Wednesday, December 31, 2008

Happy New Year!

Well, it's New Year's Eve and the house is filled with joyful noise and laughter.  My son's friends are here for an all-night party (I'll be lucky to be up until midnight; after that they're on their own!).  It's so wonderful to have young people around!  They are so full of life.  Also, it was getting a little too quiet around here.

I hope everyone has a wonderful and safe New Year's Eve, whether a quiet one or a noisy one!

Wednesday, December 24, 2008

Merry Christmas everyone!

I just heard from my sister, Erica! She's doing so well; I'm so proud of her. I wish I had a more recent picture of her to post, but here's a picture of her on her wedding day in 1997:

She's a beautiful person, inside and out. We tend to lose track of one another, I'm not sure why. Growing up, we were kind of separate, since she's I think 13 years younger than I am, also she's really my half sister. She grew up with our Mom, and I grew up with my Dad. Anyway, it was a wonderful Christmas surprise to hear from her. She also says she might be able to help me organize a Parkinson's Walk or other event in her area; she has connections. Wouldn't that be great?

I'm so happy and filled with joy and love today. I hope the same is true for everyone.

Sunday, December 21, 2008

A poem for modern cooks

I was baking cookies today, and I thought of this poem. It is dedicated to Btrflynana's husband, Al, who is a wonderful cook. It doesn't REALLY apply to him, though, because I think he could make a great meal with 2 stones and stick if he had to. Anway, here goes:


The Modern Kitchen

Cuisinart and Kitchenaid,
Without them food would not get made.
Electric juicer, garlic press,
A dishwasher to clean the mess.

Blender, toaster, crock pot, too
(without that there would be no stew).
Panini maker, bread machine,
The microwave works like a dream.

George Foreman grill, convection oven,
All this fancy stuff I'm lovin'.
Now I can make a meal with ease,
Gourmet cooking is a breeze.

I'm telling you, the modern kitchen
Keeps any picky chef from bitchin'!
"The future's here" I gladly shout!
What's that you say? THE POWER'S OUT?!!




Saturday, December 20, 2008

Christmas Time is Here!

Christmas is coming!! Somehow it does that every year. We just got home after our Ukulele Club Christmas party. Every Ukulele club meeting always leaves me glowing with joy, but this one was particularly great. You haven't lived until you've been part of a 200+ ukulele orchestra playing "White Christmas" as loud as you possibly can!

Unfortunately, I seem to have a cold, and you PWPs know what that means. That's right; I can hardly move. It's taken me 3 times as long as it should to type this post. Oh well, that seems to be the scourge of the season. Could be worse, right?

I am SOOOOO excited about Christmas this year for so many reasons. I really can't go into it right now, but for the first time in my life I feel that I'm starting to understand what the Christians mean when they talk about the miracle of Christ's birth and Christ's sacrifice. The idea of God making him/her/it self totally HUMAN and subject to all the bad things that humans deal out to one another amazes me. That God loves us enough to do that.... well, it's an astounding thought. I'm not saying that I'm going to go in for Christianity or any other organized religion, I'm just saying that the idea of Jesus' sacrifice awes me. It's that idea that's important.

Saturday, December 13, 2008

A reprint of "The Little Girl Who Ran", and THANKS, Judy!!

My friend Judy sent me a lovely gift; she took one of her beautiful photographs, and one of my poems and combined them, then framed the result and sent it to me. I actually cried when I saw it. Some people know just the perfect thing to say or do, and Judy is one of those people. Anyway, I thought I'd reprint the poem here:

The Little Girl Who Ran

I was once the little girl who ran,
I could not walk, I could not stand
To plod along as grownups do,
I thought they crawled, they thought I flew.
“Why walk?”, I thought, “when you can run,
and leap and dance and have some fun?”

Now I wish I had the chance,
To once more gallop, run and dance,
It seems disease has closed that door,
And I can’t run much anymore,

But in my mind, I’m still the same,
And though my legs are weak and lame,
Inside, I run without care or plan,
I’m still the little girl who ran.

