Awake again at some ungodly hour; it's almost 5:00 a.m. and I've been awake for 3 hours now.  i've heard that some large percentage of Parkinson's patients suffer from insomnia, but I wonder if it's the disease or the medication that causes it.  Probably a little of both.  It's so quiet; I wonder how many other Parkies like me are awake now? So strange; I never was an early riser until now.  The good news is that I won't accidentally sleep through "Sunday Morning"!  Always a silver lining.  Well, I guess i'd better go take some dangerous drugs now...

Getting excited about DBS, now!

Woo hoo! I just found out that Healthline has picked my blog as a candidate for the 2012 health blog of the year.  If I win, I get $1000, which I would use to get myself and my husband to the Parkinson's Unity Walk in NYC in April if I'm up to it.  If I'm not up to it, I will donate half of the money to the Michael J. Fox Foundation for Parkinson's Disease Research and put the rest towards a family vacation when I am up to it.  Actually, I'm just thrilled to even be nominated, so I'm content right now.

I find that I'm looking forward to DBS surgery more and more.  Not to the surgery itself, of course (although that is very interesting), but to how I'm going to feel afterwards.  DBS is NOT a cure, and does NOT slow the progression of the disease, but it can be like a temporary miracle for those of us who struggle with PD every day.  Sometimes it's difficult, tiring, or even painful to do the simplest things, and most of the time I can't even read a book comfortably.  So, Creator, if you're listening, here is my wish list of things that I hope and pray that DBS will do for me.

1.)  That it will help me to keep working for at least a couple of years, so that I can get my 30 years in (I have 28 years now).
2.)  That it will even out the peaks and valleys in my PD symptoms, so that I can plan my activities a little better.
3.) That I can cut down on my medications and thus avoid the more severe side effects.
4.) That it will help me sleep a little better.

And one more wish, if at all possible, my dear Creator:

I would like to be able to dance again, and not just for one dance..

A whole new me?

I am scheduled! I have a surgery date now.  Well, dates, actually; it takes more than one operation to get this DBS system up and working.  My pre-op appointment which includes an MRI and an EKG as I understand it, will be on January 15th.  On the 24th of January, I get my head shaved and several metal pieces screwed into my skull.  These "fiducials" will guide the surgeon in finding the appropriate area of my brain to install the electrodes.  After they are installed, it's back to the lab for a CAT scan.  This CAT scan image will be combined with the MRI image to provide a brain "map" for the surgeon with everything lined up with the fiducials.  They will send me home that night with a turban of gauze, and when I come back the next day, (OFF medication) the real fun begins.  Holes will be drilled, electrodes will be implanted, fiducials removed.  I will have to spend a night or two in the hospital, then I can go home for a few days before the next stage; implantation of the stimulator control box in my chest and connection of the electrode wires to it.  There will be a break for a few weeks, and then the magic moment: they will turn the stimulator on, and I will get to begin my new life.

I can hardly wait! It sounds like a lot of discomfort and inconvenience to go through, but if I can cut down on the meds and feel better through the day without the fluctuations, it will be COMPLETELY worth it....

Why they call us "patients"

I knew that it would take time to travel from where I was back August to DBS surgery, but I had no idea it would take this much time.  The referral from my neurologist went out on August 14th, but I wasn't scheduled for the screening until November 7th.  My last screening appointment was on November 12th, and the doctor said that since the Movement Disorders review Board was meeting on November13th, I should be getting a call "soon" to let me know what the decision of the board was and to schedule an appointment with the surgeon.  Well, the weeks went by and nobody called, so I called them and found that my test results hadn't even been presented to the board yet.  So, after the next board meeting, I started calling every other day until finally I got through to someone who knew what was going on and scheduled my appointment with the surgeon.  I told her I guessed that that meant I had passed the review board's scrutiny, and she laughed and said "yes".   I guess I kind of knew that, but it would have been nice to get a reassuring phone call about it.  The next step will be to go see the surgeon next week and hopefully it won't take too much longer to get this surgery done and get on with life.

Sigh.... I guess this is why they call us "patients".

