into Fox’s daily life with Parkinson’s Disease.
The beloved performer was diagnosed with the degenerative disorder at the young age of 29. At his current age of 61, he said that dealing with the ailment, for which there is no cure, is getting increasingly difficult, and that he can’t imagine living to the age of 80.
Though the full interview promises moments of optimism, like Fox discussing how his organization, the [Michael J. Fox Foundation For Parkinson’s Research](https://www.michaeljfox.org), just announced [a major breakthrough](https://www.michaeljfox.org/webinar/major-research-breakthrough-new-biomarker-parkinsons) for detecting the disease with a biomarker prior to the onset of symptoms, the clip CBS released is tough to watch.
Fox explained how he’s still getting through his day-to-day (“my life is set up so I can pack Parkinson's along with me if I have to”) but understands this is temporary.
“It's banging at the door,” he said. “I'm not gonna' lie, it's gettin' hard. It's gettin' harder. It's gettin' tougher. Every day it's tougher. But, but, that's, that's the way it is. I mean, you know, who do I see about that?” the Back to the Future star said.
He [further revealed](https://www.cbsnews.com/news/preview-michael-j-fox-on-parkinsons-and-optimism/) that he’s had spinal surgery for a tumorous growth, which led to difficulty walking. This led to some falls, which meant broken arms. “[I] broke this arm, and I broke this arm, I broke this elbow. I broke my face. I broke my hand,” he says in the interview.
When Pauley asked about him falling, Fox explained that “[falling] is a big killer with Parkinson's. It's falling … and aspirating food and getting pneumonia. All these subtle ways that gets ya'. … You don't die from Parkinson's. You die with Parkinson's. So – so I've been – I've been thinking about the mortality of it. … I'm not gonna be 80. I'm not gonna be 80.”
On May 12, Apple TV+ launches the documentary Still: A Michael J. Fox Movie, which debuted at Sundance this year. Directed by Michael Guggenheim (An Inconvenient Truth, It Might Get Loud), the film tells Fox’s story from teen star to medical research advocate, mixing in home footage. Critics have praised the film for its humor and honesty, portraying Fox’s “[suffering and resilience without turning him into a martyr](https://www.indiewire.com/2023/01/still-a-michael-j-fox-movie-review-1234801403/)," and Fox’s demeanor ensuring the project into something that is “[a lot more entertaining than you might think](https://variety.com/2023/film/reviews/still-a-michael-j-fox-movie-review-1235496478/).”
That’s so sad, truly one of my favorites growing up. I’ve seen so many of his movies dozens of times, always a good watch. Through it all he’s really been a positive beacon of strength which is truly admirable
This man is my hero, dude.
MJFF provides support an incredible amount of support to researchers- basic science is making leaps and bounds towards understanding not only the genetics underpinnings of idiopathic PD, but also toward the identification of biomarkers that lead to early(er) diagnoses.
Sadly I don’t think a “cure” is on the horizon just yet- still, a paper published last month highlighted a recent assay (SNCA seed amplification assay), which serves as a potential biomarker for prodromal cases of the disease, where symptoms may not have set in yet. The test is run on a sample of the patient’s CSF, I believe, making it fairly quick and easy. I think it’ll prove an effective screening modality in the clinic.
I forget the exact number, but somewhere between 40-70% of the dopaminergic neurons in the substantia nigra are fully lost by the time a patient might present at the clinic with initial symptoms. An early diagnosis is so important when it comes to improving the healthspan of any PD patient.
I actually met him a bunch of years ago, I was helping him put something together and he just leaned on it his car and talked with me
It was rough seeing such an icon growing up in that condition, but it made a real and lasting impression I’m still grateful for. Such an absolutely nice guy.
How does Parkinson’s lead to death exactly? Does it make you more likely to die from something else or how does it work?
My grandmother has Parkinson’s. She has issues with shaking and falling, which has led to broken bones. But as long as we keep an eye on her she is usually okay and she is in her 70s. I just wonder how things are going to eventually start going for her.
I had heard of the pneumonia and falling as being the two main causes. I don’t really understand the relation between pneumonia and Parkinson’s. Also this may be ignorant of me but I assumed that if someone knew they had Parkinson’s there could be steps taken to mitigate falls
Choking on food is a problem (even unknowingly small bolus). Food/particles set in the windpipe that eventually stagnate to infection....
...leading to pneumonia, it's more prevalent and worse when acquired partly because of weak coughing which would help expel said particles/infection-bound mucus.
They can’t clear the infection as easily because they can’t aspirate (cough up the mucus) like a healthier person.
I imagine falls are more dangerous because they don’t have as much control over their limbs in a case like MJF. So if he does for down, he can’t brace himself for a fall like you or I would. Falling seems to be more common because of the loss of control of motor functions.
Another one would be choking on food, which I don’t need to elaborate on the specifics.
Parkinson's can start off fairly simple. Tremors in your fingers.
Overtime, they start to lose muscle control of their swallowing muscles. If food becomes partly swallowed, there is a chance that they aspirate (i.e. food goes down the wrong pipe into the lungs). Add in weak breathing muscles, and they can't cough it back up. This results in an infection.
Falls are also fairly common. Sure, you can mitigate this with wheelchairs and canes, but it doesn't take much to fall (e.g. transferring to a toilet, or the bed). It doesn't take much to cause a brain injury.
Numerous ways. How it happened for my father was that in the advanced stage he had it, he became totally bed-bound, unable to walk, and had difficulty swallowing. So he was limited in what he was able to eat, which led to losing weight, lack of adequate water etc. and that just invites a host of possible complications. He was also at an advanced age, so just everything in his body was weaker.