-Marian Bumala

Thursday, December 11, 2008

Another T-shirt site of mine

I have opened another online store to sell Parkinson's T-shirts. This one is at spreadshirt.com, and it's called Parkieshop. I'm posting a link under "Parkinson's Links" on the right. The thing about the t-shirt designs on this site is that they are a little cheaper, generally, and I have a new shirt that is for men as well as women. The shirt just says "Will Work For Dopamine" an it comes in a few different colors for men and women. I'll work on getting more colors eventually.

As with the Parkie Princess store at Cafepress.com, all the profits will go to the Michael J. Fox Foundation.

Monday, December 8, 2008

Parkie Princess Party

I haven't blogged about the Parkinson's Princess Party that I went to in November, largely because I felt bad that it wasn't as much fun for Karen as it was for me. I went as her guest, and she was not feeling well at all (in fact, she had been to the emergency room just a couple of days earlier). Also, there were no MSA patients there, which was disappointing for her. Well, we had fun anyway! Picture about 20 middle-aged ladies (maybe 40 to 65 years old) sitting around a conference table wearing pink tiaras and feather boas and talking a mile a minute! What fascinating people we met there. I had met 2 or 3 of them before, since the party was at the Parkinson's Institute in Sunnyvale, and that's fairly local for me. We were all so different, yet shared so much in common. We were all young onset patients, all fairly active (some VERY active indeed) and all interested in finding ways to help conquer Parkinson's and all neurological disorders. There were women there who ran marathons, or climbed 10,000 foot peaks, or skiied, or played tennis. There was one woman there who had just gone through DBS surgery after I think 15 years of living with PD. The whole thing was very uplifting and energizing and FUN!

I had made a T-shirt for the occasion. It was a long sleeved black shirt with the words "Parkie Princess" on it and a picture of a crown that looked like it was shaking, all done in rhinestones. I got so many compliments on it, that I decided to design a non-rhinestone version and sell it on the internet. The link to my "Parkie Princess" site is on the right under "Parkinson's Links". All profits from the sale of anything on that site will go to the Michael J. Fox Foundation for Parkinson's research. I'm very excited about this! I sure hope that I can raise some funds this way. In any event, it's fun to do, though!

Saturday, December 6, 2008

Shadow Companion

As I walk this path, a shadow follows me.
She is the footstep I hear behind me,
the twig that snaps in the woods.
I turn around; no one is there.
Sometimes I catch a glimpse of her;
an old woman, bent, shuffling, trembling,
her claw-like hands hanging stiff at her sides.
She disappears as I look at her,
but when I turn around to continue on my way,
I hear her follow.

What do you want? I scream at her,
Leave me alone! No reply. Just the slow shuffle, shuffle
of her feet as she follows me.

I see her more and more clearly;
whatever I do and wherever I go she is there,
Hovering around the edges of my vision.
Painfully hobbling along or leaning on her cane,
watching me with expressionless hunger.

Now I think I know what she wants.
If I let her, she will become me.
She is trying to possess me.
Maybe I can't keep her away forever,
But there is one thing I can do:
I can keep her out of my mirror
as long as possible.

Saturday, November 22, 2008

Why ask why?

Dear God,

I don't know how to pray.
You know I never learned the way.
Can we just have a conversation,
about last evening's revelation?

I know that you have got a plan,
That I can't hope to understand.
But can't you please just clarify,
the reason that my friend should die?

That sunshine smile, that warm embrace,
She seems to love the human race,
She lights the darkness with a laugh,
Her kindness also lights my path.

I know it's not for me to say,
Who should go and who should stay.
But why should she have all this sorrow
And wonder if she has tomorrow?

I'm listening, God, please talk to me.
Tell me how this came to be.
Is there hope that you can give to me?
The silence tells me "wait and see".




Saturday, November 15, 2008

My Tips For Living With Parkinson's; Vol. 1

I know that PD is different for everyone, and what works for me may not work for someone else.  I just thought that I would post a list of some things that DO work for me, in the hopes that it might be of use to someone else in the future. 

