Venting About my Stupid Sister

[TromboneAl]

My sister, 76, was recently diagnosed with Parkinson's. The docs put her on L-DOPA treatment, and it's been remarkably successful.

Today, she calls and tells me she heard of a natural treatment, and she's gone off the L-DOPA and on to this treatment. My research shows that the guy promoting it is probably a quack.

She told her neurologist, and he's okay with it. It sounds like the worst that will happen is that she'll go downhill, and, if she acknowledges the decline, will go back on L-DOPA.

This is typical of her (and the rest of my sisters). They are always following the silliest treatments.

Aargh!

 

[joeea]

Lots of people like the word "natural".

Kinda sad that it gets in the way of reality sometimes.

 

[TromboneAl]

More examples: I go to her house, and the microwave is out on the porch. She thinks the waves cause cancer or something. I think she puts something in, then runs in the house.

She can't be near power lines, she says. She doesn't keep the Wifi router on. She has a flipphone—she thinks the smartphones are dangerous—but usually keeps it off, she thinks that some yogis can fly.

I've told her that I don't want to hear her kooky ideas.

 

[Aerides]

Have you watched Better Call Saul? Sadly, your sister would have a kinship with one of the characters...

 

[Chuckanut]

Some rather smart people had some weird ideas about health and medicine. IIRC, Steve Jobs tried to cure his cancer by using alternative medicines like acupuncture, drinking fruit juices and some other things.

 

[Moemg]

Your sister is really strange . When you mentioned a natural cure I thought vitamins and meditation.Now I really wonder what the natural cure is ?

 

[ERD50]

Read up on Parkinsons. I think it can affect the mind as well. Or has she always been like this (but maybe worse now with the disease)?

-ERD50

 

[Amethyst]

The lady has a dreadful, incurable disease. In her place, I don't know for sure what I might be tempted to try.

 

[Maenad]

Sometimes Lewy Body Dementia occurs along with Parkinsons, so she may be suffering from that.

One of my cousins died in her 50s from an easily treatable cancer because she wanted to cure it with fruit juice, crystals, baking soda, etc. Of the family members that agreed with her about the Evils of Doctors and Big Medicine, about half have recanted, the other half doubled down. My branch just resigned ourselves to the fact that she was an adult who could make her own decisions, and grieved because we knew what was coming.

I don't know what to tell you, it's very tempting to believe that there are "natural" remedies for things, that we could just grow cures in our gardens instead of relying on pharmaceuticals. If it was true, though, the evidence would be there.

 

[joeea]

More examples: I go to her house, and the microwave is out on the porch. She thinks the waves cause cancer or something. I think she puts something in, then runs in the house.

She can't be near power lines, she says. She doesn't keep the Wifi router on. She has a flipphone—she thinks the smartphones are dangerous—but usually keeps it off, she thinks that some yogis can fly.

I've told her that I don't want to hear her kooky ideas.

I assume that these aren't recent personality changes?

You won't be able to talk her out of irrational beliefs. Vent here (or anywhere else it is safe to do so) when necessary.

The best you can do is love your sister as she is. She may not be rational, but she is still family.

 

[latexman]

I think Parkinson's and Lewy Body Dementia are on opposite ends of a continuous spectrum. If the Lewy Bodies first appear in the area of the brain that controls motor skills, it is diagnosed as Parkinson's. If the Lewy Bodies first appear in the area of the brain that controls cognotive skills, it is diagnosed as LBD. As the LB's spread in the brain, you have both, but the first diagnosis is what sticks in your medical file.

 

[bingybear]

DMIL was diagnosed in her early 50's with parkenson's and we have been directly involved with her care after my father in law passed a decade ago. Her doctors were on the other side of the state.

From what I saw the meds really don't cure the disease, just help with the tremors and mental effects. She had deep brain stimulation to help with the tremors.

There are many things that can help if your loved one will do it. Look at delay the disease. DMIL would not do the exercises to the level to be helpful. Unfortunately she was diagnosed with Alzheimer's at the end of the last year and is now in the lead on this race.

We've been there since DFIL passed to help her with care.

Who is helping your sister?

There are those who don't believe in mainstream medical care and sometimes there are just alternatives. Look at Michael J Fox who does not use much of the drugs for tremors because it affects his creativity.

I don't think this is what you seeing from all your other comments... microwaves, etc. How do you help her in a supportive loving manner?

I don't think the dementia aspects are the early symptoms, but tremors are from what I've seen.

So how do you best help when you don't see eye to eye? Be supportive

 

[donheff]

I think there is a book in this Al.

 

[Rianne]

More examples: I go to her house, and the microwave is out on the porch. She thinks the waves cause cancer or something. I think she puts something in, then runs in the house.

She can't be near power lines, she says. She doesn't keep the Wifi router on. She has a flipphone—she thinks the smartphones are dangerous—but usually keeps it off, she thinks that some yogis can fly.

I've told her that I don't want to hear her kooky ideas.

