[rob]

I have been looking for commonalities, patterns and connections. So far, I have to say that toxic pollutants  that are metallic in composition play a role, There are many threads that address the autoimmune network, and occupations and workplace safety plays a role.  Does anybody know: Is there a giant box stashed away in a far distant land, with class action lawsuit records? Whether resolved or not, there is bound to be volumes of information available there.

 

[rob]

I see that some people have TWO sets of symptoms. Is it possible to have two illnesses?

I was diagnosed in 2005 with Parkinsons. I had a slight vibration in the right arm, had trouble with writing and typing. Everything else seemed mostly okay. Most of the clinical tests supported the diagnosis, and I have accepted it as my issue.

But….  about 3 years ago, a new thing started to occur: In order of sequence it starts with a bizarre odour mostly, (but not always). That seems to be the trigger. Within seconds, I get a ringing in my ear, short shallow breaths, heart pulpitations and pain, watery eyes, stuffy nose, and then a stiff neck and an instant loss of all muscle strength, and I mean ALL. Even just sitting in a chair presents challenges with falling forward, and the rib cage pushes on the lungs, bladder drains. To finish, a feeling of being electricuted. I can literally see skin on the back of my hands vibrate, like there are 1,000 micro pins pushing from the inside.  TOTAL TIME: 4 to 6 minutes from start to finish. That usually lingers for about an hour to 90 minutes, then I can feel it going away, which takes about 30 minutes.

At that point, I can stand up and walk away, as if nothing was  wrong. I have had medical professionals say *What?? That’s not Parkinson’s”. While this occurs, I lose all strength but movement, gait and speech are  all fine. I am able to do all clinical tasks with only muscle strength being the issue.

What I find weird is the way this thing just washes on and off with such vigor. One minute, I am fine. Then I am not. Then I get up and walk away. It is creating skeptics that are questioning my integrity, and I can not say I blame them. I have had people say that it is all in my head, if so, how can I get it out of my head?

[rob]

There are so many these days, but my fave has to remain Michael J Fox. I admire his courage for remaining in the limelight, so that the cause remains there also. We all owe him a debt of gratitude for the work he has done for all of us.

I have been hoping that one day, our paths may cross. We are of the same demographic, and share an interest in many of life’s distractions.

I have always said that “Other than the fact that MJF is successful, wealthy, talented, well regarded, and handsome, we are practically the same guy”.

[rob]

I believe that the issue with toner, is it’s state of matter. It appears to be a messy liquid, but in fact it it more resembles ultra fine dust. It hangs in the air for extended periods of time and creates a host of respiratory illnesses.  Once in the lungs, it then works its way through various organs,  the brain, and the central nervous system. I know this dust does contain metals, but I am not sure which. There are also plastic and silica particles that are associated with fibreglass production. (polystyrene etc).

As I look back at this thread, I am stuck by the magnitude of the connection between toxins and illness. When I attended university in the early 1980s, we predicted a huge increase in toxin related illness early in the next century. Like global warming, it’s here.

I am not a lawyer, nor am I motivated by financial gain (except for others), but this leaves me wondering: Should we as parents and grandparents be speaking out? If nothing else, I would like to see the makers of toxic products be accountable for cleanup, containment, education, and strategies for future use or elimination.

I am not sure how, where or if to start. The first challenge, is the fact that members of this forum come from places all over the globe. Toxins know no borders, but laws and legislation are quite nation specific.

Any thoughts?

[rob]

I must admit, I have given up on this one. On a good night, I probably sleep about 5 or 6 hours.  More commonly, two sets of 2 or 3 hours seems to be the pattern. Some things I have tried

– meds:  I didn’t like how I felt when awake, so I discontinued.

– daily exercise: as much as possible

– diet: avoid caffine and sugar

– avoid media late in the evening: news, dramas, mysteries

– The great catch 22: avoid getting stressed about insomnia. It causes….  insomnia. So, I have set up a comfortable recliner with a soft light, maybe a battery candle, a fleece blanket, a cup of warm milk and ovaltine (I have no idea why, other than its comfort value), my dog, and a continuous feed of semi-interesting documentaries and music concerts on youtube. I often enjoy 2 or 3 hours of that, but oddly, I feel pretty good during the day — better than when I was taking meds. I often need a nap after lunch, but that only lasts about 30 minutes or so. It seems counter intuitive to just give up, but it is all about …     c a l m .

[rob]

I recall taking quizz in a magazine about introverts. One of the questions asked “Do you like your dog better than most people?” After a moment of laughter, I pawsed (sp?) and answered YES, I do. Having a dog is what gets me up in the morning, a) because of the joy she brings, and b) because of her aging canine bladder.