My tips for living with PD (volume I):

Fatigue:  Catnap, catnap, catnap!! Even a minute or two of sleep can help.  Plan around your limits; knowing that you can't keep going for "x number" of hours straight, make sure that you don't sign up for it.  Example:  we went to NYC to visit relatives for Christmas, and they took us on a walking/subway tour of the city.  Great fun!!  We had lunch in Little Italy, did some shopping, went on the Staten Island Ferry to see Lady Liberty, saw a Broadway show, then had dinner at a Brazilian restaurant and went to a comedy show after dinner.  If I had it to do over again, I would have skipped the comedy show and just taken a cab home.  However, I did get about an hour of sleep on the subway, which I've since been told is a BAD idea!

Depression:  I haven't had as much trouble with this as some, but I've found that exercise really, really helps.  I know it's difficult to exercise when you're depressed, but if you can get past that, it does get better.  I'm not talking about marathons, here, I'm talking about maybe taking a walk or vacuuming or doing some sit-ups or something like that.  Every little bit helps.  Doing something positive has also been very helpful to me.  Join a support group, try to help others, join a clinical trial, participate in a fundraising event, donate blood.  All these things make me feel like I've found a silver lining in all of this, and I find that I feel energized and positive again.

Stiffness, slowness: Again; exercise.  I have a very sedentary job, and now that I make a point of taking 2 10-minute walks every day, the muscle stiffness is much less of a problem.  Also, take your meds on time.  If I'm even 20 minutes late, it can make a huge difference.  It's best to find a good strategy to remember to take your meds on time.

Tremor:  If your meds don't help this, then you're probably focused on just trying to hide it.  I've found that if I'm walking with my "bad" hand hanging at my side, my tremor is at its worst (although my tremor is very mild in general).  If, on the other hand, I hold something in my "bad" hand, nobody can tell that I have a tremor at all.  When I'm sitting in a meeting and the tremor is bothering me, I simply hold the "bad" hand with the "good" one or hold a coffee cup with the "bad" hand or something.  I don't usually care whether people notice my tremor, though.  It's just that some days, I feel more self-conscious than others.

Funny "Parkie" walk:  This is a tough one.  I didn't even know that I was walking "funny" until a couple of co-workers remarked on it.  What I try to do now is this:  concentrate on keeping the back straight, the shoulders back (but relaxed), the chin parallel to the floor, and the heels hitting the ground before the toes.  If your toes are hurting, it probably means that your are leaning a little too for forward as you walk.  Try to keep your center of balance more in the middle.  Don't wear heels (I try to follow this rule, but break it every now and then!).

I will post more tips as I think of them, realizing that what works for me may not work for someone else.  PD is a very, very individual kind of torture, isn't it?


Thursday, November 13, 2008

EEG came back normal. Now what....?

Finally got my EEG results back; normal. I had to rattle my doctor's cage. Sometimes, if the test results are normal, he doesn't bother calling me, but since this test was done at another facility, the results didn't get sent to my online account.

I don't really know how I feel about this. I certainly don't want a seizure disorder, and it looks like I don't have one, so that's good. On the other hand, something did go wrong (my neurologist calls it a "spell"), and we don't know what it was, or whether it will happen again. If it wasn't a seizure, what was it? The doctor says his prime suspect is migraine. I've been doing some reading about migraines, and it does fit the symptoms. Vertigo, nausea, olfactory hallucination, memory loss, and a couple of days of extreme sleepiness afterwards. I didn't know this, but apparently, you can have a migraine aura without the headache. That's what was confusing about it to me; I had no pain.

Well, I guess I'll just have to hope that it doesn't happen again, and pay closer attention to what triggers my migraines. I should follow the advice I always give everyone else and WRITE IT DOWN!

Tuesday, November 11, 2008

Friends; a new experience

I am not an easy person to get close to.  There are people that I've known for over 20 years that are not what I would call "friends".  Just acquaintances, or coworkers, or both.  People that I like and admire, but who are somehow unreachable.  It's ironic, because I love people; I love to hear their stories and get a sense of who they are.  I love to hear them laugh and I love to share their experiences.  I just have trouble interacting because I feel that I'm not worthy of anyone's attention, I guess, and I worry that I'll do or say something stupid.  Besides, I learned at a young age to be careful not to get too attached to people, because they go away, and it hurts.  To complicate matters, I grew up in a socially challenged family.  Don't get me wrong; I love my geeky, quirky family, and the great thing is that I also have wonderful in-laws with whom I have become friends.  I just have never managed to have many friends outside the family, except for our next door neighbors and one faithful friend from high school, who I admit I don't call nearly enough.

