The weirdness that is Parkinson's Disease

     While researching the symptoms of Parkinson's Disease for the last two blogs, I started to think about all the weird maladies I was experiencing in the years leading up to my diagnosis. Some were more strange than others and none, even now, seem related to Parkinson's.  However, I wonder how many could have been caused by my brain trying to cope with the slow closure of the dopamine tap. 

     All of these symptoms would come and go.  Some lasting for weeks or months while others lasted for years before going away.  That's one reason I am having a problem figuring out if any of this is related.  I would think once you have a certain symptom you would continue to have it.  Maybe not all the time, but it should pop back in now and again wouldn't you think?  
     I'll start with the weirdest first and I guess it could be classified under vivid dreams.  About 10 years before I was diagnosed, I was terrorized by dreams about spiders.  Not a dream where something was happening and spiders were in there too.  No, these were dreams of me lying in bed and seeing spiders dropping down from the ceiling onto the covers.  I would jump out of bed throw the covers back and flick the light on.  My heart would feel like it was coming out of my chest as I agonized over where they went.  Surprisingly, this would wake my wife up every time. She would calmly tell me it was just a dream and go back to sleep, but it was so real I'd be up for a while.  This would repeat a couple times a month for about a year and then they thankfully stopped.  I remember telling my Mom about this and she said dreams about spiders aren't a good sign.  They usually mean something bad is about to happen.  Once again, Mom you were right!
If that wasn't strange enough, keep reading, I only get weirder from here.
    A lot of research is coming out about how Parkinson's affects the eyes.  This one I haven't shared with anyone before now because it is so strange.  Picture yourself driving down a country road and everything seems fine as you stare straight ahead.  Then suddenly, everything in your field of view rotates to the right about 30 degrees. You were looking straight down the road before but now you are looking at the left shoulder of the road.  Keep in mind you never moved your eyes or your head.  Its just that the spot you were focused on has been picked up and moved. It would be like you are staring at this blog then suddenly the scene rotates and you're staring at your left arm yet you never moved anything.  It's only happened twice, thankfully, and I have no idea if it's related to Parkinson's, but it would be interesting to find out. 
     There were more strange things happening to me prior to diagnosis that to this day remain unexplainable. I'll share just a couple more at the risk that by confessing any additional publically the men with the white suits may come and toss me into the back of a rubber truck. (Yes, that was a MASH reference),   I don't know if these symptoms will ever be linked to Parkinsons or anything else for that matter, but they happened.  Things like sweating profusely but just under one arm.  Luckily for me (and anyone that stood near me) this only lasted a short time. Also, allergies that have seemed to have come and gone are another one.
     I should retitle the main blog "The weirdness that is Parkinson's". Or, maybe this isn't related at all and I'm just a little batty, but seems odd that all these symptoms would attack an otherwise healthy person.
  
P.S. Four shopping days left till Christmas.  Remember when Sundays weren't counted in the shopping days calculation?

Parkinson's symptoms - 70 and counting Part 2

Part 2 of my look into the symptoms of Parkinson's Disease.  If you know of any I missed please forward information and I will look into adding it.  This list contains items I've found to be caused by Parkinson's, or at least according to the attached link for each one.  By no means is it meant to be exhaustive or a diagnosis.  
I was really amazed by the number of vision problems that Parkinson's can cause.  I had no idea of the association but will definitely bring the list with me next time I visit the ophthalmologist.



MOTOR

We begin with the four tenets of Parkinson's Disease:

• Tremor
• Bradykinesia - slowness -
• Rigidity
• Postural Instability

Musculoskeletal

• Micrographia - my writing is nearly illegible now.  Makes writing out cards nearly impossible
• Dystonia - a disease in itself however Parkinson's and especially Parkinson's meds exacerbate the condition
• Myoclonus-a quick, involuntary muscle jerk. I get these occasionally and they can happen anywhere in my body.  I've had them most while drifting off to sleep. 

Postural deformities

•    Stooped posture -Camptocormia - typically seen in later stages
•    Kyphosis - exaggerated rounding of the back
•    Scoliosis - twisting of the spine

• Difficulty turning in bed
•      difficulty standing from chair/car
• Dysphagia - difficulty swallowing
• 
  
• Sialorrhea -increased saliva production leading to drooling - I've seen this placed in the non-motor group but it seemed a better fit for my list here.
• Hypomimia (masked facial)

Gait

• Shuffling, short-stepped, drag
• Freezing - one of the many symptoms that I am least looking forward to and probably most worried about
• Festination of gait
• Decreased arm swing
• Turning en bloc rather than the usual twisting of the neck and trunk and pivoting on the toes, PD patients keep their neck and trunk rigid, requiring multiple small steps to accomplish a turn.

