Saturday, December 19, 2009

Cruel words

We were at the football game the other night (9ers won over the Cardinals -- yay!!) and I went down to the concession area to get some hot chocolate. It was around 7:30 at night and I take my last pill at 6:00, so I was starting to move a little slower, and walk a little "funnier". These 2 very young men brushed past me; I could tell they were a little frustrated at my pace. As they walked on, I heard one say to the other, "well, she IS retarded, you know".

"Retarded"? First off, that's not a word one should attach to another person under any circumstance, in my opinion. Second off, why would someone assume that another person is mentally challenged just because they are physically challenged? Or vice versa for that matter.

Well, as I said they were very young (late teens, early 20's), and I don't think he meant it in a bad way. His tone of voice was more like he was telling his friend to cut me some slack. But as I sit here waiting for my meds to kick in and trying to ignore the twisting pain in my foot and ankle from the dystonia, I feel a little discouraged about the state of Parkinson's awareness.

Oh well, we just need to keep on working on it!

Sunday, December 6, 2009

Volunteer Therapy

Bob's feeling well again, thank God, so yesterday we spent a few hours volunteering at a USO care package stuffing party. We joined a group of our co-workers in a huge assembly line, putting together care packages for the troops in Iraq and Afghanistan. We worked, we danced, we laughed and at the end of the morning we had put together and boxed up over 10,000 care packages. It was great!

There's something empowering about helping others, even in a small way. It makes me realize that I still have plenty to offer, and that Parkinson's can't really get me down.

Today, I'm going to try selling some of my jewelry at the local Christmas bazaar as a benefit for the Michael J. Fox Foundation. Even if I just sell one thing, I'll feel like I accomplished something, so wish me luck!

Friday, November 27, 2009

Holy Role Reversal, Batman!

Suddenly, I'm the caregiver.

Yesterday was a nightmare. Everything was fine and normal all morning; I had just put the turkey in the oven and was sitting down to take a break and do some crochet, when my husband Bob came upstairs saying he didn't feel well. He hardly ever gets sick, and when he does, he very rarely complains, so I knew something was really wrong. When he let go of the banister at the top of the stairs, he almost fell; I had to help him get to the couch. He said he felt like the room was spinning; he was white as a sheet and sweating like crazy. He had vertigo; vertigo so bad that he couldn't walk, and kept throwing up. I called 911, and they came and did some quick tests and evaluations, picked him up and hauled him down the front steps and put him in an ambulance.

I followed the ambulance to the emergency room; I was so upset, I swear I don't remember a moment of that drive. It took a few hours and a parade of young doctors, nurses and interns, but they finally figured out that Bob did NOT have a heart problem or a stroke (thank God!!). His only symptom was severe vertigo and the nausea that goes with it. You could see his eyes twitching back and forth, trying to track the spinning room. They gave him anti-nausea and anti-vertigo medicine, and eventually, after he was feeling better, they sent us home.

They think he has some calcification or something in his inner ear, which has gotten lodged in the wrong place and is causing this problem. I hope he's feeling better today; he isn't up yet, and I'm sitting here listening for signs that he's gotten out of bed, because if it's anything like yesterday, he won't be able to walk without help.

It's so strange; I've gotten so used to being the one that needs help! I didn't realize how much I've come to depend on Bob. Well, even though we didn't get our turkey dinner last night, I'm still so grateful for my blessings. In fact, I'm even more grateful now! It could have been so much worse. And here's a silver lining for you; I had my son turn the oven down to 200 degrees so the turkey wouldn't get overdone, and that turkey is the BEST I've ever cooked! I was starving last night when we got home, and I sliced off a piece. Delicious!! Maybe next year I'll cook it the same way, but WITHOUT the trip to the emergency room...

Wednesday, November 25, 2009

Thanksgiving is upon us

So, it's Thanksgiving time again. I like to count my blessings at Thanksgiving, and I've found more and more that it's a good idea to count my blessings a little more often. Like, every day, for instance. I find it very comforting, so I'm going to do a little of that now.

Blessings:

My husband, my son
My parents, my friends
A job that I love,
Though it never ends.

The world in its beauty,
The love in my heart,
My dog and my cat,
How's that for a start?

Bumps in the road,
That show me my strength,
Even these become blessings,
At least at some length.

