Off topic, but hoping someone out there has answers. Parkinsons

[LUVMyBirman]

Can't find forums like our great VR.com for Parkinsons. There are a few small ones. But not extensive. If anyone has experience managing someone with the disease. Would love to chat.

I am writing on the behalf of a family member with PD. He has had it for approx 10 years that we are aware of. Medication has been controlling for the past years up until recently. He was switched over time to Stalevo 150 x3 daily. Which seems to be the highest dose. He is a small man. Azelict 1mg once daily.

He was recently hospitilized. 4 days and his Neuroligist did not address his PD meds. He has almost EVERY listed side effect of both medications. They both sound very very toxic. Sedation/sleeps 18 hours a day....if not more. Hallucinations, nausea, stomach pain, rash, blisters confusion. Suddenly can't walk, bathe, swallowing is difficult. All suffen onset.

What would happen if informs the DR. he wants to slowly taper off? What is the benefit of taking both of the meds together? They put him a Lexapro for depression around the time this all started. Which can interact with the Azelict. So we demanded he stop the Lexapro. I am concered his doctors are not getting together and lethal combinations are being ingested. They could not come to resolution during a recent hospitalzation. Mainly because the neuro was not consulted! Hello

Suggested it's time for a new group of Dr. The patients wife says she sick of changing doctors. Which is not the answer I wanted to hear. What...is he to do? Sit and suffer with fear, pain and halluciatoins?

 

[ALCapshaw2]

GOOD GRIEF what a nightmare!

YES, his Doctors need to all 'get on the same page'. Usually the Primary Care Physician coordinates the other specialists and watches for interactions etc.

As Nancy and Joe discovered, you CAN outlive the knowledge and skill of your (beloved) Doctors and there comes a time when it is necessary to move on to find someone with the knowledge and skill to manage complicated patients. A thorough workup at a major Teaching Hospital may be in order.

FWIW, I remember seeing a piece on one of the TV Newsmagazine programs about a SURGICAL technique that can help control Parkinson's symptoms. I think it is still in the 'early stages' but the patient in that program showed impressive improvement (i.e. way less uncontrolled motion and better motor control).

He / his family may also want to contact Michael J. Fox (the actor who has Parkinson's Disease and has become a national spokesman for patients) for information and /or referals to better treatment centers.

I hope he is able to find some relief and better management of his condition.

'AL Capshaw'

 

[PJmomrunner]

Gina:

Oh man, this brings back memories! My MIL was (mis)diagnosed with PD about three years ago. What a nightmare! At the time she was living in Chicago in the Austin neighborhood and being treated by doctors at Rush in that area.

It all started with the Atkins diet and a long-previous misdiagnosis of bipolar disorder which lead to symptoms that her doctor thought appeared to be orthopedic. When treated for the ortho problems she developed stomach problems that were treated as "geriatric anorexia". After four months eating nothing but mashed potatoes, a vital, independent, active professional woman of 64 withered and shriveled into a feeble elderly woman. Her primary doctor sent her to a neurologist who diagnosed her with PD and put her on drugs to treat her that only made her develop more PD-like symptoms. It became necessary to move her out of her second story apartment and into a retirement community highrise (wonderful facility, BTW), where she met (and eventually fell in love with!) a man who truly had PD.

I became convinced that her problems stemmed from losing 90 pounds and never having had her meds adjusted. After much research, I believed the drugs she had been on for bipolar disorder and high cholesterol, which she was taking in doses too high for her now-small body, had caused her to manifest symptoms of PD. We eventually got her in to see a Parkinson's specialist who confirmed our beliefs.

To make a long story short: Every specialist we took her to diagnosed her with something he or she could treat. They sought answers only within their specialty and no one would take responsibility for coordinating her medications.

If your friend truly has PD he should be treated by a neurologist who specializes in PD. It is frequently misdiagnosed and/or mismanaged. The Michael J. Fox Foundation website is a great resource. Your note about your friend's small stature could also be key. The elderly are often more sensitive to drugs and small stature can definitely compound that. In my MIL's case, she is also a very fair-skinned, light-eyed person who has always been sensitive to drugs--what a recipe for disaster. Anything they put this poor man on for depression will change his brain chemistry (duh!) and consequently is likely to alter his PD symptoms.

It sounds like the wife is overwhelmed and over her head. He needs someone to pay attention to his overall treatment. If his primary is also overwhelmed, it is definitely time to bring someone else onboard. If this couple is living independently and she is still running the household, she should consider eliminating some of life's daily responsibilities so that she has more energy to devote to his care (e. g. move to a condo if she is still mowing the lawn and shoveling snow, or the like). Do they have adult children who can pitch in? You are a sweetie to be looking out for him, Gina.

 

[LUVMyBirman]

Thank you both for your very kind responses.

