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To my fans, readers, & friends:
If you emailed me from the last week of September thru October there is a reason you did not receive a reply – I was in one of two different hospitals for seventeen horrible days – for what? Technically, because of low blood sugar (which I have had my entire adult life), but everything that led to me being taken by ambulance at 1 am on Sept 30, our culde-sac awake from three police car lights and a police copter flying overhead goes back about seven months. I suffer lower lumbar problems (not knowing when to quit playing basketball) which pinches my left sciatic nerve – the pain debilitating. But nothing could have prepared me for that first piriformis jolt – the tendon connecting groin to hip having somehow become a taut steel cable that sent me writhing on the floor in agony.
My wife read about a Parkinson’s treatment that used botox injections to ease the tension in certain tendons. My neurologist did not use botox but one of his colleagues did. We met with him in August – and he did not feel comfortable giving me a botox injection in my groin, but he said he could improve the management of my Parkinson’s with new time-release drugs that would allow me to reduce my meds from the 15+ Sinemet 25/100 I was taking each day. He also prescribed a few muscle relaxants for the groin pain – then asked me to let him know if I experienced any hallucinations.
Huh?
I don’t drink and have never been drunk; I don’t take drugs. I put off taking the meds for the first five of my seventeen years battling PD, and for a while was able to supplement them using a natural extract. I’ve been on just carbidopa/levodopa 25/100 for the last three years and I have never had a hallucination.
On Friday September 29, I was watching TV when I turned to find a Mexican girl seated on the sofa. Our three granddaughters live with us and she was about the youngest’s age so I assumed it was a house guest; when she ignored me, I wondered if it was the new meds. This happened several times that weekend – the kid/the meds apparently having invited a few of her male relatives over to watch football. They didn’t speak… it was quite bizarre. What bothered me more was that I was having trouble walking. This made little sense since I was being dosed far more than normal. By Sunday I had to use a walker (which I never use). By Sunday night my balance was gone and I was falling and landing hard - even with the walker which worried the hell out of me.
MONDAY October 2: Kim called the new neurologist and reported what was happening. He eased up on the amount I was taking but shortened the time between doses. He also Silaquille - a powerful drug supposed to stop the hallucinations, with multiple side-effects that included hallucinations. (Question to Big Pharma: If the drug meant to protect you from a harmful side-effect causes the harmful side-effect, then WTF am I taking your drug for? Ah, the downpayment on the new yacht… got it).
We picked up the new RX, I watched my Eagles win on MNF, then I went straight to bed.
12:30am: I’m not sure what happened. Kim later told me I woke up and crawled to the bathroom in pain like she had never heard before. She tried to keep me from waking the house – then grabbed my shirt and held tight as our dogs went crazy. I ran out the front door into the night in horrible pain and confusion. We live on a lake and Kim and our son feared what I might do next. All I remembered is hiding behind shrubs as cops and ambulances raced down our street and a police helicopter circled overhead. A neighbor spotted me and led me to my home where EMTs examined me. By now, I was 100% convinced that the new doctor had overmedicated me. The EMTS said there was nothing they could do and my wife panicked, afraid what I might do next. Then they took my blood sugar…
I am hypoglycemic and have dealt with low blood sugar my entire life. I know the signs and symptoms and I always stock high carb snacks – in 64 years I have never passed out. The problem is that doctors and hospitals won’t let you leave until they raise you to a mid-range level for a normal person, levels I just can’t approach without guzzling sugar – which only sends you peaking and dropping – and that is far worse. Twenty minutes later I was in the ER at Wellington Regional Hospital where Kim and my sister Sue watched as I was given an injection of something and passed out.
WEDNESDAY October 4th LATE AFTERNOON
I woke up in ICU after having slept over 36 hours. I felt clear-headed and steady. I later pieced things together: The new (soon-to-be fired) neurologist had over-medicated me and there was so much in me that nothing worked. The long sleep had been exactly what I needed to reset my brain and I was functioning (at least at the moment) on only one of my old Sinemet pills every six hours (versus 1 to 2 every 2 -2.5 hours).
The doctor in-charge told my wife that “your husband is a very sick man… if his blood sugar drops low enough he could go into a coma that will leave him a vegetable.”
Ugh.
