I Have Too Many Blogs!

Those who know me best are laughing the loudest! 

I have four blogs. Is that unusual? My family seems to think so. But there are several topics that I write about, and I am working on two books. 

My main concern about spreading my writing too thin is that all of these projects are getting neglected.

Anyway, today I did an episode of "A Day in the Life of Karen's Feet". This is the fourth instalment, and I posted it on the wrong blog! I am sure that my inattention to detail is mostly due to the brain damage caused by Parkinson's disease.

So here is the video: 

And my blog titles and addresses:

     My Life with Parkinson's  mylifewithparkinsons.blogspot.ca
     Karen's Critters  karenscritters.blogspot.ca
     Random Thinks I have Thunk thinksbykaren.blogspot.ca
     Answers are all in the Book  answersareallinthebook.wordpress.com

A Day in the Life of Karen's Feet, 1:00pm

Today has been a day of dyskinesia. Dyskinesia is a side effect of Sinamet, the standard drug prescribed for Parkinson's disease. I have been told that the involuntary movements of dyskinesia  resemble a potty dance. Sinamet is effective in getting rid of the tremors that Parkinson's is known for, but it is hard to say whether or not the cure is worse than the disease. Dyskinesia  is quite painful and makes voluntary movement  difficult.

I had planned to make a video of my feet once an hour for a day. I don't know why, but even though I don't work and don't really go anywhere, I still have trouble getting stuff done. Today for example, I seem to have spent the whole day trying to get these videos to play. I will maybe post one or two more today. Right now I am extremely dyskinetic, so typing is a challenge.

A Day in the Life of Karen's Feet 9:30am

When I took this video this morning, I didn't think that my feet were moving much, but that just goes to show how "normal" my Parkinson's symptoms have become to me. Watching this video, I am quite surprised to see not only how much my feet were moving, but also how much my whole body is twisting with dyskinesia.

Dyskinesia is the nonstop, involuntary dance that is a side effect of  Sinemet (brand name of levodopa).  I have been working with my neurologist since I was diagnosed with Parkinson's disease in 2005 trying to find just the right combination and dosage of medications that will have the most therapeutic benefit with the least possible side effects. It has been a major case of Goldilocks Syndrome.

A Day in the Life of Karen's Feet

Here's an idea that I got just by looking down. My feet tend to represent what the rest of me is doing.

Now, just because today is the day that I have decided to show what my feet are doing every hour, they have decided not to show the abnormal behaviour that is normal for me: which is of course to "function within the parameters that I have come to accept as normal."

This might get boring. Stay tuned.

Parkinson's is such a Weird Disease

Something that people unfamiliar with Parkinson's might not know is that the symptoms are constantly changing. I don't mean from one day to the next, I am talking about from one hour to the next. Most patients, especially those who have young onset (younger than 60) version. Often, the changes from one symptom to the next happen so quickly that an observer might think that it is faked. If only! My days usually revolve around several different symptoms, with a bit of "on" time most days, when I get a bit of a break from pain and disability.

The crazy thing about "on" time is that my obsessive/compulsive nature kicks in then. I try to do a little bit of housework, but soon find myself scrubbing baseboards with a toothbrush. Or I will start to organize stuff. My family hates that, because I will either rearrange the kitchen cupboards, and then forget where I put stuff; or I will sort though stuff (a task requiring the dumping of said stuff) and then when I have it all spread out somewhere, my "on" state suddenly vanishes, and I can't finish the task. I usually end up either leaving it spread out, or I scoop it all up so that next time will be even more challenging.

Once my "on" time is gone, I go into some sort of "homing" state, and I get obsessed with needing to get to my bed. This drives Derek nuts! If we are somewhere other than home, I need to get home. If I am home but in another room, I have to get to the bedroom.

One of the most painful of my symptoms is dystonia.

This is a video I recorded myself of attempting to walk with one foot cramped from dystonia. I never know how long dystonia will last, or how many body parts will be affected. When my whole body is affected, I twist up like a pretzel. It could last ten minutes, or several hours. As I say in the video, I have cracked bones in my foot by trying to walk with dystonia.

Another symptom that I have frequently is bradykinesia. This is a stiffness that makes any movement very difficult. It feels like I am encased in wet cement, including my brain.

Most people associate Parkinson's with dyskinesia: the involuntary swaying movements that Michael J. Fox made famous. I also get dyskinesia almost everyday. What many people don't know is that dyskinesia is actually a side effect of levodopa, which is the main medication prescribed for Parkinson's. Figuring out the dosage is a balancing act that most of us never master, because it is always changing.

