DBS? Courage. A second chance to live

DBS is on my mind. I am slowly inching towards the deep brain stimulation. Everyone I speak with has encouraging words.  I MAY BE SCARED. I MAY HAVE ANXIETY. It's freakin' brain surgery. Who wouldn't have anxiety or be afraid? I have anxiety getting my teeth cleaned in the dentist office.

This is MY CHANCE TO LIVE AGAIN. I want to explore places and experience things I have been thinking about since Parkinson's put my life on hold.  I know DBS is not a cure and does not slow down progression. I'm still hoping for a cure, and reversal of damage, a repair of dopamine receptors and transmitters and I don't want to sit in a pool of my own urine waiting for my demise.  This sure seems like a lifeline and I'm ready to live, again.

It's funny the things that go on in the brain, recently I met up with a red tail hawk and had a sudden boost in courage. Is the hawk my spirit animal? Maybe. Did I have the courage all along and was my brain filled with so much noise I couldn't see the path,  not to mention the goal. Maybe.

For now I'll give the hawk credit for showing me the path and giving me courage to follow the path to my chance to live again. I also want to thank those of you who i met in support groups for sharing your own experiences.

More of my thoughts and apprehension on DBS as I meet with doctors and counselors. 

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DBS? Scared out of my mind

 I'm almost 10 years since my diagnosis with Parkinson's Disease.  At first Sinemet was the magic fix. One tablet 25/100 brought me back. Then mixing, matching, optimizing meds for the next 10+ years, like playing a carnival game. Where's the neuron. Transmitter or Receptor? Guess the med, win a prize.

Failed doses and off times are my norm. My "on times" are rare and brief. Stiffness, slowness, freezing all the time. Quality of life sucks. This illness and I destroyed my spouse, which hurts me most.

DBS. Deep Brain Stimulation.   Is this the final solution? Freakin' drill holes in my skull and poke some leads into my brain. Twice. Then a third surgery for batteries. Flip switch and, who knows. Surgeries every few years for new batteries. Praying to die instead of this modern twist on a medieval technique. Sure it's been fine tuned with super high resolution cameras and imaging but it's still probing around and see how the patient responds. It's brain surgery, folks.  Does DBS even help stiffness and slowness or just the shaking?  And what about personality changes.  Before PD ravaged me, I had a pretty good personality, liked by many (I would like to think) and very quick with humor.  I'm taking a ton of pills now, will that change? Less or more?  What is long term expectations with DBS. It doesn't stop PD progression, will it slow down?  

I'm the first to admit that I live in a fantasy world. Where is the nano virus that destroys what is killing my dopamine transmitters and receptors, fix everyone affected by PD. Where are the stem cells that regrow damaged and destroyed areas of the brain, and gut. Something. We have such high tech, the Parkinson's meds all revolved around Sinemet in one form or another.  

It's almost high noon, time for a radical breakthrough solution or face the reaper. I'm just about out of time. Science I believe in you! Don't disappoint. You must think outside the box. 

So scared. Wolves are circling.  Save me. Not much time left. 

I NEED A MIRACLE! Save my loving spouse. Please.

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Robin Williams' Son Zak Says His Dad Was 'Very Uncomfortable' and 'Frustrated' Due to Misdiagnosis

Robin Williams' son Zak got candid about the effect of his father's misdiagnosis and how he dealt with the trauma after the actor's death in 2014.

Zak, a mental health advocate, spoke with host Max Lugavere on his podcast The Genius Life to discuss Williams' "frustration" and discomfort before his death. The episode was released on what would have been Robin Williams' 70th birthday.  

Zak talks of the frustrations faced by his father, Robin Williams, as he struggled to cope with the symptoms of Lewy body dementia after being misdiagnosed with Parkinson's disease—and a completely different set of expectations and treatments.

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PD Fitness Friday | Parkinson's Foundation

Fitness series presented by the Parkinson's Foundation

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Afraid to tell people I have PD

 I'm hesitant to share that I have PD with people.  Most or all of my relatives know, a few neighbors and a few friends.  

The worst reaction is when friends drop me from their lives like I'm dead or contagious.  Others range from tears, hugs, articles (so many articles), to dumb shit like, "oh okay" as if I said I just stubbed my toe.  Best response was someone I hardly know, "So sorry, if you need a hand with anything, do not hesitate to call. I mean it."

I slowed down telling friends, can't handle the dumb or disappointing responses. My advice is try not to personalize dumb reactions if you share your diagnosis. It is hard but so is this illness. I want to hang out, even if I have to sit down, don't speak much and struggle with things. 

i miss the change of venue, walks, sunshine. I miss seeing friends, feeling wanted / included, a feeling of value for my smart ideas. 

Before I told people, even before my diagnosis maybe, I thought it was just stress or something like that. I made a GoFundMe page with the fantasy a billionaire would hear my pleas and help.  I still could us a few hundred thousand, send those wealthy friends to my gofundme. 

Okay I am not waiting for a box of gold bars to show up, and while 3 or 4 hundred thousand would cut down stress, it wouldn't cure me. I need to get motivated and shake off the self pity for compassion and understanding. Start walking again, find a slow beginner yoga group, eating better, etc.

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PD Medication - Optimizing Gone Wild

 The battle of medications, dosages, frequencies versus PD is an ongoing battle.  My meds and off times went in a spiral in March 2021 right about the time I got the vaccine for COVID-19 (see PD and COVID-19 Vaccine). A coincidence? Maybe. Whatever the cause, I've been like a newborn horse trying to stand and walk, on a sheet of ice.  

My team of neurologists and their staff have been helping. Changing meds, doses and yesterday (June 30th) was the first day I didn't go to a 4 or 5, the red zone. 

I rank the PD symptoms on a scale 1=good to 5=bad,bad,bad and symptoms were not over a 3 for two days. A couple more days and I'd say we made progress! Whatever spun my meds, vaccine or random, I hope they're getting back in control now.

Anybody else have medication struggles after getting a vaccine?

UPDATE:  There were 2 good days but back to mostly off times. Meds not optimized yet. 

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Psych issues years before Movement Disorder issues?

My PD history is unlike any I've read. I started having psych issues: Anger/rage, paranoia, obsessing. My family and close friends thought I was crazy. This started about 8 years before an official diagnosis of Young Onset Parkinson's Disease (YOPD because diagnosed under 50 years old).  

The day I started Sinemet in May 2012, I felt euphoric. The Sinemet helped all non-motor issues (listed above), as well as gait, choking, arm swing, facial masking, etc.

I have one big favor to ask here, PLEASE tell me I am not the only person where weird psych behavior preceded the motor symptoms (like gait, arm swing, etc), and by so much time.   THANK YOU.

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A grant for therapeutic healing with music?

I hope this sincere idea helps the disabled get out of their confinements to enjoy some music and social time around others.

I had an idea. Instead of someone living on social security disability checks awkwardly asking venues and musicians for guest list to shows and festivals, which impacts the business income, how about a government grant (or a biz/individual philanthropic) for people with brain illness where live music has a documented huge positive impact on their brain health.  

Music is scientifically shown to stimulate neuron activity. And fund the cost of the admission for them? At least one of my friends know about grants, can you lend a hand?

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