Interesting times

The last few days have been very interesting.  If I had any lingering doubts that I have PD, those doubts are gone now.  Wednesday and Thursday I spent a few hours doing evaluation tests at the Movement Disorders Clinic at Stanford Hospital in preparation for Deep Brain Stimulation (DBS) surgery.  Wednesday was fine; even a little fun.  I was taking my medications as usual, and I breezed through the cognition tests in record time; in fact, everyone was kind of surprised at how well I did on them.  I was then recorded on video doing various physical tasks; walking, tapping one foot, then the other, making a fist and then opening the fingers repeatedly, tapping two fingers together, etc.  The usual PD "hokey pokey", though a little more extensive.  All of this resulted in a score of 12,  which the doctor said showed that I was almost normal (lower numbers are better, though I don't know the scale).

Thursday was a different story.  I had been off of Requip (ropinerol)  for almost 24 hours, and off of Stalevo, Zelapar, Amantadine and Sinemet for about 14 hours.  I was a wreck.  I could barely walk because of the cramping in my feet and the shakiness, muscle rigidity and weakness in my legs.  I felt awful; the pain from the muscle tension was almost unbearable sometimes.  Bob had to hold me up on one side while I used a cane on the other side in order to walk.  I was tested and recorded on video again.  This time my score was 33.  So, I have a difference of 21 between medicated vs. unmedicated me.  That is significant enough to justify going ahead with the surgery, according to the neurologist.  The idea is that if a patient responds well enough to the medications, then they will also respond well to the surgery.

I'm still recovering from Thursday; it's surprising how this perturbation of the medication schedule caused ripples that I'm still feeling 3 days later.  All I can say is, thank God for the smart people who developed these medications!  I can only imagine the suffering that Parkinson's patients went through before these meds were available.

I still have one more day of tests, this time with a neuropsychologist.  That will be on Monday.  After that, it's up to the Movement Disorders review board; they will decide whether I get the green light for the surgery or not.  I sure hope they approve me.  I'm ready for the surgery right now, especially since the neurologist says she can guarantee me at least a 50% reduction in medication after the procedure.  I've never heard a doctor give a promise like that before!

Today I start on a new path; or maybe a new branch of the path that I was already on.  Today is the first of 2 days of evaluation and testing designed to determine my eligibility for Deep Brain Stimulation (DBS) surgery.  I have come to the point where I feel that this is the best alternative available.  It's not a cure, but I know a lot of Parkinson's patients who feel that it has transformed their lives.  In fact, one of the people in my support group is doing so well after the surgery that he takes no medication at all!

How does a person get to the point that they feel that having holes drilled in their head and wires run into their brain to deliver small electrical shocks is a good idea? Here's what happens:

They notice a series of odd symptoms which eventually lead to a diagnosis of Parkinson's Disease.  The diagnosis is confirmed by a trial of dopaminergic medication. The positive response to the medication means that Parkinson's is most likely the culprit.  The person becomes a patient. The good news is that the medication is effective and the disease is controlled for several years.

Gradually, the disease progresses.  The patient goes to the neurologist for new or increasing symptoms.  Medications are added, dosages are adjusted, frequency of doses are increased.  Side effects become more and more difficult to balance with medication effectiveness.  The patient starts to experience "off" times, where the medicine seems to stop working, and sometimes when the medications are working, the patient finds that their body is moving on its own, like a marionette being jerked around by invisible strings.  This dyskinesia is preferable to the Parkinson's symptoms, but can still be distressing nonetheless.

The patient knows that things are not going to get any better.  So, when an opportunity is presented for a procedure which will allow a near to normal life with less medication, drilling a couple of holes and running some wires doesn't seem like such a big deal.

This is where I am now, which is why I'm really looking forward to having the surgery done.  First, I have to get through these evaluation tests.  I sure hope I get an "A" 

Walk on the beach anyway.

I've felt hideous for the last few days.  My body temperature fluctuates; I'm always too hot or too cold.  The dyskinesia twists my torso back and forth, and now my lower back is objecting LOUDLY.  l have trouble sleeping and trouble concentrating; last night I lay in bed until after midnight, with my left foot and leg cramping and twisting up all the way to my thigh..  I'm weak and shaky and when I'm "off" my meds,  I have the worst bradykinesia (slow movements) I've ever had.  However...