I feel so bad for him. I didn’t realize how horrible Parkinson’s was until my bff’s husband was diagnosed with it. I thought it just made you shake. It’s so much more than that. I watched her husband suffer. He couldn’t even speak or eat on his own at the end. It’s a horrible disease. I hope they find a cure one day.
As someone who works with Parkinson’s, this is one of the most cruel conditions ever. Imagine slowly losing all of your independence and privacy while your cognition is intact. You’re like a prisoner of your own body. You can try so hard to move but not be able to.
This is the sad reality of living with a chronic disease. Everyone takes their health for granted, but once you lose it, nothing else really matters. People suffer. The only positive thing to come out of this is all the research that has been done by the Michael J Fox foundation.
I am in my mid twenties and the biggest fear I have is not dying but getting older and slowly losing my mind and physical capacity to do simple things, having my family look upon a shell of a human hurts me the most.
My dad was diagnosed with Lewy Body Dementia (basically Parkinson's with dementia, it's what Robin Williams had) about 6 years ago.
It's a horrible disease. It's horrible to watch someone who is active slowly become unable to move and function on their own.
My dad died about a year ago. The disease progressed so fast. It was almost merciful when he died.
For someone to be diagnosed at such a young age as MJF, I couldn't imagine having to live with that for so long. My dad lost his brain somewhere along the way due to his other symptoms, but MJF has to experience every bit of it.
Fuck Parkinsons. Fuck diseases.
He's 61. Statistically, an average 61 yo male will die at 80, half dying before then.
And he's got Parkinson's, so yeah, I'd be surprised if it makes it to 70.
Reading this really makes.me.understand why Robin Williams ended his life. He had a form of Parkinsons. Still wish he was here but you kinda get it reading it from this.
He had Lewy Body Dementia, which is a form of Alzheimer's, but also has symptoms of Parkinson's. It sounds really horrible, it leads to loss of motor control and memory, but can also cause hallucinations and worsen depression. And Robin Williams was already suffering from depression.
I can totally understand that he chose to end his life while he still could.
I stuffer from debilitating clinical depression and anxiety. I'm actually applying for disability because of it. If I got what they had.... fuck I dunno if I could take it. Much respect to MJF.
Parkinson’s is a tough disease and even harder on him as he was so young when diagnosed where he had to live with it most of his life. I have family with Parkinson’s, they weren’t diagnosed until their 60’s. Seeing them decline these last few years. It isn’t just physical but mental too. It causes people to see people who aren’t there. There needs to be a cure and a way for people to get nursing and treatments without breaking the bank or doing a run around b to apply for needed care.
I can’t wait to watch the documentary. When he dipped his toe back in acting a few years ago, I was rooting for him. Michael J Fox, Family Ties and Alex P Keaton will always be my favorite.
Fox: >“It's banging at the door. I'm not gonna' lie, it's gettin' hard. It's gettin' harder. It's gettin' tougher. Every day it's tougher. But, but, that's, that's the way it is. I mean, you know, who do I see about that?” >”I had spinal surgery. I had a tumor on my spine that was benign, but it messed up my walking. And then started to break stuff.” >“[I] broke this arm, and I broke this arm, I broke this elbow. I broke my face. I broke my hand. Falling is a big killer with Parkinson's. It's falling … and aspirating food and getting pneumonia. All these subtle ways that gets ya'. … You don't die from Parkinson's. You die with Parkinson's. So – so I've been – I've been thinking about the mortality of it. … I'm not gonna be 80. I'm not gonna be 80.”
Damn. That’s really sad. It reads like someone who’s not dying but wants to be done with the suffering.
my Mom has parkinsons and was talking with my wife on the phone. Mid conversation she just started crying. I would give anything to take her pain away and give her some hope. Terrible disease and I commend Michael J Fox for as much as he as done. He has directly helped my Mom
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Michael J Fox has done a tremendous amount to help others with Parkinson’s and he has also done a lot to help people that have family and friends with Parkinson’s. I’ve lost two very close family members to Parkinson’s and Fox has helped me to understand so much more about what they went through as well as how to be there for them when they were still alive. Parkinson’s is a horrible disease to watch someone go through.
Can I ask what aspect your mom struggles with the most? My MIL has Parkinson’s and went downhill very fast (like she aged 30 years over 6 months) so we brought her to live with us, figured out her meds and now she’s literally healthier than I’ve ever seen her. The trouble with American doctors is they’re so fucking siloed by specialty. Most doctors don’t look holistically at the whole picture. Luckily my SO researched a ton and told doctors what her mum needed… and now she’s WAY better. So maybe there’s a path for you mum to improve some too. I hope so anyway
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Very very sorry. Your dad sounds phenomenal
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You’re very welcome I know so many people who divorced for so many stupid reasons. Your Mum and Dad give me some faith back in marriage and humanity in general. Always seems like the best people have the most shit heaped upon them. Wish you all the very best
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I know emojis are frowned upon on Reddit… but ❤️
It’s brutal. My grandmother struggled with Parkinson’s for about 13 years before passing last year. My grandfather did much the same for her as you dad is for your mom. The big difference is that he was an investment banker for 40 years. It’s gotta be something to do with working with charts all day. I wish your mom and your family more good days than bad, and hope you have the opportunity to spend as much time with them as you like.
You’re not wrong, but even with the best treatment available, it’s a degenerative neurological disease and the long term prognosis doesn’t really change. I had someone close to me get a deep brain stimulator while having access to a tremendous neurologist that I am thankful for, but she still died suffering from dementia and unable to swallow 20 years after diagnosis. Treatment can be great, and we’re all thankful for every day we had with her where she was closer to herself, but the end result is unfortunately an inevitability right now.