Vision

• Impaired contrast sensitivity - ability of the visual system to distinguish bright and dim components of a static image
• Colors appear duller loss of retinal cells that rely on dopamine to process color
• Hypometric saccades - mis-targeted eye movements
• Impaired vestibuloocular reflex - visual acuity lost when moving such as walking
• Lid apraxia - inability to open the eyes voluntarily.
• Glabellar reflex - tap on forehead causes continued blinking
• Decreased blink rate - which causes dry eye
• Irritation of the eye surface - from reduced blink rate
• Alteration in the tear film - reduction of tears
• Visual hallucinations
• Decreased eye convergence - eyes moving together like while reading
• Blepharospasm - excessive blinking
• Abnormalities in ocular pursuit, ocular fixation and saccadic movements Limitations in the upward gaze
• Blurred vision
• Diplopia (double vision), produced by a reduced eye convergence

Speech
Speech disturbances (hypokinetic dysarthria)
Hypophonia: soft speech.
Monotonic speech: Speech quality tends to be soft, hoarse, and monotonous
Festinating speech: excessively rapid, soft, poorly-intelligible speech.

Urinary
difficulty holding - I hate that sudden 'attack' of I have to go NOW!
difficulty emptying


Other Akathisia: an unpleasant desire to move. restless leg?

Parkinson's Symptoms - 70 and counting Part one

What do you picture when you think of a person with Parkinson's?  Tremors, slow movement, shuffled walk, the basics I guess.  I was surprised to find how full bodied this disease actually can be.  It seems to affect nearly all portions of the body in some way. 

 Since the more I looked the more I found, I started making a list.  It grew and grew to a point that I decided to share this.  It was becoming larger than I every imagined.  To date, my list includes over 70 items linked to Parkinson's Disease.  I've split them into two groups, Motor and non-motor.  This post will cover the Non-Motor symptoms.  I've attached  reference for each symptom listed so click away for more information. However, keep in mind that everyone is different and if you're afflicted with Parkinson's you may get some combination of these symptoms and not necessarily all of them.
If you know of any additional symptoms or question anything listed I'd love to hear from you.

Non-MOTOR

Hallucinations and also here
Confusion - delusions/paranoid overtones
Cognitive dysfunction - executive
Dementia
Short term memory - recent events
Difficulty making decisions
Multi-tasking
Visuospatial skills difficulties judging distances
Slowed cognitive speed (Bradyphrenia).
Language dysfunction and also here
Attention difficulties
Psychosis
Impulse control

Mood disorders
depression
anxiety
apathy/abulia
anhedonia
fatigue
Alexithymia -  a personality trait characterized by difficulties identifying and describing feelings and a reduced tendency to think about emotions.

Sleep disturbances
Sleep fragmentation
Initial Insomnia
Excessive daytime sleepiness - somnolence.
REM sleep behavioral disorder (RBD) - vivid dreams, acting out

Autonomic dysfunction
Urinary urgency/frequency
Constipation and also here
Orthostasis
Sexual dysfunction and/or lack of interest 
Excess perspiration - abnormal sweating
Difficulty swallowing

Pain and sensory disturbances

Smell
Olfactory dysfunction
   lack of smell
   phantom smells

Dermatological
Seborrhea
Oily skin

Next blog coming but check this book out in the meantime

Here is a link to a great cartoonist with Parkinson's Disease, Peter Dunlap-Shohl.  He has written a book in cartoon form about what it's like to experience and cope with having Parkinson's.  

A sample and link here

and another here

and you can order it here

My next post is taking a while.  It's on all the symptoms including links associated with or caused by Parkinson's.  I'll have to split it into two posts because as it stands today there are over 70!.

Apathy - the curse of Parkinson's

I started writing this blog as a kind of therapy for me to deal with the symptoms of Parkinson's Disease.  What I have found it most useful for, however, is a driver to get me moving and doing something... anything... other than sitting like a veg in front of the TV.
I used to be driven.  I used to have passion.  I would work on a project from sun-up till sundown and even later sometimes. It was almost like an obsession.  I couldn't wait to get started then drove myself to get as much of it done at one time as I could.
Then Parkinson's started to work its magic.  I've lost that edge, that drive and the will to accomplish, well.... anything.

I find myself frequently unmotivated. Just willing to do the bare minimum to get through the day. Projects I used to love to do, like working on my 100-year-old house, do nothing to excite me like they used to. I have to will myself off the couch just to get started and easily could be convinced to sit idle and watch reruns on TV instead.  Surprisingly, when I do manage to get going and accomplish something, I always feel better. You would think that would motivate me the next time, but sadly no.
At first I thought, along with the myriad of other symptoms of Parkinson's, I was falling into depression. Some studies suggest that 60% of people with Parkinson's experience mild to moderate depressive symptoms. I didn't feel depressed so my neurologist clarified this with a simple example.  She described meeting with a couple where the wife was concerned that the husband was depressed.  The wife stated the husband was unmotivated, didn't enjoy things anymore and basically wanted to sit on the couch all day.  The neurologist turned to the husband and asked him how he felt.  "I feel good" was the response.  Her opinion: This would most likely be apathy, not depression.  While not a clinical diagnosis, it certainly does help clarify the picture.