Parkinson's is a fascinating disease to study, even when studying it from the inside.

Update

Thank you for all the prayers and encouraging messages. I have received so many requests for updates, my apologies if I don’t get back to each of you individually. Derek is feeling much better. The doctors at the ER determined that he passed out from low blood pressure and iron deficiency. I am grateful to Derek for saving these episodes for church, where there are doctors and nurses who were just sitting there anyway, and lots of friends to help with crowd control.

As for me, I have been having fewer extremes of Parkinson's symptoms, which is good, except that I haven't had much of that energetic "on" time that I was having for an hour or two almost everyday. Seems like I can either have days with extreme highs and lows, or this foggy malaise all day.

 

But we are all hanging in there.
Not by a thread, 
Nor a hammock in the shade, 
But by a rope.

It's just a rope,
But we are hanging on tightly

Because God has the other end.

When Your Caregiver Needs Care

    My husband, Derek and I just spent our 29th wedding anniversary in a hospital room. This is not the first time we have been there, done that, but there was a major difference this year. Derek was the patient.

    Anyone who knows Derek knows that he can fix almost anything, figure out how to assemble just about anything without resorting to the directions, and he somehow knows how to do almost everything. Technology doesn't scare him at all, in fact - he has that somewhat annoying ability to make gadgets work just by turning them on. I would be lost without him, literally - I have no sense of direction. For the last 29 years, whenever I can't get something to work, I know that eventually Derek will be home and he can fix it.

      So it was mind-numbing to find out that this man who has always been so strong for me has cancer. How can that be? He has always been so healthy! I don't think he has taken more than 2 or 3 sick days from work, ever.

     Seeing him on a hospital bed, looking frail was the most bewildering experience I have ever been through. I don't like this role reversal - not one little bit!

     In the last ten years, I have lost both of my parents to cancer. These losses were devastating, but it has been many years since I have been dependant on my parents. They both died much too young (Mom was 61 and Dad was 70), but you expect your parents to die before you do.

     I know that I am being morbid and pessimistic and looking at the worst case scenario - that I could lose my husband. Derek has had a much more positive attitude through this whole ordeal. The kids would rather talk to him about his health than me. He says he is just fine, and hopefully he will be one of the 5% of patients who survive pancreatic cancer. He may yet outlive me.

     So it could happen that we spend more anniversaries in hospital rooms, and maybe we will take turns being the one in the bed. Or we could both be patients. I might be writing about our 50th anniversary, and I will keep you in suspense. Wait for it!

0.001% Chance that I don't have Parkinsons

I hate being a medical anomaly! I have often had the opposite effect of what medical treatments are supposed to have. This is nothing new. Even when I was a kid, medications like anti-histamines that made most people sleepy would keep me up all night. Caffeine, on the other hand, would put me right to sleep.

I recently had the battery to my deep brain stimulation implant removed. (Labelled as a 'pacemaker' on the diagram.)I remember being told before I had the surgery to install the DBS that if I ever wanted to, I could have it removed. I sure didn't think that would ever happen. I was very hopeful that it would stabilize my wild "on and off" swings, and slow down the progress of the disease.

Since there is no medical test to definitively diagnose Parkinson's, and there are other conditions that may cause Parkinsonian symptoms, I asked my neurologist what the odds were that I didn't have PD. I don't remember the exact number, but it was a minuscule percentage.

My brain programmer Renee said that she could see a difference when the implant was turned on, but I really couldn't tell. And as I mentioned a couple of blog entries ago, it started to give me tremors.

I had just the battery removed; the wires are all still in place. Having the wires removed is a much more complex surgery, and the only neurosurgeon in my province qualified to do this surgery is the doctor who put mine in, and he has since then retired. Also, this way if I ever want to try  DBS again I only have to have a battery installed.

Well, since then, I have been gradually weaning myself of Levodopa, the major PD drug that I take. I have actually been doing better with the lower dose. I tend to have dystonia (severe muscle cramps and spasms) and bradykinesia (inability to move) when I am low on Ldopa, and I get dyskinesias (involuntary dancing, swaying movements) when I have too much. Dyskinesia is actually a side effect of Ldopa.

So I asked my neurologist last week if it is possible that I don't have Parkinson's after all. I have asked this question a few times over the years, and he has always been emphatic that I do, even though I have been an enigmatic patient. I don't think that I felt flattered when I found out that my name comes up frequently at their movement disorder staff meetings.