For 2-3 days my low blood sugar drove the staff crazy, forcing me to drink apple juice laced with sugar cubes or IV drips with steroids, or some sugary tooth-paste like crap... and nothing worked. Well, no shit Sherlock. You think you are going to alter 64 years of hypoglycemia by over-dosing me on sugar? My daughter Kelsey and I got into a heated argument when I told them NO MORE STEROIDS (I had to be weaned off them). She offered me a deal: if I could stabilize my blood sugar over five hours then no more meds. But if I couldn’t I would allow the steroids. Back in-charge of my diet, I ordered deli and onion rings and amazing desserts – and my blood sugar never dipped below 58… for three plus days. Now can I please go home?
Kim and I met with the physician in-charge of the ICU, who admitted Wellington was not the place to be for low blood sugar or PD. He suggested the University of Miami where they have an endochronologist on staff. And so fam and friends searched their connections and worked to find me a bed.
Day 5 …and I was losing it. The absolute WORST place for someone like me with Young Onset PD (same as MJF ) is to be kept in bed 24/7. In one week, I had received twenty minutes of physical therapy and I was growing weaker by the day. But now there was another issue. I required more of my regular L-Dopa at the minimal dose I needed to function. The neurologist at the hospital made it 1 pill every 4 hours (not nearly enough). While my family tried everything to change the R/X, ICU needed my bed and I was transferred to a lower floor – the transfer at 9:45pm. (I had begged the night staff for my last med BEFORE the transfer – knowing the paperwork would delay the needed Sinemet (L’ Dopa) causing me to be OFF. The pill was given to me at 10:45pm and I was off.
Five minutes later my daughter Kelsey arrived. She slipped me a pill as the nurse spoke over a radio verbally attacking both me and my daughter. Kim heard everything on Kelsey’s speakerphone and lost it – calling the nurse’s station and giving her an ear-full… me, pushing for a midnight discharge that was never going to happen. Instead, all hell was about to break loose.
After five days and nights of being bedridden I was in bad shape. At home, I normally exercise and spend a good hour or two a day stretching. Now my lower back and hamstrings were tight, and my left sciatic nerve was inflamed and stabbing me unmercifully in my butt. There was only one way to relieve the pain – stretch. Only getting in a hurdler’s stretch in a tiny hospital bed is very difficult---
ATTENTION PATIENT! DO NOT TOUCH THE FLOOR
The auto sensor alarm kept going off… summoning Allen -- a big wiry no-nonsense nurse who basically jammed his upper body on top of me, pinning my sore hip to the mattress – a harsh move that felt like someone had shoved an ice pick into my left glute, sending the pain in my sciatic nerve into a new dimension of agony.
“You are not allowed to touch the floor.”
“I don’t want to touch the floor; I just need to stretch—”
ATTENTION PATIENT! DO NOT TOUCH THE FLOOR.
-and he shoved me backwards, again pinning me to the mattress. “Allen, you’re hurting me.”
And he pushed me backward again!
Is this really happening? Unable to budge him, I was losing it. “Yo, man -- stop pushing me down, you’re hurting my sciatic--”
When he did it again, I punched him in the hand holding me down.
Yes, you read that right – I punched the male nurse! As a basic rule, I don’t punch people, and certainly not hospital personnel. But nurses are not supposed to get physical with patients – especially 64-year-old men who have Parkinsons and have been bedridden all week. In retrospect… f**k retrospect. Some guy was hurting me and since FLIGHT was out I chose the only other option – FIGHT back and stop the pain.
“He just hit me.”
Next thing I know, the nurses are wheeling in a big machine to record all activity and the staff is huddled in the corridor. It’s after 2 am and I haven’t slept and the urine pump contraption on my Johnson is leaking everywhere… great. I rang the nurse’s call bell. “What do you want?!”
“The thing on my penis leaked, I need to be changed.”
Allen entered, and to his credit, did his job quickly and professionally. Enter my babysitter, a young female nursing student who looked at me like I was Hannibal Lecktor. After an hour of watching Modern Family together we were friends and she later told the staff, “He wasn’t trying to leave the bed, he just needed to stretch.”
Allen and I made up the next night.