We went to the beach yesterday anyway.  I figured I wasn't going to be feeling significantly better the next day, and I didn't want to miss the beautiful beach weather.  My husband looked at me like I was crazy when I said that, but we went ahead and packed up the dog and some drinks and stuff and went to the beach.  We had a lovely time, and even though I felt a little worse physically, my soul was peaceful and my mind refreshed.  I love it when I just do what I want, regardless of what PD wants...

Sometimes you have to stop waiting until you feel better, and just go to the beach anyway.

I'm not worried.

My "Dday" (Diagnosis Day) anniversary just passed a couple days ago.  This year, my thoughts are all about DBS.  I'm really not worried about the operation; the risks are few and the payoff is potentially huge.  Why then am I so weepy?  I guess I just resent having to do this at all.  That's not right, though; I should be glad that this option is available now.  I AM glad.  I just wish I didn't have to have a couple of holes drilled in my head in order to feel normal.  Here's a list of "plusses" to DBS surgery:

1.) I can finally say "I can't come to work tomorrow; I'm having brain surgery".  I've always wanted to say that.

2.)  I won't have to go through that scanner thingy at the airport anymore.

3.) I can call myself a "Bionic Woman".  Just don't ask me to run in slow motion.

4.)  I can pretend to be in that episode of Star Trek where Spock's brain is removed and they were making his body work with a remote control device.

Well, all of that is on top of the main advantage; cutting down on medication and feeling normal again. A lot to look forward to!

DBS Evaluation Appointment Made... Finally

Stanford Hospital finally called me and gave me the dates and times of the 4 appointments I apparently  need to assess whether I'm a good candidate for Deep Brain Stimulation (DBS) surgery or not.  I have 2 appointments on November 7th, and 2 on November 8th.  The first one is just a consultation; I think this is where I get a chance to ask my questions.  There are lots of little things I want to know about, like:  what are the risks and percentages? How long is the recovery time typically? Do I really have to shave my head?  Can I still go swimming (after healing)?  etc., etc., etc.  The next 3 appointments are to assess my symptoms , I gather.

I hope I "pass" these tests, whatever that means.  I know that people look at me and think I look fine most of the time, and I AM fine most of the time, but in order to stay that way, I am now having to take medication every 2 hours.  The side effects are starting to catch up with me, especially the dyskinesia (unwanted, uncontrollable movements ala Michael J. Fox).  Also, the effort necessary to do ordinary things and still look "normal" is becoming exhausting.  I'm looking forward to being able to cut down on my medications or maybe even do without them entirely for awhile.

DBS is not a cure, I know that.  It doesn't last forever; I can see that for myself.  However, if I can improve my quality of life as dramatically as DBS reportedly can, why not do that while I'm still relatively young and otherwise in good health?  It could give me years more of normal or near normal functioning; I could keep working and get my full retirement (for which I am eligible in about 2 and a half years).  On the other hand, it is BRAIN SURGERY, and those two words together make me a little nervous.

I take heart, though, when I hear and read about others' experience.  Case in point: my friend Sherri at Parkinson's Journey (see my blog list).  Sherri is just one of the toughest PD fighters there is.  Her positive attitude is hard to beat.  Here's a link to her article about the DBS surgery that she went through:
http://parkinsonsjourney.com/my-journey-with-dbs-deep-brain-stimulation/

I wish I didn't have to wait until November to get started on this side trip in my walk with Parkinson's.  Once I get the notion to do something, I want to do it and get it over with, or know a very good reason why I shouldn't!

Thanks to my readers and Healthline!

I recently discovered that Healthline.com has listed my blog as among the 25 best of 2012!  I'm amazed!  Thanks so much to Healthline (a very useful online resource) and to the folks that patiently weed through all my ramblings for the occasional helpful comment.

Thank You , Thank You, Thank you!

Considering DBS

Saw my neurologist last week, and he says I should really start looking at Deep Brain Stimulation (DBS) surgery.  In fact he provided me with a referral to the DBS group at Stanford, which is only 30 minutes from my home, luckily for me.  This is a hospital that I'm very familiar with; I was hospitalized there once when I was a teenager. My son was born there, as were two of my brothers.  It's where we go when we need to go to emergency.  It feels as comfortable as a hospital can be.  So that's good.

