[John Citron]

Happy New Year, Mary Beth!

Here’s another book for you.

Parkinsons Creative Collective

The NeuroWriters’ Guide to the Peripatetic Pursuit of Parkinson Disease, an anthology of experiences of life with PD.

I was part of the book writing group assisting with technical things and wrote an article and contributed some pictures.

parkinsonscreativecollective.org

Parkinsons Creative Collective

Insert your SEO description here

[John Citron]

I did some more thinking about this and did some research on the ‘net and found something interesting.

For those of us that worked in the electronics aspect of the high-tech industry, we were exposed to a circuit board cleaner called De-Sol. De-Sol contained Trichloroethylene. (Trichloro). This chemical solvent is used to clean the solder paste and flux off of circuit boards after the boards have been put through the wave-solder machine and also after the touch-up process and repair. Trichloro is a known cause of Parkinson Disease.

As a technician and also as a touch-up solderer and later on as a hardware technician I was exposed to this stuff on a daily basis. The boards would go through the wave-solder machine to solder the components on the board and then went into a deep tank of De-Sol to remove the flux and solder paste if any left on the boards.

In touch-up, we had to apply additional wires or solder on components that couldn’t go through the process and then wash off the remaining flux caused by us soldering and remove extra leads, fix bent pins, or other things that exposed us to more De-Sol. As a technician, I would desolder and solder components on the circuit boards as the parts were replaced due to being faulty and the boards had to be cleaned. Sometimes, field repairs would come in filthy and the boards, and keyboard circuit boards were dipped in the stuff for degreasing and cleaning.

This wasn’t for a few months. These jobs lasted for more than a decade and I was exposed to this for the whole time in the two places where I worked. In the early 1990s, I left that aspect of the high-tech industry and worked in operations and information systems which is as far removed from exposure to solvents and chemicals. Sadly, by this time it was too late and the damage was done.

As I said in one of my posts, my late neighbor also worked in the same industry. He too passed away due to complications from PD, and so did a number of other people I worked with in the industry.

Why only we got it and not everyone? That’s an answer I need to find out.

[John Citron]

I’ve played piano since I was about 5 or 6 years old and had my first lessons when I was 7 years old and I continued to study seriously for decades. In 2009, during the Great Recession, I became a music major for a year at a local university. I was diagnosed with PD and given the official badge in 2012 followed by 2014 when the US Gov’t recognized that and gave me my disability payments after I could no longer work.

During this period as symptoms increased, I have found that there are good days and bad days. On the bad days, my fingers don’t talk to the brain and want to do their own thing which makes playing frustrating. Playing a simple passage becomes a minefield of mistakes as I miss notes, or sometimes have hands play totally different things.

On the good days, it’s like I don’t have PD and I can accomplish what I want to do, albeit, a bit slower than I used to play. This is actually okay because playing slower allows me to focus on the beauty of the music which is lost when playing too fast, which is the thing these days. Pianists today feel they have to show off and treat music like a sporting event rather than something of beauty. The slower playing, meaning not crazy fast, gives us time to hear the music and savor it like tasting good food or enjoying the view from a train or car as we ride along.

Since I am an avid sight reader, I have a collection of books that I hardly use today because turning pages quickly becomes a really, really frustrating ordeal due to that annoying hesitation and inability to grab the page quickly and I have set myself up with a Dell All-in-One PC instead. This touch-screen computer, running Power Music Professional and a PDF reader, makes playing so much more enjoyable. After downloading and converting PDFs to PMP format, I can turn pages easily by touching the screen on the edges. Being a 24-inch display, it can display 2 full-sized pages of music and if I have to, I can zoom in to make details bigger if I have to.

The biggest thing is never, ever give up. The bad days come and the bad days go. If things don’t go well, take a break and try again later or another day.

[John Citron]

I have mixed feelings about Telehealth. While they are convenient, meaning I don’t need to drive to my appointments in bad weather and fight the awful traffic on the way home for one, and secondly being at home they allow me to keep an eye on my elderly father who has some age-related medical issues of his own, I feel there’s a gap in the medical care.

Being in the office with the doctor, the conversations are more interactive and flowing, and she or he can observe us and check for cogwheeling and other symptoms which are impossible to do so via Telehealth.