Over the past 30 years, we have had Labs and Goldens, all rescues from violent households, and each one of them taught me how to be a better person. A few years ago, my father fell ill and had to move into a facility that did not accommodate his companion. “Scottish terriers are not my thing” I told him, but the thought of putting her down …. Its a good thing she is cute because 10 minutes later she was in the car and headed north to cottage country. That little being has never been further than 2 ft from my two feet. I would be devastated if anything ever happened to her.

I often think that seniors would make great companions for dogs, because they are home,  experienced at care giving, and could benefit from the perks that most dogs will offer. Ironically, it is because of their sense of responsibility that they decline the idea of it in the first place.

I have been thinking about approaching the Humane Society, and suggesting a plan for a 2 or 3 senior co-parenting plan.     “Dog-Share” if you will. Covit 19 has intensified an existing problem with lonliness. Pets are most certainly the answer.

[rob]

Greetings All,

I have a few seemingly random points that I would like to contribute, if I may:

– Of all of the people I have met or corresponded with, who would place themselves in the Young Onset group, None were aware of any relatives who had PD.

– My first full-time job involved spraying herbicides, painting, welding etc. Each day at 4:30, I had to take a break before driving my car home, because I felt…  well… exactly as I do this very minute — except back then, the feeling eventually went away.

– I have heard speculation that PD may be a blending of 2 other diseases. I believe that to be an item worth consideration, because I have 2 groups of symptoms that are each distinctly unique. There is a very slight margin of overlap but more often than not, they present quite differently.

– In my opinion, the answer lies in the realm of autoimmune disorders, specifically how the immune system interacts with our toxic manufactured planet, and how it adapts to bio-regional micro-cultures. This is a growing field of study because with just one fill-in-the-blank, we can explain so many unanswered questions.  Everything we know so far about unseen villans, seems to fall into place when we consider their environmental context.

– On that note, expect a flood of class action suites in the 2020s and beyond.

[rob]

The greatest challenge with all of this, is finding the relationship between cause and effect. Some of the things we do to ourselves may not reveal consequences for decades. As armchair scientists, we can speculate what possibilities (or combinations of) might be at work.

When I worked for the park spraying gallons of chemicals, I booked off work at 4:30, then drove to a quiet place in the park until I felt well enough to drive home in my car. The symptoms I felt daily were identical to what I feel today, except in 1981 and 1982 the wore off in an hour or so. Now they are 24/7.

In 1992, I took a position as a construction technology teacher in our local high school. For years after starting, I heard students talk about how much they liked my predessesor, but it was a shame he only lasted for 2 or 3 years. In 2005, when I was diagnosed, I finally asked for the details of his early departure, and much to my surprise…

Working in the trades involve exposure to chemicals, excessive noise, vibration, electromagnetic fields, metals, dust from stone and wood and on and on…  I think we can all agree there are  serious health risks here, but pinpointing the exact relationship is a needle in a haystack.

[rob]

What i have found is that the pump is relatively low tech, which has its pros and cons:

Pros

– easy to operate, intuative, robust, sturdy, easy to change batteries. Has no connection to iphone

Cons

– heavy to carry all day, small hose kinks right at port of entry, often without tripping alarm. It appears that a small piece of hose is fused onto the original hose, in order to avoid kinking, but in  fact, makes it worse.

From what I can tell, the most common issue is with carrying it. I don’t wear anything close to my giant hinge (hip). This causes discomfort with sitting, driving the car, using the rest room, dressing etc. For me. I have discovered those cargo pants that have roomy pockets.Down low is best to keep the center of gravity down low.

As far as the kink goes, I have been placing a large plastic nut (well OK… Its a toilet seat nut, but alt least I bought a new one!) at the base of the unit and taping it in place. It works very well.

Rob

[rob]

Hello Firefighters,

I am glad I stumbled across this, because it is not something that I have given a lot of thought to. I am not a firefighter, but I actually have 2 connections to this situation:

– I completed most of my degree in Environmental Studies, where we discussed at length, the relationship between toxic chemicals and neurological disorders. I can only imagine what may happen when you burn chemicals that are already toxic in their normal state.

– I was employed in the park management field, where I sprayed Gramoxone and Killex and others, with a 100 gallon tractor attachment. I also used a lot of metal based marine paints, which were ground off and re-applied annually. This was all completed well before we became safety-aware. Little or no protective gear was utilized.

[rob]

I should add that the benefits far out weight any discomfort you might have. Today was a a sunny, dry, near-perfect day. As I type this at 12:16 AM, I am still awaiting a freeze up. heavy, but worth its weight in gold.

