Nothing works! No matter what we do, my Mom keeps getting worse! Her symptoms never improve. I hate Parkinson's!

Is her Parkinson's actually progressing, and becoming more difficult to control?  It sounds like this is the situation.   Or is she becoming acclimated and/or immune to the dosage levels that previously were effective/

Have you contacted a neurologist, or someone who specializes in PD?   I wonder if this is a rapidly progressing form of  PD?  

I'm sorry to learn of this challenge and unsettling progress in your mother's help.

I have no answer except to say that I understand your hatred of Parkinson’s. It is a HORRIBLE disease with no real answers and you have my prayers and sympathy. It sounds as if you are stressed beyond belief. Can you take some time for yourself for meditation, a massage, deep breathing?

I'm not a doctor, but my first thought after reading your post was that perhaps your mom has Lewy Body Dementia along with the Parkinson's, as those 2 often go hand in hand especially in the elderly.
Have you had her neurologist check her for that? If not, I certainly would.
I've have several friends who's spouses had both LBD and Parkinson's and they also had a lot of the symptoms you're describing, so that might be worth looking into.
I wish you the very best in getting the answers you are looking for.

Are any of the specialists an actual Movement Disorder Specialist? The "episodes " sound like the "off" periods when her meds wear off. That's to be expected. Try a different med like Rytary. There are several techniques to use when someone has a freezing episode....if you and your family don't know about them you should at least research on Google, YouTube, or contact any of the several Parkinson's organizations. How about physical therapy?When you say nothing seems to work it seems you have unrealistic expectations, maybe even a cure. This is a progressive neurological disease and you are ready to give up. Wow. Getting the right diagnosis is important but so is having some idea of how to deal with the symptoms. Maybe the diagnosis is PSP, not PD. Maybe it's just PD, but can you learn to deal with a situation where progressive decline is to be expected in any patient? Doctors, GP or "specialists ", cannot be expected to cure everybody of every problem. You are a new doctor. What are you going to do, just give up on people with incurable diseases? Aren't there ways to be helpful even when you can't cure a disease as if it were a broken arm? How about a support group for you and her caregivers? Maybe you can find out how others deal with this type of situation. It might give you some new ideas or understanding.

I went through this with my mother-in-law (MIL) who was diagnosed with a neurodegenerative disorder called multiple system atrophy. My MIL was very much like your mom.

Yes, the carbidopa/levodopa only works for so long at treating the symptoms. My MIL tried everything but at her age she was not a candidate for deep brain stimulation.

As for Michael J. Fox, he was a lot younger than your mom or my MIL when he was diagnosed. And who knows where he sought treatment or how many $$$millions he has spent.

My MIL chose to live her life on her terms and that's also what she did toward the end of her life. She accepted her illness. She made herself a DNR/DNI and refused a PEG tube and any heroic measures to prolong her life.

My MIL didn't have a lot of medical emergencies and so I'm wondering what you mean by your mom always having some medical emergency.

You don't know that Michael J. Fox's Parkinson's is 'manageable'. Only his close family members and doctors know what condition he's really in, truthfully. He certainly hasn't been in the spotlight much since his diagnosis, that's for sure.

That said, I'm sorry you and your mom are going through such a difficult time with PD, and that she's been hit with a vicious form of it at a young age. And that you, as a doctor, can't really DO anything to help cure her. That must be a very frustrating place for you to be in right now, I would imagine. We all look to doctors to have 'all the answers', yet in many cases, they don't.

Take dementia, for example. As far as we've come in the medical field, the brain still remains a mystery, for the most part. My mother is 94 and I listen to her babbling about all sorts of nonsense, thanks to the advanced dementia that's wreaking havoc on her brain. When I worked in a Memory Care ALF in 2019, I dealt with doctors, lawyers and engineers who were all residents there, afflicted with advanced dementia & Alzheimer's, since disease knows no intellectual levels/educational levels, social standings, or income levels. It's an equal opportunity destroyer of everything that's good in a person's life, and in the family's life too. In my mother's case, she always ate healthy foods, exercised, never smoked/drank booze to excess, and led a healthy lifestyle in general, which didn't help her one bit in avoiding dementia!

