[John Citron]

I PLMD or periodic limb movement disorder and have punched myself in the eye and blackened my hand on the bed frame as I flailed about in my sleep. It was difficult explaining that to my coworkers when I was working!

Generally, my dreams are very vivid to a point where I can hear, feel, smell, and even taste things. These are the ones I enjoy especially as I relive my days of traveling and going places. It’s the scary ones that have knocked me on the floor or have given me visitors I don’t wish to have that I want to forget!

[John Citron]

<Typo>

I have PLMD or periodic …

[John Citron]

Yup same here. One minute I have my hoody on and another minute I’m peeling it off. During the summer I sweat so much that my head becomes slimy and gross feeling, and my glasses steam up. This never occurred before I had PD.

I went for an autonomic nerve test for my low BP, and it was discovered that my response to temperature changes is very slow which explains why we freeze or fry.

I too have Renaud’s. My grandfather who had Parkinson Disease also had it and so did my mom. Living in a cold climate means my hands turn yellow and my feet freeze. The response is the same in the supermarket where I also freeze to death even in the summertime. When I go to the store now, I put on a sweatshirt or sweater even during the summer months. People look at me like I have three heads when I walk in the store when it’s 98 F (37 C), but I don’t care.

[John Citron]

John,

These things are mean!

I take C/L 50/100 at night and that helps me get through the night most of the time, but still get hit with them around 4:00 am. What is it with that hour?

What’s interesting is this was one of my earliest symptoms of PD which I attributed to not drinking enough water while bicycle riding when they first started. They got so bad I was getting them all the time including when driving home from work. There were a few times I had to pull over and let the feet calm down.  Once I started on the Sinemet 25/100, these things all but disappeared during the day and only visit at that hour.

 

 

[John Citron]

This is one of the meanest of the non-motor symptoms of PD!

My record is about 14 days as well and by then I’m a bit unnerved as I expect myself to explode!

I find though eating fruit such as apples, tangerines, pears, and grapes help the plumbing do what it’s supposed to do. To vary my diet a bit, I’ll throw in some trail-mix as well. I don’t like a lot of salt or sugar, so I get the plain kind with mixed nuts, raisins, dried cranberries, and other dried fruit. The results are fairly consistent for me, and it tastes good as well.

[John Citron]

Haverhill, Massachusetts which is about 35 miles north of Boston and 4 miles south of the New Hampshire border.

I was born here in 1961 and we lived across the bridge in Bradford, also part of Haverhill. I then lived in Merrimac and Andover then moved back to Haverhill where I bought a house with my parents in 1999.

I retired in 2012 and was fully diagnosed in 2014 but was showing signs and symptoms for years prior.

[John Citron]

Similarly, this is the same for me as well. I mentioned this to my doctor at my last visit. For a big part of my adult life, I lived and worked under stress. It wasn’t until 2018 when the very famous you know what came to an end and my symptoms did too.

During this time, I was working fulltime, attending evening classes online as I was finishing up my BS IT degree and trying to do the other stuff at home. If the work stress wasn’t bad enough, coming home to the rest only added to it because there was such high tension from what was going on there as well. I had a failing elder parent along with abusive siblings. One who threatened to push me down the stairs. Work ultimately came to a sudden halt in September 2012 and there was a sense of loss, but relief too but that didn’t last for long.

In my technical support occupation, I was responsible for 700 employees, 680 in-house and 20 in the field plus training new teammates, inventory, security clearances, and other tasks. After nearly falling at work, I was put on probation and told to get my act together because I wasn’t keeping up with the team. It didn’t matter that I was closing 350 tickets a month. My boss was going to terminate me because I had 50 tickets open in my queue. It didn’t matter that I received 3 awards for excellent performance and support. He was young at 22 and didn’t have a clue. It was then that I sought out disability because staying on top of things mentally and physically was becoming a challenge more than I could bare.

During this time, I would go home and could barely get out of my car. I couldn’t stand up. I was tremulous, lacked coordination, had vertigo, and lots of rigidity and stiffness. My medication too had been increased more and more to a point where I was taking a whopping 18 Sinemet daily plus Amantadine, and something else. These left me lightheaded, and nauseas, and didn’t do much at all. My doctor and I did a reevaluation and we cut back a lot with the introduction of Azilect and later Seligiline due to the cost of the Azilect. This worked a lot at first, but then I was back into more symptoms again.