[rob]

Maybe misunderstood. Maybe fear on everyone’s side? I know that I am fearful of

– who I will become

– being institutionalized

– being trapped in a broken body

– not able to advocate

– being judged

– My wife of 30 years looks at me with seething hatred in her eyes, and has mastered the art of multiple put-downs.

I am not sure whats worse: losing someone you love or losing someone’s love. A major change is imminent. Sometimes, its not about love, but rather who you are when they’re around. I no longer even like myself in her presence.

– being lonely,

I am a sensitive. caring person wlth so much love and kindness to give, but  I would never turn back to the social scene. My family lives in Toronto, but they have busy lives.

I just don’t know where to go? How to start over. I am not excited about facing this on my own, but I know that I already am, and have been since the start.

[rob]

Other than offering a patients perspective, I hesitate to comment with confidence and certainty. But…. With that said, I too had a freezing gait. I still hesitate sometimes on the first step, and on occasions I get tired and slow on my feet. But overall, gait and other functions have improved considerably.

The last few days, we have had some good weather, I felt my mind was a little clearer and I kept busy all day doing physical yard work.   I pretty much enjoyed a completely symptom free few days (other than overnight, when the pump gets disconnected). I believe that the reason for that “normal” time, is the pump, combined with other daily-life stuff that affect most people.

The 2 features I like the most, is a) On occasion, it is easy to forget you have Parkinsons. b) Far fewer roller coaster rides. Once the doctor fine-tunes, the machine looks after your day.

Please feel free to ask any further questions.

Rob

 

 

 

[rob]

The “why?” in this seems to be the big question. My adult children are distant, reserved, calculated. They always used to call on me for advice, Now I am made to feel obsolete. 0 = a placeholder, It has no value

My childhood pals remained close over the years, but now just polite gestures.

Seriously,,, I can clear a room in 20 seconds flat, just by walking in.

I have seen close to a dozen mental health professionals, and they were always helpful, but we seemed to be unsynchronized.

Many would say “I can’t imagine what you are going through” or “Try to look at the positive side”. Being positive s a huge part in all of this, and I try to live by it on a day-to-day basis, but once in a while one has to find their demons and deal with them before they deal with you.

We are twice challenged. Once with the illness, and again with the mountain of meds. It is important to keep our minds healthy and on the straight track, but for those odd times when things seem a little darker, we need to know that we NEVER stand alone. There may be larger presence, or there may be the best friend you never knew you had. There will be some one/thing that has your back.

[rob]

I don’t see myself as a religious person, but really wish that I was. Two of the greatest songs in music history are “I still haven’t found what I am looking for” by U2 and “the Rising” by Bruce Springsteen. I can not play either without shedding a tear.

I consider myself a spiritual person though. Sometimes we need to climb a mountain, or walk a shoreline just to feel alive again.

I  created my own phrase: “seek to understand, not to conquer”. We seem to be obsessed with finding opposition. It would be much easier just to listen. Religion and I have yet to chance upon mutual discovery, but I can feel it in my heart that our paths will meet soon. When it does, I will be all ears.

“Spirits above and behind me
Faces gone black, eyes burnin’ bright
May their precious blood forever bind me
Lord as I stand before your fiery light”

The Rising, by Bruce Springsteen

[rob]

Yes,

I visit a movement disorder clinic in Toronto. My most recent visit occurred in December, where I was given an appointment for a new Duodopa tube for mid February. I cancelled that one due to illness and rescheduled for late March. That was a bad idea.

I was able to visit the psychiatrist by telephone, which worked very well.

[rob]

Hello Ally,

I am the new guy. I gained access earlier this morning, and with this cool grey damp day, I feel refreshed not to indulge in the Youtube vortex. I have the good fortune of living in cottage country year round, so I can go and do my thing in complete isolation. The other day, I took a walk to collect my car at the repair shop, and I encountered a deer walking the other way. I was quite sure this graceful creature would take a quick exit into the woods, but she remained on coarse.  I took a look around to confirm solitude, and offered a quiet “good morning”, to which she responded… well, nothing, but I think I got a nod. Its hard to tell from 6 feet away.  Maybe another few months of isolation might produce a talking deer.

The whole episode has created a bitter/sweet situation. On the one hand, I am grateful for the smallness of the global community as well as the lack of structured time. On the other hand, the media has done a great job of reminding us that there are many who work super hard on the frontline, helping those with less luck than what I have.

When all of this started, we had 2 feet of snow on the ground. In a few weeks, we have traded all of that for black flies. I heard that hair stylists/barbers are back soon. I will have to find someone else to blame for my Keith Richard’s look. I DO own a hairbrush, but I wouldn’t know where to begin looking for it.

Wishing all a good sunny summer!!

Rob