I will keep you posted.

• emphaticem

• emphatic

• emphatic

But you look so healthy!

The vast majority of my friends, acquaintances, and family members (besides the ones who live with me), have never seen me during a dystonic event or severe dyskinesia. It is hard for them to comprehend how many hours a day I am severely disabled. Even most of my doctors have never seen me at my worst.

The medical jargon for the stage of Parkinson's disease I have been in for the past ten years or so is "off and on". When my friends see me at church or out of the house for some reason (usually a doctor's appointment), they often say something like,"You are looking good," They kindly don't mention the 100 plus pounds that I have gained as a result of immobility and injury.

My hubby and kids think it total vanity that it takes at least an hour and a half for me to get ready to leave the house. I confess that I use way more make-up than I used to. I have always loved eye-make up but rarely used foundation, blush, or powder, I was fortunate to inherit my grandma's porcelain smooth skin. don't know whether my  splotchy skin is the result of the weight gain or a symptom of the disease, or if it is just normal aging. My grandma's skin still looked beautiful when she was in her 80's. It takes me a lot longer to do my make-up than it used to. This is partly because I am trying to cover up the splotchy skin, and partly because putting on eye liner and mascara is a hit and miss endeavor, and I often have to clean up the results of my tremors or dyskinesias. 

I am often asked if I am having a good day. While some days have more good hours, I don't live one day at a time. I live one hour at a time. The transformations from one symptom to the next usually happen very quickly, They can be very unpredictable, but I often have a window of "on" time sometime between 11:00 am and 2:00 pm, I consider this a godsend, since it means that I can attend church, if I have arranged a ride and I have enough on time before church to get myself ready.

I don't share this information to invite you to my pity party or to get attention. Parkinson's disease is actually quite fascinating and most people don't know very much about the disease, especially the young adult onset version of the disease. Most people have seen grandparents or parents living with the constant tremors and freezing incidents so common in elderly PD patients. When they see someone like me walking without a limp one minute and then suddenly fall down and not be able to get up, they might think I am faking it.

Remember the news feeding frenzy when Rush Limbaugh called Michael J.Fox a charlatan and made a mockery of Parkinson symptoms? This was in 2006 and I had just been diagnosed. I remember being furious at the ignorance, not only of Limbaugh, but of about 80% of the social media comments that followed.

Unfortunately, Michael J. Fox is still having to face idiots in social media. This You Tube video by someone calling himself David J. plays footage of Michael skating. I understand this perfectly - it has to do with the nature of brain injury common with young adult onset. There are some activities that, if you were good at them before PD and you enjoyed them, your brain might be able to compensate and allow you to do these activities during your "on" time. For me, I love to dance, and I was thrilled to discover a few years ago that I can have moments when I can dance well enough to be an embarrassment to my kids.What more could I want from life?!!!

DBS - End of the Saga

DBS (Deep Brain Stimulation) has had an almost miraculous effect on many people with Parkinson's disease. I am not one of them.

I had a DBS unit surgically implanted April, 2008. It was an ordeal not for the faint of heart. The surgery was done in two stages. First, the wires were buried in the subthalamic nucleus (STN) deep down into my brain stem through two dime sized holes in the top of my skull.with the wires tunneled across my head, behind my left ear.This was an eleven hour surgery for which I had to be awake so that I could tell the doctors which part of the body was tingling with electrical current. They also had to examine my eyes every now and again, which would be rather difficult if I were asleep.

One week after the first surgery, I was back for part two: the battery implant. There is no room in the brain for this gizmo,so the battery needs to be implanted in the chest. I got one of the old style batteries that would need to be replaced surgically when it runs low.. I was told that it might last for two years. Nine years later it was hardly used.

The goal of DBS surgery for me was to even out my daily on/off cycle. I had high hopes for a good outcome. Turned out to have the opposite effect on me. My dystonia (the excruciating muscle cramps and human pretzel syndrome) got worse, the dyskinesia (involuntary dancing), and the bradykinesia (where every movement feels like trying to walk through a cloud of gelatin. Renee -my first programmer - called it 'wonky'.) all got worse and lasted longer. Fortunately my 'on' hours also improved. When I was on, I felt almost normal. A lot of people only ever saw me in this state, because I tried to plan my day around my on times. Even my family doctor rarely saw me in the other stages. I brought my laptop to an appointment once and showed him video of the other stages. He was quite surprised, especially that I was cycling through all of these states every day.