The best description of apathy and treatment options I've found is here.

Unfortunately, while there are many options available to treat depression, they are still trying to find the right combination that will treat apathy. And, as with most medications, you have to be careful of the potential side effects which rule out most of them for me.
While doing some research, I did stumble across yet another depressive symptom related to Parkinson's which I found interesting.  Well, interesting to me because it explains what I'm feeling (or not) better than anything else I have ever found. 

Anhedonia -  the inability to experience pleasure from activities usually found enjoyable

I have found over the years that I've been more and more of a 'what's next' kind of guy.   When something good happens to me, like winning an award or finishing a big project all I can think of "okay, that's over, what's next?"  It isn't that I'm unhappy that I accomplished something, there's just no sense of joy.  The strange part is this seems to be a bigger problem for those around me than it is to me. I guess it should bother me more, but it doesn't.  Hmm, indifference.  Strike another one up for apathy.
I've said it several times now, this is a weird disease.  At least it keeps me busy looking up new problems.

Some additional links on Apathy

Apathy vs depression here
Some non-medication tips for dealing with apathy here
Apathy and cognitive function here
Interesting study on apathy and other neuropsychiatric symptoms here
A little on anhedonia here

Is there anything good about Parkinson's? - Chocolate!

Have you ever had a craving?  I don't mean, "gee I could go for a bowl of ice cream" craving.  I mean the 10 pm it's snowing outside and I'm headed to the store because I need a piece of chocolate kind of craving.
It's a strange feeling that overtakes you and it all goes away with a little chocolate.  I don't want the whole bar, just enough to satisfy the craving. I'm not sure if any of my Parkie friends have experienced this feeling with this or any other food, but I find it strange that the craving stops with with just a square or two and I'm not driven to eat the whole bar.

How did the Mayans or whoever actually invented chocolate think ' if I just do these 12 steps these inedible bitter beans become something delicious!"  This is what I think about staring at the ceiling at 2 am, but I digress.

Chocolate contains many compounds, (nearly 380!!) that stimulate dopamine and other 'feel good' chemicals or prevent their reabsorption. Here is a short list of some of them and their effects:

• Tryptophan and serotonin: They create feelings of relaxation and well-being.
• Caffeine: creates temporary alertness.
• Xanthines: like caffeine, increases wakefulness.
• Theobromine: A stimulant and vasodilator increases blood flow.
• Phenylethylamine: stimulates the brain to release dopamine,
• Anandamide: This neurotransmitter activates pleasure receptors in the brain.
• Flavonols: Found also in foods like red wine, blueberries and green tea, these compounds boost blood flow to key areas of the brain for two to three hours after being metabolized, creating effects similar to those of a mild analgesic (painkiller) like aspirin.  reference here

 Okay, I get the attraction, but other foods produce dopamine and you don't see me driving to the store in the cold night air to pick up fava beans!  Plus, the amount of these chemicals in chocolate is incredibly low.  One study suggested it would take 25 lbs of chocolate to get that 'high' feeling.  So how could a couple of small pieces satisfy a craving?  Reading what is out there all I can suggest is the brain senses an imbalance, triggers the craving and once the craving is satisfied turns the craving back off.  I've said it before, this disease is weird.  At least, though, it was kind enough to make me crave chocolate and not something gross like... raisins...ick, I get a shiver just thinking about it.

Oh, my chocolate of choice - Hershey's Symphony bar - best chocolate you can get for under $2.  I am open to suggestions, though.

Interestingly enough, there's about the same number of studies telling you how chocolate leads to Parkinson's as there are stating how chocolate helps Parkinson's patients.  I broke some down below and will let you decide.


