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We have seen neurologists, internal medicine and even a psychiatrist.


None of them can tell us why my Mom's Parkinson's is progressing so fast. None of the combinations of medications they give have had any effect slowing down her disease.


None of the scans Xray, US, MRI, CT show anything physically wrong with her brain. All of her blood tests are normal.


Every month it seems she gets more confused, more rigid, more stubborn and generally more difficult to deal with.


My job requires me to be out for extended periods of time, so I really can't come more often, not as long as this pandemic is on.


I keep reading on Parkinsons Dementia and its like....there's nothing you can do....its just a speeding train.


I feel like my degree is useless where it matters the most. I treat patients daily and see them get better, but no matter what I try with my Mom, she just gets worse.


I tried adding extra Vitamin B, it didn't work. I tried making her exercise more to keep her mind and body active. I asked the neurologist to see her, they increased her PD meds, it didn't work. Someone suggested an experimental supplement...it didn't work. I tried increasing "brain foods" in her diet, it didn't work.


I give up....sigh....
End of rant.

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I think one of the important things missing in educating doctors is the simple fact that..
NOT EVERY ONE CAN BE CURED.
The best thing a doctor can do for the patient and family at that point is to stop subjecting them to MORE, more treatment, tests,
At some point telling them that the quality of life is better than the quantity of life.
I wish more time in medical school was devoted to Hospice and the incredible value it can bring.
I am going to get off my soapbox now.
Now the time is to talk to your mom and more importantly listen to her and ask HER what She wants.
You have done all that you can, now be a son, hold her, tell her that you love her and thank her for all she has done.
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CaringRN Mar 2021
Grandma1954-Well said
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Remember that Parkinson's disease is at the cellular level - where we can't "look" and see the problems. The brain refuses to release and re-uptake chemicals for neurological functions to occur. Medications work for a period of time with early Parkinson's disease, until the cellular functions cease - which is the condition your mother is heading to. You can't make faulty cells do their job when they decide to cease.

It might be better to focus on making loving memories with mother while she is alive. Please consider NOT "fixing" her and just enjoy the time together. Play her favorite music when you are together. Watch movies she enjoys together. Bring her flowers and treats. Keep in touch via video and audio phone conversations when you can not visit in person. She will enjoy your visits and you probably will too,
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Not only can I not help my mother with her ever advancing dementia, but I can't even help her get relief from the chronic pain she has in her legs from advanced neuropathy bc she cannot tolerate medication of any kind! Imagine that? Every time she gets a prescription, she winds up in worse shape afterward than beforehand! She's taken 69 falls so far, believe it or not, with no trips to the hospital as a result. She's constantly throwing up, too, but all her tests are normal! 94 and half dead but going strong in Memory Care and losing more of her mind on a daily basis to boot. Every day there's a new problem for me to deal with or to buy her something for, but NOTHING works. Nothing. I could write a book. It's sad and frustrating too, bc I'm a fixer by nature but by God, this I cannot fix. Sometimes I feel like a hamster running on a wheel but never getting anywhere with all my attempts, so I give up too.

We can't fix old age and infirmity especially where dementia and mental issues are concerned. Medical science is still in the middle ages when it comes to the mind, let's face it.

Hang in there and I will too. What else can we do? 🤐
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Exveemon Mar 2021
Oh man. I feel ya. The worst part is treatment to counteract one problem, brings out another problem.

In my Mom's case some medications help with the rigidity, but then she has more "outbursts" ...but then the medication to control her erratic outbursts slows her down and brings back the rigidity (**facepalm**)

Trying to treat a disease where a person has to take two medications with the exact opposite effect is really frustrating...especially when its your own mother.
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Decades of research cannot stop Parkinson's, I can understand you feeling out of control, because you have no control, no one does.

If you have faith, leave it in the hands of your higher authority. If you do not have faith, can you find acceptance that this is out of your hands, even though you are in a healing profession.

Sending you a long distance hug.
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It has to be especially hard since you're a Dr and like you said, Dr's are supposed to be able to help people get better. But as you are learning and will continue to learn, not all people will get better, no matter how hard you try to help them. Has anyone mentioned yet that she might have Lewy Body Dementia, along with the Parkinson's? Those 2 often go hand in hand and is quite progressive and aggressive. Just a thought.
If things are just getting to hard for the family to handle, then it might be time to either hire full time help to assist her, or find the appropriate facility to place her in. I wish you the best.
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Exveemon Mar 2021
Yea. I've read that as well. I've considered it. Still need to do more research on it. So far from what I've read, we will only know, after the fact. It can't be diagnosed when you're alive.

