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.
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.
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,
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? 🤐
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.
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.
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.
Thanks.
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.
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.
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
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.