I'm looking forward to the consultation and getting my questions answered.  The biggest question I have, though, doesn't seem to have an answer.  How does it work?  No one seems to know; they just have theories.  Still, I know enough people who have been through it with good to amazing results, that I will seriously consider it, even though the idea of having a hole drilled in my head for any reason just gives me the willies...   Of course, if it really means that I can feel better and take less medication, I would drill the hole myself.   Okay, that's an exaggeration.  Poetic hyperbole; don't mind me.

Anyway, I'm waiting for a call to set up an appointment.  I hope that happens soon, because I'd just as soon have it over with so I can decide what to do.  Waiting sucks.

Well, vacation is over.   :-(
As always, we had so much fun just being together, it hardly mattered where we were.  However, we happened to be in a beautiful house on a lake in the Poconos Mountains in Pennsylvania.  Every hour of every day was restful, entertaining and/or thought-provoking.  We laughed so much that my stomach muscles were actually sore the first day.  That house was so full of love and joy that I felt that if you could see such things, you could see the house from space.  That's why I love this picture that my sister-in-law, Debra, took.  Can't you just see the laughter and happiness spilling out?

The trip was a little challenging for me, physically; more so than ever before.  But I was able to do everything I wanted to do, and Old Man Parkinson was NOT able to ruin my time.  Hah!

Looking forward to vacation!!!

Our annual get together with friends and family is coming up, and I can hardly wait.  We're renting a house in the Poconos in Pennsylvania.  That will be different; we usually rent a house in Tahoe.  So we'll be taking a redeye flight from here to Philadelphia, then drive a couple of hours to get there.  It's going to probably be torture for me, but it's totally worth it!  I'm just going to take a sleeping pill when I get on the plane.  Last time I didn't do that, and I was awake all night.

I really need a break; this whole job thing has been very stressful.  I still don't know whether I will have a job when I get back.  I have found some work (very boring work right now, but better than nothing), but so far the powers that be have not stopped the lay off process.  So my last day at work is supposed to be August 6th.

Anyway, it's going to be great talking and playing with my family and friends for a week.  I bet I won't think of anything stressful the whole time.  Just a few more days to go.... Yay!

Aha! Found the problem

Some of my comments were caught in the new Spam filter that Google installed.  I will be able to keep up now!

Apologies

If anyone has left comments for me in the last couple of weeks, I'm sorry if I haven't responded, but apparently, they are not getting to the blog for some reason.  I keep getting emails that say someone left a comment, but when I go to my page, there are no new comments.  I will try to figure this out with Google and get those comments; I need them in order to keep myself sane (or at least a reasonable facsimile of sane):)

The shoe drops...

Well, I got official notice that I have 60 days to find another job within the corporation or suffer the slings and arrows of involuntary lay off.  I think I'll probably get another position, but it will mean a major lifestyle change for us.  The only positions available are in another city about 20 miles away as the crow flies (an hour as the car crawls in commute traffic).  That means that I won't be seeing my husband every day for lunch, and I will have to drive quite a bit, which makes me a little nervous.

If I don't get another job, I'm in a bit of a pickle.  I'm only 52, (too old to rock and roll, too young to die!), and I can't get my retirement until age 55.  Besides,  I've been in harness for over 30 years, and I'm not really ready to be turned out to pasture yet.

Well, it's another chapter.  What surprises me is that with all this stress, my Parkinson's symptoms are very much under control.  Could it be that I just needed a little shakeup?

Bad news? Maybe not...

Went to the neurologist last week, and he says it's time to start thinking and talking about Deep Brain Stimulation (DBS) surgery.  The side effects of the medications are increasing, and the good effects are decreasing.  I kind of knew that I would eventually face this, but it takes some thought.  I'm also not sure how much it's going to cost me, and whether we can afford it or not.

I've been warned that I am at the top of the list of about-to-be-layed-off employees in my department.  Not enough work for all of us, and I make too much money.  I have put in 28+ years at the company, worked so many extra hours, sacrificed my time, etc., etc..  Surprisingly, though, I don't feel resentful.  I understand how these things work.  They don't have enough to pay all of us, and it would be in the best interest of the department to keep the younger people and let those of us near retirement go.  Also, when you work as a government contractor, you have this thing called total cost accounting, which means that you have to account for each and every hour that you work.  If you have no contract to work on, you have no job.  We just don't have enough contracts right now.