Nine years ago, I threatened Renee that if the DBS made me worse instead of better I was going to move in with her. Her husband was the surgeon who put the damn thing in my head. Unfortunately, they have both retired now. I met them at a Parkinsons convention a couple of years ago. I told Renee that I had turned my DBS off, and she was rather horrified. She asked if Steve (her replacement) knew about this. I have been too afraid to ask if she confronted him to ask why he would let me turn it off.

While writing this update, I noticed that my 5th chapter of the saga for some reason had never been posted on this  blog, so I just added it and it may be out of order. Here is the missing link.

The DBS has never made a significant improvement in my Parkinson's symptoms . About three years ago I was filling my pill trays for the week, and my hands were shaking so much that it was difficult to pick up the pills. Turning my DBS up and down made no difference, so I tried turning it off (something Renee had told me to never do!) and the tremors stopped immediately. When I turned it back on  -- and the tremors came back. I tried turning it on and off a few more times,with the same results each time.

Since then, I have kept the unit turned off except to experiment now and then to see if it would do any good for extreme symptoms and for on times to see if they would last longer. It didn't seem to make any difference.

So now I decided it was time to call it quits. Last week I had the battery removed. Nine years ago, the battery implant surgery was a difficult ordeal, especially for the first week after the surgery. I was hoping that the surgery to have it removed would\be easier to recover from. No such luck. I have not been sleeping well, so all day I have been falling asleep and having extreme symptoms that are lasting for hours.

The surgeon left the leads in my brain and the wires tunneled down to my chest. He secured the ends in the chest cavity in case I ever want it hooked back up again. Now I am feeling the wire tubes moving around. I wonder if I made the right decision.

Parkinson’s Surgery Update 8: Life 5 months after surgery

I realize that it has been awhile since I’ve written an episode of the continuing saga of my life with Parkinson’s disease. I can’t believe it has been almost six months since my Deep Brain Stimulus implant surgery.

To recap: on April 10, 2008 I underwent an eleven hour surgery to implant a deep brain stimulator devise somewhere deep in my brain. A week later I had a second operation to implant a battery under my left collar bone, and tunnel the wires just under my skin to connect the DBS device with the battery. The decision to have this surgery was not made lightly, and there was a thorough screening process to determine my suitability as a candidate. In Manitoba (Canada) we have a world class surgical team to do this operation, but because it is considered to be elective surgery, they are only able to do one or two a month. On my first trip through the screening process, I was deemed to be too emotionally stressed out to undergo brain surgery; which has a high risk of post operative depression. I was sent to the Psych ward, where I attended two group therapy classes to learn to deal with chronic pain. The phrase that I remember hearing frequently was “Live around the corners of the pain.” I’ll let you know then I get that one figured out.

If you are new to my ramblings, I have published a seven part series to chronicle my journey through the surgical experience. I apologize for the parts being out of order – I submitted the first five or six episodes on the same day, and had some technical difficulties. I was also very groggy for a couple of weeks, so my first submission to Triond had to be declined and rewritten when I was of sound mind (or at least what passes for sound mind).

I was hoping that by now I should be reporting that the surgery was a great success, that all of the pain was worth it, and that I am now back to attending church, doing my own housework, and possibly even getting my driver’s license back.

The best change from the DBS implant is that I have very little dyskinesia , (involuntary swaying , which my sister has told me looks like I am in desperate need of a bathroom. Dyskinesia is  a side effect of medication. However, I am having a most difficult time trying to reduce the dosage of the drugs with the worst side effects.

The worst result has been a return to the symptoms that I experienced before I was diagnosed with Parkinson’s – my whole left side is dragging uselessly for several hours every day. The most painful symptom is dystonia – excruciatingly painful muscle cramps which twist my body into a pretzel, making it almost impossible to move at all. Twice now I have been on solitary walks when a fierce dystonic cramp started when I was still a half block from home.

I’ve been a bit of a hermit for the last month or so, mainly because it is painful to walk and I never know when a dystonic attack will show up and I will be stuck somewhere. They have hit me while grocery shopping, causing me to rely on staff (or a friend who is in the store by Divine Coincidence) to pick up the rest of the stuff on my list and ring it through for me. Fortunately we live in a town small enough that most of the grocery stores’ staff knows me.

