Diann Shaddox Foundation for Essential Tremor
I Shake. So What! Part 2:
An Autobiography of the reality of living with Essential Tremor
By David Jensen
I tried once to see if there was any new medications for shaking. After a long talk with the Doctor, he said; “You only want to have drugs! Get out of here!” The sad part is, you can't tell an Officer to kiss your ass! Fast-forward to life as a civilian again.
I returned to Germany with my wife and child, and got a job. Where others have no problem, I learned to use little tricks
when measuring tools after grinding them. I also got more intelligent when it came to people making stupid remarks with comebacks like: “Sure I shake! Your wife loves it!”
I started my voyage through the various prescription medications, and also met lots of different Doctors! The first Doctor had me taken pills for the shaking. And I finally had a name! Never before had I heard a Doctor say what it is! So the pills were working some and at the same time, I was getting Asthma problems again. I figured it was because I was working lots in the garden! I was to increase the dosage to 250 mg. And that was when the big one hit me again! When the Emergency Doctor came to the house and pumped me full of cortisone, she said I can't take any Beta-Blockers with Asthma. It made click in my brain! When I asked her about Inderal, she said that it was one of the first on the market. So now I know what happened way back then as a teenager. My normal Dr. should have known it! I changed Dr's the very next day! Onward to see a neurologist, who in the course of time, had me try almost every drug available. Some make you so sleepy, you might as well be dead. Some don't do anything. And one made me so high and comical, that I got in trouble and got thrown out of the Dr's office. In the waiting room of my beloved neurologist, the speaker was covered with an artificial bush. Sitting next to me was a man who had a serious psychosis, and I mean real bad! The Dr. calls his name over the speaker, the man starts to flip out, and being stoned, I said; “The voices are coming out of the walls!” He ran out of the office screaming. And I was no longer a patient. He threw me out. Okay!
After a few days, the pills wore off and I returned to apologize for my actions. He refused to see me. I was the bad guy? It was the pills that he gave me!
What followed was a few years of simply shaking. Then, getting tired of it all again, it was back to the neurologist. “This medication is used for people with Parkinson's disease”. So, I tried it. I took one whole pill before we went to a dinner party, and I could hold a tiny coffee cup in between my fingers! Wow! Unlike the ones I had tried before, with these new pills, I had no idea that I was flying on cloud nine. The next day, I only took a half pill in the morning. Sitting in my party garage, I looked up at the pipe and thought; “Would the pipe hold me if I hanged myself?” But I could not even get out of the chair until late afternoon. Just sitting there, in the Land of Oz! When I told my Dr. about it, she stopped writing and looked real hard at me. Immediately realizing the danger in what I told her, I said; “Wait! Stop,Stop, Stop! I'm not a suicide patient! I love living! It's the stupid pills!” In Germany, if a Dr. thinks you are in danger of suicide, they can have you in the mental hospital within the hour. If you want to or not. Resistance means being handcuffed by the Police and they ride with you to the Institution. A very dangerous place to end up! She said that I should continue taking the pills, and that the depression and tired feelings would abate with time. Tried it, but with only ¼ pill, I was still walking on air! The problem what I can't understand is, why don't they prescribe a package with only 5 or 10 pills to see if they are effective? I pay for a package of 100 pills, end up taking maybe 3 to 5 of them, and the rest I have to throw away! So onward to a few other Neurologist. One tested me, and said he doesn't think that I shake at all! I asked him when was the last time he seen an Optometrist! Yeah, to get by in this world with the shakes, you have to sharpen your tongue!
Then, I decided to look into the prospect of having DBS (Deep Brain Stimulation). Went to the University Clinic in Tuebingen, reported at the reception desk, and took a seat in the front lobby waiting room. While I was waiting in the front lobby, sitting on a couch, the Dr. was observing me. Which I did not know till later, they first observe if a patient is simulating or not. So talking to the Dr. , I say that I only have it mostly in my hands, and he says; "and your head!" I said; "no, only my hands!" He then tells me that so long I was sitting, my head was bobbing from side to side and up and down! And I asked him, as I pulled my Mp3 player with earphones out of my pocket; "didn't you see I was Jamming to the tunes?"
He then started to talk about first trying one of the various medications before an operative procedure. I went into my recital of all the known medications and their horrible side effects, or no effects at all. Guess I stepped on the guys ego! “Who is here the Dr.? You or me?” He asked. “Just saving us some time!” I answered smiling. God in White stood up and told me I was wasting his time. “Pick up your prescription at the front desk on your way out!” I got my paper and went home. I had already found a new Neurologist, who A) knows all about ET, B) is very concerned about my condition and is always up to date on the latest research, C) always looks in his cabinet if he has a test package, so I don't end up paying for pills to throw away, and D) most important, simply takes the time to listen, not just hearing like most other Neurologist. He talks to me like a friend would. Honest!
So, I took my prescription to the pharmacy. They didn't have any of the 'cheap, inexpensive, no-name Primidone. I was not in a good state of mind and said; “If I don't take them and stop immediately, my liver will malfunction. Either I get the pills, or I have to go to the hospital to prevent a liver collapse!” So they gave me another brand of pills with the active ingredient Primidone. Mylepsinum. And I started to take the killer pills again. But now, I had no adverse side effects! Each day I increased the dosage till I found the right amount for me, and my body. At the next appointment with my Neurologist, I held out my hands and said; “Taa-Daa!” Shocked, he asked how that can be, or did I already have the DBS surgery. “”Nope! Mylepsinum!” I answered with a big grin. Smiling, he says; “The mind is a very strange place that we know little about!” Now I receive the correct pills all the time, because they write 'Aut Idem' on the prescription.
Since then, I have been able to type again, on my good days and with the medication. Of course, there are days when it seems not to work. But that is simply how it is with Essential Tremor! One good day and another not so good. I have been able to write a book, thanks to the “Porsche Primidone”! And on really good days, I can even manage to write with a pencil, so that others can read it. Now, I am too old to start learning the guitar again, but I can hold my glass in a restaurant like everybody else.
And for the little things, day to day, that I can do like a “Normal” person, I am very thankful!
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