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?