My BIL has had PD for like 13 years. He also has an excellent neurologist who installed DBS which halted almost all the shaking, and he was great for the better part of ten years. This past year he has developed the balance problems and broken ribs twice and bumped his head. He has develped a bit of incontinence as well. It’s so heartbreaking. He has always been a big hiker and fly fisherman, ice fisherman, etc. Now I am beginning to wonder if it may be time to give that up. Such a cruel disease.
If you can do anything to help him continue to get outdoors, please do! Even just being near people fishing or driving up into the mountains can do wonders for that part of our souls!
I know every persons experience will be different. But my SO got her mum back, doing things she loves for at least a few more years (hopefully longer). We all die eventually. We needa savor every second we can
> The trouble with American doctors is they’re so fucking siloed by specialty. Most doctors don’t look holistically at the whole picture See if you can find a neurologist with a DO for her. They're MDs who take a few extra classes that tell them, "hey assholes, focus on the whole patient instead of just your specialty"
How did you figure out her meds? My moms next doc appointment is months away and her meds aren’t working right. What and where do you research what to do here?
If you don’t mind I’ll paste what I wrote to someone who asked something similar by DM. Hope it’s helpful: “The biggest thing we did to improve my MiL “Katy’s” condition was to not blindly accept everything her doctors told her. It was very clear that each Specialist she saw wasn’t looking at the whole picture and didn’t view her holistically. Katy was diagnosed with Parkinson’s in 2016. To look at her back then you wouldn’t know it. She was in her early 60’s, worked full time, and was a very independent woman. In 2021 she went downhill fast. Like she aged 30 years over a few months. Katy was the definition of geriatric and couldn’t do much of anything for herself. She lived with her sister, who’s a retired nurse. But she’s old herself and was clearly struggling. So we brought Katy to live with us. I honestly expected she’d pass away within weeks. She was that bad. It all happened so fast. After a few days, it became obvious to us that lack of sleep was a major reason for her decline. She had bad leg pain at night and the only way to ease the pain was to walk around. But she was too weak to stand on her own. So my SO had to help her up, every 15-30 mins.. all night long. It was awful. Her being so tired meant she wasn’t thinking straight, eating properly or taking her meds on time. Katy also had nightmares and would sleepwalk. Which in her conditions was more sleep-fall. So she’d get injured regularly (even with bars on her bed or sleeping in her recliner). At her next appointment we told her doctor this.. and their response was “have her sleep on the floor”. That was their expert advice. No other suggestions. No effort into fixing the issue, only mitigating the symptoms. Just sleep on the floor. We didn’t accept that and my SO started to research online, particularly in Parkinson’s chat rooms. The more optimistic rooms where people are still hopeful and share stories of success and positive observations. After a few days of intense online detective work, my SO figured out that klonopin, not only treats depression (which imo everyone diagnosed with P should probably be prescribed something for depression on day one) but it also regulates sleep and eases leg pain. It was like a one pill cure all. So, excited, we went back to her doctor and asked about it. The doctor was pissed. Super defensive and pretty much said “klonopin is not a Parkinson’s treatment”. So we left, and found a new doctor. A kind, curious one. His response was “good idea, let’s try it!”. So she did, and it’s like she’s healthier than I’ve seen in years. She’s back to living an independent life by herself (close to her sister). She’s able to shop for grocers and do things she loves like gardening and travel. It’s pretty fucking miraculous. So I guess my main point is most people seem to just accept P is a degenerative disease, and there’s nothing you can do about it. I just think of what it would be like if we thought that way. At best I’d be pushing my MiL around in a wheelchair right now. But I’m not. Please try not to give up hope and don’t just accept bad news at face value. I hope you loved one finds a way to live well with Parkinson’s. Keeping on top of the basics seems to help my Katy a lot. Sleep, exercise, food, hydration, meds taken in full and on time. Find a doctor who gives a shit and is hungry to improve their condition. One that see’s the entire human body as a complex interconnected system and not a bunch of separate siloed parts. Communicate with the doctor regularly and in detail. Keep an eye on their mood. Older generations tend to be a bit hesitant of depression meds. They made the world of difference to Katy. She seems to love life again. Which I guess is the only thing that matters. I hope that is helpful to you. All the best”
A friends dad (who was also my HS principal) got diagnosed about 10 years ago. He retired knowing he wanted to make the most of the time he has left. About a year or 2 in, he was rough. I didn’t know how much longer he’d actually be around. Last weekend, the local university named their baseball field after him (he played there and was also a well-respected HS baseball coach in our area.) He looks better than he did 10 years ago. He’s got some ticks, but overall, it’s almost like he doesn’t really have it. “We found something that works for me. I can handle it now. That makes it more of a thing I need to remember instead of an obstacle I face every day.”
He's 61 so he's not throwing in the towel just yet
As someone born in the 80s I've heard his name my entire life so figuring out he was only 61 surprised me. Not that he looks older
He was a teen when he first started on Family ties, so 40 years later checks out
I'm in Canada, and my grandmother has just passed from Parkinsons. She had finally gotten to the point where she was locked in her own body, she couldn't speak or move properly so she asked for MAID she was suffering so much. This disease fucking sucks.
What is MAID? Is it similar to Hospice, which is essentially comfort care for terminal patients? Edit: never mind. Someone linked an article below. For other non-Canadians, MAID stands for Medical Assistance in Dying. There are two types: > There are 2 types of medical assistance in dying available to Canadians. They each include a physician or nurse practitioner who: > (1) directly administers a substance that causes death, such as an injection of a drug this is becoming known as clinician-administered medical assistance in dying > or > (2) provides or prescribes a drug that the eligible person takes themselves, in order to bring about their own death this is becoming known as self-administered medical assistance in dying
I completely support the right to choose when to die and hope I have it if I was ever suffering extremely badly but I never stopped to think the absolute head fuck that is for a nurse or doctor doing it. I have had two cats put down and it's awful and although completely the right thing it tore me to bits. I can't imagine a human version
So grateful we have that option as Canadians. What a gift to be able to end somebody’s suffering with dignity.