But the worst was still to come:
After eight long days and nights at the Wellington hospital, I was transferred by ambulance to the University of Miami Medical Center. In-charge of my “team”: was Dr. (female) XXX). Kim spoke with the endocrinologist. He ran the same test Wellington had run, had a CT- scan done, and suggested a blood sugar test requiring a 72 hour fast which could be done after I returned home.
Home? When?
We met a neurologist – an older woman who I saw once. First order of business was to fix my sinamet dosage to what
I needed – one pill every two hours. Dr. XXX said she put in the order. That night, I asked the nurse for my 11pm pill.
“My orders say you receive one pill every two hours WHILE AWAKE.
“Well, I’m awake.”
“No, Mr. Alten. Awake means “days only.” Your next pill is at 7am.”
I was livid! Here I was wasting away with no physical activity, and now the night nurse-in-charge was defining “while awake” to mean no dopamine for ten straight hours – guaranteeing I’d awaken basically paralyzed until the next pill was taken and kicked in. That first next morning I awoke rigid, unable to move... even to reach the nurse’s call button… and I had to piss like a racehorse… don’t ask.
THIS SCENE & SCENARIO REPEATED ITSELF EVERY DAY… my first hour or more of paralysis lasting an hour or two, depending how quickly the day shift took over. Clean-up the old fart, change him and feed him… at some point I could move around only I WAS CONFINED IN BED. There was a reclining chair and I tried that just to increase my circulation, only I’d begin to tilt to one side (called being more OFF than ON). That would change when Kim, Kelsey an dhe fiancé would arrive to feed me real food (and slip me sinimet). Within twenty minutes I felt alive again, and I could stand and walk with a walker. This shocked everyone who witnessed it – the head nurse, her staff – everyone but Dr. XXX who conveniently missed it.
And then—every night – still no change in order, despite my wife or I would leave messages for Dr. XXX to clarify the term, “WHILE AWAKE” then the night crew would continue to cut off the meds I needed to function.
Let me briefly explain what happens when a PD patient of seventeen years is forced to stop receiving his normal dose of meds for 9-10 hour. First, my muscles, joints, and tendons begin to tighten. This could lead to muscle spasms/cramps. If I manage to sleep it will usually happen between 1am & 4am. A new pain introduced itself in Miami in my left hip where the femur attaches to the pelvic bone. The pain was caused by weakness - my leg and hip muscles having atrophied to the point that the left hip had lost stability. The joint ached and throbbed and I could not find a position that brought relief. Two to three hours… that’s how long the ache in my hip lasted… and grew worse with each passing day of inactivity.
By Day 12, my wife had a new plan get me out of this insanity– except she now insisted on me going straight to a physical therapy clinic, being as I could barely use a walker (unless I had my proper meds, in which case I could and did walk down a hospital corridor). Thus began a new adventure where a case worker of cheeriness and perpetual smiles was working her darndest to get me into a rehab facility… yet always coming up short.
Day 13 & 14: Two men came to see me, saying they were here to give me a psychiatric and psychological evaluation. They asked me why I was here and I told them. Meanwhile, the case worker said she was really close… darn weekend… Monday for sure!
Day 15 Kim had promised to stay the night if I was still there. She stayed long enough to witness what I was going thru. She left me sinemet and promised she’d arrange my release the next day whether they found a rehab facility or not.
Day 16: DISCHARGE DAY! Armed with my normal dose of meds, I awoke ON and immediately wow’d the day shift by standing and walking with a walker. Dr. XXX a showed up for the midday show with eight people. “Where’s the meds your wife gave you?”
I had managed to hide them in my sock but refused to turn them in. So Dr. XXX called the police. One of Miami’s finest entered armed and dangerous. Fortunately, the officer saw my Eagles clothes and was a big fan of Jason Hurts AND the MEG… Translated: the big guard dog liked me better.
I began hatching a back-up plan… if Dr. XXX refused to release me, I’d declare my patient’s right to be discharged. I’d then pay the police officer to drive me home during his off time.
But XXX wasn’t thru. “Mr. Alten, either you give us the meds or I will cancel your release.”
The officer pulled me side. “Steve, I got your back, but you don’t have a choice.”
“The pills are hidden somewhere in this room only I don’t want to show them the hiding place in case I need to use it again for something. Officer, if you escort them out, I’ll get the meds.” The officer led them out, but I knew they were recording everything.
