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".

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?

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!

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.

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.

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".

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).

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.