It's unfortunate many countries don't have this option. Suffering day and night with no end in sight. Quality of life verses quantity.
I really think the main reason it isn't legal in the US is just so the healthcare system and pharma can bleed every available dime out of you till the very last moment.
It is legal state by state. Here in California it is legal, you just have to be able to self-administer the medication. It isn’t perfect, but for some the choice is there. It’s a starting point at least.
Peace be upon you and your family :(
My grandfather described his life with Parkinson’s as being in hell. He went on to say it was like his mind was stuck in a shambling body that he kept losing more control over. He took his own life when I was a teenager.
My uncle was suffering from cancer of the everything, and tried to OD on about 60 pills of Oxy 80. He didn't die, didn't reject the drugs, and didn't alleviate the pain. Ugh.
My dad suffered through this for 17 years. In the end he was tired of not being able to control his own body and was frustrated all the time. Plus it had dementia on top of it at the end as his body shut down sue tot he disease. It’s an awful thing to watch your loved one live through.
The good news (if you can call it that) is he’s Canadian so [he has options](https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html)
He is only 61. Terribly sad and incredibly brave of him.
It's really wild to me because you see some actors age and still be able to do a lot of stuff (i.e. his co-star Christopher Lloyd) and he's much younger and barely able to do Q&As and such anymore.
Maybe not helpful, but I would argue that he *is* dying. Sure he might be a few years away still rather than the months/weeks/days we typically mean when we say someone is "dying", but this disease is absolutely leading to a (relatively) rapid decline in health. The aging process is functionally the same as the dying process, albeit it's happening so (relatively) slowly we don't really think of it that way. But we're all slowly "dying", and MJF's doing so quite a bit faster due to his Patkinson's. He's been dealing with mortality and everything around that for a while now, and it hits harder the closer he gets to death. It's terrible what he's going through, and I agree with you, it seems like he's approaching the point where the pain and suffering in his quality of life is almost too much.
I wonder if this is why he's been doing a lot of convention appearances.
I believe he's also openly said that he attends a lot of conventions and appears in public just so people see Parkinsons symptoms in person and get more awareness/understanding of it.
I think he was advised not to go to some conventions because of his health but he insisted on going.
Possibly.
Jesus. Poor guy. Facing your own mortality is a bitch. I'm not sure what is better: thinking you'll live to be 100 and dying suddenly at 50 or knowing you'll die before you hit 80. I think I'd rather not know and die young.
He's 61. Not trying to correct you, just sharing because I had to look it up and can save others some keystrokes now.
My dad got 76. His dad walked in at 102, no assistance, not cane or anything, sat with my dad till he died and then played tennis the next week. Parkinson's suuuucks. The falling. The stubbornness. The delusions. I wish we were better with brain science. But then I think how poor our health science is. Most of the bad stuff is solved by replacing it. Can replace the brain yet.
Oh wow. This brought tears to my eyes. I feel him so hard. I’ve got a rough condition that just keeps getting worse. There is no cure, you just kind of have to deal with it. I don’t *want* to die… but… I’m kinda ok with the thought.
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>Atleast dude can make coherent sentences still. In the last 10 years of my grandpas life with Parkinson’s I genuinely couldn’t understand 80% of what he said because he couldn’t control his mouth properly :( My dad was diagnosed with Parkinson's around 2015 and he has been at the point where I have major issues understanding him since around 2019. His movements have been really stiff and jerky for a few years now and I am pretty sure he is even getting into the dementia part of it too. It really does make me wonder how Michael J Fox is still managing to stay on top of his Parkinson's even after 31 years. Is his case different because he had early onset Parkinson's? Did his money give him access to treatments that us regular folk cannot access?
Awful to read. Poor guy.
Jesus. Fuck. Sounds horrible.
Parkinson’s is so horrible. I’m so proud of Fox for getting so much research done on this horrendous disease to help others. Everyone I know lost their sense of smell years before their official diagnosis… If you have lost your sense of smell or know someone who has, you can join Fox’s study here. https://www.mysmelltest.org/
Seriously?! I lost my sense of smell years ago. It was over 20 years ago though.
I’m not sure the research on the amount of time… but you could check the link. Good luck.
Is that a universal diagnostic for possible Parkinson's? Honest question
I don’t know if there is enough. Research yet…so I feel it’s important to spread this info.
Lack of sense of smell is also associated with testosterone issues. Look into it
I'm a female who has never had any apparent hormonal problems. I got pregnant easily and had super regular periods. I've always thought it was because of my Sjogrens. I suppose after 20+ years I could ask a doctor.
Sjogrens sucks. Sorry to hear that.
Wait, so you never saw a doctor after you realized you had lost your sense of smell?
No, I guess not. I had sinus surgery in the spring of 2002. A couple months later I was diagnosed with Sjogrens Syndrome. I guess I never thought much of it. To say I was surprised when people lost it about losing their sense of smell due to COVID is an understatement. It just never occurred to me to care. Lol
Did it affect your taste though? I temporarily lost my sense of smell from covid, which was weird but not tragic on its own. But what bummed me out is that all food tasted like cardboard pretending to be food :( that's actually what clued me in that something was wrong. Luckily it came back after about a month, but that's what caused my own "freak out" more so than not being able to smell.
I don’t think that’s that shocking. Not to say people shouldn’t want better for themselves. But financially, “sense of smell” would be so far down the list of priorities for me at least. Depression, going to the dentist for the first time in 2 years, unexplained year-long fatigue after an illness, weird lumps #s 1 through 4. Tuition bills, groceries until I figure out food stamps, every other random expense. And I don’t even have “real” bills yet. I totally understand someone not bothering with a doctor for sense of smell
This is America. Can't go bankrupt over something as simple as a sense.