A year ago, this news would have felt like the end of the world to me.  Now, though, I'm kind of thinking that I'm getting near the point where I can't really work anyway.  I have too many uncomfortable "off" times, too much difficulty concentrating and too many times when I can't physically do what I need to do.  Just standing in the laboratory for hours wears me out; I can't hold the oscilloscope or multimeter or logic analyzer probes on the electronics without accidentally shorting things out.  I have to ask for help all the time.

Maybe all of this is the Universe's way of telling me to move on to the next stage.  Maybe there's something else out there that I'm supposed to be doing.  Who knows?  It could be a very good thing.  I sure would have liked to celebrate my 30th service anniversary, though.  Oh well, maybe they'll let me go to the dinner dance anyway :-)

A Parkie Poem

Somebody tell me it will all be okay,
Tell me tomorrow won't be like today.
Tell me this illness was just a big hoax;
A not-very-funny impractical joke.

If these things are not true,
And you can't tell me why,
Don't worry about it;
Goddamnit, just lie!

Happy Mother's Day

So there I was, at 4:15 in the "morning", unable to sleep as usual, trudging grumpily downstairs while cursing Parkinson's Disease and everything associated with it.  I glanced at the computer, and there on they keyboard was a card with "Mom" written in fancy script on the envelope.  I opened it, and found a card with a picture of a little boy on the beach; a child who looked so much like my own when he was 6 or 7, I swear it could be him.  Inside was a note from my now 25 year old son, and it starts out "you are an inspiration to me; nothing gets you down, absolutely nothing".  I won't reprint the whole thing, but suffice to say, the tears were rolling down my cheeks by the time I finished reading it.  Funny how something as small as a card can change your whole attitude in less than a minute.  Of all the blessings in my life, the best one is being a Mom.

Parkinson's Meltdown

It's happened.  What I've been dreading has come to pass.  On Friday, things at work became suddenly stressful at just the wrong moment, when I was wearing off.  As people started demanding more and more of me and became more and more impatient with my inability to explain the situation clearly, the Parkinson's symptoms became worse and worse, which of course made me less and less coherent.  I was shaking uncontrollably, unable to move quickly, almost unable to stand or talk.  The guy in charge kept saying things like "that's not a good enough answer", and "that's not acceptable", and I couldn't explain the technical issue I was addressing or the trouble I was having putting words together.  There were at least 3 or 4 people firing questions and comments at me simultaneously.  It was too much.  I started tearing up; I couldn't stop it.

Suddenly, everyone could see my symptoms in all their glory, and became apologetic and embarrassed, offering help and suggestions.  I know that everyone meant well, but I don't know which was worse; their obvious downward reassessment of my abilities or their pity.

I can't hide now or pretend that there is nothing wrong.  I am now forever "disabled" in the eyes of my colleagues.

I've been crying all weekend, but that has to stop.  I just have to figure out how to pick up the pieces and put the puzzle together a different way.  I have to go on as long as I can and find a new path and a new direction when this one gives out.  When you're walking in the woods, sometimes the path you're on ends and you have to backtrack and find a new way.

That's what I have to do, and that's what I'm going to do.

Happy Birthday to me...

Today is my 52nd birthday.  This is the same age my mother was when she died of cancer.  I know it's silly, but somehow I feel that if I make it through this day, I will have passed some kind of significant milestone.  What would Mom think of me now, I wonder?  If she could see me, she would see a woman old before her time, I think.  It would have made her sad.

But I am alive and kicking, and walking and dancing and... everything.  I'm going to enjoy this day no matter what Old Man Parkinson says.   And at the end of the day, I'll raise a glass to Mom and tell her that I love her, but I won't be seeing her just yet.

Getting it through my thick head

When will I get it through my thick head that I NEED to get enough sleep and exercise (not at the same time) and to remember to take my vitamins as well as my meds?  the last few weeks I've felt just awful.  I had hardly any "on" time, got exhausted by the smallest things and was unable to exercise because of the fatigue, stiffness and pain.  Then I remembered that I had not taken my vitamins all through the holidays and well into February, so I started up again a couple weeks ago.  I also decided to exercise even though it knocked me out.  Sure enough, I'm soooooo much better now.