Recently, I had two appointments via Telehealth and my doctor said afterwards that she wants the upcoming appointment to be in her office at the clinic rather than via computer or phone, and I am looking forward to this appointment.

[John Citron]

My 88- year-old father, my brother and I came down with Covid-19 around Christmas time. We got it at our local ER after we brought my dad into the emergency due to dangerously high blood pressure and chest pains.

I started feeling lousy Christmas Day and isolated myself but unfortunately, it didn’t matter. I took the test and the results figuratively came back before I fully inserted the swab, and we all tested positive.

I was able to get the antiviral from my doctor which hastened the virus’ demise but even with the antiviral and the mild case it did affect my Parkinson Disease. I was off most of the time with my meds not doing a bit of good. The muscle rigidity was worse and so was the dystonia and stiffness. The tremor too became more prominent than it ever was with more times that I can’t control it especially when I’m tired.

Since then, I’ve noticed that my off times have increased more and I shuffle more than I did, and the fatigue is worse. It doesn’t help that I also have Sjögrens Syndrome due to an underlying autoimmune condition which adds insult to injury as well.

I noticed too that I’m not as sharp mentally. It takes me a lot longer to process information and my reactions to situations are not as quick. I’m afraid to drive and seek out rides and from appointments and the market.

[John Citron]

I wear Velcro-strapped shoes instead of laced ones. This makes putting my shoes on and off easy and it doesn’t require me to fumble with the laces.

I also use a DELL All-in-One PC to display my sheet music. Using Power Music Professional and  a PDF reader, Xodo I can load  up the music and easily turn the pages by touching the display or sliding my fingers on it to turn the pages instead of fumbling to grab the corners of a book and not turning the pages in time.

[John Citron]

I started around 2004, and was given a diagnosis in 2012 which became “official” in 2014 according to the US. Government when my disability became active.

Here’s my list.

— Tremors on my right side and internally when I’m off or when the meds don’t work well.
— Fatigue*.
— Vivid dreams
— Plumbing issues.

I can’t poop for squat most of the time. The bladder is more frequent and when I need to go, it’s a case of I NEED TO GO NOW!

— Weight loss.
— Loss of sense of smell, yet my sense of taste is okay.
What’s odd is I won’t smell something until I see it, but smell it fine afterwards. A good example is coffee brewing. I don’t smell the coffee in the morning until I walk into the kitchen then I smell it when I see the pot.

— Phantom smells.
I smell flowery perfume and cat box. We no longer have a cat at least for now and no one around to wear perfume unless my brother and dad are doing something secretly. The perfume includes one my mother used to wear and she’s been gone since 2018.

— Balance issues. I’m retro pulsive and can fall backwards easily.
— Shuffling gate
— Reduced arm swing.
— Low Blood Pressure.
— Dizzy, not BP-related.
— Uncontrollable sweating when it’s hot out.
— Excessive freezing and shivers when cold.
— Unable to regulate body temperature and live in sweaters, hoodies and short sleeve shirts. The hoodies and sweaters are on and off all day.
— Dystonia
— Muscle spasms
— Muscle stiffness
— Loss of fine motor control
This affects my piano playing and is very frustrating as I lose that fineness and fine control of pedals, finger voicing and arm weight control, and affects my ability to move quickly between sections of the keyboard.

— Odd loss of control one day but okay another.
My doctor isn’t sure about this but it’s worth mentioning, I think. I first noticed this when playing piano. There are times when the hands want to do their own thing. Fingers will stop moving or play something else as if they’re ignoring what they’re being told to do. If I stop playing for a few days, everything resets and I’m back to normal again. This has occurred when I type and I’m afraid it’ll affect my driving someday.

— Executive function issues.

I have had a few instances where I did stupid things like put a metal pot with eggs and water into the microwave because I was going to make hard boiled eggs. I caught myself doing that and was able to correct it.

I also forget or get confused now with such things as righty tighty, lefty loosey and ended up with water all over the place and the gas grill blowing gas.

— Forget words and have to come up with replacements. Some days are brain mush while others are fine.
— Poor concentration and focus. Look there’s a fly instead of listening to a conversation.