Finally, it was in 2018 after my mum passed away, did I feel some relief. It was as if I had reached the end of a tumultuous journey and arrived at a quiet cabin. Today, I’m on a minimal amount of medication. I need a bit more now than I did a couple of years ago, but the stress isn’t there.

When I am stressed, I tremor right off. I look like my grandfather who had Parkinson Disease with the tremors. I also become stiff, and nothing feels right, and I become outright fatigued.

Like Garrett, I too can only deal with one thing at a time. If I go food shopping, that’ll be it for the day. The same with a doctor’s appointment at the clinic. After the stressful drive, arriving, parking, and everything else, I’m exhausted and feel that way for a day or so afterwards. Sure, I’m “old” having turned 60 last May, but that’s no excuse. I’m kidding here and it’s a bit of a joke I have with my cousin whose 6 months younger. I’m far from old, yet I am.

In the past, relieving stress was done by bike riding. I had a route that had a nice ice cream stand located next to the railroad where I would sit and watch the trains pass by. I always managed to time it right to get a good show. Other times, I would walk the trails in the nearby reservations. The spring and fall were my favorite times with the odor of spicy leaves and earth especially in the autumn. Where I live today, this isn’t so much of an option due to the lousy roads and hill I live on, but I’ll take a ride with my brother when he goes metal detecting. The walk is great exercise and the only thing I have to watch out for is poison ivy. When it’s winter or bad weather, I’ll focus on my other hobbies and escape into my virtual railroad world as I work on my routes and sessions. We need that escape from the rotten things to recover and rebuild.

 

[John Citron]

I have three possible vectors where I got PD from.

My grandfather on my mum’s side had it. He unfortunately passed away with no treatment for it. I remember him tremoring away and staring off into space. The family blamed his tremors on drinking, but he didn’t drink a lot to cause tremors as I’ve seen in other people. He was also called lazy, dumb, and slow, and this was the Parkinson Disease; he was none of that at all.

I worked in the high-tech industry initially in circuit board assembly and later as a technician where I was exposed to solvents, flux, solder, and chemicals from the components themselves.

I was also on Lipitor from 1995 to 2004.

I always questioned statins and never felt well when I took it, but being a good patient, I listened to my doctor. I have familial high cholesterol and it takes a lot to lower the values to the “normal” range. The doctor doubled my dosage and after that I really didn’t feel well. During a routine blood test, he discovered I had very high CPK levels and during this time I also had really bad cramps in my legs. I was sent for an EMG/NCT and that showed some muscle weakness and I also had Rhabdomyolysis from it. I stopped the medication and never felt right since.

By mid-2004, the spasms and cramps got worse. I would get them when driving and ended up pulling off the road. Little did I know that was the PD. I still get those so bad in the wee hours that I have broken toenails. My hands tighten up so bad I end up with bruises in my palms sometimes at the same time as the feet doing their thing.

I could barely get out of my car, and my left arm wasn’t swinging. My manager noticed that and the fact I wasn’t smiling. He noticed too that I was clenching my left hand tightly and asked who I was about to put down, kiddingly of course! He did insist I smile. Knowing now what was going on then, now makes sense.

I am a classically trained pianist and played and still play almost daily. I noticed too that my hands wouldn’t always get their act together and my coordination was off. One day, I developed tremors on my left side, and it was then I contacted my doctor. I still get this and it’s very upsetting and frustrating.

He sent me to a neurologist who said I had Focal Dystonia after we met for about 19 minutes. He came to this conclusion because I play the piano 1 hour per day if I was lucky. Yeah, this did it.

He handed me a bunch of brochures and said to see him in a few weeks for further testing. I then saw his associate who noticed other pyramidal and extra-pyramidal anomalies. I then met with this doctor again, and he said exactly what he said before along with set up an appointment with my Botox clinic. It was then I put the brakes on and questioned him. Let’s say I didn’t have a good repour with him afterwards.

Being a musician, I joined a Musician’s with Dystonia support forum and talked about my symptoms. The doctor on the forum told me to seek a second opinion because what I had didn’t sound like FD! A friend of mine, a doctor, also said the same thing. There’s a picture of us standing together and there I am holding my sore left biceps, again.

After that, I insisted that neurologist give me some Sinemet, and it worked 100%! I felt normal after the first dose with not even a touch of nausea. The medication increased plus Mirapex.