Parkinson's has changed that.  I started out looking online for people who understood what I'm going through and could answer my questions.  Suddenly, I have friends!  I have actual friends that I can call on the phone, and go shopping with and hang out with (distance permitting).  I have people who call me to find out how I'm feeling, and to tell me how they're feeling and what's going on in their lives.  I have friends who listen to me and allow me to try to comfort them as they comfort me.  I didn't know I was capable of helping anyone, but people say that I have!  I know that my friends are probably closer to each other than they are to me, but that's o.k..  I'm just so grateful to have them in my life; it's hard to explain.  Every one is a blessing.

This weekend, I got to meet one of these wonderful people face-to-face.  Marla ("Ladyhawk") came to visit Karen ("Btrflynana") and they included me and Bob in their plans.  We met for lunch on the beach at Miramar, then they dropped by our  house for pumpkin pie.  Here we are at lunch:



Here's me and Karen and Marla:


So I guess what I'm saying that this is a major silver lining for me.  If I could be cured of Parkinson's right now, but only if I lost all my friends, I think I would keep the Parkinson's, I really do.

Thursday, November 6, 2008

A Nifty Pill Box/Medication Timer

I finally found the perfect pill box/medication timer for me.  I was using an audible alarm, but it was annoying other people, and it was so large that I usually didn't carry it with me, which, needless to say, kind of defeats the purpose.  Plus, I sometimes turned the alarm off, but forgot to take the pill!   Then, I found this wonderful gadget from Independent Living Aids (here's the link: http://www.independentliving.com/prodinfo.asp?number=328021 ).  It's easy to use, it has 5 alarms, and 5 pill compartments.  It's small, so you can fit it in a large pocket or a purse, you can set it to beep or vibrate or both, and best of all, it's not expensive.  I think I paid around $15.00 for it (of course, NOW they put it on sale!).  Here's a picture of the top:


You can see how nice and small it is, considering that it has 5 pill containers on the bottom, each of which is big enough for me to put in all my medication for a day.  That means I only have to load it up every 5 days.  That may not work for some people, I know, but you can always put in one dose per container.
     When the alarm goes off, you have to rotate the bottom half of the pill box to make it stop.  In other words, you actually have to open the pill box and hopefully take the pill, otherwise the alarm will go off again.  This is very helpful for people like me who forget in the course of turning the alarm off whether they have taken the pill or not!
     Since I want to keep it with me all the time, I made this little purse for it out of the back pocket of an old pair of jeans:


I can't recommend this product enough!  I just love it.  I haven't forgotten a pill since I bought it.




Tuesday, November 4, 2008

A Word About Medical Tests

Here's one of the big differences I see between healthy people and people who either have a chronic illness or are in the process of having a serious illness diagnosed:  when a healthy person goes in for a medical test, they worry that the results will be positive and they may have to face the possibility that they are sick.  When the test results come back "negative" ("normal"), the healthy person is happy and relieved.  He/she walks off into the sunset and goes on with his/her life.  When someone in the diagnosis process gets a "normal" or "negative" test result, they are sometimes disappointed.  In fact, they are sometimes devastated.  The reason for this is simple:  there is nothing worse than not knowing.  When I was diagnosed with Parkinson's, my first reaction was actually relief.  I was just glad to know what I was up against so that I could get on with it.

My friend Karen is in "Diagnosis Hell" right now.  They thought she had Parkinson's, but her symptoms were much more aggressive, and some didn't fit in with PD at all.  Then, she didn't react well to the PD medications, so they decided she must have a "Parkinson's Plus" disease.  Eventually, she was diagnosed with MSA (Multiple System Atrophy).  Now, MSA is a horrible, terrible disease with a life expectancy of 6 to 10 years from diagnosis.  Karen is only 50.  Naturally, she wants to make sure of the diagnosis.  We are all hoping that she has been misdiagnosed.  She had her hopes pinned on a series of tests which were finished up yesterday.  I called her last night to see how it went, and I knew right away that it was not good news.  Karen sighed and said in a small, tired voice "the tests all came back negative".  Well, we just cried on the phone together for a little bit, then we discussed her options.  She's not at the end of the rope yet; there are still tests which can be done.  Her only other option is to just give up, and that is NOT her style.