I am still having a very difficult time reading, since I am still taking the medication that makes it hard to concentrate enough to read. A pleasant surprise has been that God has graciously restored my ability (very important since this computer is my link with the outside world – and also because my handwriting has become illegible even to me). I have also discovered that I am able to read off the computer screen much more easily that out of a book. I am slowly learning that the computer is more than a glorified typewriter, and that Google is amazing! All this I wouldn’t have had time to learn if I had to go to work every day. God faithfully keeps His promise to take bad situations and make good things happen as a result. Right now I am on a character building program. The Bible says in Romans 5:4 that:

“We also rejoice in our sufferings, because we know that suffering produces perseverance;  perseverance, character; and character, hope.  And hope does not disappoint us,”

Walking Test -- Failed!

(Videos are courtesy of the Movement Disorder Clinic in Winnipeg, Manitoba, Canada. Used with permission)

These videos are part of the routine check-ups to test my deep brain stimulator (DBS), surgically implanted in 2008. I have been put through this barrage of tests five or six times. I did the same sets of exercises, repeated four times. My DBS programmer Renee called this battery of tests our office calisthenics. In the office, I had to put pegs into peg boards, press buttons as fast as I could, stamp my feet while slapping my thighs, keep my balance while she came behind me and pulled my shoulders back, and then go out in the hall to do this walking test.

1. Off medications/ stimulation on:

In this first video, I am off my medications but my DBS is turned on.

 

2. Off both:

Then, they turn off my DBS and repeat the whole test again. On the day that these videos were taped, I was not able to do the second battery of tests. This is me giving up. My body is doing its human pretzel interpretation, also known as dystonia. My toes are curled under, and they had to rescue me to keep me from falling. I have had several falls at home during dystonic episodes. One time I broke a bone on the top of my foot. I gave permision for my Xrays from that session to be used in teaching physiotherapy students.

3. On medication, DBS off: 

For the third round, I have taken my pills with carbonated water (to make them take effect faster). This video was taken about twenty minutes after the second one, when I couldn't walk!

4. On both:

For the fourth and final round, they turned my DBS back on.

I have a controller for my DBS that allows me to turn electrical leads on the left and right sides of my brain up and down within the parameters set by the technician at the last appointment, and I can turn the unit off and on. I was sternly warned to never turn the unit off.




Three years ago, I was doing up my pill trays for the week, and my hands were so shaky I couldn't pick up the pills. As a last resort, I turned my DBS unit off. Immediately my hands stopped shaking. I turned it back onand my hands resumed shaking. I turned it back off and left it off. I have turned it on only to test now and then, It has never made my symptoms better. I have been keeping my appointments with my neurologist and my DBS technician every three or four years, and they agree that the DBS is not helping. Next week I have an appointment with a neurosurgeon to discuss having the battery removed.

Parkinson Humour

• Parkinson Humour – Because if you can laugh at yourself with Parkinsons, really laugh at the potentially humorous parts of this nasty disease, then even if a cure is not found in your life time, you’ll still be laughing all way to stage six. There is a sixth stage that no one told you about?

• Stage Six: At a Parkinson support group meeting I was talking about the five stages of PD; and a fellow asked what happens at stage six. I said that stage six is the one where they hand out the halos and the.white robes. So if you can laugh at yourself with PD, you will still be laughing when you and God are kicking back, sharing a huge bowl of extra buttery popcorn while watching your funeral on the big screen multidimensional TV in Heaven.

• People With Parkinson's don't do buffet: Or,at least they shouldn't! And yet, every Parkinson Conference that I have attended has included a breakfast, snack, and lunch – all served buffet style. I pity the cleaning crew.

• People With Parkinson's still got Rhythm:  I’ve still got ma groove thang goin’ on, I just have to find music that matches my dyskinesias. (The sound track to the movie Footloose comes close. The original version, with Kevin Bacon. Who was in the movie JFK in 1991 with Dale Dye, who was in Casualties of War in 1989 with Michael J. Fox. Who has Parkinson's disease. Like me! Three degrees of separation!)

Today was not a good day

Living with Parkinson's disease is never boring! That is the only predictable part of my life. It is never the same disease from one day to the next, or even one hour to the next.

Today was not a good day. I had a severe bout of dystonia - muscle cramps, twisted torso, hands and feet curled inward. It lasted about three hours in the morning. Fortunately my wonderfully handsome and handy hubby made me breakfast in bed before he left for work. He also had to make supper because I also had a nasty bout of bradykinesia - inability to move - that started around 4:00 and lasted until around 8:30. I don't think I had any "on" time today. Most days I get at least an hour of almost pain free existence. Not today.