[Dan]

I used to jam with a few local musicians, surf, C&W, blues. Lead &  rhythm guitar. had to give it all up. no motor control, my voice sounds like a cat caught in a lawnmower.

[Dan]

If it is possible to have  bradykenisia and dyskenisia at the same time, I have it….one fights with the other and my two dogs maul the winner.  my newest symptom is severe throat constriction. brings on headache. can’t speak, swallow. oh well. for every symptom, there is a equally miserable person that has that and worse. And I’m have freedom. It 16 deg f outside, think I’ll bring in more wood….

 

[Dan]

Tina – let er buck. good post. brightens my dimly lighted pathway just a bit. God is my rock. My wife is my life. Together the three of us will go find the rest of the story….

 

[Dan]

Can’t speak for the other Dan, but in my case it is literally hour by hour, day by day. yesterday was excellent. today was so miserable, I wanted to run away from home. throat constricted, unable to walk, headache, neck pain. Real challenge to function.

[Dan]

Muscle rigidity, motor function. Many tasks are becoming just beyond my ability to do. No more climbing on the roof, guitar is difficult, hunting is out. Mechanical repairs, additions to trucks and 4×4 vehicles result in questions like “What in the world?”

[Dan]

2009 – increasing neuropathy left leg, rigid thumb/left hand, oily skin and reduced blinking. Somewhat simultaneously. Pain soon followed .

[Dan]

Agent Orange.

[Dan]

<p class=”p1″><span class=”s1″>Truck Maintenance</span></p>
<p class=”p1″><span class=”s2″>So I crawled under the truck the other day to adjust some wires. The 40 million candle-power utility lights had become shorted out. This operation is decidedly a bit more challenging with PD. Motorcontrol is an obscure slang word for shirt sleeve stuck on sharp protrusion adjacent to several surgical steel drive-line knuckle scalpels . These are invariably mounted on a dog calling device, that when drummed on repeatedly with the part of the forehead that has the least amount of hair and least covered by my ’Save the Walrus Mating Rock’ baseball cap, produces an irresistible, high pitched squeal, that, in turn summoned my two enthusiastic rabbit consuming, flatulent, hair ball belching best friends. Man’s best friend. (s). Mechanical advice was not necessarily required at the time, but my forehead needed a viscous fluid applied liberally, and not just the part that was used to summon said canids. Quickly realizing that my mouth was also in line to receive a vigorous cleansing, and assuming it had to do with my string of Up land bird calls, I placed my face in a opening in the truck body, such that only my ears and chin were exposed. This action exacerbated the excitement level of the two pungently scented canids. Whereupon they both simultaneously decided to inspect my ear drums for wax with their tongues. My ecstatic retorts only drove them to change their attention to the underside up my chin, clumped soil that had fallen from the vehicle now was removed, smeared, applied as a durable film around neck, adams apple area, ear protuberances, ect. I noticed that my voice, reduced to a gargling sound, improved in volume and timbre, once a 1/4 pound clod was expectorated with a mighty expletive “ holy shirt”. “Nice doggies” ! I managed to mutter, “sons of biscuits are fishing bait if I ever expel my bod from this man-eating truck”. Wag wag, wag. By this time, the memory muscles in my buttocks and lower back had retained the exact 3 dimensional shape of every tock, pebble and sticker weed for future referral. Flailing about like a penguin in a cactus patch, I was able to extricate one hand, arm still attached, and persuade canid mechanical engineers to depart the immediate local. A handy 3/4 open end wrench clinched the deal. In chorus, canids declaring with an ear curdling rabbit call, apologized for their unsolicited assistance and left. I gracefully turned this way and that, and determined that if I employed a version of the ‘Texas – Tennessee trot-crawl’, I might get back to a reasonably ambulatory position OUT FROM UNDER THE DAMN TRUCK. Hungry, freshly cleaned from neck to apex, and coveting my new found collection of New Mexico’s puncture vine seeds, commonly named goat—heads, on possibly permanent display from elbow to wrist, I ventured forth to consume sustenance, rest, and expose a lachrymose attitude that is not often revealed. The 40 million candle power utility lights can wait for my first, second, or third born’s overview and eventual re-connect. If they get repaired, I will introduce Bloo and Tobee to the light. Wonder if it will shine through their hides if stretched tightly over the frame on the headache rack cum hide stretcher. Should dry nicely too.</span></p>