Most of all, I am glad
Of the love I that I learn,
When I stop being mad,
And I love in return.

Happy Thanksgiving, you wonderful world, you!

Saturday, November 21, 2009

Foot Dystonia; more surprises from PD

I have recently developed foot dystonia. This is not fun; it's like my toes suddenly decide that they can't stand each other's company and are trying to leave. What happens is this: my big toe forces itself up and the other toes force themselves down until it hurts. I can't control it; I can sometimes force the toes to relax for a few seconds, but then they go right back to trying to twist themselves off of my foot. It's quite painful, and it's not something I expected. I've had muscle cramps before, but this is a whole new category of pain. Fortunately, it only happens in the morning and sometimes at night after my meds have worn off, and it seems to only affect the left foot so far.

The doctor has increased my Requip dosage, which puzzled me a little until I did some reading about Dystonia and Parkinson's on the net. It turns out that foot dystonia is one of the hallmarks of Young-Onset Parkinson's, and they think it's caused by levadopa therapy, just as dyskinesia is. Therefore, increasing the levadopa (Stalevo, in my case) would be a bad idea.

I hope this works!

Wednesday, November 11, 2009

On Shaky Ground.... about tremors

I nice fellow name Hal recently posted a request for me to describe my tremors in more detail, and it got me thinking about the subject of tremors in general. I used to think (as I imagine most people do) that Parkinson's was all about tremors. Not so. Some Parkinson's patients don't have any tremors at all, and some (like me) have minimal tremors. Furthermore, a lot of books and medical web sites describe the "typical" Parkinson's tremor in great detail; it's a "resting tremor" and doesn't happen when you go to do something with the shaky hand, it's a "pill-rolling" tremor, the frequency of the tremor is such-and-such, it always starts on one side, etc, etc. WRONG!

Yes, these are typical profiles of Parkinson's tremor, but as with everything associated with this crazy disease, every patient has a unique experience. In fact, for some time I was convinced that I didn't have Parkinson's because my tremor wasn't a "pill-rolling" tremor, and it didn't happen just at rest. My neurologist gently pointed out that I had a lot of other symptoms that pointed to PD, and he'd seen many Parkinson's patients with a tremor very much like mine. Here's another little tidbit that one doesn't always glean from the books and web sites (well, I didn't, anyway): the tremor can change quite a bit over time, the same way other symptoms do. For me, it started out as a pretty fast tremor that happened when I was trying to type or do other fiddly little tasks, then it "evolved" into a classic "pill-rolling" tremor, but that was way after I was diagnosed. Now, I hardly ever have tremors at all; I have more problems with stiffness and slowness.

If I had a nickel for every person who has said to me "How can you have Parkinson's? You don't look shaky", I'd be rich. Well... actually I'd probably have about a dollar, but you get my point.

I think I'll go make some Shake 'n' Bake for dinner...

Monday, November 2, 2009

Rough Weekend

Rough weekend. I can't go into it here, but something terrible has happened in my family, and I've been so worried and stressed. All weekend, every time I started to relax and cheer up, the phone would ring and it would start all over. Of course, Old Man Parkinson is taking this opportunity to drag me down and turn me into his puppet. Ironically, one of the things that having PD has taught me is that you can't let these things get you down. You just need to do everything you reasonably can, and then "turn over" the stuff you can't do anything about.

Doing better now; I think of the words of one of my favorite songs, and it always helps:

SMILE
Words by John Turner and Geoffrey Parsons
Music by Charlie Chaplin (really!)

Smile, though you're heart is aching.
Smile, even though it's breaking.
When there are clouds in the sky
You'll get by
If you smile through your fear and sorrow,
Smile, and maybe tomorrow
You'll see the sun come shining through
for you.

Light up your face with gladness,
Hide every trace of sadness,
although a tear may be ever so near.
That's the time you must keep on trying,
Smile; what's the use of crying?
You'll see that life is still worthwhile
if you'll just smile.

Saturday, October 24, 2009

Things I wish I knew when I was diagnosed,

There are so many things about this disease that I wish I had really, really understood when I was first diagnosed. I mean, I read about these things, but I didn't fully grasp the concepts. Here's a partial list of concepts and advice that I wish I had listened to a little better:

1.) Parkinson's is TRULY different for different people. There really is no point in comparing your symptoms to someone else's because everyone gets their own personal version of the disease.