And probably a lot more that I forgot.

*Now, fatigue is also part of my other condition. I am one biomarker short of Lupus and have Sjögrens Syndrome and ended up with peeled eyeballs a few years ago. I’m now on Restatis for that and have other symptoms now of flare ups, dry mouth, and sore joints.

[John Citron]

I studied music since I was around 7 years old and continued my piano lessons up until 2017 including as a music major seeking a BA in piano performance. I never completed my degree program but continued with private lessons.

Today, I play nearly daily. I find it has definitely helped me keep up my motor skills with my hands and fingers. My neurologist noticed that when I do the finger-tap test. I can blaze along quite well with my right hand, although my left hand is definitely slower and quite a bit weaker. This slowness and weakness definitely affect my piano playing, but I learned to compensate for it by playing slower, which isn’t a bad thing anyway because I am able to play more musically and accurately. I could go into a whole rant about this, but I won’t!

Piano playing does have other benefits as well because this is not just moving the fingers and counting time. This is a whole-body exercise regimen because to play at a high level it requires balance, relaxation, focus, and foot movements for clear pedaling. While studying, I learned the Alexander Technique, or some of the exercises for whole body relaxation, and this really helps with the PD as well.

[John Citron]

I play and practice my piano almost daily and put in about an hour give a take a bit on either side.

Piano playing is also good because it’s a whole-body exercise program and is not just moving fingers as many people think. Keyboard playing requires relaxed muscles, postural balance, in the case of piano and organ, foot and leg movements when pedaling, just to name some of the things required in order to perform the tasks in an orderly and methodical fashion. There are actually about 30-plus little movements and tasks needed to play.

With that said, I find that the movement and concentration help my Parkinson Disease. On good days, when the moon, stars, and sun have aligned and I’ve played well, I feel exhilarated as if I’ve gone out for a long walk.

There was an interesting study done that shows that our body produces Dopamine when performing and listening to music, which makes sense.

I also used music to unfreeze. I start thinking of a piece of music I’m working on and walk to its rhythm. This helps me get my legs going and unstick.

[John Citron]

Massachusetts has loosened up its restrictions, but I still wear a mask. I have an autoimmune condition in addition to PD. After an issue with chronic dry eyes resulting in ulcerations and cornea surgery, I was diagnosed with Sjögrens Syndrome, and I’m one biomarker short from Lupus.

Having said that, I noticed overall besides keeping my sinuses moist and face warm during the cold weather, I had fewer colds or other things, so it’s a win-win for me.

During the COVID-19 restrictions, staying home didn’t bother me. While I like to go out for walks, I’m not one to socialize a lot anyway and I’m more of a loner and hermit. Staying home and doing my own thing was pretty normal.

[John Citron]

Clive,

You summed it up, we’re all different and this “disease” treats everyone differently which is why it’s always best to consult with our neurologists first. The seizures you have add in a different element into the pot here and you and your doctor are right for not wanting to put something else into the mix. There’s nothing wrong with exercise which is good anyway PD or not.

In my case, I was active and working full-time until 2012 and the gold-standard worked magic for me right off the bat. I was the IT guy who ran around an office doing end-user support and network administration, but even with all that exercise, I was stumbling around as I went from carpet to solid wood or granite floors in the various parts of the building, and nearly fell down a flight of stairs when I froze when I reached the topmost steps. It was this incident which put me on notice and then the other cognitive and organizational skills caught up with me. My work-life ended then rather suddenly.

Today as a “retiree”, I’m still active but not running around the house. During the warmer months, I’ll go out for walks by the river and do things around the house in addition to practicing piano daily. Piano playing is far more than just pushing keys with the fingers and hoping to achieve sound at the right time. Being professionally trained, I learned various muscle relaxation techniques and stretching exercises which I employ prior to practicing. These are part of the Alexander Technique and are similar to what we do when we attend PT sessions.

[John Citron]

Kirk is right here. My neurologist/MDS said the same thing when I asked because I was put on the gold standard immediately over a decade ago. The first dose was like magic that worked well right away and there’s been no looking back. I did have to adjust the amount I was taking due to taking some other medication with it, but it still works just the same today.