When I asked him about PD, he said I wasn’t old enough to have it. I then switched to another neurologist in November 2016 after he messed up a report to my primary care doctor, and I’ve been with her ever since.

 

 

[John Citron]

First, I want to congratulate you on receiving your shots and the booster. Well done!

I had Pfizer all the way.  I had no real side-effects from the booster at all other than a sore bicep muscle on my left arm where the injection is. I’m sore there anyway and this was a bit stronger and lasted a lot longer, maybe 3 days.

I had an interesting visit with the nurse at the CVS where I had my shots and booster. When she was about to jab me, she noticed my bicep muscles were very tight on both arms. I told her I’m always like that and have a sore shoulder too on my left side. The first thing she said, was oh it sounds like you have Parkinson’s? I said yup, I sure do. We then discussed the medication and what not. She also works as a neurology nurse at the local hospital.

[John Citron]

I entered into Long Term Disability (LTD) in early 2013 after leaving my full-time job in September 2012. I had “production issues” at work and my boss was going to fire me because of it. I knew then it was time because my IT job required me to be on my toes, figuratively and literally at all times. I was passing out from medication changes, falling, and becoming completely unraveled due to the stress. Supporting close to 700 people daily was stressful normally and I was beyond what I could handle. I suppose closing 350 tickets a month wasn’t good enough for the boss.

So, with much pride eating I entered a new realm. My company, outside of my boss, was very helpful in setting me up initially with short-term disability until the LTD was ready. The insurance company put me in touch with the Advocator Group (recommended bigly!) to assist me with the process, which ended very quickly in 2014 with no hitches at all.

With the LTD, I was able to do quite well initially and relaxed once some glitches were worked out. After a short time, this insurance company did their best to stress me constantly as they asked for updated medical records from my doctor on a monthly basis. The clinic would retrieve the records and charge the insurance company $28 to mail them. This was okay at first.

Then a few months later I received less than the amount I was supposed to because they didn’t get their requested records when requested yet again. I called them when I found out I was shortchanged one check because they were going to cancel the coverage due to broken terms.

To find out why, I called the clinic and spoke with the records department. The very nice young lady there told me that the clinic had the request, but the insurance company had not paid the $28 for the mailing, therefore, they didn’t retrieve them. I then called the insurance company and spoke with a representative there…  There was silence on the phone then they hung up! A short time later, I received all my money and not a word was said.

This process continued on and included a visit to a schlock neurologist who made extra cash by taking on insurance clients. He and I talked for 15 minutes, and I went home.

Finally, in early 2016 I received a letter. The insurance company was no longer going to handle LTD and was terminating the coverage. They offered a lump sum payment and after thinking about it I accepted the offer. I took the money and paid my mortgage down more than 50%, paid off all my bills and now I’m nearly debt free 5 years later. I recently refinanced to get some renovations done including bathrooms, roof, and driveway.

I may have less income coming in, but I am less stressed. Every month I had them, there was some issue that had to be taken care of which was stressful to the hilt.

 

[John Citron]

I enjoy music both listening and playing, railroads, and severe storm watching.

I studied piano since I was around 7 years old and once had plans for a career. That was sidelined by time spent in the high-tech industry instead. In 2009, during the Great Recession, I took time off job searching after my old company closed and did a year as a music major at UMass-Lowell. It was the best time of my life. Sadly, that came to an end, and I ended up back to work again when I ran out of mortgage money. (I had to pay that too!). When I left work in 2012 due to the PD, I continued my lessons and I still play and study.

I practice and play most days for about an hour or two. I can’t do more than that because my back and shoulders bother me as I attempt to stay upright, besides, the brain caves and nothing gets done. A teacher once said to me don’t do any more than an hour at a time, and she was absolutely right. With practicing and playing, it gives me goals to aim for and accomplish. This doesn’t mean I don’t have bad days. It’s on those days I step away and don’t go near the instrument.

I also enjoy virtual railroading. I discovered this in late 2003 and I haven’t stopped since. I used to have an extensive layout setup but with the cost today for a real model railroad being beyond what many people can afford. Dropping a $500 or more locomotive on to the floor is a bit more than heartbreaking and I did just that! Shortly after that accident, I discovered Trainz and that was the end of the real layout.