You see, this is why sometimes we aren't all that thrilled when we get a test result that says "normal".  It feels like you've asked the medical community "what the hell is wrong with me?" and there was a collective shrugging of shoulders.

So Karen, keep on trying, keep on plugging.  There is an answer out there, and even though we may not like it, it's way better than "uhhh.... I don't know".

Monday, November 3, 2008

EEG; interesting experience.

I had my EEG done today. My neuro wants to try to establish the cause of my olfactory hallucinations and bouts of vertigo and nausea. Basically, we're trying to rule out seizures, although as I understand it, if the test results are normal you can't be absolutely sure that the person doesn't have a seizure disorder, it's just less likely. Anyway, here's how it went:

I had to stay up until midnight last night and then get up at 4:00 a.m.. No caffeine, no chocolate, no stimulants of any kind until after the test, because they want you to be able to fall asleep. I had to wash my hair, but was not allowed to put any conditioner or anything else on it. I had a bad hair day, as you can imagine. When I got to the neurologist's exam room, the technician had me lie down, and then she proceeded to sand down about 25 places on my scalp and cheeks with pumice and paste down an electrode in each spot. That's why they wanted my hair and scalp clean; the electrodes stick better. Then she had me open and close my eyes per her directions for a while. I was then asked to close my eyes and hyperventilate for 3 minutes. 3 minutes sure seems like a long time when you're panting like a dog and your fingers are starting to go numb! Thankfully, I was then allowed to go to sleep. I was so tired, I fell asleep immediately, though I kept getting startled awake by loud noises in the hall. Finally, it was all over, and the tech removed the electrodes and did her best to scrub away most of the sticky paste in my hair. I sure looked a fright! I guess I'll wash my hair when I get home, if I can stay awake that long!

As I understand it, the sleep deprivation and the hyperventilation are both meant to induce seizures. Sometimes, a flashing strobe light is used, too, though they didn't do that with me. The idea is that if you're going to have a seizure, they want to see it on the EEG. I guess that they want you to go to sleep so they can see what your brain is doing in that state and make sure that it's normal.

I'm looking forward to getting the results of this test. I bet it will be as normal as can be. That will mean that I probably don't have a seizure disorder, and my little problems are all caused by migraines (all the non-Parkinson problems that is).

Saturday, November 1, 2008

Happy National Caregiver's Month!


November is National Caregiver's Month, and I want to say a few words about my husband, Bob.  I never thought that he would end up as a caregiver for me, and I'm sure he didn't either, but he has accepted the challenge with grace, strength, love, tenderness and enthusiasm.  I knew he would.
     We met back in 1984, when I was just starting at Lockheed.  Bob had been recruited a year earlier in the same way I had; by our college instructor in digital design, Fred Hilsenrath, who also worked at Lockheed's space sciences research laboratory in Palo Alto.  Bob and I were both just starting out, and we hit it off immediately.  I know this seems trite, but it really was love at first sight.  Some people thought it was odd, because our backgrounds were so different, but that didn't matter to us.  The biggest problem was that I was already in a relationship, and a very abusive, dysfunctional one at that.  I won't go into details, but suffice to say that this man, who was 8 years older than I, had been manipulating and psychologically abusing me since I was 15 years old.  I wanted out, but he had me under such tight control that I was afraid to even think about leaving him.  But all that changed when Bob came along; he led me out of the darkness and gave me the strength I needed to change my life.
     Bob is my best friend, my confidant and the love of my life.  I'm amazed at the calm and gentle way he is accepting this new role that Parkinson's Disease has thrust upon him.  I wish it hadn't happened, but I'm so grateful to have Bob's strong shoulder to lean on and his warm and loving hand to hold.

