Thriving With Parkinson's Disease Through Hope, Optimism, and Perseverance
When John Alexander was diagnosed with a degenerative disease, he decided to take control of his health and mindset by finding ways to motivate himself and others with Parkinson's.
John became a distance cyclist and triathlete after discovering that staying active is one of the best ways to combat the effects of the disease. John maintains his upbeat attitude by seeking inspiration from the Parkinson's community.
He stays involved in helping transform other peoples' lives as a dedicated ambassador for numerous organizations and a sought-after inspirational speaker.
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World Parkinson's Day
Parkinson's is a defined as a movement disorder but the very long list of issues goes way beyond movement and shaking.
here are a few more that people added: Low voice or whisper, tiny handwriting, constipation.
April is Parkinson's Disease Awareness Month
Parkinson's Awareness Month is observed in April. Parkinson's Awareness Month is an opportunity to increase awareness about the ailment and its symptoms, as well as to support victims.
Meds Adjusted and actually feeling a bit better, for now
A few meds changed or added seem to be helping me.
Never follow my medical scribblings, consult your doctor before changing or stopping any medications.
Changed first dosage of the day of carbidopa/levodopa (C/L), here's what I'm doing... instead of one and a half pills at 9am, I ramp up with 1/2 a pill at 8:45am and half at 9:15. My analogy of taking 1 1/2 pills at once is a tsunami pulls the tide out (stiffness and freezing) then the wave hits me (a brief on time) before receding back into the sea (wearing off). Splitting the dose is more subtle of a wake up for my brain-like the tides.
Yes my meds are still wearing off and I still get dose failures but somehow they seem a little less intense.
Last night I met up with one of my friends from Miami for dinner, then to go hear music! Dose failure and I'm sure it was totally due to taking C/L during my protein filled meal (hard to time this right). So nobody got to see my signature bad dancing at the show–but my next dosage worked and after the show, besides feeling exhausted, I felt good! Keeping my fingers X'ed.
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.
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.
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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