Friday, May 7, 2021

Brain Stimulation

My cousin is having something inserted into his brain to stop his tremors. He has Parkinson's. He 62 or 63. I think he is 2 yrs younger than me. 
I should know but I don't. I know his birthday does that count?

He will be awake while they perform this surgery on his brain so he can tell them and show them his tremors to make this work for him. 
I believe they do things like touch your nose, button your shirt. Which are becoming difficult for him of late so once they hit the sweet spot he will be without tremors. He has been putting his hands in his pockets and things like that to not deal with everyone asking him questions. I know that makes him think we don't notice but it's not the reality. But we all do things like that don't we when we have something we are insecure about?

When I saw him last it was my dad's funeral. The rest of his body wasn't that bad regarding tremors. I only noticed his hands. His hands were very bad hence why he was always putting them in his pockets. But his wife has shared that it's gotten a lot worse so they are trying this option they were given. 
I've seen this on TV and think it's amazing. 

But I know me, being awake knowing my skull is wide open kind of freaks me out. I wonder if I could ever get through this.  
The time I saw this on TV the man played the violin and the tremors kept him from playing or at least playing as well as he did in the philharmonic. So he had his violin in hand as he laid on the table and they would tell him to play and they would see the reaction and they'd move it and continued doing this until he was tremor-free. When he was tremor-free they knew this was the sweet spot and it was implanted. It was a fascinating documentary. 
So having seen this I do understand what he is going to be going through at least as much as I possibly can without going through it. 

The surgery was to be Tuesday so I text him after work Monday and he told me it was postponed until Thursday. I just so wish for this to go very well. He is a bit scared but he is also tired of the tremors. He was an electrician but he can't anymore. He owns his own company so he has others to work for him but he wasn't ready to retire. 

I assume this deep brain stimulation works like my tens unit on my back. 
I think the wires put into the brain send electrical pulses to the brain to help control motor symptoms. 
Now I could be wrong on this - I am certainly not a doctor. 
Hey, 35 yrs ago it was the 5th of Mayonaise so what do I know? 🤣 
If I weren't so lazy I'd google it for you, but I'm lazy.

I only watched a documentary several years ago on this topic.
I know that not everyone is a candidate for this and not everyone can even benefit from this. 

I am hoping this works out for him because it has changed him. 
He is far quieter. Quiet and Frank were not two words you'd put together normally. A very smiling, laughing, gregarious kind of fella that everyone loves. He is normally very social as well. But now he's quiet and reserved and he is staying away from people. Just the opposite of who he is. 

I don't know if there are side effects but I would assume so. 
What doesn't have a side effect? But if I were him and I was told this could work for me and my disease I think I'd have to try it. 
Then again I don't know the side effects either.

We text back and forth late Monday night and he said, "Boy remember the good old days when I would come to you and Doc's house and we'd party like the stupid kids we were and I'd pass out on your sofa and you'd all go to bed? " Of course I remember those nights Frankie. (I was 24-25) He laughed and said, "Do you remember the notes you left on me?"   
Now that made me laugh because I forgot all about that until he reminded me. But it all came back to me and boy did it make me laugh. 

Frank was always first to fall asleep. I mean to tell you he was 22 years old and couldn't stay awake after drinking, or smoking pot, hey it was the early 70s. Don't judge.  
That night he was drinking and he just laid down on the sofa as everyone else had gotten up on a commercial break went to the bathroom and kitchen. We all come back to find him out cold on the sofa. We tried to wake him. He was completely out of it. 

So being the bad friends we were, we wrote notes. 
We actually taped them (before post-it notes) all over his clothes, put some in his pockets, taped some on his face. Oh, some were filthy, some were just funny, some were weird. But there were 3 of us that did this to him while he was passed out on my sofa. We felt he deserved this being such a lightweight going to sleep at just before midnight on a Saturday. 
The rest of us were watching SNL (this was the 70s before it could be taped) 
But without a sofa to sit on, we just sat on the floor and let him have the sofa. Aw, my 20s.

When we went to bed I put a blanket on him and left him there.
We tried to wake him but he wasn't budging. 
In the morning we got up to find him gone. 
He left us a note and it said - very funny you guys. Talk with you later.

He said he found the note in the pocket of his jeans only when his mother went to wash them. She was mortified and as she was yelling at him and waving this note at him he told her she shouldn't read things that belong to him. Then she told him to do his own laundry then if he didn't want her to clean out his pockets. Ooh good one Aunt Filomena. 

She really wanted to know who wrote that filth. She assumed it was female for some reason. But it was my ex who wrote it while Craig and I laughed looking on. Ooh, she was so mad at him. What kind of girls are you seeing? You know, that line of questioning. Poor Frank.  Aunt Fil was barely 5' but you didn't want to mess with her.

Thankfully he did not wish to tell his mom that my husband (ex)must have written that because he knew his mom would give Doc (and me) grief forever so he said, I don't know.  She did not buy it but let it go for some reason. Then he stopped by our house and we all had a good laugh.  We know his mom well, of course, and we know damn well it would have been pure hell if she knew either of us had been involved.  She got over it and we all have a funny memory.

He was like my little brother. When young we tormented, teased each other and as we got older became the best of friends. Oh, the teasing didn't stop he was always busting my chops. But I also knew it was with love.
He taught me to water ski.  I was so afraid to fall that I never did. 
I'm not the best swimmer and lake Erie is huge and I was scared but I gave it a go. He explained how to fall. No, not gonna fall. I will stay up. 
By God, I did and became quite a good skier. Who says fear doesn't help?

