Hello . It been a while since we’ve met here. Please come in and have a seat. I’m going to put on some music and join you.
I hope you have been well. Things here in the land of Parkinson’s, prose and paint haven’t been that great I’m sorry to say. It’s been almost 10 years since I was diagnosed with Parkinson’s, since then as most of you know my life as expected has totally changed. I’m not going to go into depth of the story right here right now. Please feel free to read me in my journal (s) here. Needless to say I’m as far away from the life I all my life for as I could be. It kinda feels like I’m a baby boy again getting passed around the relatives , anyhow . I’m almost 50 which is a mind trap all together because I’m pretty sure I’m like 30 something still.
Anyhow here the real point. I have started the process of Deep Brain Stimulation Surgery. Otherwise known as DBS. I will try and address as many of the questions I’ve come across here as possible.
I’m having the surgery because I’m at the point where I have maxed out my meds. The side effects of Parkinson’s medication are very very extreme. Just as extreme as the disease and just as hard to manage. After doing really the best I could would the real life support I had. **Sorry online guys I love you but the real life impact is kind void** the medication just isn’t doing its job. So the hopes are that the surgery will give me the chance to take less meds. Because most of the work of the meds will be done with 2 implants in my brain and 2 power packs implants in my chest. I’m having this process done , hopefully I can continue to be alive. The surgery is effect. The surgery on the same hand varies from patient to patient and is highly risky. The surgery will not cute my PD, it will not make me better or not disabled. But it will keep me here for a while more walking and talking.
At this point I have a Neurosurgeon, I have a Movement Specialist Neurologist, outside of OHSU and just today I got a call from the person who works for the implant company. It’s pretty cool , very science fiction.. She will and already within one phone call started to help coordinate communication between the various medical teams and people I need to go get tests from ect. Certainly not something at this point I possess the executive function to manage, but that’s a story for the journals. So in short that’s what’s up. It’s pretty terrifying to be honest to be this far along and still not feel like I have solid home. Not that I don’t love the mountain house but it again isn’t anywhere close to what I had planned. My ex wife gladly took all that away from me years ago. Honestly I thought I’d be stable by now but doing Parkinson’s with immediate family or a loving partner I’m finding is literally impossible with destroying your life. Oh and cancer I had no idea you expect. I wasn’t going to let the cancer kill me but was not prepared for the after effects the radiation and chemo treatments. From there I made some bad choices in people to take care of me . As little as I realized but I was in really really bad shape both mentally and physically. I wasn’t capable of making start choices because Parkinson’s had taken my ability to do so away from me. ***People will try and argue that I was there I knew exactly what was happening, well. I did but my brain no longer knew how to effectively, safely and in a manner that any of you out there will ever understand. When your brain doesn’t have the chemicals it simply doesn’t work right . So get educated and stop being judgemental bastards . Sorry had to vent.
So here we are 10 years later and I probably should be dead but I’m not and I’m going to give all of this one more shot. Deep Brain Stimulation Surgery. Soonish probably March, April if I’m lucky. I really don’t want the surgery in May because both my cousin, grandmother and dad all died in may plus it’s my birthday so. No jinxs. All righty then that’s about it for me. Sadly I haven’t slept today. To much on my mind , hahahah with surgery and dealing with emotions of being single still and fearful of dying alone or in one of those horrible homes , just so y’all know. I will NOT go that way. Okay?. Sad it’ll be me who decides how all this ends before I let PD put me in a home. It’s been nothing but I literal walking hell since I’ve had PD . I’ve met a number of angels though not a single one of them is beside me now. And I would never out anymore burden on my momma than I already have and since the family I made bailed …. Ya, what other choice would a warrior have . But let’s not worry about all that shit now. I’ve got to continue to gain strength for the surgery. My meds switch is being effective in some ways not in others. My clarity of judgement is a little better though my agnosia makes it impossible for me to situational perceive things correctly all the time. My body and other bits are far worse than they have been in well ten years. On that note it’s 228am pst I’ve been up for a day already and I’ve got a huge medication off appointment on Thursday… Things are sleeping up very very quickly. Before you or I know it I’ll be a robot…. That about all I have to say. Be well , take care, I love you, I miss you… And a little reminder to all those whom I mentioned in a that ranty Facebook post. Im writing a book and well, you’ll be in it.