Bad Chocolate
Over-consumption leads to Parkinson's here
Compound inside Chocolate causes Parkinson's here
Chocolate doesn't help Parkinson's sufferers here

Good Chocolate
Study to find if chocolate reduces symptoms here and here
Benefits of Cacao here  and here

Avoid chocolate? here


Up next:  Apathy......maybe

Sleep... I took you for granted all these years

It is getting late and I am falling asleep in the recliner.  Time to give up and go to bed.
I lie down and like magic I am... wide awake.  Maybe if I just toss and turn for a while I'll tire myself out.  60 minutes, 90 minutes.  Nope, not happening...get back up.
Wide awake now,  let's see.... surf internet, check mail, write a little in next week's blog, bored.... I wonder what's on TV?  Infomercials. A combination banana slicer, cheese-grater and corkscrew.  I might have to get me one of those.  OOH, buy 1 now get 2 free!  I see why these shows are on in the middle of the night.  That's when we are at our weakest.
Finally feeling sleepy enough to go back to bed.  Dog took my spot, figures. 
Sleep.  Weird dream, wow that was so REAL!  Eyes snap open.  Feels like it should be morning by now.  Nope, 3 am.  Maybe if I could just get comfortable. Toss and turn again, ugh, now 4 am.
I wonder if I should just get up.
Hmmm, now it's almost 5 am, I must have dozed off briefly.
5:30 am alarm goes off.  I'm dragging.  It feels like I could sleep for hours.  At last, the sleepy feeling I've been waiting for has come.  It's not fair that it arrives just when I have to get up.

To sleep, perchance to dream; ay, there's the rub

I know Shakespeare's Hamlet was talking about suicide in this quote, but it has a different meaning to Parkies.  You can't get to sleep and when you finally do you can't stay asleep.  But, when you do happen to drift off, your sleep is either filled with vivid dreams or you act out one of them and punch your water bottle off the nightstand. Ay, there's the rub!
I can't remember the last time I had a good nights rest. For a while now it has been very repeatable:

• can't get to sleep will last a few days to a week
• can get to sleep, but can't stay asleep takes over for about another week
• then can't get to sleep and can't stay asleep hits which basically means you are up all night

then the cycle starts again

Nothing has worked.  Melatonin, sleep aids like zzzQuil™, sleepy time tea, warm milk, a jug of wine, nothing will break the cycle.  I am able to get by at least a little more comfortable by taking a Sinemet CR (controlled release) right before bedtime.  This helps to stave off the muscle soreness that would wake me up or prevent me from getting into a deeper sleep. However I am still, at best, getting 4-5 hours sleep a night and usually that's not all in a row.
I can't offer a lot of advice on this subject because I haven't figured it out myself yet.  I have gone through the no alcohol, no caffeine, no tv routines to try and help me get to sleep. Plus, tried no computer screens when I am up in the middle of the night to keep from 'waking my brain up'.  Nothing helps.  When I am up...I'm up.  At those moments, my body has no intention of resting so I figure I might as well be productive and get some work done.  I look forward to retirement someday where, hopefully, at two in the afternoon,  if I want a nap I can take one!

Here are some links to keep my Parkie friends busy in the middle of the night:

What lack of sleep does here  
Why you need your sleep here
Effects of not getting enough sleep infographic here

An article from the Huffington Post on continued poor sleep here
Interesting take from Business Insider here

Sleep tips from Parkinson's Canada here

Acting out while sleeping here
REM sleep disorder and Parkinson's here

Why can't a Parkie sleep? here

Can't sleep? You are not alone here

Data from a sleep study here


Next up: Is there anything good about Parkinson's - Chocolate!

Starting Parkinson's medications... or not?

I read a lot, correction, I research a lot.  Genetically passed down from my father (thanks Dad!)  I love digging out information on practically anything for whatever project I am working on.   Research after my initial diagnosis told me to delay taking medication for as long as possible to prevent 'getting used to'  it.  The consensus of opinion was you would build up a tolerance and the meds would become less and less effective. Sounded logical so I was determined to delay as long as I could.  As it turns out, I was convinced later that this was antiquated thinking.

 In my second year after diagnosis, the dystonia in my hand was getting worse.  Most times you would find my arm held tight up against my body with some of my fingers straining to lay flat against my palm.  I needed to stretch it frequently to keep the muscles from getting sore.  If I massaged my hand first I could use it, albeit slowly.  I arrived at my normally scheduled neurologist appointment with questions at the ready as to what we could do about this.  My other symptoms were minor in comparison: slight drag of left foot, trouble finding the right word at times, a little restless leg, the ever present resting tremor and, of course, varied to no sleep.   After looking at my symptoms, Dr. Richard (my Neuro) asked what I thought about going on medication.  I told her about my concerns of starting too early for fear of building up a tolerance.  She patiently pointed out that the current belief was you didn't build up a tolerance, your symptoms were simply getting worse which required more medicine.  I took that to mean that by waiting, your symptoms will progress to the point you will need higher doses of medication to control them later anyways.  I figured you would end up starting at the same dosage of medication as if starting earlier and making adjustments along the way.  Why suffer for two years to end up right where you would have anyways?  With my hand basically useless I was at the point I needed to try something.  
So what were my options?  I had been on an SSRI (selective serotonin re-uptake inhibitor) in the past for other things and did not respond well.  Let's just say some of these drugs can cause significant impulse control issues and I was afraid the wine store cashiers were getting to know me by name.  That eliminated things like Dopamine Agonists and MAO-inhibitors basically leaving me to start out with Sinemet and Amantadine. 
Looking at my contorted hand and responding to her question about starting the medication I said, "I'm in."  Everyone has to make up their own mind, but in the two years since starting meds I know I made the right decision. Although my symptoms have progressed and my dosages needed adjustments, I feel much better "on" than "off."  This was never more evident than when my Neuro asked me to be evaluated off meds. I was shocked how much they were covering up. My symptoms have definitely progressed!
I did some more research (big surprise) on building up a tolerance to Carbidopa/Levodopa (Sinemet).  It's amazing how many sites still claim your body gets used to the drug and will need more to remain effective.  Anything written more recently though says the same thing my Neurologist said.  For example from another PD blog:


Both my doctor in Japan and Dr. Okun from here on the ask-the-doctor section of the forum seem to agree with the notions that 1) Sinemet will not stop working but your disease may progress to the point where Sinemet can no longer control the symptoms as well. This means you may experience increased off time, unpredictable off time, dyskinesia, among other things. There are ways to manage these issues, such as taking smaller doses more ofter or adding different drugs or discontinuing other drugs. 2) it is not beneficial to delay starting Sinemet if your symptoms are such that they prevent you from doing things you want/need to do or limit your mobility. Limited mobility is far more dangerous in the long term because of loss of muscle tone and cardiovascular fitness, which can lead to other very serious complications like heart disease or blood clots. Lost muscle is hard to recover and will limit mobility as well. 3) there is no reason to believe Sinemet is useful for only 3-5 years. You will find many who have taken it for 10 or even 20 years. Remember it's the disease that progresses, not the drug losing effectiveness. For this reason, it's important to have good medical advice on how to optimize your medication regime so your function is as good as it can possibly be for as long as it can possibly be. One thing is that if you are undermedicated, it's all too easy to slip into a downward spiral of inactivity leading to stiffness and weakness leading to further inactivity.... I know. I've been there before diagnosis. 4) young patients tend to have dramatic response to Sinemet and while you may end up needing to dose more often to control off time, you may be able to maintain the same dose over many years.
To me, it sounds like your doctor is following some quite old guidelines, as they used to say that Sinemet would lose effectiveness. But, that has been shown to be false. Perhaps talk more with your doctor, do a bit of reading over in the ask the doctor forum and elsewhere, and even seek out a doctor who specializes in movement disorders and/or PD.

I could not have said it better myself!

There are some new additions to the medication line-up: Rytary and Duopa.  Both are described in the Medscape link below. Plus, I am seriously considering the botulism toxin for work on the dystonia.  I'll write about that in an upcoming blog but there is an article below if you can't wait.

Medscape with the most complete list of available Parkinson's med, descriptions, etc here

Very interesting study on what can cause the dyskinesia and why taking L-Dopa may trigger it here

Michael J Fox foundation medication page here
PDF with good list and explanation of meds available here
APDA on botulism toxin here
Parkinson's Canada information on taking medications here

Khan academy on medications here - make sure you watch the other Kahn videos too. 

Interesting study on use of a dry powder inhaler to deliver meds into the body here

The basics of wearing-off here
Some drug side effects here
Article on impulse control here

Good guide to Sinemet here

Up next: "To sleep, perchance to dream, ay there's the rub"

Talking to your employer about Parkinson's Disease

I was coming up on a year since diagnosis and the next Manager's meeting in Chicago was fast approaching.  Based on my symptoms and how much stress affected them now I was sure I wouldn't be able to get through the meeting without someone noticing.  I really didn't want to have to lie about any shaking, but that wasn't my biggest concern. When under stress, I was having great difficulty finding the right word and then stuttering trying to get it out.  While you can't really make your career at these Managers meetings you certainly could harm it.  As I continued to try and build recognition for my Plant, I didn't need to cast doubt about my leadership ability.  But, then I'm left with the cloud of doubt I mentioned in an earlier post.  If I tell them about my Parkinson's will Corporate be less inclined to help my plant grow as a trade-off for keeping my stress to a minimum?