We all love our family members who are afflicted with disease, and we all feel helpless to 'fix' things for them too, for the most part, b/c we're all bit players in the game of life. That includes you, even as a doctor, b/c there's no cure for PD, unfortunately. To sit back and watch your mother deteriorate before your eyes, and to be helpless to fix it, is a horrible thing. Just as it is for me. My mother also has pretty bad non-diabetic neuropathy in her legs/feet which has been a huge issue for the past 20+ years and is another thing the doctor's can't cure or even help her with very much, for the most part. Nerve damage is something that even pain meds don't help with, so there hasn't been a day gone by I haven't listened to her complaints of her legs 'killing her'. Hard to listen to, hard to go through, hard for everyone involved, even for her doctor who feels helpless to find her relief for. I hear it in her voice when she calls me to talk over my mother's care plan. TWO things she can't help mom with: dementia AND neuropathy, a double whammy. And she's taken 78 falls over the past few years, too, as a result of the neuropathy & resulting balance issues. Even now, in a wheelchair, she's still falling on a continual basis. Something else nobody can prevent.

Sometimes we 'children' just have to sit back & do nothing, realizing there is nothing we CAN do. If we've gone to the specialists and done all the tests, and they don't have 'the answer' for our mothers, then we have to leave the matter in God's hands & hope for the best. When it's time to involve hospice for pain management and comfort care, then that's the route to take, I guess. It's good to have a place like AgingCare to come to and vent; I know it's helped me over the years to know I'm not alone with my struggles. It helped me to read your post because I can relate to how you feel, exactly, and I can empathize with you 100% too.

Wishing you the best of luck with a difficult situation.

I am sorry to hear that your mom's diagnosis has progressed rapidly. Yes, Levodopa works for awhile until that neuron to neuron neurotransmitter response totally breaks down. Then, you only have symptoms to deal with. Try to get a good neurologist to work with you on symptom management. Try to get enough extra help so that you and dad both can meet your essential needs.

As an ICU RN, I usually work through nursing diagnoses that align with medical diagnoses. Seems your mom needs nutritional support, mobility help, pain management with muscle relaxers, and maybe some support for you and your dad as you journey through this tough disease.

If you are a doctor you should know that there are resources online that you can consult to learn about the disease process. That alone will answer some of the questions you pose here. Are you working in a medical institution? Why are you not searching through internal sources for assistance? Anyway, from what you described it seemd as if your mom's disease is progressing. Have you considered brain stimulation surgery? Other than trying new meds or doseages your mom is exhibiting Parkinson's symptoms.

I speak from my personal experience. I am not a medical professional.

I took care of my parents for many years. I also spent numerous hours in nursing homes, skilled nursing and met many caregivers along the way.

I see many levels of denial in family members (me too). We have a difficult time watching our parents age and diseases progress. As time moves on and reality begins to slap us in the face, we chip away at the walls of denial.

So, start with yourself. The problem is not your mom. She’s spiraling into disease progression. She won’t be better. The best you can do is hope for spurts of stability.

Allow yourself to accept her present status.

I’m so sorry for your pain. But remember that no matter what, doctors, medication, and even you, can do only as much as God allows. Stop beating yourself up for your mom’s illness. Accept it and take one day at a time. Stop. Breathe. Enjoy her good moments, even if they are brief ones. Yes, it’s frustrating to not be able to make things better for her, but comfort her while you can. This is when she really needs you.

I am 65 and have been diagnosed with Parkinson’s Disease in May. My neurologist prescribed cardopa levadopa every 4 hours. If I don't take it on time my symptoms come back. Best of all she prescribed the LSVT-BIG therapy. It is specifically designed for PD. It changed my life. Be sure to get a therapist that is certified in this specific training. I do these exercises faithfully every day.

I know it's a long journey, but there are many medications that can be used to help control symptoms. The two sources of information I trust is the Parkinson’s foundation and michael j fox foundation. There are alot of resources and info, as well as webinars, that will help and guide you along the way.

Take care of yourself first and then you will find the strength to help her. God bless you!

My Mom had parkinsons (LBD) I watched as she faded, it was hard but I knew I had to take care of her so I drew the strength from somewhere and carried on. I'm sorry you have to watch your Mom go through this. I hope you find peace.

There is not a thing on this earth you can do any more than you can keep the sun hiding 24 hours and the moon never appearing. It is a fact of life - accept we don't have cures for all problems and may never have. I feel that this is impacting you very negatively and this is not fair to you - you deserve to live your life - she lived hers. It is time to place her where she will be cared for and safe. Don't wait.

Exveemon: Imho, perhaps no one really knows what Michael J. Fox has done or has not done regarding his Parkinson's. I am so sorry that your mother is regressing.