2.) Symptoms come and symptoms go, but true Parkinson's symptoms are GRADUAL. Anything that changes very quickly (within the course of a few days or a week) is probably NOT Parkinson's progression. If you experience a very sudden increase in Parkinson's symptoms, it usually means that you have some underlying health problem, like an infection or a virus or something, or perhaps some emotional stress. If this lasts more than a few weeks, you might want to discuss the possibility of something other than Parkinson's with your neuro. The mills of Parkinson's grind slowly, but they grind exceedingly small.

3.) Sometimes, you feel awful, but everyone thinks you're fine. We get very, very good at masking symptoms, especially at first. People don't understand what it costs you to look "normal", so try not to get mad when someone says "but you can't have Parkinson's; you look so well!". Take it as a compliment.

4.) It will make your life infinitely easier if you start learning to ask for and accept help now, because you ARE going to need help at some point. However; DON'T ask for trouble. If you feel well enough to go to work, go to work. If you feel well enough to dance, dance. Don't assume that a Parkinson's diagnosis means that you have to behave a certain way. Try to honestly evaluate your capabilities on a constant basis, and don't give up something you love if you don't have to.

5.) Listen to what others say. Often, you are not aware of the "quirks" that others see. One of the things that sent me to the doctor in the first place was the fact that my co-workers had begun to tease me about my "robot walk".

6.) Don't worry; be happy. I know; easier said than done, but try, try, try to keep a positive attitude. Do whatever it takes to keep your rose-colored glasses on. Do something positive: join a support group, participate in fundraising events and/or clinical trials and studies, DONATE YOUR BRAIN. Brain dissection is still the only sure way to diagnose most neurological disorders, and provides an absolutely invaluable source of information to researchers. Healthy brains are needed for comparison, too, so encourage your friends and family to donate their brains as well.

7.) Communicate. Tell others about your condition. When you are not feeling well, let people know. Take advantage of opportunities to educate others about PD.

8.) Most important of all: helping others helps you, too. At least, that's what I have found. Donate blood, become a bone marrow donor, volunteer in your community. Remember that there are lots of people out there who are worse off than you are, and if you can help them, it will empower you and remind you that you still have strength, wisdom and courage to share.

Friday, October 23, 2009

O.K.; maybe I spoke too soon

I think maybe I did push myself a little too far last weekend. All this week I've been having major "wearing off" problems; I can't even do my crochet after around 8:30 to 9:00 at night. I'm so stiff in the mornings, too. It's hard to even walk. My meds don't even seem to kick in until after 8:00 a.m., and I take my first dose at 5:00 - 5:30 a.m.!

Well, I'll wait a week or so and then call my neuro and see if there's a medication adjustment I can make. Ughh.

In the meantime, our son has brought home a whole bunch of friends this weekend, so I'm not going to be able to relax much. Maybe that's a good thing. We'll see...

Tuesday, October 20, 2009

Sometimes I surprise myself


Whew! What a wonderful trip to Disneyland we had! It's very fun, but very tiring, and here's a phenomenon I found amazing; I get stronger the more I push myself. The first day, I had to use my cane. I was exhausted and having problems with pain and balance. The second day, I started out with my cane, but put it away about halfway through the day. The third day, I didn't even take my cane out of the backpack!

What does this mean? I guess it means that I need to push my body to the limit if I want the limit to expand.

Thursday, October 15, 2009

I'm in Disneyland!

Woo Hoo! Bob and I are in Disneyland! Well, to be precise, we're at our hotel across the street from Disneyland, but we'll be in the park tomorrow morning. We are finally celebrating our 24th wedding anniversary (which was in September). I'm so excited! I love this place! More to follow...

Sunday, October 11, 2009

Bummer; we lost.

Today, the 49ers lost to Atlanta 45 to 10. This is all I have to say about that:

On San Francisco Bay today the sun was shining bright,
But not for Forty-Niners fans, the “stick” was dark as night.
The Falcons clipped our wings today and it was more than luck,
Right now, I’m mad enough to say “THE FORTY NINERS SUCK”!

Sorry; had to get that off my chest...

