The disease is winning, I give up ...

My only experience with Parkinson's is being a newly diagnosed patient. Right now there are no medications to slow or stop the progression. The meds now are to deal with symptoms. There are drug trials now trying to slow or stop progression and I am a participant in one. It may never be available as an approved FDA med in time for many of us, but we're trying. April is Parkinson's Awareness Month and it is the fastest growing neurological disease. In the US someone is diagnosed every 9 minutes. Most of the cases appear to be caused by exposure to chemicals. This is a good time to learn more and advocate for more controls or banning certain pesticides and other chemicals that are contributing to the Parkinson's pandemic.

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.

Perhaps she's tired of going to doctors for more tests and trying "brain foods", vitamins, supplements, etc. Has your mother had a palliative care consult? Has your mother let you know her end-of-life wishes i.e. "do everything" versus DNR/DNI to not prolong her life?

If you focus on her quality of life rather than its quantity you are not giving up. Acceptance is hard. But it is in acceptance that nothing is working and doing more is only prolonging her life that, perhaps, you will find peace for both you and your mom.

Mothers can be the greatest of teachers. She may not have taught you in medical school but she is teaching you now while she is on this difficult journey.

You also wrote on your profile that you have brothers. What do they have to say?

Acceptance is the hardest lesson and I'm still trying to learn that one too - can't give up hope but so many things keep beating me down as capacity dwindles.
The hardest part for me is the loss of connection. I sometimes ask myself "Am I doing all this for them or for me?" but I guess the answer is "you just do".
Best medicine might be your company (if covid permits) as in my case it brought my dad around enough to feel reassured amidst his confusion, frustration, and inner turmoil - not all the time (and not often enough, sadly), but it was valued from both sides whenever that window was open ever so slightly.

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? 🤐

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.

I think that acclimating oneself to the loss of life as well as the trauma, challenges, emotional and physical pain prior to death must be one of the most difficult challenges of being a doctor.

I wish I could offer some consolation, but know that you are not alone, either as a son or a doctor.   In some ways, it's a humbling experience...we can put people in space, but we can't conquer some diseases.

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.

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.

I am so sorry. I feel your pain. My mom is in a hospice house with end stage Parkinson’s disease.

“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.

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,

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.

I am so sorry. I am certain that your Mom's doctor has explained that each case of Parkinson's is as unique as our own fingerprints, and not predictable. Brain foods and diets and supplements I don't much believe in at all, and you do say that many medications have been tried. I just am so sorry;there is little to say in this instance; it is just so sad.

What do you need or want from us, the community / readers here?
I am presuming you are an MD.
Do you get diagnoses and treatment right 100% of the time for 100% of your patients? Likely no. I believe that medicine is a combination of education, experience, and knowing you are on a journey of discovery not knowing the outcome 'all the time.'

Sometimes, it is not giving up; it is giving into a serenity within. Shifting to a universal trust of 'what is,' may give you a new 'presence,' 'present time,' and openness to letting go of a control which is no longer serving you or your mother. Perhaps meditate, give yourself some psyche, mental, psychological space. It sounds like you are so ingrained - so close to all of this that you need to shift - perhaps to your heart and out of your intellect/mind, even for a few minutes ... at a time. Turn on some disc music and let yourself go.

dear exv,

hugs!
sorry to hear you/your mother are going through this.

parkinson’s...

i think like everyone on this planet, our health is also related to how much stress we have.

parkinson’s unfortunately gets worse with time, that’s clear. but also stress, can make symptoms worse.

does your mother have things to look forward to?

we all need magic in our lives/some hope/something that drives us forward!!

big, big hugs from me,

bundle of joy

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.

So sorry you are dealing with this. I have a classmate who has suffered wit Parkinson's for at least 25yrs. Now he is 71, seems he is in the Dementia stage and becoming hard to care for. And he was a sweet guy. There just isn't any rhyme or reason the neurological diseases. They hit each person differently. All I can say, if Moms care is getting too much and she is still living home, she may need to be placed where she can be cared for 24/7.