I needed to talk to somebody that went through something similar.  Luckily for me I have a friend in Corporate that recently disclosed she has lupus.  I knew I could trust her to not only be honest but not to disclose what I was about to tell her.  Her advice?  Tell them!  She laid it out pretty easily for me:
1) I would be surprised at the support I would get
2) No one would feel sorry for me. 
3) I would have a lot less stress because I didn't have to hide my symptoms

I still wasn't sure so she gave me the name of the Executive she confided in to get his take.  Again, I would have to rely on him not to disclose anything until I was ready but trying it out on someone I looked up to would be just the practice I needed to tell everyone else.  So I arranged a meeting in Chicago with him.  What a relief it was to hear the confirmation of support I needed plus the promise not to disclose anything until I was ready.  It gave me the confidence to come back, tell my staff, my plant operations team and my boss.  I think most people would be surprised at the support they get and may not realize there is someone they can trust out there.  If you do share your diagnosis and don't get a positive reaction from your employer, would you really want to work there anyways?  I know every situation is different (just like this disease) and finding a new job with Parkinson's creates a whole other set of problems. I've recently discussed a situation with someone where it was NOT in their best interest to tell the employer.  Luckily my experience was like many I've read about, a good one.  You may fool them for a while, but eventually your employer is going to start noticing things.  It might be better for you to control the story.  Feel free to comment and get the discussion rolling!

Need more advice?  Look at these sources for their experiences.

Links to information on talking to your employer

Good article from ADPA on telling your employer here 

Excellent story by a neurologist that has Parkinson's disease  here

NY Times article mentioned in earlier post here

Michael J Fox Foundations advice here

Interesting article from about health on talking to your employer and coworkers here

NPF's advice on talking with your employer here

Working with Parkinson's here and here

Talking with your employer from the Parkinson's hub here

Trying to get a job when you already have Parkinson's here

Job accommodations  here


I've created a links page to accumulate interesting topics found regarding Parkinson's.  Just click on Useful links on the right column.

Up next:  Time to start medication... or not?

The day that changed my life: July 6, 1983 or What causes Parkinson's?

If you are reading this, I'm guessing you or someone you know has Parkinson's.  After diagnosis, one of the many thoughts running through your mind is "how did I get it?"   Unfortunately, there are not a lot of answers, but every year we seem to find a few more sources.  Here's some information on what can cause Parkinson's and what may have caused mine.

Every summer when I was in high school and into college, my Dad and I would take a bicycle tour.  One favorite was the five-day trip to the Thousand Islands in northern New York.  It would take two days to ride up to the islands.  We would spend a day relaxing, then ride the two days back.  One year we found out about a large bicycle rally in Paris, Ontario, Canada.  We organized a 9-day trip for that summer and planned on meeting my uncle and cousins in Buffalo.  The ride up was enjoyable and riding your bike across the Rainbow Bridge in front of Niagra Falls is spectacular.  The rally was fun, consisting of lots of day rides with hundred's of other bikers.  We even took a night ride.  If you've never ridden a bike at night you should try it once, with lights of course.  You may be going just 15 mph, but you feel like you're going 30.   The last and ninth day on the road we were finally headed home and it just happened to be my Dad's 48th birthday.

It feels strange to think of my Dad as 48 years old.  At that moment in time, my Dad was three years younger than I am right now (and in MUCH better shape).  I never think of my parents age in relation to when they were my age.  I was 19 then and he was, well... Dad, not a guy in his late 40's.    My kids think I'm weird for coming up with these random thoughts, but it's stuff like this that keeps me up at night! 

Okay, back to what was supposed to be the last day of the trip.  Dad and I are headed for home after what was a great week on the road however I wasn't feeling my self that day.  My stomach was upset and I was dragging behind my Dad all morning. As the younger one, I am normally up front setting the pace and hopefully blocking the wind.  No, today, I was struggling and riding about 25 feet behind my Dad. We got about halfway home, just southeast of Batavia, NY on Route 5 in the little town of Pavilion when suddenly everything went black.
I'll pause right here to re-ask the question, "so, just how do you get Parkinson's?"  And, "why me?"  While the exact cause has yet to be discovered, there are a few factors scientists have discussed (click to go to the sources):

• Genetics
• Tainted drug use
• Pesticide exposure and also here
• Head injury

And if you don't fall into one of those buckets, you join the Idiopathic Parkinson's or the 'we have no idea why you have it, but you do' club.  Don't worry, you would not be alone, as the huge majority falls into this category.


So for me:
Genetics - I got into a free trial with  23 and me.  The results said I am at a reduced risk to develop Parkinson's from 6 of the 8 measured genotypes (LRRK2, etc). A slightly elevated risk in two of them (SNCA, PARK12).  Until more is learned though we can say genetics is probably not the cause.

Drugs - never touched them, tainted or otherwise

Pesticide exposure - I've used my fair share of Roundup® around the house, but I doubt that's what they are talking about

Head Injury -  Hmmm, now where was I with that story?