Reaching under the hospital bed, I pretend to loosen something—
--while my other hand removed a medicine vial tucked into the elastic of my sock. Using my gown to block the camera, I removed seven pills from the vial, broke one in half and placed it inside the now empty container. The rest I tucked carefully into my socks as I pretended to remove the vial from the bed’s chassis.
XXX and her team returned. I handed her the vial. “There’s only two halves here.”
“That’s all I have left.”
“He’s lying,” a nurse said. I heard him say he had three pills. He hid the rest under the bed.”
“Maybe it fell out.” I made a big show of looking under the bed—as my other hand (again concealed by the hospital gown), felt beneath my sock and removed a pill. “Wait, I think I see it.” I reached beneath the bed and handed XXX her missing third pill.
Suspecting I was still holding out, XXX had them switch my room to the one closest to the front desk. At 3pm, a young guy introduced himself as Dr. Goodman to do yet another psychiatric evaluation. Ten minutes was all he needed. “You’re fine, best of luck.”
Kim called at 4pm and said she was still waiting to hear that Dr. XXX had signed the discharge papers..
5pm… still no word, but the head nurse (Kory) who had seen the meds turn me into a normal human being told me Dr. Goodman had signed off on my release.
7pm Kim called to tell me Dr. XXX had revoked my release.
I was beyond livid and demanded to see her. Kory came by twenty minutes later and said XXX had left the hospital.
Why was she doing this? What was her intent? To keep me here until my organs failed? To this day, I have no clue… but now there was no doubt - this was me vs Sosa, my life at stake… if I didn’t get out now then it was just a matter of time before the stress and lack of movement weakened my heart and ended my life.
And so I went after her – you want war? Meet my army.
With my meds running low, I videotaped myself standing, explaining that Dr. XXX was keeping me here against my will, leaving me no recourse than to post this video everywhere and unleash my MEGhead army to tell her exactly what they thought of her keeping one of their favorite authors from being discharged. The head nurse (an ally) sent XXX the video.
Kim called less than an hour later. Out of the shear goodness of her heart, Dr. XXX had managed a miracle, making urgent calls during her “family time” until she had gotten someone to approve my Parkinson ‘s meds every two hours throughout the night. She had also signed my release – for tomorrow – Day 17, but asked her supervisor to remove her from the case.
Was this good news? After a horribly disappointing day I had managed to hit her back … to let her know I wasn’t going down without a fight… a really poor choice in words. I was still and everything in my gut told me this would be the worst night of the lot.
It began when the head nurse (Jose) and his two female assistants decided I needed to be in bed vs a chair. Each woman took an arm and Jose grabbed my left hand in his and twisted as he attempted to control me thru some kind of hold -– dislocating my fourth knuckle on my left hand. So I hit him, too. Right in the deltoid with enough force to let him know, “hey, I may be sixty-four with PD and weak from sixteen days in bed, but if you get rough with me again… I will hurt you.”
They got me into bed and left. Jose brought me my 9pm Sinemet which I examined carefully and took with the bottled water in his hand – which he refused to allow me to hold. Instead, he squeezed it and drenched me.
Feeling my heart racing, I reminded him that I was not wearing an EKG sensor.
“I’m done with you.” And he left.
Enter a male nursing student … my new babysitter – and we hit it off right away.
I woke up the next morning to the Head nurse in my face “We do not hit nurses.”
“Do you want to even know why I hit him?”
“We do not hit my nurses for any reason. If I have to say that again I will tear up your discharge papers.””
Kim arrived at noon. With my meds, I was able to get in her car unassisted. Two-and-a-half hours later we arrived at our home. Kim had my walker ready. As I stepped out of the car both legs collapsed into jello (I had never considered what the lack of circulation over a prolonged period could do)—
-- and down goes Frazier! Down goes Frazier.
UPDATE: It’s been three weeks, and I am able to stand unassisted, feeling better each day. But my left hip is a mess, and I’ve got “issues.” This kind of behavior… the rough stuff? I am equally to blame, and most of the nurses and I got along great. But withholding needed medicine for no reason and canceling my release cannot be allowed to happen to anyone.
If you are an attorney practicing in Florida and would be interested in hearing more and representing me in a lawsuit vs the University of Miami Hospital, please contact me by email at MEG82159@aol.com
--Steve Alten
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