[Dan]

Truck Maintenance

So I crawled under the truck the other day to adjust some wires. The 40 million candle-power utility lights had become shorted out. This operation is decidedly a bit more challenging with PD. Motorcontrol is an obscure slang word for shirt sleeve stuck on sharp protrusion adjacent to several surgical steel drive-line knuckle scalpels . These are invariably mounted on a dog calling device, that when drummed on repeatedly with the part of the forehead that has the least amount of hair and least covered by my ’Save the Walrus Mating Rock’ baseball cap, produces an irresistible, high pitched squeal, that, in turn summoned my two enthusiastic rabbit consuming, flatulent, hair ball belching best friends. Man’s best friend. (s). Mechanical advice was not necessarily required at the time, but my forehead needed a viscous fluid applied liberally, and not just the part that was used to summon said canids. Quickly realizing that my mouth was also in line to receive a vigorous cleansing, and assuming it had to do with my string of Up land bird calls, I placed my face in a opening in the truck body, such that only my ears and chin were exposed. This action exacerbated the excitement level of the two pungently scented canids. Whereupon they both simultaneously decided to inspect my ear drums for wax with their tongues. My ecstatic retorts only drove them to change their attention to the underside up my chin, clumped soil that had fallen from the vehicle now was removed, smeared, applied as a durable film around neck, adams apple area, ear protuberances, ect. I noticed that my voice, reduced to a gargling sound, improved in volume and timbre, once a 1/4 pound clod was expectorated with a mighty expletive “ holy shirt”. “Nice doggies” ! I managed to mutter, “sons of biscuits are fishing bait if I ever expel my bod from this man-eating truck”. Wag wag, wag. By this time, the memory muscles in my buttocks and lower back had retained the exact 3 dimensional shape of every tock, pebble and sticker weed for future referral. Flailing about like a penguin in a cactus patch, I was able to extricate one hand, arm still attached, and persuade canid mechanical engineers to depart the immediate local. A handy 3/4 open end wrench clinched the deal. In chorus, canids declaring with an ear curdling rabbit call, apologized for their unsolicited assistance and left. I gracefully turned this way and that, and determined that if I employed a version of the ‘Texas – Tennessee trot-crawl’, I might get back to a reasonably ambulatory position OUT FROM UNDER THE DAMN TRUCK. Hungry, freshly cleaned from neck to apex, and coveting my new found collection of New Mexico’s puncture vine seeds, commonly named goat—heads, on possibly permanent display from elbow to wrist, I ventured forth to consume sustenance, rest, and expose a lachrymose attitude that is not often revealed. The 40 million candle power utility lights can wait for my first, second, or third born’s overview and eventual re-connect. If they get repaired, I will introduce Bloo and Tobee to the light. Wonder if it will shine through their hides if stretched tightly over the frame on the headache rack cum hide stretcher. Should dry nicely too.

[Dan]

I consume 2 table spoons Metamucil in 8 oz water each morning. Occasional banana.  Double the orange flavored Metamucil if needed, 1x morning, 1x evening.

~ 90% effective so far. –

[Dan]

Today, my Dr. told me about a potential under the tongue preparation that may soon be available? There is a lot of activity in the PD meds arena….

[Dan]

Mary Beth,

I have tried about 5 different CBD oils. From 150 mg to 1000… what ever that means. only found 1 that worked within minutes. relieved a bad foot cramping condition. Very painful when they occur, which is all too frequently. But the effect only happened twice, never repeated.

Several problems are at hand. (my take).

1. Everybody makes or sells CBD oil. Cannabinoids w/o THC are all the rage.

2. This is problematic – in that little oversight or regulation is available to keep the sellers honest. Which of these are pure, which are dangerous or contain contaminants? How do we find out?

