June 22, 2010

Maybe This Was Needed

I'm probably not going to post much on this anymore. The last two days have been huge learning experiences and I feel the need to share... in the event someone can learn from what we've seen.

First off, he is going to be fine. They nearly OD'd him in the rehab center. I'll get to that later.

Pop has been taking Parkinson's meds now for... probably five years. He wanted to stave it off as long as possible because he said when you start taking it, they only work so long. True or not, that's what he did.

He is of the % of patients that tremor. So when the tremor became bad enough that he couldn't eat or function well, he started taking a single drug. It worked.

And true to what he said, over the years, they've had to change his meds, add meds, increase dosages, to keep a quality of life.

As the years have progressed and his meds have changed, we've seen changes in him, not positive. He'll spontaneously fall asleep, for one. He says he's drowsy.

Pop may live in assisted living, but there is nothing wrong with his mind. He goes to the doctor by himself, he knows what is going on, he knows his meds. So none of us go with him. We just see the end result. We rarely speak to the doctors.

This is what we've seen over the last 18 months: drowsiness, sleeping sitting in a chair as if a narcoleptic, food doesn't make it easily to his mouth (we no longer serve spaghetti), he drools out the left side of his mouth, his tongue seems thick, he has difficulty with speech, walking has become exceedingly difficult and he's moved to part time wheel chair usage.

This has left us all looking at each other saying, "Wait. Why is he taking all this crap that puts him to sleep if he has all these other issues? Is it working? Is he taking sugar pills?"

Seriously, that's been our thinking.

Until this event.

The rehab center he was at screwed up BIG. BIG. And they gave him too much of a drug he was already having issues with... Amantadine. They were giving him anywhere from 33% to 50% more than he should have taken, hence the whackiness. So when he got to the ER, and the neurologist got hold of him in all his catatonic glory, the doc put him in ICU and they took him off everything, not knowing fully what they were dealing with. Stroke? Just an old guy with Stage 5 Parkinson's? Biological issues?

And what we found was... when the drugs were out of his body, when he was fully off his Parkinson's cocktail (he was now on three drugs), he was laying in bed, twitchy, stiff, unable to speak at all, thick tongue in tremor, inability to eat, arm tremors, inability to swallow.

THAT is Pop off his meds.

And suddenly lights came on and we realized, the drugs ARE doing their job. They are giving him a quality of life that may seem sucky to you and me, sitting here doing our thing without issue, but to someone in Stage 5 Parkinson's, its dang close to glorious.

As another neurologist said to my husband on the phone on Sunday, "Listen, it's a balancing act. We have side effects, but they give a good quality of life. When the side effects are worse than what they give, then we move to something else. There is no cure... just balancing."

That's where we are. The doc is trying to find an equilibrium Pop can live with. He's trying to find drugs where the side effects aren't miserable, but the quality of life is good too.

And it's tough. The brain is tough. And God Bless these two neurologists... this one guy in particular who is constantly in Pop's room, trying to get it all right. A guy who is stunned by what he's seen... babbling, to catatonic, to some lucidity but still stiff, to... last night when Pop sat up and said clear as day, "The problem is, they over medicated me. I kept telling them, but they wouldn't listen." And evidently so stunned was the neurologist by the huge and sudden change in Pop (which by the way, came after his favorite Italian priest came in and gave him the annointing of the sick), that the doc sat down, grabbed paper and pen and said "Ok, let's talk" to which Pop laid it all out very clearly and logically.

But as the other doc said to us on Sunday, sometimes when you get to the point that you are using multiple drugs, hallucinations are inevitable. It's just flat out a side effect that you have a choice of either crap quality of life or hallucinations... and at that point they add another drug to his regime, one that prevents him from hallucinating, but will make him really really sleepy.

As it is, he's on a drug to keep him awake. Early on in all this, when he was admitted for peripheral edema, one doctor asked, "Are you a narcoleptic?" Pop's reply was, 'I'm on three Parkinson's medications and they make me sleep all the time. That drug you're talking about keeps me awake..."

Balance. It's a tight rope.

So... where are we?

He is in ICU, but will probably get out in a couple days. He'll go back to a normal room where the staff will get him back to where he was last Wednesday. Then they'll discharge him to rehab and I already gave my husband a name of a place he needs to look at in town. It's a Jewish rehab center that has a damn good reputation.

My oldest sister in law is coming in town on Saturday to help find a new place for Pop to live. We found a Catholic assisted living facility that Pop thinks he will love. Its further away, but if the care is good and Pop is happy... then life will be easier.

Meanwhile, I'm out of here on Friday with the kids and I can't wait. I'm so sick of this place I could scream.

I'm counting down.

Posted by Boudicca at June 22, 2010 10:22 PM

God bless all of you...

Posted by: Mrs. Who at June 22, 2010 11:26 PM

I think you need a nice quiet night out with your husband. :)

Posted by: PeggyU at June 23, 2010 12:34 AM


Posted by: vwbug at June 23, 2010 05:54 AM

Thanks for sharing this; it can't have been easy.

Hope you have a great vacation...!

Hugs to all...

Posted by: Pam at June 23, 2010 08:02 AM

Encouraging. Hang in there - here's hoping you and yours get a little down time this weekend. And hoping there is space for him in the Catholic assisted care center and two thumbs up for the Jewish rehab center. And thank God your boys get a little more time with him.

Posted by: patti at June 23, 2010 08:56 AM

Sending good thoughts to all of you. We've been dealing with a similar situation with my Dad, and I know exactly how difficult it is.

Hang in there. I envy you for your support system.

Posted by: Ted at June 23, 2010 10:16 AM

A lesson anyone with a chronic condition must deal with and be vigilant about.

Meds will work for only so long, then it's on to the another med. Once you start on multiple meds to control your problem you have to vigilant about interactions, when specifically to take them, etc etc etc

It really is a balancing act. You need to find out which meds he is on, study up on them and interactions and what will be the next step. Sometimes taking that next step early is more beneficial then taking the next step when the drugs you are on don't work anymore. Or maybe one drug may work better with the other drugs your on.

Having a great doctor is the key to the whole drug regimine.


Posted by: Quality Weenie at June 23, 2010 10:27 AM

I am so happy you've found a doc who cares! Who really wants to go the extra mile and make things work as well as they can - that is one priceless doctor indeed (sending many blessings his way - these wonderful people are too few and far between).

Also sending good thoughts and prayers that you can him into a much better place.

Posted by: Teresa at June 23, 2010 11:32 AM

Good Juju your way!!! I've been in your shoes before.

Posted by: Yabu at June 23, 2010 01:00 PM

Prayers sent.

Posted by: JIhadGene at June 24, 2010 10:24 AM

QW is right, especially if more than one doctor is ordering prescriptions for a patient. They don't always cross-check each other and the drugs will end up hurting, not helping. Case in point: My Dad was supposedly near death a few months ago, taking more than a dozen drugs. The MDs finally knocked it back to 3 drugs and he's fine now.

Posted by: George P at June 24, 2010 11:38 AM

I came across your blog by way of ParkwayReststop... I've been in similar circumstances as you are and all I can say is... hang in there. Good doctors are hard to find and worth their weight in gold. We are blessed when we find them.

Posted by: mike at June 24, 2010 09:20 PM




"There is no cure... just balancing" is probably one of the most universally applicable sentences I've ever read.

Posted by: Harvey at June 26, 2010 12:44 AM