Thanks.
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You decided to become a doctor and are frustrated that your skills can't help your mother. It is a noble profession and the rewards in seeing your patients heal and get better are enormous. But when there is no healing or getting better, there are no rewards. Please don't beat yourself up. While medicine has made great strides over the years, there are some conditions that can't be cured, and sometimes, as in your mother's case, even the medications and/or treatments that usually provide some help don't seem to work. It happens.

I have no experience with Parkinson's, only my mother's dementia, which was likely vascular. The one thing others and I do mention is that each person's journey with dementia, even those who have the same underlying condition, is unique to that person. They may share some symptoms, behaviors, physical manifestations, but not everyone has the same timeline, nor do all experience every symptom. Some progress quickly, others slowly. I would imagine it is the same for someone with Parkinson's.

This web site mentions some of this:
https://www.webmd.com/parkinsons-disease/guide/parkinsons-disease-progression

The second section, "What Makes PD Hard to Predict", more or less says what I wrote in that last paragraph.

There is a possibility that she may have another underlying condition that isn't apparent. Those with dementia may have what is called mixed-type. This makes it very difficult for family and/or care-givers to manage or deal with, as they certainly aren't going to follow any strict path!

You aren't a god, you are only human, with training to help people. You can only do your best to help your mother, the rest is out of your control. If your siblings are blaming you, not just looking up to you for the answers, then point them to the web site above. Even if they aren't blaming you, they might be able to learn or better understand if they read this page as well.

Please don't beat yourself up! You all can only do your best to help her and keep her as comfortable as possible now.
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“I give up” is a legitimate feeling when you are caring for someone with an incurable disease. Being a young doctor (congratulations, by the way) makes it all the more frustrating. I'm sure you were taught to fix problems and to do no harm. Sadly, you mom's PD can't be fixed, and from the sounds of it, can't be managed well. There are still so many diseases that can't be prevented, cured, or even managed well. MS, MD, ALS, all the dementia related neurodegenerative diseases and many more are just some of the unsolved medical challenges we face today.

Parkinson's has no specific single test to diagnose it. It's diagnosed thru the process of elimination. All the scans and bloodwork are meant to eliminate other possible illnesses. Could PD be an incorrect diagnosis?

You treat and maybe even cure people of various disorders. There are some you won't be able to help clinically. Your mom is one of them. You can, however, help her live a life of dignity. “Treatment” doesn't always mean medicine. Compassion, understanding, her knowing you are there for her, can also contribute to her well being. So don't be dismayed. Don't give up. Continue to advocate for her care. Best of luck.
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Exveemon Mar 2021
Well.....yes. as far as we know, its Parkinson's. From what I understand from my textbooks, its Parkinson's by process of elimination, and all of the specialists we took her too have come to the same conclusion.

I am not a specialist, so I have to trust their expert opinion.

Most of our visits end with some form of the phrase: "the patient has Parkinsons, although, it usually doesn't progress this quickly"

Why I guess my Mom was one of the rare lucky few with rapid progressing Parkinson's
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I am so sorry. I feel your pain. My mom is in a hospice house with end stage Parkinson’s disease.
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Perhaps all that you are experiencing with your mom is giving you hands-on training that will be beneficial for your career as you move forward. At the very least, I think you are learning what it is like to be a caregiver and you will have compassion born from experience to offer the families of your future patients. You may very well have to simply give up at this point and let things happen as they will, but all is not lost as you are walking a path that others will also walk after you and from your own experiences you will be able to shine a bit of light for them.
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You need a big hug!! You are in an untenable position; all your hard years of education and no definite answers. And the added burden of siblings asking what else can be done to help your mom. Please realize it's not anything you are or aren't doing that is causing your mom's rapid decline. For your own well being, just stop, breathe, listen to your mom's doctors (who are more than likely as puzzled as you are) and just spend time being with her. It really SUCKS that science hasn't figured out what to do with PD, dementia or Alzheimers; how to stop it or reverse the damage, but it's the hand we've all been dealt, and we have to play. Sending you a GIGANTIC cyber hug, because your mom is a lucky lady to have you as a son.
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Exveemon Mar 2021
Thanks to everybody, for the support. It means a lot.
Sigh... its hard.
I keep blaming myself for not being able to figure out how to make Mom better. I keep thinking...come on ExVee there must be something I haven't tried yet.

And worse again, whenever I get a call from home about Mom's decline...I keep thinking, they must expect me to tell them something that can help....but I got nothing, no fancy experimental treatments, no wonder drug, zip.
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