Friday, October 31, 2008

A (sort of) Spooky Halloween Story

Halloween is here again, and we'll be carving pumpkins tonight.  I hope it goes better than last year.  Last year, something kind of spooky happened with the pumpkins.  We took some of the newly finished jack-o-lanterns outside then went back in for the rest.  We weren't gone for more than 5 minutes, I kid you not, and when we went outside with the rest of the pumpkins, the faces of the first batch had been, well....eaten. Where the face had been on each jack-o-lantern, there was nothing but a big, almost perfectly round hole.  They looked like this:

Well, we just stood there dumbfounded for a few seconds, staring at this whole row of pumpkins that looked like they'd been shot with a cannonball.  We couldn't imagine what could have done this in such a short time.  Literally, it had only been a few minutes, as we gathered up the other pumpkins.  Thoughts of evil spirits and demons crossed my mind, just for a few seconds, I admit it.  Then we looked closely at the violated jack-o-lanterns, and saw the tooth marks; raccoons!  They must have been up in the trees around our house just waiting for us to leave those pumpkins alone for a few moments.  They sure work fast!
     This time, we'll put the carved pumpkins in the garage until it's time to light them.  I can only hope that the burning candle will deter the demonic raccoons.

Tuesday, October 28, 2008

Dean's DBS Story

I had to share this story. The leader of my support group, Dean Prescott, is a remarkable man. He has fairly advanced Parkinson's though he's still young. He has terrible trouble with walking, dyskinesia, and just basic mobility. He shares so much with us, so selflessly! Recently, he underwent DBS surgery, and kept us all informed on his progress. This is his most recent update:

"It was a short walk, as walks go. It had seemed so far away when they first made the announcement. It was hard to understand how this moment was already here. At this point I just wanted to be sure I was putting one foot in front of the other without tripping on Sarah's dress. The bridesmaids were were all in the room, waiting for their moment, while the groomsmen seated the guests. I peeked into the room to see my daughter in her dress and was stunned by the way she looked. "What do you think, grandpa?" Was asked by one of the bridesmaids. "Beautiful," was all I could say.

A light breeze chilled the guests as they waited patiently after being seated. They were treated to a view of evergreen trees made greener by the deep blue sky above and Lake Tahoe in the background below.

Suddenly it was time, wedding music began to play. The bridesmaids lined up with their partners and began the procession down the aisle until there was only the flower girl (Natalie, my granddaughter), the ring bearer and me and Sarah. A handsome young man, the ring bearer was having a hard time holding the pillow that held the ring. It would not stay balanced on the one hand while the other hand was holding on to the flower girl. I showed him how to bunch up the bottom of the pillow in his hand and he was ready to go. Down the aisle they went and then it was only me and Sarah.

It didn't seem possible that so much time had passed to bring us to this moment. Wasn't it just the other night that I was reading her a bedtime story and she was asking me to read it again and again.

We waited for the music to change again. Then one step at a time we proceeded as the faces in the audience began to appear. The seats were fuller now than when I had peeked out earlier. I kept my concentration on my gait as we walked slowly down the aisle to where the groom was standing, alongside the minister and the bridesmaids and the groomsmen. I shook his hand and kissed my daughter, just like the rehearsal. I found my seat, next to my wife and watched the rest of the ceremony.

It wouldn't seem like such a short walk would be such a big deal and thankfully it wasn't, but as little as a month earlier it might have been much different. The effects of Parkinson's disease and the medications used to treat it had reached a point where without medication, I could barely take a step; and with medication I could walk, but my right arm and leg would gyrate out of control for hours at a time.

The Deep Brain Stimulation Surgery that began six weeks earlier with two probes being implanted into my brain would reduce my dependence on medication, improve my basic level of ability, and reduce the side effects of the medications. How the procedure accomplishes even one of these functions, I don't understand.

Two weeks after the initial surgery they implanted the stimulator into my chest and connected it to the probes with wires just below the skin. They would not activate the stimulator until two weeks later, just two weeks before my daughter's wedding.

The initial adjustments with the stimulator are done with the patient off medication. That meant another night of trying to sleep while my legs twitched. This time it wasn't quite as bad. In fact I was able sleep some that night and I was able to walk slowly to where I was being tested the next day. I had expected to need a wheelchair.

They ran me through the usual tests before turning on the stimulator. First the box where they have the patient stand up straight, then lean in various directions, then the walls move in various directions, then floor moves in various directions, all with the goal of seeing where you lose your balance. Then there are more tests that are repeats of previous tests such as finger tapping, leg tapping, hand twisting and, of course walking.