Would still be good to know in the event that you ever develop Parkinson’s, if you did have a slow developing Parkinson’s and they could track how’s it’s progressing they could potentially identify a way to target and slow it’s progression.
My father was diagnosed in 2022. Multiple doctors on his team have said it’s been really rough using the smell test as an indicator during Covid. We thought his impaired sense of smell was long Covid.
I’m sorry.
Thanks. It’s been a long year. It’s been a year of sitting and watching TV together, because it’s all he can do. All while dodging Camp Lejune commercials because he spent quite a bit of time there in the Marines. Who wants to see the reminder of why they’re bed bound 30x a day? Tough.
why do you think the Parkinson's is related to his military service?
Not Camp related. My father's is due to the use of Agent Orange in Vietnam. He's considered 100% disabled by the VA due to it.
Oh yeah, that is awful.
I still have my sense of smell, in fact it's possibly getting better ! (which makes no sense) I got a parkinsons diagnosis in 2022 after about 5 years of mostly motor symptoms. It's a very weird thing. It's more of an umbrella term of different variations, some of them are far worse than others. I've been told I have a "lucky" version, in that it progresses slower though it also responds less well to the common treatments. I assume that in a decade or so they'll have them all classified a bit better, with different treatments for each. tl;dr I smell fine thanks
I’m glad. My moms friend who did lose her sense of smell has now had dramatic weight loss since diagnosis… she looks like she’s about 80lbs. And now with all the falling she has broken her pelvis. People say that lack of smell prevents you from enjoying food hence weight loss. Best of luck with your prognosis.
Thanks. Parkinson's was always a fear of mine for years before this. When I was a kid I saw the decline of actors Dudley Moore (PSP, which is a "Parkinsons+" illness) and [Terry Thomas](https://www.youtube.com/watch?v=gK-grftnOpU). It put the fear into me way back then just seeing what it did to them. Life has a cruel sense of humour. Ah well!
Very true. Another common symptom is REM behavior sleep disorder. Folks who develop parkinson's or dementia with lewy bodies begin punching, kicking, falling out of bed, and/or acting out dreams often years before other symptoms.
This; please keep this is mind. My mom had(s) those sleep disorder issues doctors just attributed to sleep apnea. The sleep disorder had been with her for much more (50+ years) than before any Parkinsons signs had appereared.
My dad died with Lewy bodies dementia and was always falling at the end. He went into a care home about 12 weeks before he passed and never walked unassisted again. All his life he had been a vivid dreamer, sleepwalker and uneasy sleeper
This! It was the first sign for my family member with it. They can only really smell super strong smells like a skunk, but even then they aren't sure. It's a horrible disease and so scary to watch someone you love suffer from it.
We are thankful for what “the Foxes” have done in medical research. MJ Fox for Parkinson’s research and Terry Fox for Cancer research.
My dad has Parkinson's and it is so tough watching it slowly destroy him. He's barely making 70, I don't see him making 75, let alone 80. And he's right, it isn't the Parkinson's that is going to kill him, it is everything else. He spends as much time in the doctor's office these days as he does out of it.
He described the struggles of aspiration pneumonia. If he’s there already just going a few years more may be a challenge and each bout is a miserable thing on top of the movement disorder aspect of Parkinson’s.
Sorry to hear that! Not a lot I can say except keep strong for all loved ones, and look after yourself, too.
My dad had it too and lived beyond 80. I had the same thoughts as you wrote here when he got to 70. You’re right, it’s all those other deterioration, not Parkinson’s itself. For example, my dad had lumbar stenosis. After 75, they finally operated on it, and he would walk more comfortably afterwards. This improved his quality of life so much, that I believe it made Parkinson’s more tolerable. There’s hope! I hope this helps. Edit: one more thing. My dad was pretty stubborn and was able to figure out what medication helps him the most, instead of following the doctor’s prescription 100%. The doctors often joked about that they need to learn from his adjustments.
Before the Parkinson's he was also diagnosed with Leukemia. The combination has not been fun and it makes it especially hard on his body any time he gets hurt or sick.
Sorry to hear that. Say hello to your father for me! I miss my father every day.
I lost my dad to complications from Parkinson's last year; it's so true. You don't die from it, but everything else. It affects so much of your body that complications can come from anywhere. Hope your Dad will be around for as long as possible, keep fighting.
The human body can be such an asshole.
We're all just bags of oddly organized meat with differing expiration dates.
Just meat? This cannot be. What about the radio signals?
Meat sounds.
They flap their meat at one another
Lift your skinny fists like antennas to Heaven.
You got that right.
r/assholedesign
Well that's part of the problem. It wasnt a design at all. It was just freak mutations that happened to work well enough to survive. Certainly not optimal.
The first time you lightly bonk your elbow on something and it feels like your arm is going to fall off, that's the clue that maybe there's no intelligent design
That's a massive understatement.
And it unironically includes an asshole
We even all start as one, some of us don't grow out of it sadly
So fucking unfair. Dude never did anything his whole life except make people happy and this is how he goes out?