With the virtual railroading program, Trainz TRS19 (TRS2019) from N3V Games, http://www.auran.com I can build routes as big as I want and not break anything. I can disappear in my own world as I detail the landscape with trees and buildings, and eventually place trains down and drive them. Seriously, I can climb into the cab and see my world. The best part is there’s no mess and nothing can get broken.

I also enjoy severe storm watching and chasing. I used to go out on tours with Roger Hill, but those days are over for me. During these trips, we didn’t always see storms and instead visited some beautiful places such as Devil’s Tower and Glacier National Park. The problem now is twofold. The trips are way too expensive and way beyond my budget, and I can no longer handle this physically. The long rides, trapsing in and out of hotels, and the stress of air travel became worse and worse. After my last trip in 2016, I was more exhausted when I got back than when I left for my vacation.

Today, I watch a severe storm chaser from Australia. Daniel Shaw does weather and news reporting in Australia and live streams the storms down there and comes up to the US and does trips in the Midwest. With these trips, I can sit and watch the storms while my cat chases the windshield wipers disappearing behind the monitor.

[John Citron]

I focus on things I like to do and don’t dwell on the PD. Like everyone else I went through the shock, denial, acceptance path. After a period of feeling sorry for myself, I then realized there ain’t much I can do about it, or other things I can’t control.

I’m not avoiding the fact that I have it, it’s there, it bothers me as it rears up its nasty head and gets me with spasms, stupid twitches, falls, bumping into things, and the annoying non-motor symptoms, but I don’t sit in the corner and cry about it.

Now, I do what’s within my realm such as taking my medication on a strict schedule, eating right, exercising, staying positive and above all, avoiding as much stress as I can. I also have a bunch of hobbies I enjoy with three at the top of my list I can indulge in the most.

I also keep my sense of humor. Without that, we have nothing and its humor that keeps us going as we find a bit of irony or a pun in our life. Recently, I started having some cognitive and executive function issues and with that my neurologist and I were talking about various aspects. When she finished, I piped up and said, “With executive function issues that means I must qualify for upper management in the company I used to work for.” We both had a good chuckle on that one.

 

[John Citron]

I had this a little bit before, but now that’s becoming more common. I always have a piece of music in my head since I studied music my whole life, so I use the humming trick and find something to “play” and then move to it.

 

 

[John Citron]

My shoulders love to play contact sports with doorways. My right shoulder has a recent battle scar caused by a recent fight with the doorway as I entered the kitchen, and my left shoulder is bruised from another entry or exit from another room. I noticed too that my left shoulder now freezes, and my biceps are sorer than normal. I hope I didn’t do any damage.

I also have to watch myself on stairs. I have what my doctor says retropulsion, meaning I fall backwards. I suppose it’s better landing on one’s backside than face and knees, but I currently live in a house that M. C. Escher built with stairs. Recently, I fell backwards near the top but was able to catch myself. My fear is this isn’t going to go so well someday!

Sometimes I teeter when I walk and nearly went down the stairs as I walked down the hallway from one room to another. I reached out to catch my balance on something except the “something” wasn’t there to catch because I was right at the stairwell! I grabbed on to the banister and luckily stopped, otherwise the outcome would have been bad.

[John Citron]

My cat Mel does the same. She sits with me, watches me, sleeps with me with her face right at mine. When I’m not around close by, she MOWs (pronounced like COWs) then meows softly when I go see what she wants then flops over on the bed!

She’s also bossy and lets me know when she wants something including quiet times when she just sits quietly as I pet her.

Sadly, she’s very elderly and if anything happens, I plan on getting another cat. I have always had a cat or two in my life.

 

[John Citron]

The use of tin-lead solder is still prevalent in the electronics industry, although I haven’t touched a soldering iron since 1992 when I left that aspect of the industry and entered into computer operations. By then the US tech jobs had disappeared as they moved offshore.

I will ask my neurologist and my primary care doctor about my iron levels if the D and iron go hand in hand.

I agree there are too many dots to connect here, but maybe someday someone with enough money, time, and energy can do it.

[John Citron]

I tried that and it didn’t work for me, but the C/L did. It was worth the try though.

[John Citron]

Thank you for this detailed information as well, Robert. I see my neurologist in a couple of weeks, and I will bring this up again. She’s very open-minded about suggestions and we work together and not as adversaries that have two different paths.