Be careful of some of the sites and information out there because there’s a lot of false or outdated information on many of these sites. By the time you read some of these, you’ll be calling your local funeral home and making arrangements because they’ll discuss the morbid nature of the condition and everything else! How would I know that!

As always, if you have any concerns consult with your neurologist.

[John Citron]

KISS.

I ensure I take my medications consistently at the same time every day. Keeping to the consistent time schedule ensures that I minimize my off times because it smooths out the space between doses.

In addition to the consistent timing, I also count out the pills per day and put them into a small pill-fob that I keep in my pocket. By counting out my daily dose, I don’t have to go for the pill bottles. In the past, I would grab the pill bottle and have one of those did I or did I not take my meds moments. By counting out exactly what I need to take each day, I know that I’ve taken them all when the fob is empty. One of those daily/weekly pill boxes would work as well for this, but for me the fob works because it means I don’t need to go looking for the box downstairs.

[John Citron]

I have learned the hard way to do things in moderation because I can’t do the things like I used to. I was one that used to work a 60-hour job plus go to school at night and study piano too, then come the weekends I was off and bike riding 50 miles or more during the nice weather. This doesn’t mean I still don’t do things; I just don’t do a lot of them like crazy and pace myself a lot.

I’ve been on disability since 2012 which meant tightening the belt with no vacations and traveling like I used to. I found that was getting to be too much anyway with the stress of the trips making me feel worse than when I started. Being on disability is also a bit stigmatizing because people look at me like I’m lazy. I don’t always show outward symptoms and the tremors are not always present. For the majority of the normal ones, we only have the tremors.

As we go through the phases and stages of Parkinson’s we learn to compensate and have to do things differently. I now have to think about my feet to avoid falling, count out loud sometimes when I walk to keep from freezing, and fatigue easily. Speaking of fatigue, which is different from being worn out or tired, going food shopping is exhausting. Going to the doctor one day means the next day is toast physically. Naps are my friend now even though I never thought of them before.

More recently, we’ve renovated the downstairs bathroom and put in a handicap accessible tub with rails and a seat. This will help my 87-year-old dad right now, but that’s also future-proofing the house when I’m banned from climbing stairs because, I live a house designed by M C Escher, or it seems that way! 🙂

I also don’t drive as much. I am actually a bit concerned about myself on some days and I recently had a couple of near misses which scared me. This is something I need to talk to my neurologist about. Seriously!

I now leave the cooking to others. I have insisted on placing a metal pot with eggs and water in it in the microwave. I didn’t do this just once; I’ve now done it three times already!

I have a difficult time tying the garbage bags closed and end up using a twist tie. For some reason the coordination isn’t there to tie the ends properly.

I can no longer participate in jury duty. When the fatigue hits and the meds make me tired, I don’t think the judge would be too happy. I mentioned this to the clerk of courts at my last jury duty and I was dismissed immediately! She was very nice and agreed, that wouldn’t be a good thing. I then had to call my doctor for an exemption form that was faxed over.

So, yeah that rude awakening that happens albeit slowly over time is a rude awakening when we start thinking about it. I’ve adapted by not doing as much or some of the things I could do before.

[John Citron]

Gary,

I wish you lots of luck with this. My recommendation is to get to a teaching hospital or clinic if you can where the doctors are more open-minded. I transferred from a local neurology clinic, now out of business we wonder why, to the famous Lahey Clinic which is affiliated with Tufts University. My current neurologist is the chair or dean at the university the last I heard.

It’s because of this that I ended up over at the Lahey Clinic. The first neurologist I saw told me right out, I was “Too young for Parkinson’s Disease” at 43-44 years old! My symptoms in fact were very similar back then in particular the internal vibrating which I still experience. It’s like holding a motor tool then putting it down with the vibrations continuing. In my legs the feeling was like standing in a train passenger car over one of the motors then leaving. That residual feeling is still there, but there’s nothing there to cause it.

This first neurologist kept insisting it was focal dystonia and was trying to push me in that direction. After I pushed back and had him give me some Carbidopa-Levodopa after a friend insisted what I had wasn’t focal dystonia, and like Annie it was like night and day, his retort was “Oh you have a bit of dopamine uptake issue”, but I want to come to my Botox Clinic.