My Dad tells me it was the worst sound he ever heard.  A guy in a pickup leaned over to pick something off the floor, wasn't paying attention and drove into the back of me at highway speed.  They found me unconscious in a ditch, my bike partially mangled.  The only thing I remember from the remainder of that day is getting shaken awake under bright lights of the emergency room.  The sheriff needed to know which side of the white line I was on so he knew how to write the ticket.  I don't remember this, but I'm told my response was "ask my Dad."  The next day I woke up with a lot of pain, a bunch of scrapes, some muscle atrophy and a concussion (yes, I was wearing a helmet).  Some birthday this turned out to be for my Dad.  Six days in the hospital and a month recovery at home and I was fine.  Or so I thought.  Unless they remove my brain and look at it under a microscope the Doctors can't tell if the concussion was the cause of my Parkinson's.  Although I would really like to know for sure, I'm not quite that desperate yet to find out.  I'll just stick to my neurologists claim that the concussion is probably it.

Up next:  Telling your employer plus LOTS of links

The DaTscan or how to get arrested at the dump

The DaTscan.  (click for info)

Just in time for my diagnosis, the FDA approved the use of the drug Ioflupane I123.  This highlights the dopamine producing cells in your brain so they can be detected by a SPECT imager.  Sounds complicated, but basically you're injected with a radioactive iodine material that makes parts of your brain glow when the "MRI-like" imager scans your head.  What the Doctors are looking for is a change in the standard 'comma' shape of a group of cells as in this picture below.

It's finally scan day for me. Before you can begin the testing, though, you are first injected with a chemical to block the radioactive absorption into the thyroid.  It's bad enough you have a problem with the nervous system you don't want to mess with the endocrine system too.  After an hour wait, the technician opens a lead-lined box.  Right here you start to think, "am I really going to let you inject that into me?"  It contains a syringe and small bottle of the radioactive juice.  It was a little intimidating I must admit, but I want to see what's going on inside my head so glow me up. The tech slides the needle into your arm, no pain, he's good.  Now I have to wait for it to glob onto the dopamine cells in my brain or about 4 hours. Usually, the wait is over lunch and they say there are no restrictions.  That's code telling me it's okay to have a beer with lunch.  Since I am now radioactive and am not in a lead lined suit I asked if I had to be wary of being near anyone with this burbling through my system. The technician assured me this was a very low dose of radioactivity and it wouldn't be a problem.
After the 4 hour wait, you lie on a table and for 45 minutes a large, very slow moving sensor rotates around your head.  It's pretty open though so this one doesn't push my claustrophobic button.  Actually, the hardest part is staying awake.  You can't move your head during the test.  That's no movement for 45  minutes straight.  Well, it was warm in the room and a fan was blowing over my face.  After about 35 minutes I dozed off and, of course, my head moved.  Start over, do not pass go, do not collect $200, try again, another 45 minutes, ugh!  From then on I always ask for my head to be taped down then, if I fall asleep, there are no issues.  
My DaTscan test result was positive (or negative depending on your point of view.)  I didn't have the comma on one side, more of a round ball.  This took that long list of possible diseases and narrowed it down to basically three: 
Multiple System Atrophy (MSA)
Progressive supranuclear Palsy (PSP)
Or Parkinson's.  
The symptoms of the first two are pretty severe.  No, it was pretty clear now... this was Parkinson's.
I now have my diagnosis, but life goes on.  Things still need to be cleaned, the dog still needs walking, work still needs to be done around the house.  Just because you are diagnosed with something, life does not stop.  The next day, I fill a pickup truck with a pile of scrap and left to drop it at the landfill.  As I approach the scales at the entrance I'm reading the signs and one of them states 'NO electronic devices' allowed to be dumped.  

Crap, most of what I had was wood or metal, but I did have an old VCR in there.  Oh well, if I have to keep it I would just pull it out of the pile.  So I proceed up onto the scales.  I get to the window and the guy working inside asks me to drive around again this time slower.  Okay, I drive around again.  He slides open the window and asks what I have in the back of the truck.  Crap again, somehow they figured out I have the VCR.  I try to tell him what I have, but by the time I get to the VCR he is not listening.  He tells me to stay where I am and slams the window.  I see him get on the phone and all I can think is "wow, they are serious about no electronics!"   A minute later here comes a pickup truck that skids to a stop in a cloud of dust in front of this little building.  What looks like some type of Supervisor exits the truck and runs into the building.  I can see him grab a binder and start flipping pages.  He then slides the window open and states "I've called the Sheriff and the County Executive, do not move from that spot."  Then slams the window shut and gets on the phone.  As you can imagine, I am now freaking out.  I can see him talking on the phone as a minute or two passes, then holds the phone to his chest and slides the window open.  "I'm not supposed to ask you this but have you had any medical procedures lately?"  "Procedures, no, why are you asking?" I stuttered.  "Because something has set off the radioactivity alarms". Ding ding, ding.  "Ahh, yes, I had a study done yesterday and was injected with radioactive iodine," I told him.  He then made me park the truck and walk onto the scales alone.  "Yep he said, it's you."  At that moment, I felt like I was glowing a neon green.  My next thought was the conversation I had with the technician that injected me.  "Very low dose," he said. "Nothing to worry about," he said.  Not quite low enough to keep you from getting arrested at the dump apparently!  I did learn something new though, who knew they had radioactivity detectors a the dump? 

