A Pill is gone, because of….

About a week ago, I was calling over to the hospital to speak with my new Neurologist about the newest medication I’ve been on for awhile. The one thing that I hated with it is that it had to be taken 3x a day.

Well…. one of the side-effects was REALLY kicking in last weekend. Oooohhh…. That thing was making me sooo tired. I’d get up, take pills, eat breakfast, and was so tired that I just had to lay back down. I was OUT. Woke up at noon, took a pill, ate lunch and just had to lay down again! Woke up for dinner…… on and on and on…..

I finally told myself NOT to take anymore Sunday night or Monday morning. Monday, I called over to the office of my new Neurologist and spoke with the nurse about the problems for the weekend. She told me just to stop the Morning and Noon. Uh, no. I told her that I was wanting to COMPLETELY STOP the pills all-day. She and that was fine. I was only taking them for the reason of stopping the tremor in my right arm and hand. Made it “better”, but the tremor was still there (not as bad as before). If the pills were COMPLETELY getting rid of the tremor in my arm, then I would be concerned with getting off it. I didn’t want to change the med. But I could be just sleeping all day with it EVERYDAY! ARGGGG…..

So, I got completely off that pill and now my right-hand (and arm) has the bad tremor back. It really bothered me when it started coming back. But after a few days, I have just gotten used to it (I guess that’s kinda the way I’d put it). I’ve had this before, so I have gotten used to again.

I was told on the phone that the new Neurologist should call and discuss. That wasn’t happening. So, here’s where I am: The one prescription is removed. Not feeling like I just want to sleep 24 hours a day. Tremor in my arm/hand has returned worse than before.

Other than all that, everything is great again as far as the THINKING and TALKING goes. I can just stay this way until another surgery (someday) would help. That’s where I am.

ūüėČ

The New Doctor…

Today, I went to see a NEW Neurology Doctor. It’s down the street from the hospital of my brain surgery in a different building:¬†University of Physicians – Neurology.

I was there to explain to the doctor my “whole¬†story” of all these things I’ve been through with my whole surgery. I explained how my right-arm is much more shaky after getting off this latest medication. Well, they have a plan….

Let’s do MORE Brain Surgery! ¬†ūüôā

I’ll look into it and think about it. No coma-time (unlike my last surgery) and have it be just in & out in a day. Well, I don’t know about that ONE DAY. After surgery on my brain, I’d rather stay in the hospital at least ONE night. Eh?¬†

So, how does this surgery work?

Deep Brain Stimulation for Essential Tremor.
Deep brain stimulation (DBS) is used to treat a number of movement disorders, including essential tremor. DBS is a way to inactivate the thalamus, a structure deep in the brain that coordinates and controls muscle activity. The true cause of essential tremor is still not understood, but it is thought that the abnormal brain activity that causes tremor is processed through the thalamus.

How Effective Is Deep Brain Stimulation?

Deep brain stimulation provides moderate relief for approximately 90% of patients with essential tremor.

There’s allot more to Deep Brain Stimulation for Essential Tremor, but this list is interesting…

Advantages of deep brain stimulation include:

  • It doesn’t destroy brain tissue and won’t limit future treatment.
  • The device can be removed at any time.
  • It is adjustable.
  • It may be more effective in controlling tremors than¬†thalamotomy, or destruction of the thalamus.

Disadvantages of deep brain stimulation include:

  • Increased risk of infection from the presence of a foreign object in the body
  • Repeat surgery every three to five years in order to replace the battery in the device
  • Uncomfortable sensations that may occur during stimulation

MY THOUGHT:¬†“Well, everything has disadvantages…”

Let’s look into it more….

What Happens During Deep Brain Stimulation Surgery?

Using CT or MRI scans, surgeons will target areas for placement of the electrodes. Some doctors may use an electrode-recording technique to map and target the specific areas in the brain they will need to reach.

Once the correct location is identified, the permanent electrodes are implanted in the brain. The loose ends are placed underneath the skin of the head and the incision is closed with sutures. The wires are attached to a small impulse generator, about the size of a pacemaker, that is placed under the skin on the upper chest. Two to four weeks later, the IPG is turned on and adjusted. It may take a few weeks until the stimulators and medications are adjusted before a person gets relief from symptoms.

Will I Be Asleep During Deep Brain Stimulation Surgery?

You will remain awake but in a type of “twilight” zone during most of deep brain stimulation surgery. This allows the surgical team to interact with you when testing the effects of the stimulation. Small amounts of local anesthetic (pain-relieving medication) are given in sensitive areas. The vast majority of people experience minimal discomfort during the procedure.