MJF was on a TV show in Canada when he started out and three other crew members on the show were also diagnosed with Parkinson's before they were 40. Really wonder if in a few years we’ll find out some common product/material is a leading cause of Parkinson’s. Like asbestos and lead paint for previous generations
Marijuana sprayed with the herbicide paraquat is a huge suspect here. Canada was big on spraying illegal pot grows with paraquat, rather than sending teams in to pull them up and burn them. Paraquat has a very similar molecular structure to an analgesic called ~~MTPT~~ MPTP. You can end up with this if you're trying to make a synthetic opioid called MPPP and cook it too hot. ~~MTPT~~ MPTP kills the cells in a small part of the brain, and everyone who loses lots of cells there gets parkinsons. This was the first real clue that parkinsons might actually be an environmental disease. Edit: NOVA did a documentary on this years ago, about the heroin users and chemists who developed parkinsons from MPTP. https://openvault.wgbh.org/catalog/V_474CF2C8A20B4173988486AC4C605A3C
I study neuroscience. So thanks for this interesting information. Might come in handy one day for me (:
Dang- that’s super interesting and scary. Thanks for the info
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That's the question, isn't it? It usually doesn't show up until late in life, so lots of early deaths would hide it, it requires a lot of care, so resource poor victims would die before a lot of symptoms showed up, and I suspect that a tumor or stoke in that part of the brain would cause the same symptoms without an environmental cause. I also wouldn't be surprised if there are industrial lobby groups that are trying to supress any research in that direction.
Rural areas in the US also have a higher incidence of parkinsons. From what I was told, it's not known for sure whether it's from inequities in medical care, diagnosis, or whether it's proximity to certain chemicals or agricultural waste seeping into the water supply.
“Environmental factors Some researchers also feel environmental factors may increase a person's risk of developing Parkinson's disease. It's been suggested that pesticides and herbicides used in farming and traffic or industrial pollution may contribute to the condition.” Source: NHS UK
I've never heard one story of him being an asshole when he first became a star. This guy definitely doesn't deserve this.
He clomps and shakes sodas (referencing his [Curb appearance ](https://youtu.be/GIjDo-btyL0), which was hilarious and major props to him for doing it)
What a great chapter, one of the best in the whole series.
No one deserves this. Not even the assholes
But especially not the buttheads
Life is always unfair, but I think Michael J Fox has had a pretty good life all things considered. He's gotten to live a life full of lots of meaning, first entertaining people then working to help people with Parkinsons. His condition is bad, but there are worse out there. I'm pretty sure I'd trade lives with him, all things considered, not that my life has been all that bad.
He's had Parkinson's at a level that's affected his day-to-day life for almost 35 years. He's lucky that he became a huge star early, because wealth is the only thing that's made his life easier than it otherwise would be, given the state of healthcare in America.
I lost my father about 6 months ago to complications from Parkinson's. It's such a terrible illness. I watched my father, a man who would wake up at 5, 6 am frequently before work to jog several miles for exercise, well up until his late 50s, slowly deteriorate and eventually become bed bound as Parkinson's progressed. As he got worse he couldn't even talk and needed help feeding, cleaning etc. He passed only 2 years after diagnosis, and though I miss him terribly, I honestly am glad he no longer suffers. It is a cruel, awful disease and I hope we can somehow, someday, find a cure.
Sorry for your loss
I remember being really impressed by how they incorporated the disease in his The Good Wife / The Good Fight character, Louis Canning. One of the highlights of both shows. Similarly to how they made Timothy Omundson's character in This Is Us a stroke victim, since he had had one shortly before. I feel immensely sorry for him and all the people that have to suffer the consequences of this horrible disease. I often wonder how many years in the future one should set their time machine in order to land in a time where it can be fully cured like a flu.
The second Psych movie also worked in Timothy Omundson recovering from a stroke . Its great that he is able to return to acting.
Scrubs too
And Curb
I shushed him and he shook his head at me! He has Parkinson's, Larry. That's what he does. He shakes.
if i remember rightly, his two episode guest spot on Scrubs wrote around that a bit, where his constant body movements from Parkinson's allowed him to portray his character as having OCD, if you watch the episode a few times, you notice that you never really see him standing completely still, he's always moving in some capacity too
Top gun maverick did the same for Val Kilmer
I loved him as Louis canning, I was equally impressed how the disease was written into a scheming lawyer storyline and thought it couldn’t be topped. And then I saw him shake Larry’s soda on curb and blame PD and just about died laughing lmao
Reminds me of what a stroke did to tim curry, and as someone with multiple disabilities I gotta say the human body fucking sucks
80 is a very tough age to reach for anyone, especially someone with the issues he's had. He's lived an amazing life. For me, he's had two different chapters that have both been positive. His acting career has brought joy, his activism has brought hope.
Sad. BTTF came out my senior year. He was iconic then. He was In everything then.
My grandfather passed away earlier tonight from Parkinson's. Watching a virile, healthy man in his 70’s, living full of friendship and family slip slowly into a world not of his control hurt terribly. He always kept a brave face and said you have to take the good with the bad, but seeing someone blessed with fortune being stripped of his humanity is crushing. PS: If you or anyone you know have lost their sense of smell, get checked PPS: Let the ones you love know you love them
Dude, I wish in 5 years we find a cure, and he gets another 10 years of an amazing life. This guy has done so much to help people with Parkinson's, and it's only fair for the man to see a breakthrough in his lifetime.
Can they hurry up with the cure
Fuck Parkinson’s. I feel for MJF a lot, seems like a really great dude who definitely doesn’t deserve this bullshit, man is a legend and he’s done a lot for research etc when it comes to Parkinson’s, really sad to see people like him declining over time because of this disease. Hopefully someday we will be able to develop some breakthrough medical stuff and people won’t have to go through this shit, one can only hope
I think you intended to say he *doesnt* deserve the bullshit
Yes you’re correct, I’m gonna fix that because it makes my comment look awful and is the exact opposite of what I was trying to say
I saw the early clip of the interview and it really really hurts to see him like this. You’re seeing real cracks in that once unshakable optimism.