Next up: The day that changed my life, July 6, 1983

On becoming a radioactive lab rat for a Fox or PPMI

The Michael J Fox foundation has put together a tremendous study to look for something in your body that changes as Parkinson's advances. A biomarker.
  PPMI - Parkinson's Progression Markers Initiative -(link attached) You should look into doing this - even if you're reading this and don't have Parkinson's - they need you. 
So as you probably figured out, I decided to join the trial.  If you read my previous posts (you did, right?) you know I had some hesitation.  But the opportunity to be seen by a top neurologist - for FREE - swayed me. Before I describe the PPMI appointment with my new neurologist, Dr. Richard, from the University of Rochester, I need to backtrack to the opening evaluation. 

How many times has this happened to you?  The car is making a strange sound.  It goes on for about a week so you make an appointment with the repair shop.  You finally bring it in to be seen and.... nothing, the car runs and sounds fine. No strange noises.  Well, that's what happened to me during my initial visit to my new neurologist. Frustrating!
It's been a couple months waiting for this appointment. Nothing new on the symptom front, little of this one day, little of that the next. Basic symptom roulette.  We went through the normal battery of tests.  Touch my finger, open and close your hand as quick as you can, tap your heel, all the basics.  It's not that I want to have a neurological problem but when you're seeing a specialist you would kind of like them to at least see some symptoms that you've been seeing.  I had little to no tremor and no rigidity.  She did see some slowness my left hand so at least there was that.  I have no idea why my symptoms abandoned me that day, but I still wanted to ask the question, do you think I have Parkinson's?   She beat me to it and said if it's Parkinson's it VERY early. Hmm, Mr. overly observant strikes again. The DaTscan would hopefully answer a lot and was scheduled along with my first study visit. 
I've always liked physical and mental tests.  No, not the kind of tests you got in 10th-grade geometry. I like the ones that measured a particular skill or attribute like eyesight or memory.  So this trial was right in my wheelhouse.  I arrived on study day to be disappointed that I would have to wait another month for the DaTscan with the radioactive injection.  There was a problem acquiring the juice they inject that lights up parts of your brain. Sorry, didn't mean to get all technical on you there, but, once again, more delays.
The study went on, though, and started with the fluids: blood, urine and, of course, spinal.  I was nervous but as it turns out for nothing.  They numb up your lower back then insert a small needle and basically tap you like a keg.  I actually told the Doctor I had no idea when she started and when she stopped.  I'm sure a lot was her technique, but it was a big relief.  The rest of the testing was fun, well... kind of.  It started with lots of questions to answer and to self-rate my levels.  Sleeping, tremors, walking, getting dressed, turning in bed and about 30 more.  Your basic, as it turns out, Parkinson's measurement scale (MDS-UPDRS) to determine the severity of your symptoms. Here is a link to the actual questions. 

 Then the memory tests started.  I was asked to remember five words then repeat back as many as I could remember:  face, velvet, church, daisy, red.  Now quickly, because you're on a timer, name everything you can think of that starts with the letter F.  Now name as many fruits as you can think of in 60 seconds.  On this one, I wasted the bulk of my time trying to decide if a tomato was a fruit or a vegetable.  There was also a cognitive test for executive function.  The nurse would say a sequence of letters and numbers and you have to repeat them back rearranging letters in alphabetical order then numbers lowest to highest.  For example,  they say 4F2W and I would have to repeat back FW24.  They keep adding numbers and letters until you get it wrong a couple times in a row. Have someone ask you this one out loud: 8AF3J71G.  Go ahead, I'll wait.... My stupid competitiveness would always make me try and beat my previous score.  These tests were supposed to be fun, not stressful!   You are almost done with all the tests and you think "that wasn't so bad," and then they ask one final question. Now I'll ask you the same one, without peeking up above, repeat back to me the five words I asked you about at the beginning of the test.  At that point, I remember staring out and thinking "What five words?  Oh, uhh velvet, something, something...." There also were some other tests for sleepiness and depression/anxiety mixed in, but the one I found most odd was a picture of a lion, a camel, and a rhinoceros.  I was asked to identify them.  I did, then told them, "if I ever come here and cannot identify them, for God's sake, DON'T LET ME DRIVE HOME!"  The neuro came in to do some quick physical tests to rate my levels and then you were done. If they could have done the scan it would have been about a 7 hour day, without it the testing takes 3-4 hours.  All in all, it was actually pretty fun, and well worth the time.  If you're interested in all the tests they perform or are just a geek like me then look here. 

Next up:  The DaTscan or how to get arrested at the dump