Tuesday, October 6, 2009


New symptoms are creeping up on me. I was feeling like I was being stalked by the stupid disease again, so I wrote this:

Sunday, September 27, 2009

Just Okay

I remember what I used to say
When someone asked "How are you today?"
I used to shrug and say "okay"
That's all I had to say; "okay"

And now that I am not okay,
When someone asks "how are you today?"
I smile and say "Doing GREAT today!"
"And thanks for asking, by the way"
Because I know that one fine day,
I'll wish I had today's "okay"

I guess what I really mean to say,
Is there's no such thing as "just okay".

So, how is everyone today?

Sunday, September 20, 2009

A Dubious Anniversary

Three years ago today I sat in the neurologist's office holding my husband's hand and receiving the news that I had Parkinson's Disease. It was surrealistic; we talked calmly about treatment options and disease progression and symptoms, and all the while a little voice in my head was screaming "You've got to be kidding me!". On the one hand, I was a little relieved to know what was wrong with me, and to know that it was most likely not something more serious, like ALS or a Parkinson's Plus syndrome or something like that. On the other hand, I felt that my future had been suddenly taken away from me. I always pictured myself growing old gracefully; staying active and strong, enjoying life with my husband, learning new things. I thought I would be one of those people that others look at and say "I can't believe she's 80!". Now, I suppose that in ten years or so, people will look at me and say "I can't believe she's only 60!".

The thing is, though, that the future was always uncertain. Nothing has changed. To think that you know what your future holds is just self-deception. Since I've realized that, I look forward to the future again, but I also enjoy the present maybe just a little bit more...

Friday, September 18, 2009

To Medicate or Not to Medicate; That is the Question

When I was first diagnosed with Parkinson's, my neurologist and I discussed the various medication options. To my surprise, one of the options was no medication at all. That hadn't occurred to me. Why would you NOT want medication for a condition that was interfering with your life? Well, I've since discovered that some people (and some doctors) feel that the first 5 or 6 years that you're on medication are considered the "honeymoon" years, when the drugs work really well. They feel that you might want to wait until your symptoms are severe before you start this "honeymoon" period, and not waste it when you're feeling relatively well. Also, the sooner you take levadopa (which pretty much all PD patients will eventually), the sooner you will experience side effects like dyskinesias; those uncontrollable writhing motions that we've all seen Michael J. Fox and others exhibit.

I've thought about this a lot, and I know it's a very individual decision, and there are pros and cons either way, but personally, I am SOOO glad I opted to get medication right away. After all, what am I saving the experience of feeling better for; a rainy day? It's raining NOW. Why wait until I'm older and less capable of doing the things I want to do anyway? Why not NOW? Maybe I'll end up with dyskinesias a few years earlier, but who cares? Right now, I'm working full time, I walk every day, I take ballroom dancing lessons every week, and I was able to dance until past midnight at my brother's wedding. I'm more fit than I have been in ten years or so, and I feel better than I have in at least 5 years. For me, it was the right decision. We put things off and say to ourselves "Someday, I'm going to.....". Then we run out of "somedays".

Wednesday, September 2, 2009

What a wonderful world...


I just got back from NY after the most wonderful wedding. I think that's the most fun I've ever had at a wedding, including my own! Beautiful ceremony, smiles and tears of joy, lovely music, great food, lots of dancing; what more could one wish for? But the best part was to see my brother standing there under the canopy with his beautiful bride, wearing the happiest expression I've ever seen on his face. I was trying to hard not to cry during the ceremony, and what happens? My calm and phlegmatic brother starts crying while saying his vows!


Drew and Debra at their wedding rehearsal dinner at a really cool Brazilian restaurant in NYC

I was very pleasantly surprised, too, to find that I was not only able to stay up past midnight, but also to dance almost every other song! I really didn't think I could do it, but I just gave it a shot, and it turns out I could. I'm still paying for it with aches and pains, but it was SOOO worth it!

During the week, we also got a chance to visit with friends and family, some of whom I haven't seen in... forever. In fact, my cousin Elaine was there, and I don't think I've seen her since we were both kids. Yes, that was a LONG time ago, but let's not go there... I also got to visit with my aunt and uncle (fun and fascinating people; my aunt is a successful artist and art teacher and a real hoot as well), and my other cousin and his family (he has a 13 year old daughter who's taller than me!). I was reminded of what an extraordinary family I am part of, and I'm so happy that we're now part of another incredible family, too. What a combination!


Drew and Debra at the wedding reception.


