Yeah - it really varies, my dad lived with it for twenty years as a happy retiree - traveling, socializing, golfing. Something else killed him.

Exercise is very important, that’s perhaps one thing you could tell her you’ve heard.

OP, I think you are fearing the worst because you are worried you will somehow be responsible. I get it - you probably are worried that you will feel regret if she does get worse and you didn’t “warn” her. But really lots of people live with Parkinson’s! My friends dad has it, he travels internationally and lives alone and does a lot of stuff. Just let her deal with it how she wants - you won’t end up her caregiver.

Anonymous wrote:

Anonymous wrote:My MIL has been living with Parkinson's for 30 years and still has a lot of mental acuity. She had a good 10 years before she needed any sort of help around the house. She had a pacemaker put in, for heart issues unrelated to the Parkinson's, and now at 90 she regrets it because she's now going to die of Parkinson's, not heart failure.

All this to say... your friend might well die of something else before her Parkinson's gives her real trouble.

My Dad only had a few ok years after diagnosis. Can't imagine him as a caregiver during any of that time.

Presentation of Parkinson’s can vary wildly. We thought my Dad had PD but he had one of the more aggressive diseases that sort of mimics it. Carbidopa levidopa helped but not that much. Like you, my Dad had maybe a few good years, two terrible years and then he passed away. But in learning about PD, I believe our dads are outliers.

Anonymous wrote:My MIL has been living with Parkinson's for 30 years and still has a lot of mental acuity. She had a good 10 years before she needed any sort of help around the house. She had a pacemaker put in, for heart issues unrelated to the Parkinson's, and now at 90 she regrets it because she's now going to die of Parkinson's, not heart failure.

All this to say... your friend might well die of something else before her Parkinson's gives her real trouble.

My Dad only had a few ok years after diagnosis. Can't imagine him as a caregiver during any of that time.

Anonymous wrote:We are on good terms and chat about once a week, sometimes I help her with some things like neighbors do.
She is not in great shape, still works as a live in caregiver (so it’s not really her house and she is supposed to leave once her charge passes away), and her family is on another continent.

She told me she was diagnosed with Parkinson’s and she just brushes it off like it’s no biggie. She does take the pills but she is dragging her feet in scheduling the brain scan that’s supposed to confirm the diagnosis.

I am worried she has no one here who is willing to take on her care. To be completely honest I don’t want to be “it” even though she does have some sort of friends.

She isn’t making any plans. She doesn’t even have a follow up appointment with the dr who diagnosed her.

Is there anything I can tell her that would help her in her care? I only did some basic research and looks like she’ll need PT, and that her condition can become way worse in about 5 years even despite pills.

Ideally I think she should go back to her family and settle there before she becomes disabled, but she seems to have some fantasies about how she’ll get a section 8 apartment and how she will retire after her charge passes away (she may decline way before then, imho). She also says she’ll hire care but who is going to oversee her care if she has no family around?
Honestly it’s like watching a train wreck.
Or maybe I’m catastrophizing?

You chat once a week as neighbors do, you know she has friends BUT you're worried you'll be the person asked to take on her care???? This is almost delusional thinking.

Anonymous wrote:My MIL has been living with Parkinson's for 30 years and still has a lot of mental acuity. She had a good 10 years before she needed any sort of help around the house. She had a pacemaker put in, for heart issues unrelated to the Parkinson's, and now at 90 she regrets it because she's now going to die of Parkinson's, not heart failure.

All this to say... your friend might well die of something else before her Parkinson's gives her real trouble.

This. Yes, OP, you are catastrophizing. Many people live decades after diagnosis. And even if she is not lucky in that way, why in the world would you as the neighbor be called upon to "deal with it" if her condition worsens? That is not how neighborhoods work in the US, for the most part. Crisis babysitting, yes. Long-term elder care, no.

Give her contact information for Parkinson’s support organizations like (not sure where you live) https://www.marylandparkinsonsupport.org/

or https://www.michaeljfox.org/news/support-groups

If she’s interested, she will find informed support and possibly local recommended providers.

I was diagnosed with Parkinsons about 4 years ago. Here are my thoughts:

- you sound like a good person who cares about others. As you read my comments, please keep in mind that I recognize that in you, and I'm sure your friend appreciates you for that.

- Parkinsons varies greatly in course and presentation. Don't make assumptions about her Parkinsons based on what may be seen in the media.

- she may have Parkinsons, but she is not a child. Her decisions are her own, and she almost certainly has a better understanding of the disease and her specific presentation than you do.

- based on the way Parkinsons is presented in the media and perceived in our culture, it is presumed that one is either a Parkinsons Warrior (lobbying and fundraising all the time, posting on social media everyday about all the work done to manage it and how much it sucks) or closeted and in denial. In reality, many of us are just living our best lives. We go to rock concerts and work full time and ride our bikes with friends and travel internationally. And we do that for many years after diagnosis. We just have a lot of extra pills and doctors appointments and PT exercises to balance with everything else. But we don't broadcast that - we have more interesting things to discuss.

- "she is dragging her feet in scheduling the brain scan that’s supposed to confirm the diagnosis" - that brain scan is a DAT scan. It is expensive, takes several hours, and is not needed to confirm the diagnosis except in edge cases. If the pills work well and immediately, that confirms the diagnosis.

- there is currently no medication that slows the progression (exercise and a high general level of activity are the only things that do). All the pills and other options do is mitigate the symptoms, and everything has side effects. Some Parkinsons patients prefer not to medicate at all as their quality of life is better without. Others do take medication, but it's a matter of preference as to how much time you want to spend experimenting with different things and meeting with doctors to to optimize and reoptimize your medications. She has probably chosen the balance that works for her.

- based on both my experience and my observations, those that continue to live their normal lives and don't let Parkinsons and a fear of the future dominate their lives do best and have the slowest progression. Of course, there may be some selection bias there. But shutting one's life down and anticipating disability seems to fast track one to disability. And a societal assumption that one must shut life down and plan for imminent disability as soon as one is diagnosed doesn't help here.

Three older adults in my life have had Parkinson’s. You’re catastrophizing.

The disease takes different courses in different people. One relative of mine gets around fine, albeit slowly on her own two feet many years after diagnosis. Another relied on a walker. Some people will get dementia, others won’t. Some die from another cause before their disease progresses too far. Disabled people also learn to compensate for their disability. While they may feel grief around loss of function, they are still adults with agency.

It sounds like this is a new diagnosis. You have no way to know where your neighbor is on her journey to acceptance. You have no way to know what medical care she can afford, wants to make time for, and is willing to participate in. For example, PT can help, but plenty of Parkinson’s patients have an at-home exercise regimen that you would never witness unless you lived with them.

Learn appropriate boundaries. Let your neighbor process this life-altering news on her own. It’s not your job to solve her problems. And don’t assume you’d have to if you haven’t been asked. Even then, you can say “no,” with compassion. There are social workers, both independent and employed by health systems, who assist in navigating elder care.