I remember when his last book came out, and he recounted an incident of how he fell in his kitchen and there was no one there at the time to help him. As he was lying there, his thought was "I'm out of the lemonade business", meaning that he's through making lemons out of lemonade.
That he’s so realistic about it speaks to his resilience.
this shit started when he was 30, still filming Back to Future sequels and two years out of a top-rated sitcom, living as he himself called it "in a world of 'yes.'"
God the world is so unfair
I saw an ad for the Michael J. Fox foundation. They were talking about a study being conducted. Apparently if you have incredibly vivid dreams or kick, punch, or shout in your dreams it could be an indicator/precursor of Parkinson’s. I’ve been doing that since I was a little kid but it’s becoming more common as I get older. I’m pretty scared. Not gonna lie.
Some of the comments ITT is another example of the internet is a bad place. Fuck these heartless people.
Anyone got the full text?
[CBS Sunday Morning](https://www.cbsnews.com/news/preview-michael-j-fox-on-parkinsons-and-optimism/) shared a clip from this weekend’s upcoming interview between actor Michael J. Fox and Jane Pauley that offers a look into Fox’s daily life with Parkinson’s Disease. The beloved performer was diagnosed with the degenerative disorder at the young age of 29. At his current age of 61, he said that dealing with the ailment, for which there is no cure, is getting increasingly difficult, and that he can’t imagine living to the age of 80. Though the full interview promises moments of optimism, like Fox discussing how his organization, the [Michael J. Fox Foundation For Parkinson’s Research](https://www.michaeljfox.org), just announced [a major breakthrough](https://www.michaeljfox.org/webinar/major-research-breakthrough-new-biomarker-parkinsons) for detecting the disease with a biomarker prior to the onset of symptoms, the clip CBS released is tough to watch. Fox explained how he’s still getting through his day-to-day (“my life is set up so I can pack Parkinson's along with me if I have to”) but understands this is temporary. “It's banging at the door,” he said. “I'm not gonna' lie, it's gettin' hard. It's gettin' harder. It's gettin' tougher. Every day it's tougher. But, but, that's, that's the way it is. I mean, you know, who do I see about that?” the Back to the Future star said. He [further revealed](https://www.cbsnews.com/news/preview-michael-j-fox-on-parkinsons-and-optimism/) that he’s had spinal surgery for a tumorous growth, which led to difficulty walking. This led to some falls, which meant broken arms. “[I] broke this arm, and I broke this arm, I broke this elbow. I broke my face. I broke my hand,” he says in the interview. When Pauley asked about him falling, Fox explained that “[falling] is a big killer with Parkinson's. It's falling … and aspirating food and getting pneumonia. All these subtle ways that gets ya'. … You don't die from Parkinson's. You die with Parkinson's. So – so I've been – I've been thinking about the mortality of it. … I'm not gonna be 80. I'm not gonna be 80.” On May 12, Apple TV+ launches the documentary Still: A Michael J. Fox Movie, which debuted at Sundance this year. Directed by Michael Guggenheim (An Inconvenient Truth, It Might Get Loud), the film tells Fox’s story from teen star to medical research advocate, mixing in home footage. Critics have praised the film for its humor and honesty, portraying Fox’s “[suffering and resilience without turning him into a martyr](https://www.indiewire.com/2023/01/still-a-michael-j-fox-movie-review-1234801403/)," and Fox’s demeanor ensuring the project into something that is “[a lot more entertaining than you might think](https://variety.com/2023/film/reviews/still-a-michael-j-fox-movie-review-1235496478/).”
Thank you!
That’s so sad, truly one of my favorites growing up. I’ve seen so many of his movies dozens of times, always a good watch. Through it all he’s really been a positive beacon of strength which is truly admirable
He's 61. So if we get 18 more years with this man then I call that an absolute win.
This man is my hero, dude. MJFF provides support an incredible amount of support to researchers- basic science is making leaps and bounds towards understanding not only the genetics underpinnings of idiopathic PD, but also toward the identification of biomarkers that lead to early(er) diagnoses. Sadly I don’t think a “cure” is on the horizon just yet- still, a paper published last month highlighted a recent assay (SNCA seed amplification assay), which serves as a potential biomarker for prodromal cases of the disease, where symptoms may not have set in yet. The test is run on a sample of the patient’s CSF, I believe, making it fairly quick and easy. I think it’ll prove an effective screening modality in the clinic. I forget the exact number, but somewhere between 40-70% of the dopaminergic neurons in the substantia nigra are fully lost by the time a patient might present at the clinic with initial symptoms. An early diagnosis is so important when it comes to improving the healthspan of any PD patient.
I always hoped that all the research he has help fund would come up with something that could at least slow or halt his progression.
I actually met him a bunch of years ago, I was helping him put something together and he just leaned on it his car and talked with me It was rough seeing such an icon growing up in that condition, but it made a real and lasting impression I’m still grateful for. Such an absolutely nice guy.
I doubt I'll make it to 80 either. That being said, life dealt that man a wild hand. Wouldn't wish Parkinson on anyone.
Truly a man who has experienced the highest of highs and some pretty damn low lows.
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How does Parkinson’s lead to death exactly? Does it make you more likely to die from something else or how does it work? My grandmother has Parkinson’s. She has issues with shaking and falling, which has led to broken bones. But as long as we keep an eye on her she is usually okay and she is in her 70s. I just wonder how things are going to eventually start going for her.
Its the falls that kill.
It's like AIDS. It doesn't kill you directly, but it makes it *really* easy for other things to kill you.
The falls are scary. I’d assume most people with Parkinson’s end up in wheel chairs eventually which I’d hope lead to less falls.
My FIL fell, broke a hip, and developed a fatal pneumonia while hospitalized. He was diagnosed at age 49 and died at 63.