Now it was time to turn the stimulator on and when they did I didn't feel any different. When they ran through the tests again, however, I immediately noticed a dramatic difference in my ability to perform them. They used the results to determine how to adjust the initial settings on the stimulator. In adjusting the stimulator, they have to allow for the effect of the medication. If they adjust the settings too high some of the old side effects may return.
The stimulator comes with a controller. When put up next to the implanted stimulator, the controller can turn the stimulator on and off and even up and down to a limited extent, but the major adjustments are done by the nurse who is trained to make adjustments using a separate controller that adjusts the strength and frequency of the signals being sent from the stimulator to the probes. The nurse showed us how to turn the stimulator on and off while we waited for the medication to take effect. There are certain circumstances where the stimulator needs to be turned off and other circumstances where the stimulator can be accidentally turned off and may need to be reactivated, so we both needed to know how to use it.

It has been eight weeks since the initial adjustment of the stimulator amd four weeks since I went in for a second adjustment. My next appointment is in two more months. I have been told that it can take up to six months before they get the ideal adjustment. Overall I have eperienced considerble improvement in some areas and have been frustrated with the lack of improvement in others. The biggest difference has been a reduction in the dyskinesia that had become very difficult to deal with. I have had good deal of improvement in getting in and out of chairs. My voice is stronger for the most part.

Getting a consistent stream of medication is still a problem. Carbidopa/levodopa is the most effective drug used for Parkinson's, but it has limitations. One is that there is no even delivery system. You take a pill and it slowly breaks down in the stomach (depending on what else is in there), gradually getting stronger until it reaches maximum effectiveness, then gradually slows down until you are due for your next dose in about four hours.

To improve the effectiveness of carbidopa/levodopa it comes in a "long acting" or "controlled release" formula that generally has the same effect but is spread over a longer period of time (4-6 hours).

To further complement the carbidopa/levodopa therapy there is a group of drugs called "agonists" that mimic the effect of carbidopa/levodopa. These drugs include "mirapex" and "requip". They help extend the effectiveness of carbidopa/levodopa. They have been helpful in allowing me to sleep through the night. However they have been linked to compulsive behavior in some cases. They generally are not strong enough to be used alone in advanced cases. The uptake on these drugs is also different from carbidopa/levodopa, further complicating the the dosage formula.

This may be an oversimplification of the situation, but I think it gives you a general idea of some of the problems in taking Parkinson's medications. The trick is to take enough to help get the patient moving, but not so much that they become dyskinetic and to make that situation (we'll call "normal") last as long as possible.

The DBS has helped in finding that spot, but there is still a ways to go."

The In-Laws

Today is my older brother's wife's birthday:  HAPPY BIRTHDAY, KC!! 
At the same time, my sister-in-law to be, Debra, is in the hospital recovering from an operation she had yesterday.  FEEL BETTER SOON, DEBRA!!

I hear people talk about their in-laws and the trouble they have getting along with them, and I feel so blessed and grateful for the wonderful people who have been brought into my life by marriage.  Not only did my brothers choose remarkable women to marry, but when I married my husband Bob, I got a whole new family of the nicest, most amazing people you could imagine as a bonus.
     So this morning, I find myself thinking of the in-laws I've come to know and love.  My mother-in-law Bettie, and my husband's sister Kathy up in Alaska.  My sister-in-law KC here in Northern CA, and my younger brother's fiance Debra out in NYC.  My husband's brother Phil and his wife Joy in Texas. They're spread out all over the country, but I'm grateful for them all. 

Monday, October 27, 2008

Normal, normal, normal!!

Got my brain MRI results back; normal, normal, normal!!  That's such a relief.  I don't know why, but I'm usually not even aware when something is scaring me until it goes away.  I didn't think this test was making me nervous at all, but I guess it was, because I sure feel better now.

I still have the EEG to get through on November 3rd.  One test down, one to go.

Wednesday, October 22, 2008

I CAN still dance!