3. Then the sheer number is unmanageable with out a very time-consuming expensive endeavor.

cbd oil, aka “snake oil” ( in some preparations) is definitely an uncertain substance in many cases, and potentially mixtures of lamp oil, mineral oils, ect ad infinitum. I occasionally search for reputable dealers that honestly display ingredients. I am saving this chase for a point where I have the energy and wherewithal to pursue options. In the meantime I welcome suggestions for any confirmable brands and preparations    that have worked.

All the best,

Dan

 

 

[Dan]

I never tried the stuff until much later – early 30s. Decided it was not for me. Made my watch stop resulting in 1 hour soliloquies lasting  a few seconds.

[Dan]

“Left-handed chocolate” goes back to an old term for marijuana, “left-handed tobacco” or “ left-handed cigarettes”. The reference suggests things ‘left-handed’ are not a norm, but an exception. I’m right-handed, but most of my children and many grand children are left-handed. To them, I am out of the norm. In any event, THC as a component has not been helpful to my version of PD. Except to say, at the time, I did not care one way or the other for a brief period. Was thinking about starting a new thread, ‘Did I tell you what happened the  other day?’ or ‘ ‘places PD has taken me that I didn’t want to be’….

[Dan]

maybe kinder-garden paper paste…..

[Dan]

Tried some of the cannabis in left handed chocolate… made my wrist watch stop, with no or little results toward the PD.  Did several CBD oils, worked twice, then, not unlike our weather, became unresponsive and unpredictable, then zip – no result. Today was terrible. Just barely able to move. 10th capsule 48.75ld/195cd time release. Over 13 1/2 hours. Time release. Must be in nanometers per fortnight squared.

 

[Dan]

Laura, wow. Your dragon is much bigger than mine. I have to say, It appears that there is certainly more to be tried, than what I have done up to now. I haven’t scratched the surface compared to what you have been through. Trying to schedule ld/cd capsules and keeping a log, watching food intake is where I live now.

585 / 2340 mg/d  ld/cd = 12 cap / d

[Dan]

I concur with Lou… Protein in the digestive tract consumes, negates Sinemet  and similar.

[Dan]

For me, usually 1 to 1 1/2 hours depending on what I have eaten. I am experimenting with taking the Ld/Cd capsules with carbonated quinine water, coffee, and juice. A faster result is had by emptying the capsule onto a spoonful of applesauce. I keep a daily logbook. For me this is imperative. Have CRS also. ( can’t remember stuff).  A daily log is necessary to document what I have tried and when.

 

[Dan]

Still searching. From 2009 until ~ 2016 it was at least ok to tolerable. Then things started going south. Tried many forms / combos of Ld/Cd…. + agonists, extenders, supplements, folklore concoctions, buzzard butts n snake lips, things in dropper applicators and so forth. Now on capsules that cost as much as government hammer-heads or diamond plated faucet washers. Still tweaking and seeking.

[Dan]

I voluntarily stopped driving. Conventional wisdom suggests that when everyone in the vehicle is afraid when a person drives, probably time to move that person to a seat with no controls.

 

 

[Dan]

I still have my license. But I do not drive any more. It is difficult. I have a spouse that can still drive. I am afraid to operate a vehicle on the public hi ways, streets, freeways, ect. PD effects are far too risky.  One of the burdens – plus living in a rural ( frontier) setting complicates the matter.

Just being somewhat ambulatory is challenge a-plenty.

 

[Dan]

Robert, thank you sir! Great to read personal accounts and approaches to PD symptom control.  I am 71, was diagnosed in 2009, likely had telltale signs a few years prior. As on time permits  I will reiterate my convoluted trial and rabbit – chase with meds.

[Dan]

I think James Harvey’s comment has merit. Applicable in the vigorous pursuit of knowledge and networking. Not so beneficial when an “off time” condition renders the connection between the brain and body goes on strike, leaving digits with out guidance, ambulatory skills at a standstill, mandibular malfunctions interfering with clear speech.