My Dad and Bob try on their tuxedos

Saturday, August 22, 2009

Wedding bells for my brother, Drew!

Tomorrow we're off to New York again; this time for my "little" brother Drew's wedding on the 29th of August. His fiance, Debra, is an absolute peach! Here's a picture of the happy couple:


I'm so excited; this is going to be great!! Every now and then, you see a couple who are just perfect for each other, and you know that there is something special about them. Drew and Debra are like that. They are both so warm-hearted, so funny, so smart, so talented!

The wedding itself is going to be beautiful, at sunset with the Manhattan skyline in the background. I'm going to be a bridesmaid, and Bob and Rusty are both groomsmen. I told Debra she didn't have to feel obligated to include me, but she insisted. It's going to be so much fun, but soooo tiring, too. It's going to be a challenge, I know, especially since the wedding is in the evening, and I'll be off my meds, but I'm determined to do everything I need to do and have fun as well! Bob and I will even get a chance to show off our new dance moves, I hope. Then there's all the relatives who will be in town, many of whom I haven't seen since I was a child. Got a lot of socializing to do, that's for sure.

So today, instead of just packing and resting up, we're also cleaning the house because Bob's mother and sister are coming to our house for a few days after the wedding. On top of that, there's a 49ers pre-season game this afternoon, and there's no way we can miss that. Tomorrow, we get up at 4:00 a.m. in order to get to our flight on time. Wheeeee!!! We're going to be BEAT!

I sure hope I can handle all this...

Saturday, August 1, 2009

Fun vs. exhaustion

There is a new paradigm in my life. Wait; I hate the word "paradigm"!! O.k.; I have a new way of looking at things. I used to think "I'm exhausted; I can't go to (name of event)". Now, I think "I'm going to be exhausted anyway, so I might as well have fun in the meanwhile". It seems like a small shift in attitude, but it actually adds up to a major shift. What it means is that I don't expect to feel perfect; I don't expect to feel "well". I just expect to feel well enough to do whatever the activity in question is.

Case in point: yesterday, my husband and I our son and our son's girlfriend went up to San Francisco to celebrate my brother's birthday. We went to the King Tut exhibit at the new DeYoung museum. Lots of walking, and the exhibit was very crowded and very dimly lit. All conditions that are difficult for me. Well, guess what? I had a great time anyway! The exhibit was breath-takingly beautiful, and it was great spending time with my brother and his wife. I've missed them so much! My sister-in-law, KC has a lot of health problems, and so we don't get to see them very much, even though they only live about an hour away.

I actually like the feeling of pushing my body towards its limit of endurance; it feels good to push the envelope. I just have to be a little careful, otherwise I pay for it. Recently, I've been having some "freezing" problems, and it gets worse as I get more tired. I've fallen a couple of times, and it's a very frightening thing. It's like a nightmare; I trip over something, and I can't recover. It feels like I'm wrapped up in a blanket or something; I can't stop myself from falling. So, I have to learn to avoid that, but still do what I want to do.

YOU DON'T OWN ME, PARKINSON'S!! I'M GOING TO HAVE FUN ANYWAY!!!!

Thursday, July 16, 2009

Making excuses; why should I?

Bob and I went to our ballroom dance class last night, and I found myself in the position of having to explain myself. See, I can only dance for about an hour, and then my legs start to shake and I have trouble moving them (especially the left one). I also get muscle cramps in my feet, and now I'm starting to have "freezing" problems, too, where one leg just doesn't move when the rest of the body does, so I slip and/or fall.

Last night, after a wonderful hour of learning to Samba (a really fun dance, by the way), I slipped a couple of times and almost fell, and since my feet had cramped up and I was having trouble moving anyway, I decided to call it a night. Well, several people tried to get me to keep going; they thought I was just giving up too soon, I guess. I had to explain that I have Parkinson's and I just can't keep going as long as they can. That was good enough for most of the folks, but a couple of the guys clearly didn't get it. They kept trying to encourage me to try again. I know they were trying to help, but it made me feel so "wussy"!

The problem is that I've always prided myself on not being a quitter. I may not be the best at what I'm trying to do, but I stick with it. So, when someone implies that I'm not trying hard enough, it hurts. I don't think that most people understand that it's not just a question of strength and determination. I've got plenty of strength and determination, thank you very much. I have to respect my limits, though, especially if it becomes a safety issue.