Recently, during another routine blood test, it was found my Vit D was low and I’ve started supplements for that as well. I had a shot initially and now continue with pills for the. Vit B12 was initially weekly then monthly 5000 mcg injections and now due to Covid-19, I take 5000 mcg supplements. I do go for periodic blood tests for this because I’ve had absorption issues in the past and if the pills aren’t working well, I’ll need the shots. The B12 shots made a big difference in my symptoms more than anything I’ve taken.

I mentioned the high-tech industry work because I’ve noticed a correlation between PD and that. My neighbor, who sadly just passed away, also worked in the same industry as a hardware technician and also developed PD. It makes me wonder if the chemicals used to clean the circuits as well as the materials used to make the components has something to do with this. Is this a one-off? I’m not so sure. There are others in the same industry that also developed PD including the former head of Intel.

When all is said and done, we may never know because there are so many causes ranging from chemical exposure, viral infections, genetic predisposition, and anything else in between, but it’s worth working and researching with hopes to find out.

It’s interesting research and the correlations help us determine what the specific cause maybe in some areas, but there seems to be an underlying predisposition for it, otherwise, the numbers would be higher. Why is it only 500 people in an area end up with a specific cancer or PD while the remaining 200K-plus residents do not? Is it luck of the draw, or is it something else that makes that happen?

In my case, my grandfather had it. He also had the 1918 influenza which left him deaf. Was it the influenza that caused the PD, but why did I end up with it too? It’s questions like that go through my head all the time. I think this is in part my inquisitive mind, being one that loves science and engineering. It’s because of this, I put on my critical thinking cap and do a long and short look at everything that’s presented to me, and it was because of this the first, neurologist and I didn’t get along. He thought he could pull “I’m a smart doctor and you’re a dumb patient” on me and that didn’t go as planned. In the end, he’s no longer in practice which is a good thing for others but sadly he ruined a lot of people’s lives along the way.

[John Citron]

You went through the wringers as they say Patricia.

My first neurologist wanted to visit his Botox clinic to make money off of my insurance. Being one to question, meaning I put on my critical thinking cap and asked questions that he didn’t want to answer, we became adversaries.

Eventually, after a report back to my primary care doctor that completely contradicted what was discussed in his office, I finally got a second opinion. It was then that this young neurologist, fresh out of John Hopkin’s and did her residency at Mass. General, with an open mind who put me through a bunch more tests.

In addition to the EMG/NCT, I had tests for poisons, low vitamins, which proved my Vit B12 was dangerously low. Dangerously low as in being at 27 instead of in the 900-range where it should be. The first doctor never bothered and had made up his mind in 30 seconds, I think.

After this incident, I discovered you need to become your own advocate and fight back when things don’t “smell right”, you need to speak out and speak up loudly and keep pushing when things aren’t right.

I think part of the problem over here is doctors don’t listen to the patients and don’t look at the whole picture and instead focus on a tiny point. This is unlike the treatments you see in Europe where they focus on the body instead of one small thing.

Over here because of that micro-focusing, they instead have preconceived notions and theories rather than looking at all the facts and listening carefully. I ran into this with another doctor. I had pains in my neck along with numbness in my face and awful headaches. I was told it was a migraine and then told to deal with it.

After passing out one day, I lost coordination with my hands, couldn’t tie my shoes, or do much of anything for a month. I was sent for more tests… I had a TIA (ministroke)! During the ultrasound, a tumor was also discovered on my thyroid which I had that removed.

That was a 4.5 cm cyst putting pressure on my neck. When I had that removed, the pain in my neck and shoulder went away. I was experiencing two things and the doctor I had didn’t listen to me at all. My hands recovered, but the numbness on my face never went away.

[John Citron]

John,

My uncle was there in the 1950s to early 1960s and lived in the barracks near the drycleaners. He ended up with multiple cancers from it. Sadly, he passed away in 2011.

[John Citron]

I was when I went for a second opinion. This neurologist, my current one, tested me for heavy metals, and other toxic exposures. My results came back normal or within the “normal range” on all the tests.

[John Citron]

Phil,

My uncle was stationed there in the 50’s and 60s. He ended up with colon, prostate, and lung cancer from the dry-cleaning fluid dumped into the water. He lived in the housing right behind the cleaners.

I’m surprised he didn’t end up with other things besides that.