Sounds like Chuck McGill in Better Call Saul. His condition was more serious, sorry to say, it was very funny as he was a successful attorney.
My DC with Parkinson's finally went to Mayo Clinic after quack Drs. at Barnes in St. Louis gave her wrong doses of meds. What a tragedy. Mayo figured it out and helped her immensely.

 

[Masquernom]

I have a similar sister. She was afraid to fly in airplanes, so she and my BIL drove everywhere for their vacations. She admitted to me one day that she never used the cruise control in their vehicle. She was afraid it might stick and not disengage.

 

[Spock]

Finally convinced my Dads PCP to refer Dad to a neurologist for dementia testing (PCP wouldn't test). Neuro's office is one big advertisement poster for some intestine/liver cleanse used by Gwyneth Paltrow and he sells CBD oil over the counter in his waiting room lobby...


It doesn't help that you can "scientific research says" to say whatever you want it to say by funding the research. Is coffee good or bad for us this week?
The "wackos" using crystals think you're just as wacko for using modern medicine. Adults can make their own decisions. If their decisions remove them from the gene pool "early", so be it... an 80year life span is a blink of the eye on infinite timescales.

 

[Silver]

We all die of something.

Sometimes feeling as if we have some "control" makes us feel better until we die.

Traditional medical care takes a lot of that control away. I'm impressed that her neurologist supported her desire to explore something else. Sounds like she/he understands your sisters need for some control.

 

[pacergal]

I assume that these aren't recent personality changes?

You won't be able to talk her out of irrational beliefs. Vent here (or anywhere else it is safe to do so) when necessary.

The best you can do is love your sister as she is. She may not be rational, but she is still family.

+1

 

[TromboneAl]

Read up on Parkinsons. I think it can affect the mind as well. Or has she always been like this (but maybe worse now with the disease)?

-ERD50

She's always been like this.

I actually have a PhD in neuroscience, which included neurology rounds. In Feb of 2018, before diagnosis, when her SO noticed some changes (and some resting tremor), I visited and did a few tests.

She passed all except one. I had her make fast movements with each hand, like a bird's beak opening and closing (like yak, yak, yak). Her left hand was fine, but the right hand was slow. I also saw micrographia in some notes she'd made. I told her, "I'm not a doctor, but I think you will develop PD."

When I saw her at DD's wedding in August, 2018, she seemed significantly worse. I suggested her SO get her to a doctor, but that took a while.

People say that when you're diagnosed, you've probably had the disease for five years.

 

[walkinwood]

More examples: I go to her house, and the microwave is out on the porch. She thinks the waves cause cancer or something. I think she puts something in, then runs in the house.

She can't be near power lines, she says. She doesn't keep the Wifi router on. She has a flipphone—she thinks the smartphones are dangerous—but usually keeps it off, she thinks that some yogis can fly.

I've told her that I don't want to hear her kooky ideas.

Now, there's an idea for a book.
(I know, its no joking matter)

 

[TromboneAl]

Now, there's an idea for a book.
(I know, its no joking matter)

Yes, that's as good as venting here, and I do that a lot. In Sanity's Thief, the main character needs to get himself committed to a mental institution. He acts nuts at an intersection, hoping someone will call the police. Here's something inspired by my sister:

 

[WestUniversity]

Have you seen this video? Simply amazing how cycling can have such a positive effect on Parkinson’s patients...

https://youtu.be/LRGCWIOeTC0

 

[njhowie]

Well, you already know the worst that happens is she goes back to L-DOPA.

She's already done this, so instead of coming down on her and telling her it's foolish, just go with it. She believes it will work - there is always the placebo effect - so who knows? Just support her decision, and should things deteriorate, then when it's time, step in and suggest going back to L-DOPA.

 

[TromboneAl]

Well, you already know the worst that happens is she goes back to L-DOPA.

She's already done this, so instead of coming down on her and telling her it's foolish, just go with it. She believes it will work - there is always the placebo effect - so who knows? Just support her decision, and should things deteriorate, then when it's time, step in and suggest going back to L-DOPA.

I'll go with it, but not to the point of telling her I support her decision.

I suspect she'll ride the placebo effect for six months or a year, then return to an effective treatment.

DOPA doesn't lose its effectiveness, but the disease progresses, so after a while, DOPA isn't enough to counteract the symptoms.

I can imagine the following disadvantage of her experimentation:

Let's say that the natural treatment is not effective. In that case, she'll have a bad year while she's 76 and otherwise healthy. When she goes back to the DOPA, her symptoms will be worse and she'll be older and perhaps less healthy.

However, if she stays with the DOPA, it will keep almost all her symptoms away now, and while still only 76, she'll have a good year or two.

A lotta ifs there.

I haven't told her, but some of her symptoms, such as weight loss from 130 to 111 pounds, suggest that she's got a rapidly progressing form of the disease.

 

[Sunset]

Sad, but sometimes people you care for make really stupid decisions, and there is not much a person can do to change their minds.

As a minor example:
Friend of mine took expensive courses from a meditation yogi and was bragging to me about it. I told him I'd take the courses as soon as he could show me he was able to levitate or turn invisible....