I guess next time I should say something like "Gee, I'd love to be able to keep going, but if I do, I'm likely to fall, and that wouldn't be a pretty sight. Besides, I might just take you with me!" That would get them!

Sunday, July 12, 2009

Fun at the Flea Market, and a surprise gift

Our tiny little town (official population 750, actual population probably about 1,000) had its annual flea market today, and I had a booth there. I donned my "Parkie Princess" t-shirt, and hung up the Team Fox banner I had designed. I proudly set out all the beaded jewelry I've made over the last few months, plus some gently used clothing, and set up shop in anticipation of making some money for the Michael J. Fox Foundation.

Here's my booth:

Well, it was a flea market, and not too many people were interested in buying NEW beaded jewelry; they were looking for real deals on used things. I was feeling discouraged. Then, this lovely older woman showed up, and poked around the booth for a little while, then asked me if she could take one of the informational leaflets I had printed out from the Michael J. Fox Foundation. Of course, I replied "Please, of course! Take one!", so she did and wandered off.
A while later, she came back. She said to me "I just wanted to thank you for doing this; my husband has been diagnosed with Parkinson's, and I've learned so much about it just from reading this". Well, she made my day! We chatted for a bit, and she told me that she herself had epilepsy, for which she has had a surgery similar to DBS. She also said that she thinks her husband is in denial, and she's concerned because she's heard that the longer you wait to start medication, the less effective it is. I told her that the latest research says that that's not necessarily so, and in any case it varies widely from patient to patient.
To me, this meeting was an unexpected gift. I looked at this beautiful lady, clearly so strong and courageous, and I thought "In some small way, I have helped her today". Suddenly, I didn't care that I hadn't made a lot of money at the flea market. I made something more important. I made a difference.

Tuesday, July 7, 2009

Saw the doctor yesterday...

It seems that visits with my doctors have become milestones for me. That being the case, yesterday was a great milestone in my life. I had my regular appointment with my neurologist, and he confirmed my suspicions: I'm doing FANTASTIC!! He says you can't even tell I have Parkinson's disease. I can tell, of course, but the way that I look on the outside is a reflection of how good I'm feeling on the inside. I'm walking well, I'm able to do everything I want to do (though maybe not as long as I'd like to do it :-)). I have little or no side effects from the medications to deal with. I'm doing great at work. I sleep well, I eat well; I just can't complain at all, and I don't want to! Heck, I'm taking ballroom dancing lessons once a week and doing o.k. at that, too.

The only thing of any concern is that I've had a couple of "freezing" episodes, one that caused me to fall flat on my face without being able to even bring up my hands to stop me, and one that caused an "almost" fall. The doctor says I need to do more than just be careful; I need to make sure that my path through the house is unobstructed. In other words, I just received a prescription to clean up my house. Yikes. He hasn't seen my house, obviously. I wonder if the insurance company will get me a maid, since it's doctor's orders. Hmmm..... probably not.

Thursday, June 11, 2009

Traces of Parkinson's

I have noticed all kinds of things accumulating around me. In my house, my purse, my car, my desk at work. Medication timers, pill boxes, pill cutters, pills in bottles and blister packs and powders in white envelopes. I have a little purse around my neck most of the time; it holds my medication timer and meds. I have a collapsible cane and a shoulder holster to carry it in; it hangs in my closet most of the time, unless I have some serious walking to do.

Downstairs by the computer are old versions of flyers and handouts for various fund raising events I've participated in. There are printouts of jewelry designs (also for fund raising events). Our hard disk is filling up with my designs for T-shirts, pamphlets, flyers, banners, jewelry, all for fighting Parkinson's.

I've also noticed that Parkinson's apparently causes piles. Piles of unwashed laundry, piles of unfolded clean laundry, piles of dishes, piles of old newspapers, piles of bead containers and craft boxes.

I don't know where I'm going with this, or why it makes me sad. It's just a sad kind of day, and I sometimes wish all these traces of Parkinson's would disappear and everything would be like it used to be. On the other hand, there are so many good things I've accumulated, I wouldn't give them up for anything. Especially the friends.

Saturday, May 30, 2009

I Yam What I Yam and That's All That I Yam

Sitting in the hair stylist's chair while the grey is slowly being removed from my hair, I get introspective. I think: this is the only thing I do as a concession to age.