I am both Vitamin B12 and Vitamin D deficient, like a lot of other Parkies.  Fortunately, the oral supplements work just fine for me.  I tend to stop taking them when I feel better;  I hate taking more pills.  It's time to face the facts, though; I'm going to have to probably take them for the rest of my life. O.K.; could be worse.

If I don't exercise, I always regret it.  I get stiff and shaky and then it becomes a vicious circle.  No matter how much I don't feel like it, I have to remember to get up and walk, to dance, to do something and not just sit there turning into a statue.

So, I guess I'd better pull on my "big girl panties" and get on with it, right?

Just another Sunday

Forgot to "Spring forward" last night, so I'm all discombobulated this morning.  My husband and I went to our support group meeting yesterday, and as usual, we left feeling uplifted and hopeful.  It's just so great to be with a group of people who know and understand exactly what you're going through.  We meet once a month, but every time we go, we pick up conversations as if we had just been together the day before.

I found my support group through PPSG (Parkinson's Patients Support Groups, Inc.).  Here's a link: Parkinson's Patients Support Groups, Inc.
(I did the artwork for the landing page on this site, by the way.  I'm kind of proud of it :)).  I'm a big believer in support groups, though I know they aren't for everyone.

The Parkinson's Community; alive and kicking.

Sometimes I get little messages of hope.  I was just mentally settling down to have a nice little pity party, and out of the blue, this stranger calls me.  He was just diagnosed a year and a half ago, got my name from a friend who got if off the internet and realized that we both live in the same neighborhood, and called me to see how I was doing.  Here's this 65 year old man, still trying to recover from the shock of the diagnosis, and he's reaching out to me because he knows I'm walking the same path that he is, and he wants to offer support to me!  I was amazed and really touched.  He and his wife were just starting to enjoy their semi-retirement (they are both geologists and are used to traveling all over the world in pursuit of data on earthquakes and slides) when they had this bomb dropped on them.  But he's not letting it get him down, that's for sure.  He's researching and working on it, going to the Institute for exercise and physical therapy, and most of all, keeping a positive attitude.  He was an inspiration to talk to, and I plan on keeping in touch.

It was a reminder to me that none of us are alone, though it may feel that way sometimes.  The Parkinson's community is very much alive, though tenuous in places.

So thanks, Mike, for the wake-up call!

Wearing off again

So what's with the whole wearing off thing?  I understand that sometimes the medication wears off before the next dose, but why some days and not others?  There are days when I feel 100% all day long, and there are others when I feel like the medication isn't really working at all.  I will have to pay more attention and see if I can find the common denominator there.  Maybe it's my work, but I don't think so.

The coffee mug in the picture was a Christmas gift; I just love it!  It says "ON" when the mug is hot, and "OFF" when it isn't.  I don't think that the person who gave it to me was thinking in terms of PD, but it certainly is appropriate.  I find things like that very funny, but not everyone shares my warped sense of humor, I suppose.

PD and Hallucinations

Wow, it's been a long time since I've posted.  I will try to keep up better.  Like a lot of people, the holidays kind of threw me for a loop, and I've been recovering since then.

Another new PD experience has begun for me; hallucinations.  A while ago, I was starting to see things that weren't there.  It started with spots and patches of color in the corners of my eyes, which was no big deal, but then it escalated.  I saw a truck parked in our driveway, but when I looked again it was gone, and we live at the end of a dead-end street.  I saw a person standing next to my car, who also disappeared as soon as I looked directly at him.  I saw another person as plain as day standing in the doorway of a vacation home we had rented.  She was as solid and real as anyone else; 40 to 50ish, blonde hair, white pants, blue shirt.  I thought maybe the owner of the house had come to say hello or something. Then she disappeared.  Disturbing.

Well, the neurologist suggested cutting back on my Requip dosage, so I did.  Since then I don't see people who are not on our plane of existence any more, but I still see things in the periphery of my vision sometimes. The difference is, now I'm learning to differentiate between real and unreal, so it doesn't really bother me, except when I think I see a spider.  I prefer not to see spiders, real or not.

Other than that, I'm feeling fantastic!  I'm doing so well, that sometimes I think I don't have Parkinson's at all.  Then, I forget to take my pills on time, and Old Man Parkinson comes to visit me again.  Oh well,  I really think that the researchers are on the verge of a cure anyway; so there, Mr. Parkinson!