At my first couple lessons with him, he just kept telling me I had big buoys so I'd float if I fell.
Yes, he was like a pain in the butt little brother. Guess his teasing just got me ready for Rick. Then again it could be why these two like each other so much. When they are together no one stops laughing and I am certain there will be stories about me and teasing involved.

Do you know anyone who has had this deep brain stimulation done for tremors?
Would you do it knowing you are awake through the whole surgery?

17 comments:

bluzdude said...

The prospect of being awake during surgery scares the hell out of me. But if it was as necessary for me as it is for him, I'd trust the doctors and try it. Good luck to your cousin.

We used to "sign" people who passed out at our parties. We'd get a full sheet of paper or paper plate and write "Shitfaced!" Then put it on him and take a picture, that would be posted on the wall (as soon as we got the film developed.) Oftentimes, it was the same guy, who also earned pictures of "Shitfaced again," and Shitfaced Forever!"

Arkansas Patti said...

Love the special relationship you have with your cousin and he does sound a bit like Rick. Rather Rick sounds like him since the cousin came first.
Wishing him all the luck with the rather radical operation and hope they at least make him mellow for the open head surgery. It is amazing what they can do anymore and this sounds like it will completely give him back his life. Prayers and hugs coming his way. Let us know.

Olga said...

A good friend had that surgery quite some ago now. It is apparently not a picnic to go through, but it certainly added to the quality of his life for many years. I will hold your cousin in my thoughts.

Abby said...

I vaguely remember hearing of this method for treating tremors. Hope it works well for Frank!
I think I would find the process rather freaky, too, but if it helps the quality of life, I'd go for it.

Margaret (Peggy or Peg too) said...

Bluzdude, yep that kind of stuff you do when you're a kid. Love it.

Patti - oh the stories I may have to tell about Frankie and I. trips to Vermont, Ohio, etc. I was in his wedding he was in mine. And he has loved both of my hubbies named Rick. When he met this Rick he said, "poor she sure is helping the family so we don't have to learn a new name"

Olga, I am so glad to here this. It is a 2 part procedure and today is part 2 - turning it on and who knows what all else. I hope to have some good news by tonight.

Abby, I THINK I would too. I wonder why Michael J Fox never did it. Hmmm....

Sheila said...

What great memories!

A friend of mine had DBS done two years ago for her essential tremors, hands and head, pretty bad. It took a bit to get it adjusted properly, but she is much better now. I believe she has to go back (she had it done out-of-state) every so often for adjustments. My sister has essential tremor in her head, and her doctor said to just drink wine. Guess it helps at night. Kind of a weird prescription, but my sister enjoys it. She's an award-winning photographer, and has learned how to work around her head tremors.

I hope it works out well and easily for your cousin.

Brian said...

I remember seeing bits & pieces of that documentary about the violin player. Amazing stuff.

I asked if I could be awake and watch when they repaired my biceps tendon a few (10) years ago. The surgeon looked at me like I was nuts. I just told him I was curious to see how t was done and hey - it's my arm! That's when they slipped me a mickey and I was out. I took that as a "no".

Julie H said...

My friend's mom has Parkinson's but it is still early. Very interesting.

Margaret (Peggy or Peg too) said...

Oh, Brian you were nuts that is why he/she looked at you like that. Rick has been known to watch surgeries on TV. He watched one and when I tore my meniscus he was convinced he could do it. I told him being "handy" is not the same as an orthopedic surgeon.

Julie, boy a lot of people do. Fingers crossed I don't get that. But it is in the family.

Misadventures of Widowhood said...

I've seen programs about that surgery. Got to be scary to go through but the pay off seems worth it. Hope you're cousin's goes well.

Wish you remembered what was in that note in his jeans pocket!

Margaret (Peggy or Peg too) said...

Jean, if my ex was alive I'd ask him. It must have been bad if my Aunt got so upset. I will ask Frank when I talk to him. See how his memory is. Probably better than mine. If I had written it I'd remember but...

Mike said...

I know lots of people that have had deep brain stimulation (DBS) for Parkinson's. They are in Claudia's Parkinson's support groups. The only downside is that it doesn't work as expected. But everyone I know that had DBS has done well with it.

Most brain surgery is done while you're awake. The docs want to make sure they're not poking the wrong place.

Margaret (Peggy or Peg too) said...

Mike, the downside is it doesn't work as expected yet everyone has done well with it.
Do you mean they survived the surgery but it didn't help much?

Cruisin Paul said...

I'm sorry to hear that he has Parkinson's. My good friend Al has had Parkinson's for a long long time along with dementia. I'm afraid that my good friend does not have much longer in this world. He can no longer eat and is throwing up. I've seen Al go from a strapping strong man. He worked as an engineer throughout the world and Parkinson's started while he was working in Indonesia. When he came home I noticed his hand was shaking. From then on he got worst and his wife had to put him into a nursing home until now. I'm afraid that my friend Al is dying. Parkinson's is a deadly disease where you as a friend really can't help him and I wish I could. I'll pray for cousin Peg. That's all I can do. I've been praying for a long time for Al. He'll rest soon.

Cruisin Paul

Margaret (Peggy or Peg too) said...

Paul, I'm sorry about your friend. I too hope he gets peace.

Rian said...

I have heard of this surgery and it does sound like something that might help the tremors. My uncle died of Parkinson's years ago... don't know if that surgery was an option then. And I too wonder why Michael Fox never had it done... or if so, didn't make the public aware of it. He certainly handles his Parkinson's well as from what I've seen, he's still acting (or was).I will keep your cousin in my prayers.

It's.a.crazy.world said...

I hope your cousin's procedure helps him...I imagine tremors are difficult to deal with. My Mom has Parkinson's, but she has other manifestations other than tremors, like difficulty swallowing. She has dementia as well. She is doing pretty well, though.