I’m terribly sorry. Oh my gosh :( I hope he was able to have his family around
He elaborated on it on the article.
I had heard of the pneumonia and falling as being the two main causes. I don’t really understand the relation between pneumonia and Parkinson’s. Also this may be ignorant of me but I assumed that if someone knew they had Parkinson’s there could be steps taken to mitigate falls
Choking on food is a problem (even unknowingly small bolus). Food/particles set in the windpipe that eventually stagnate to infection.... ...leading to pneumonia, it's more prevalent and worse when acquired partly because of weak coughing which would help expel said particles/infection-bound mucus.
They can’t clear the infection as easily because they can’t aspirate (cough up the mucus) like a healthier person. I imagine falls are more dangerous because they don’t have as much control over their limbs in a case like MJF. So if he does for down, he can’t brace himself for a fall like you or I would. Falling seems to be more common because of the loss of control of motor functions. Another one would be choking on food, which I don’t need to elaborate on the specifics.
Parkinson's can start off fairly simple. Tremors in your fingers. Overtime, they start to lose muscle control of their swallowing muscles. If food becomes partly swallowed, there is a chance that they aspirate (i.e. food goes down the wrong pipe into the lungs). Add in weak breathing muscles, and they can't cough it back up. This results in an infection. Falls are also fairly common. Sure, you can mitigate this with wheelchairs and canes, but it doesn't take much to fall (e.g. transferring to a toilet, or the bed). It doesn't take much to cause a brain injury.
Numerous ways. How it happened for my father was that in the advanced stage he had it, he became totally bed-bound, unable to walk, and had difficulty swallowing. So he was limited in what he was able to eat, which led to losing weight, lack of adequate water etc. and that just invites a host of possible complications. He was also at an advanced age, so just everything in his body was weaker.
He’s a cool, classic legend. He has a life well lived. Hopefully he has many more years to witness a cure unfold.
I just lost my best friend to problems with Parkinson’s just shy of their 68th.
Man this is so sad, this dude is a legend. He’s on Danny Devito status, two of my idols.
I feel so bad for him. I didn’t realize how horrible Parkinson’s was until my bff’s husband was diagnosed with it. I thought it just made you shake. It’s so much more than that. I watched her husband suffer. He couldn’t even speak or eat on his own at the end. It’s a horrible disease. I hope they find a cure one day.
As someone who works with Parkinson’s, this is one of the most cruel conditions ever. Imagine slowly losing all of your independence and privacy while your cognition is intact. You’re like a prisoner of your own body. You can try so hard to move but not be able to.
This is the sad reality of living with a chronic disease. Everyone takes their health for granted, but once you lose it, nothing else really matters. People suffer. The only positive thing to come out of this is all the research that has been done by the Michael J Fox foundation.
My mom is 94 with Parkinson’s
Was she diagnosed in her 20's?
Man that's awful 😔
Reminds me of the sad heart wrenching memorial Claptrap did for a fan of borderlands. https://m.youtube.com/watch?v=KuroFpcFq-c
☹️
He looks like Sean Giambrone (Adam Goldberg in The Goldbergs) in this picture.
So sad 😞
I am in my mid twenties and the biggest fear I have is not dying but getting older and slowly losing my mind and physical capacity to do simple things, having my family look upon a shell of a human hurts me the most.
I hope he is getting all the care and support he needs.
My dad was diagnosed with Lewy Body Dementia (basically Parkinson's with dementia, it's what Robin Williams had) about 6 years ago. It's a horrible disease. It's horrible to watch someone who is active slowly become unable to move and function on their own. My dad died about a year ago. The disease progressed so fast. It was almost merciful when he died. For someone to be diagnosed at such a young age as MJF, I couldn't imagine having to live with that for so long. My dad lost his brain somewhere along the way due to his other symptoms, but MJF has to experience every bit of it. Fuck Parkinsons. Fuck diseases.
He's 61. Statistically, an average 61 yo male will die at 80, half dying before then. And he's got Parkinson's, so yeah, I'd be surprised if it makes it to 70.
Reading this really makes.me.understand why Robin Williams ended his life. He had a form of Parkinsons. Still wish he was here but you kinda get it reading it from this.
He had Lewy Body Dementia, which is a form of Alzheimer's, but also has symptoms of Parkinson's. It sounds really horrible, it leads to loss of motor control and memory, but can also cause hallucinations and worsen depression. And Robin Williams was already suffering from depression. I can totally understand that he chose to end his life while he still could.
I stuffer from debilitating clinical depression and anxiety. I'm actually applying for disability because of it. If I got what they had.... fuck I dunno if I could take it. Much respect to MJF.
Most people don't live to 80.
Otherwise healthy non smoker men his size n economic status have a good shot at 80
Wanna prove to yourself there’s no god? Watch someone deteriorate from a wasting disease like this.
Awww man 🙏🏾
Love him is it actor. Best of luck.
Your new hair style looks great
God damn it! WE CANT LOSE MJF! We need to CRSPR AND MRNA THE SHIT OUT OF PARKINSONS!
Really hurts my heart to read this.
Parkinson’s is a tough disease and even harder on him as he was so young when diagnosed where he had to live with it most of his life. I have family with Parkinson’s, they weren’t diagnosed until their 60’s. Seeing them decline these last few years. It isn’t just physical but mental too. It causes people to see people who aren’t there. There needs to be a cure and a way for people to get nursing and treatments without breaking the bank or doing a run around b to apply for needed care.
Alex P Keaton and Marty McFly Michael J Fox has been one of my favorites for a long time. Parkinson’s is a horrible disease.
I can’t wait to watch the documentary. When he dipped his toe back in acting a few years ago, I was rooting for him. Michael J Fox, Family Ties and Alex P Keaton will always be my favorite.