MY THOUGHT: “Twilight Zone…. I’ve always loved that show! ūüôā Basically awake during the entire surgery. Pretty much….”

What Should I Expect After Deep Brain Stimulation Surgery?

After deep brain stimulation surgery, you may feel tired and sore but will be given medication to keep you comfortable. Also, you may have irritation or soreness around the stitches and pin sites.

As with any surgery, there are some guidelines and limitations that you should follow after DBS. Be sure to discuss these with your doctor and ask questions before surgery. Understanding what you will be experiencing and knowing what to expect afterward can help ease some of the natural anxiety that comes with any medical procedure.

Can I Use Electrical Devices After Deep Brain Stimulation?

While you should be able to use most electronic devices after DBS surgery, you should be aware that:

  • Some devices, such as theft detectors and screening devices, like those found in airports, department stores, and public libraries, may be triggered by your device. It may take extra time to go through airport security. Always carry the identification card given to you. With this, you may request assistance to bypass those devices.
  • You will be able to use home appliances, computers, and cellular phones. They do not usually interfere with your implanted stimulator.
  • You will be provided with a magnet to activate and deactivate your stimulator. This magnet may damage televisions, credit cards, and computer discs. Always keep it at least one foot away from these items.

MY THOUGHT: “Kicks theft detectors? …screening devices? Ugh… Might be a little hard with that. (kinda funny, though…)”

But, still do-able…

New Job at the Hospital…

Well, this Friday position over in HR to do “filing” of paperwork has become… well… not as complicated for me as was thought. So, they informed me:

“Darren, we don’t have enough for you to do (every Friday), so we only will need you to come and work for us every-other Friday.”

Ugh. Great. What am I going to do with these OTHER weeks I’m not volunteering there?
Wellll… Ok.

Here’s my story:¬†Buddy and I are always talking after lunch while I’m waiting for my ride home. I do my jobs on Friday morning. He’s been sitting and volunteering his job (my old Friday morning job) for YEARS on Friday afternoons. So, it was agreed that we would do it this way: when I am not working in the other building, every-other morning, then I will just work at this position again (his position)….on those days…for the afternoon.

Uh, hell no. That only worked (one day) until I had the Volunteer “Lady Up Above” caught me sitting there. Doh! I had to get out of there before she kicked me HARD.

“YOU cannot volunteer at afternoon positions! YOU informed me of this!”

Dang.

Ok…. Ok….

So, I went back to see her¬†(after getting the yelled at and kicked) to inform her that I needed something to do on the every-other Friday since I have nothing. She told me I need to go work at “that other building down the street” and AWAY from the Hospital itself.

“Just Go Away….”

This is cool. Now, the opposite weeks that I work at the HR office, I work over at the storage building. I create and insert forms into a folder, and then I put everything into a box. An EASY job and it’s better than just sitting at home on the “Off Days”. ¬†ūüôā

(Just between you and me… these guys at the new location want me to work all day/everyday after I’ve been there just one morning? Hahaha… I told them I’ll think about it.)

Surgeon Appointment

I had an appointment to see my Brain Surgeon at the hospital today.

I asked another Doctor who came to check on me…

“So, is my Brain Surgeon busy doing someone else’s brain today, and this is the reason I am unable to see him at this time?”

“No, the Neurosurgeon is in China right now for a conference where he is speaking.”

WHAT? My Brain Surgeon would RATHER go to China, and speak to other people who (probably) don’t understand what he is saying, rather than meet with his success?

Okay…. So, at the end of the meeting that I was having today with a different Doctor, I was told that I had no reason¬†to come back¬†and “try” to see the surgeon again for anymore years. I was informed that the SURGEON’S job is ALL DONE and it all looks good.

I’m sure they meant.. DON’T¬†try to come and see him again!

But I think that I WILL try.

All BRAIN SURGEONS just need to be visited on a regular basis, right? They want to observe the good jobs that they completed successfully? RIGHT?

I went ahead and set up another appointment for late next year, even though they said that I do not need to come back at all. But, then again, don’t you think I should go ahead and KEEP TRYING¬†until I see him? RIGHT?

Is he going to stay around the office just to see me? ¬†….a year from now?

Mmmmm…. maybe. I’ll find out then…

Two Hundredth Blog Entry??? (English)

Really? Two Hundred (200) entries have been done within this blog? Really? Really? Really?