On the heels of that thought, is this one: I have become one of the people I used to secretly laugh at when I was young. You know; those middle-aged people who stopped maturing but kept aging? I see myself sitting there in my flip-flops, jeans and Star Trek t-shirt and I think: when are you going to grow up?

I have essentially the same wardrobe I did in high school, just a few sizes larger. I play video games when I'm supposed to be doing housework. I have 3 Game Boys because they keep coming out with cooler ones. I occasionally watch Saturday morning cartoons. I quote Mel Brooks movies and Monty Python and Star Trek. I like Gummi Bears. I wear beads, I play the ukulele, I never style my hair or wear much makeup. I think it's funny to give my age in hexidecimal. I only wear pantyhose maybe once or twice a year. I know all 150 of the original Pokemon types. I know how to pronounce "Pokemon". I love all things Disney, and when I die, I want to have my ashes exploded with the fireworks over Disneyland. WHAT THE HELL KIND OF 49-YEAR-OLD IS THAT?

There was a long silence in my head after that question. Then the answer came: "Your kind".

The fact is that I am who and what I am. I'm just not going to let any one thing define me; not my age, not my job, not even my family and most certainly not some stupid disease. All of those things are part of who I am, but not one of them alone defines me. There are no rules about who I have to be just because of my age or anything else. So there.

Dang. I'm all out of Gummi Bears. Where's my Game Boy?

Monday, May 25, 2009

A Difficult But Lovely Weekend

I'm so proud of myself!! I just got back from a fun, but physically challenging weekend, and I DID IT!! We went on our traditional Memorial Day weekend boat trip to Folsom Lake this weekend, and boating is hard work. I was worried that I wouldn't be able to pull my own weight any more. I managed, though, I managed. Not only was it a lot of physical work, but there were also some challenges to overcome. The trip start out inauspiciously. We had been driving about an hour and a half when suddenly, Bob said "Uh Oh" in that tone of voice that says something is really wrong. There was smoke pouring from the axle of the boat trailer. He carefully pulled over just as the tire went "KAPOW!". He went to go look at the damage, and found that the axle of the trailer was broken clean through. After scratching our heads for a few minutes and making some fruitless calls to trailer repair places, we unhitched the boat, left it sitting forlornly by the side of the rode and drove into the town of Tracy to get help. We got this helpful tow truck driver to come out and help us; here he is taking the wheel off:Note the angle of the wheel!
Then, he chained up the broken axle:

We limped our poor trailer to a place called "Travln Toys" and they did a great job. It turns out that by coincidence they had an extra axle for our trailer, which they had gotten with another order! So, in about an hour and a half, we were on the road again.

It was all worth it, though. What a beautiful evening! Especially after we finally got the boat in the water and went and found our friends and rafted up with them for the evening.
Here we are on our boat, the "Miracle Max":

Here's the raft of boats on Saturday night:

We had a ball the rest of the weekend. I'm exhausted, but I have a whole bunch of memories to treasure. I guess my point is that you don't want to give up doing the things you want to do, living the life you want to live, just because of PD, unless you absolutely have to. You never know what all you can do until you try.

I'm going to go limp off and watch some t.v. now....

Saturday, May 23, 2009

Mystery Donor

Someone made a big donation on my Parkinson's Unity Walk page under the name "Network for Good". I don't know who you are, but THANK YOU SO MUCH!!! What a wonderful surprise that was this morning!

Sunday, May 17, 2009

By the twitching of my thumbs...

"It" has spread to my right side. I noticed it yesterday while I was drawing; my right hand was twitching. I put it down to tired muscles. This morning at around 4:30 as I lay in bed trying to go back to sleep, my left hand trembling a bit as usual when I'm off my meds, I noticed my right thumb twitching, a tiny counterpoint. It's not much, and it only happens under certain circumstances, but that's how the original tremor on my left side started.

I didn't expect this, not so soon. But that's the way this disease works; just when you think you've got it under control, it sneaks into some new territory like an attacking enemy in the night. That's o.k.. I fought it on my left side, and I'll fight it on my right!