Truly believe he needs to get with a University hospital. Noted that UIC (Chicago) appears to have a good program. P.J., now that I think about it. Rush is #1 for neuro/brain disorders in Chicago? Problem is. My parents like the suburban community hospital setting. You know....the five mile radius syndrome I think my mother is starting to realize it's not working! Where they go is actually a highly rated facility. BUT, the inpatient care on the cardiac floor was pitiful. He went in complaining of chest pain. Which turned out to most likely be a side effect of the medication. As far as I can tell, laymen DX. Obviously, I will make myself available for transporting to appointments downtown. Just have to convince my parents and get them moving. Also, have another sibling that could help as well.
Don't see why he could not have a specialist in the city for the PD and an internal med guy close to home that could work together? It's so heart breaking to see him in this state. When he is lucid.....(few hours out of the day). He's so stressed and anxious. Tears of fear.

Thank you again for your support. I can't imagine not having my friends at VR.com to chat with.

 

[Nancy]

I don't know anything about Parkinson's. But I surely DO KNOW about how complicated things can get when there are too many meds involved.

Joe came to the point that every time he was hospitalized, there was a Pharmacy Specialist consulted. Sometimes they came right into the room with the cardiologist, not only in the hospital, but for office visits too. That was when Joe was going to a cardiology practice connected with a hospital.

I can remember times also when there was great controversy amongst the various specialists as to which one of them had the right to trump the other when it came to interacting meds. It got quite heated at one point, and was spilling over when they examined Joe in the hospital.

It is so tricky that generic versions of some meds do not work the same way.

They have to get a Pharmacy Specialist involved to sort this all out. It is a balancing act, and it cannot ever work out if one hand doesn't know what the other is doing, or worse yet, doesn't care because they think their specialty has the right of way.

It is exasperating when no one will take over the helm, and the patient's family is left trying to figure everything out. Some doctors will run 90 miles an hour in the opposite direction in order to get away from such a situation.

So, my guess is the hospital Pharmacist would be the neutral one who could shed more light on what is going on.

This kind of thing drove me insane (or almost). I could see what was happening, but no one would take responsibility, and if I complained, I was the big B----.

But that shouldn't stop anyone. The family has to be strong and get it straightened out. I am sorry it is your dad.

 

[LUVMyBirman]

Thanks for your input Nancy. Really appreciate your expertise.

It does not take long to figure out the poor man is ODing, and you are correct. NOBODY is taking responsibility! I forwarded all of the interactions to my mother. Have located (2). Aspirin was one of them. He was complaining of severe GI pain. So, I can only hope there was not a bleed going on. They tested his stool. Negative. From exp...you don't always show blood when you are bleeding.

It's a mess. He has home health with him today. Appointment with his Neuro tomorrow. The doc that should have seen him during his 5 day hospital visit.
I have plans to switch him to a top university hospital in the city for evaluation. Mom is still concerned that the doctor would not be right around the corner. She has not moved past the fact that the locals are doing more harm than good! I hope she can get over it before it's too late!

TY again

 

[Nancy]

BTW--Joe got more hallucinations from Ativan and related drugs than from any other med he was EVER on. It was horrible!!! He was seeing things that weren't there, couldn't talk, absolutely couldn't walk, and was slipping out of his chair every five seconds. I've never seen anything like it.

 

[LUVMyBirman]

I can relate Nancy. Both of his PD meds cause hallucinations. Then they prescribed LEXAPRO for depression. Which has a clear interaction to PD med #1. With aspirin (which he takes) having a clear interaction with PD med #2. I don't understand how on earth these Drs. prescribe, without checking interactions.

For someone like you and I (check everything) that may work. For a poor unsuspecting 70+ year old man with a neuro disorder, ugh I just wish my parents let us know what was happening sooner. Mom is from the "old school". Actually they both are. If the Dr. says it's so....they will take it. Trying to change that and it's frustrating!

 

[Nancy]

It must be very hard for you to stand by and not be able to do anything about it. At least I could voice my opinions, some think WAY TOO much .

Just didn't know my place!! Never did anyway.

I hope you get to a point where you can at least convince your mom to take a tough stance for your dad's good. He needs someone to advocate for him.

We are all human, doctor's included.

 

[PJmomrunner]

It can be so overwhelming to sort out dosing and drug interactions--especially when medication is interrupted and you have to restore levels of a bunch of meds to a therapeutic dose. I'll bet your parents were asked--and answered--umpteen times by every orderly who walked past them what meds he was on too!

I am attempting to find out who the PD specialist was that finally straightened my MIL out--I'll get back to you on that. If I recall correctly it was someone at Northwestern.

More about the bonafide PD patient my MIL fell in love with (and nearly married--whole other saga! ): She moved with him to Philadelphia where she (now lucid and back to 92% normal) studied up on PD and located a hot-shot surgeon who evaluated him and deemed him a candidate then operated on him to implant a deep brain stimulation device. It has helped him a great deal although his PD was pretty advanced and it wasn't the miraculous result they had hoped for. They have since parted company, so I no longer get his progress reports.