Bob and I went to a Jimmy Buffett concert last night, and of course everybody stood up and danced to the music and sang along. At first, I didn't try to dance at all, just swayed a little to the beat, but it was infectious, and pretty soon I was dancing too. FUN!! We had a ball! It's funny how you think you can't do something, but when you try, you find you can. Like when we went on a 14 mile bike ride this summer; I didn't think I could do it. Not only because of PD, but also because I hadn't been on a bike in 32 years. But I did it! I think there's some deep message there, but right now I'm too sleepy to think about it. Maybe after I finish my latte....

Tuesday, October 21, 2008

Dancing Down the Rain

This was a dream I had, and this poem wrote itself in response.

Dancing Down the Rain

Dancing up the lightning,
Dancing down the rain,
Never feeling sorrow,
Never feeling pain.

A spirit in the aftermath,
Of stormy, deadly seas,
A sprite above the hurricane,
Relaxing in the breeze.

I am that spirit, soaring high,
To brush the cheek of sunset sky,
Untouched by hate, I rise above,
But equally untouched by love.

I’m all alone, there’s no one near,
The empty sky is all that’s here,
No lover, friend or child around,
I must return to mortal ground.

So I turn back, towards home I race
To settle in its warm embrace,
My spirit pours into its shell,
Pours back into this human hell.

But I am glad to be at home,
From which I’d never really roam,
Someday we’ll all be free of pain,
Forever dancing down the rain.

Monday, October 20, 2008

I'm off to see the wizard

I'm off to see the wizard this morning, not to see if he can give me a brain, but so that he can scan the one I have.  I'm having another brain MRI this morning.  A week or so ago, I ended up in the emergency room with extreme vertigo and vomiting, and the neurologist thinks it was either a migraine thing (migraine aura with no pain) or a seizure.  The seizure idea comes from the fact that I have olfactory hallucinations; I smell things that aren't there.  This is something that is known to happen with some PD patients, a phenomenon known as "phantosmia".   My hallucinations present a little differently than normal, though, and he thinks the pattern points to seizures or migraine or something.  Anyway, I'm getting the MRI this morning and at some point I have to have an EEG to look at my brain waves, too.

Ahh... if I only had a brain!

Sunday, October 19, 2008

Silver Linings

Although Parkinson's Disease has taken a lot away, it has also given me some gifts.  The best of these is the incredible community of other PD patients that I've found, both online and in "reality".  I've recently been blessed with the opportunity to meet two of my best online friends; first it was Btrflynana, then Pokie Too.  As soon as I figure out how to do it, I'll post links to their blogs.  Meeting these amazing women has been a spiritual experience for me; they both inspire me so much.  I wrote this poem for Pokie:

Pokie's Pennies

I have a friend, so strong and kind,
Who has a compass of the mind.
On her journey in this life,
At times in joy, at times in strife,
When there's a choice that must be made,
Or she's in doubt or she's afraid,
God sends a messenger so small,
You might not notice it at all.
Every time she turns around,
She finds a penny on the ground,
Or in a song, or on a shelf,
Or in a dream, all by itself.
She follows where the pennies lead,
And finds that all is well indeed.
This touchstone tells her of her mission,
If she takes the time to listen.

Why can't I have a helper too?
Lord knows I need it, we all do.
But wait; is that a sign I see?
Is my friend my epiphany?
Was she sent to light my way?
I think she was, but who can say?
With happy tears my eyesight blurs,
Is she my penny, or am I hers?

Hello world

When a programmer runs a program for the first time, the first function they sometimes have the program perform is called a "hello world".  It's just a way to show that the program is "alive" and not stuck in a loop somewhere.  Well, that's what this is for me.  Since I was diagnosed with Parkinson's Disease in 2006, I feel that my life has been stuck in a series of endless loops; when I get out of one, I fall into the next one.  Now, though, I think I finally have debugged my code and become functional again.  I feel so lucky; my medication works very well for me, I have the support of my husband and my family, and I've discovered a wonderful online community of fellow sufferers who inspire and amaze me every day.

Hello World.

 
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About Me

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I'm a lucky lady. I have a wonderful husband of 27 years, a fantastic 25 year old son (I'm so proud of him!) a loving and supportive family, the best friends in the world, a job that I love, and... Parkinson's Disease. I was diagnosed in September 2006. That was a jolt, but I'm learning to deal with it.