My old GP kept pushing the FND route and whispered in my ear that “I should see someone about it” after the neurologist made a mistake in his report which said everything was normal even though I was put on C-L and Mirapex which were working well, and I required an increase in the Mirapex to the next level up with the controlled-release of CR at night.

When I confronted my GP about it, his face turned ash-colored, then a bit greenish gray, to be followed by bright red when he sat down on his chair! It was then I made an appointment at the Lahey and saw my current neurologist/MDS for the first time in 2006.

I think doctors push the FND route because it’s easy and actually is a cheap way out. The run a few cursory tests which will show nothing, besides we’re too young and don’t have the have the obvious symptoms which are easy to spot, so it’s quick test or two, plus a blood test or two, and they’re done. Nothing found, then it’s FND and the patient is given an anxiety pill.

For the majority of patients, they’ll take what the doctor says and that’ll be the end of it. Then there are us who will balk, fight as we do some critical thinking about it. We’re the “troublesome” ones that don’t fit well with the rest of the cogs.

In the end, Gary don’t give up. The longer they delay treatments, the worse you will feel. When you start on the treatments, the feeling is like night and day as both Annie and I and many others will say over and over.

[John Citron]

My sleep varies from day to day, or as I should say night to night.

There are nights when I can’t get to sleep fast enough and will zonk out and wake up the next day happy, then there are nights when I can’t do it and end up staying up and reading or doing something at my computer like use my Trainz program because I hate watching TV, besides it’ll bother others in the house because the dog will start barking when he hears the voices. I swear, he can hear a leaf fart and barks at neighbors across the street if he hears them.

Some nights start off perfect. I’ll head right into a deep sleep, dream vividly and wake up after about an hour. The sleep feels like I had been there for hours, but it’s only an hour like a short nap. After that I get up because staying in bed attempting to sleep makes things worse.

Being one with a critical thinking and analytical mind, I did some troubleshooting as I tried to attribute this to various things that might be affecting my ever so wanting night’s sleep.

At first, I thought this had to do with me napping during the day which I manage to do right after my evening meal. This nap isn’t a “just check for light leaks moment”. This is an outright really MUST close my eyes otherwise I feel barfy type – The kind we get when we’re fatigued. I’ll then nap in my chair, ending up like a pretzel, but a bit more rested after an hour.

But that wasn’t it. I’ve napped and ended up sleeping deep anyway on some nights and others I toss and turn, well toss on one side because I can’t turn over well.

I thought about caffeine. Yes, I’ll drink coffee during the day and maybe a cup of tea after dinner occasionally but mostly in the winter. My coffee consumption is about 2-1/2 to 3-cups per day and nothing more. I don’t drink soda because it makes me urinate a lot and the sugar make me feel queasy.

But that wasn’t it. It didn’t matter if I cut back on the caffeine and kept it no later than noon with no tea at night.

I’ve deliberately been avoiding the news at night to ensure I don’t get my mind working on that as I go to sleep. With all the world’s events these days, that means nightmares and over-thinking all night as I attempt to solve the world’s problems. I’ve done this to myself in the past and the worries and angst over the events makes for a horrible night.

But avoiding the news didn’t help either.

In the end, it must be the Parkie brain at work. When I do get my good to awesome night’s worth, I enjoy every minute of it and deal with the other days when I can’t.

[John Citron]

As a kid I was exposed to Chlordane, Malathion, and other garden poisons. My dad used to cover everything with Chlordane to keep the carpenter ants from invading our house and also used it in the garden to keep the rose beetles at bay. The Malathion came out when the tent caterpillars invaded the shrubs and pine trees. We also used to spray this along the edge of the woods to keep the mosquitoes from invading in the summertime.

The exposure may have come from me helping. Unlike my younger brother who was too young to do this, I was out there in the garden helping out and I used to handle the spray nozzle for the liquid mixtures. The spray was controlled by pressing my finger on a hole in the nozzle and the poison would run down my hands. This was in addition to any spray back caused by a breeze or hitting the side of the house. I can still mentally smell the Chlordane and Malathion to this day.