Wow… That’s a few. Yes, I would like to thank that between-my-ears thing that has taken hours to put this together. To tell those items what to do. A Brain. That’s correct, I’m typing about MY¬†BRAIN and that is what this blog was started for, if you didn’t know.

You “newer follower people” out there (I actually know there is), I run this for my brain surgery. Check the very beginning of last year. You’ll see me… before the surgery and then… well… after the surgery….

Just go read the dang thing!

Today it is just this thankful life that I live. Have a house. Volunteer at a hospital. Have money from the government.

Life is good.

Ah, Fredag… (Norwegian)

Ahhh…
Another Friday…
Another Friday…
Another Friday…

How did we work through another Friday this time? Yep. Hospital Volunteer!

This was just the normal & busy Friday morning while greeting people.

“Good Morning.”
“Good Morning.”

Can’t say I had to do much of anything differently than I had before. It was a good day of mainly just greeting people.

Now, the one thing I CAN say that was better is an email I received. The typed characters are telling me when/where to go for my “training” next Friday. Training? Training for what?…. hopefully you are thinking…

Ok. Let me type into the truth of a feeling. Since this is my one and only day of actual “work” that I have to get up for after spending days off, so I have started to believe that a Friday would be Monday! Understand what I’m typing? I want to think to myself that I am starting a new week by going to work.

Mr. Self, lets go to the beginning of the week’s work!

Buddy, it IS the workday. You are correct there. But I feel the confusion that you may have is falling into the fact that you have forgotten today is a FRIDAY. That means your work week is beginning and ending all on the same day. So, it is just a single Workday and the Workweek.

Oh…. Is there some way that we can fix this, Mr. Self?

Buddy, I feeel and understand what you want. I understand why you would think you need a full job, just because you’re bored. But is it going to get fixed? No.”¬†

So, for me, a Friday (sniff, sniff) is the only day I got… Oh, don’t forget, it’s only half-a-day.

Okay. Okay. Okay. I honestly have to say that I would love it to be a “Monday” instead of just a “Friday”. Understand? I want to work! Enough… Enough… Enough… Let me get off my “chair for whining” and type something different!


So, that NEW JOB THING is starting NEXT WEEK! 

Supposed to come for the “training” at 8:30 till 10:30. Then after that, I’ll just go back down to my entrance and stay there till it’s time to eat. Hey! Do whatever needs to be done to be able to EAT! That’s the most important thing. Right?

I’ll learn more about something new next week. I’ll have more then to share.

ok… ok… OK!

OK, I’m back to blogging-ing again…

“Oh… I am feeling so much better that he is back to his blogging. I can feel my days going by better and better…”

Uh-huh… sure…..

So, it’s another Friday. Can we tell what happens on a Fri-o-Day?¬†Well, it is time for…

anybody… anybody…

Yes! Hospital Volunteering!

Today was a bit more “exciting than normal”. I was expecting less with the heat and “chance of” rain, but the people just showed up normally. I’m getting used to pointing people around the corner for serious questions. Others, I can handle…

“How do I get to the other building?”
“Go outside and walk to that building, or go over there and walk the hallway to the main building.”

NOW, what did I learn today? ¬†“DING! DING! DING!”¬† THIS is what we have ALL been waiting for! Spoke with the Main Lady of Volunteering. She told me that next week she will give me a call about my NEW POSITION. She explained the whole thing to me, but I’ve already forgotten the…. whatever that thing I’ll be doing is.

“I’ll call you next week. Is there a good day?”
“Monday is bad. (you readers¬†know… it’s psych lady…) But any other day is cool.”
“OK. I’ll call you next week and we’ll set something up.”

Sweet!


Wait…. Wait…. Wait… I forgot to explain the best part of the volunteerism today!

I had my son with me today because he wanted to come. Kind of didn’t explain last Friday (the 17th) just because I had my son helping me. He was”learning” a few things along the way and we didn’t do too much for 4 HOURS…

This Friday was…

“Dad, I want to help.”¬†

Throughout a day, I have people ask where places are. All I could ever do is just point the direction or kinda start them by telling where to go and asking from there. My son, on the other hand, was wanting to walk people to where they needed to go.

“Go for it. Knock yourself out. I’ll be right here whenever you get back.”

I pointed on the map where to go, but he never took one with him.

He’d come back… Said he made it all the way there (and obviously all the way back between two buildings).

“ooooooook, if you say so…..”

Later I had a lady roll by and going out the door. She told me that my son was so nice and helpful with what he did for her.

So, I guess he could watch that door next time and I’ll take a nap. Hahaha….