[John Citron]

Mary-Beth you are spot on!

After I went through the five steps of denial and acceptance, I realized that there’s a lot more to the world than as we see it on a daily basis. As I said to someone one day the grass really is green, the sky has the most beautiful blue, and the flowers really are brightly colored. We don’t see it as the world whizzes by us like the world outside the window of the Acela train as it passes through the countryside.

Like you, I also really cherish the people I have closest to me. As we go through life ever so quickly, we don’t realize what and who we have until they’re gone. Keep them as close to your heart and appreciate their presence as much as you can always.

[John Citron]

Probably my story is a bit more complicated than it is for other people, but that’s usually my case. Nothing is simple when it comes to me!

I was officially diagnosed in 2014 but had symptoms years before and took C/L and Amantadine for a number of years before quite successfully. The medication worked well enough for me to be able to work until late 2012 before everything started falling apart on me.

I started in mid-2004 with painful spasms in my legs and feet along with awful fatigue and tremors. Being a classically trained pianist, I noticed coordination problems in my hands at times which I initially attributed to being exhausted from work. Heck, I was not only working a 60-plus hour week, but I was also taking night classes in information technology towards my bachelors in IT.

It was the tremors though that scared me because my grandfather had Parkinson Disease. I distinctly remember him shaking all over and shuffling about. He lived with this during the time when there was no treatment for the disease like we have today.

My primary care doctor tried Toprol to stop the tremors thinking it was benign essential tremor. This didn’t work and did nothing except make me very tired and out of it. He did find during some tests that the Lipitor I was taking had done some severe muscle damage and we stopped that, but once my CPK levels were back to normal the tremors and outright fatigue remained.

I eventually saw a local neurologist who diagnosed me immediately with focal dystonia because I played the piano for about one hour per day. He did some quick tests and handed me a brochure about dystonia all in about 12 minutes that we met. I saw him again and he had me go for some other tests which showed other neurological signs other than just dystonia, but he insisted that’s all it was and insisted I go to

his

Botox clinic for shots. I balked and we became enemies! Something inside said NO! to the Botox shots. He reluctantly gave me some muscle relaxants, but that didn’t help either much at all. I still had spasms, tremors, and very sore biceps among other things going on.

A fellow music friend of mine, a primary care doctor, noticed my gait and me holding my bicep muscles because of the pain in my shoulders and arms. He told me right out that this wasn’t dystonia, and I should ask for further tests and seek another opinion. I saw my neurologist again and asked him about this. Being enemies by now, he was on the defense and insisted it was dystonia, and I pushed harder to try something else. He reluctantly gave me Sinemet. It worked 100% off the bat! He didn’t have much of an answer and we went for Mirapex as well and that helped a very tiny bit too.

The Sinemet released my hands which were no longer clenched tightly. My feet uncurled and for the first time in what felt like a lifetime I felt normal again! The aches in my biceps went away as well.

After some mistakes in a report back to my primary care doctor, I was able to switch to my current neurologist at the famous Lahey Clinic.

Throughout this ordeal, I found out the hard way I had to be my own health advocate. I found out that if we don’t speak up when we don’t like something, things can go seriously wrong. As it turned out the first neurologist is no longer in practice!

My current neurologist is definitely more thorough and sent me for further tests to ensure this is what she thought it was and not something else, and she said yes there are some components of dystonia, and it was good I didn’t go for the shots. (The ole gut was right again). I was told that I have other things going on in addition to the Parkinson Disease which kept her from making a firm diagnosis earlier.

I also found out too that we can be our own worst enemies. The internet does not help either, I’m sorry to say this online. The information has gotten much better since the late 2000s, but there’s a lot of scary information out there too that’s incorrect. That scary information can do scary things in our minds.

Being my own worst enemy meant I stopped playing the piano. After about year of being on strike, I found I was the only one in a funk. Nobody else cared or bothered to ask me how I felt. It was then I focused back on my music in earnest.

In 2009 I enrolled at University of Massachusetts at Lowell as a music major after being laid-off from my job during the great recession. I was able to put in the best year of my life as a music major and only wish I could have done this when I was 18 instead of 48. I maintained a 3.89 GPA during that full academic year and so wanted to remain in school for music.

I went back to work after running out of money and ultimately ended retiring on disability in September 2012 due to the increasing symptoms including balance and cognitive issues, stress and inability to keep up with the job.

Today, I try really hard to maintain a stress-free environment and focus on the things I like such as music. I still play the piano nearly daily and belong to a group of pianists and organists who talk music on a near daily basis.

I discovered too that being diagnosed with Parkinson Disease doesn’t mean we have to stop living. Do what you can while you can and enjoy every minute of it.

[John Citron]

After my diagnosis, I became more aware of the world around me. I follow storms and severe weather, even went storm chasing when I could do it physically as well as financially and enjoy the outdoors overall more the beauty that mother nature has given us.

I also cherish my family closer than I ever did. When we’re young, we go passing through life as if we’re driving on the highway. Today, I take the backroads and enjoy what’s around me.

Marlene also hit the nail on the head. As someone who also takes care of pets and an aging parent, dealing with stink is part of the package. Before Mr. Parkinson joined my life, I couldn’t even walk into the room without gagging when it came time to clean up. Now, I just do it without the smell part.

Not being able to multitask however is frustrating. It was due to this that I am no longer working. I couldn’t keep up with the pace and I was becoming more and more disorganized which for someone who works in IT is a bad thing.

The other part is people think I’m “normal” and I can still do the same things the same way and get snappy at me for not doing instantly or not completing a task before moving on to another. They don’t understand! Our brains aren’t wired like they used to be.

[John Citron]

Alan,

Playing the pipes is awesome! A Scottish friend of mine learned to do that many years ago and loves it.

I agree the use of both hands doing two things is one of the best things for our coordination. Recently, however, on my bad days I can’t play crossed hands or play polyrhythms well, and sometimes other coordination issues appear. If I have a bad day, I’ll take a break and find the next day is better.

[John Citron]

Ron,

It was like magic!

I went from clenching my fist and jaw with awful stiffness throughout my body, spasms, and tremor, to being able to move around. The very first dose allowed me to uncurl my hands and loosen things up a lot. The tremor subsided and I did indeed feel normal again. What’s interesting is I never showed any side-effects until my dosage was changed to a controlled release which caused severe nausea and hallucinations which caused me to cold-turkey-quit after I heard voices, saw aliens, rats, and bugs! I’m on C/L now but on a different combination that still works well for me today.

Tremors, from what I understand, are not always helped with the C/L and other medications are needed as well. PD being what it is means that this varies from individual to individual. Talk to your neuro about this.

Exercise is a part of our wellbeing. I don’t jog, but I am active and do things outside. During the warmer months, I go for walks and do things outside in my yard. I used to bike ride a lot, but the traffic is scary, and I lost my balance once and nearly landed headfirst into poison ivy!

I also play piano daily, as I explained to Clive in response to his post. Piano playing is a lot more than pressing keys in the right order at the right time and involves the whole body. I learned these techniques when I studied professionally as a music major. (A career path that ended very abruptly in its infancy and started and ended when I was 49). The exercises are similar to what we do when we go for PT.

[John Citron]

Hi Ally,

I sent you an email.

John

[John Citron]

Wow Elizabeth, your neurologist was kind wasn’t he! *Snark here*

Mercury and other heavy metals cause all kinds of nerve damage. The mad hatter was a real thing in the 19th century. The felt was treated with mercury to make the threads tighter and more pliable.

Why Was Mercury Used in Hat Production? – Hat Realm

Arsenic ends up in rice from chicken poop and feathers used as fertilizer. Arsenic is given to chickens to make them more palatable looking because it turns the flesh pinkish instead of letting it remain yellow. They go off to market and their manure and feathers is used to fertilize the rice. Arsenic is also used as a pesticide and for rodent control.

The other thing I read was the arsenic ends up in the rice paddies because the land, especially in the Southern stations in the US, that was once used to grow tobacco and cotton is now used to grow rice. The fields were treated with arsenic-based pesticides to wipe out the bole-weevils that feast on the plants.

How Much Arsenic In Rice Came From Chickens? | NutritionFacts.org