Saturday, May 9, 2009

Waking up with Old Man Parkinson

A typical morning for me:

Up at 4:00 or 4:30. Shuffle, shuffle, shuffle to the kitchen. Take my Zelapar, it dissolves instantly, leaving a grapefruit tang in my mouth. Notice that the dog is following me around, drooling. Feed the dog. Get my study drug out; a packet of white powder, mix it with juice. Take a vitamin B12 and my first Stalevo (levadopa, carbidopa, entacapone) of the day. Amazed that I know what all those things are now. Shuffle, shuffle, shuffle. Bent over like an old lady. Now the dog has finished his breakfast and wants a treat. Get the dog a treat, but try not to do it right over my slippers, because I prefer them free of dog drool. Shuffle, shuffle to my pill box laying on the counter. Fill it with my pills for the day: another Stalevo for the 8:00 a.m. dose, plus 4 Requip XL pills. 5 more Stalevo tablets for 8:00, 10:30, 1:00, 3:30, and 6:00. Put the pill box in the special shoulder bag I made for it. The bag is getting worn now. Time to go downstairs and make coffee. Shuffle, shuffle... step carefully down the stairs. Look out for the cat zooming under my feet. Forgot my slippers upstairs; shuffle, shuffle, shuffle back up to get them. Back downstairs with warmer feet. Make the coffee, then sit at the computer, exhausted, and wonder how I'll get through the day. Waiting for the levadopa to kick in, I remind myself that so many people have worse things to worry about. I am a lucky person. I know this, but in the morning I forget sometimes.

I'm so glad I have a dog to drool in my slippers, a cat to trip me on the stairs, a house in the woods with beautiful trees all around and the most wonderful man in the world to love me.

Friday, May 8, 2009

Article about me in the company newspaper


The company I work for very kindly had an article written about me in the company paper, "New Horizons". My boss and HIS boss and I were all interviewed on the phone by a young lady named Amy who was not only a very good writer and very efficient, but also very nice, too (good job, Amy!). Anyway, here's the article:


Marian Bumala, circuit design engineer, embraces challenge. Working for the past 25 years at the Advanced Technology Center in Palo Alto, Calif., she shoulders a lot of responsibility in developing complex instruments to further our nations’ space exploration. So it is no surprise when she was diagnosed six years ago with young-onset Parkinson’s disease, a degenerative disease of the brain that can impair motor skills, that she faced the challenge squarely on all fronts. But Bumala’s story isn’t just about her disease. It’s about teamwork between a hard-working employee and colleagues who value her input.

Continually amazed by her teammates’ support, Bumala praises Space System Company for its commitment to helping employees living with diseases such as Parkinson’s. “I am so thankful for my job and for my co-workers outpouring support as I learn to deal with the emotional and physical effects of living with this disease. I have been able to remain an active and contributing member of the team in spite of my illness. There’s no doubt in my mind that staying active on my work team has contributed to my success in dealing with the disease thus far,” says Bumala.
Her manager, Stephen Fuselier, says he was saddened when he heard of Bumala’s diagnosis, and is committed to ensuring she remains a contributing member of the team. “We will continue to do everything we can to accommodate Marian’s needs,” says Fuselier. “She is a valuable asset to this organization and makes great contributions to our team and our customers.”

Bumala also has the support of many peers. Her colleagues are tuned into Bumala’s diminished capacity for multi-tasking and sitting for long periods of time in meetings. “My colleagues’ support enhances my morale,” says Bumala. “I am encouraged and motivated to keep working as long as the disease allows.”
Earl Aamodt, research engineer, has worked with Bumala for the past 23 years and has provided her with a lot of emotional support since her diagnosis. “When I found out Marian was diagnosed with Parkinson’s disease it hit close to home because my mother passed away from the disease,” says Aamodt. “Marian has become a close friend of mine over the years and she knows I am available anytime she needs me whether it be for emotional support or help on the job.”

Bumala has directed her self-described proactive personality to help fight the disease on the national stage. She is a passionate fundraiser for the Michael J. Fox foundation and is participating in the Parkinson’s Unity Walk this April in New York. “Being proactive and positive is the best medicine,” she says. “I have been able to raise over $6,000 for Parkinson’s disease research largely thanks to my generous co-workers. The company even donated a wheelchair for me to use during a 5K walk I participated in for Parkinson’s disease in San Francisco last year.


I'm so grateful for my job, my immediate superiors (who are also friends of mine) and my wonderful co-workers. What an amazing group of people!

Thursday, April 30, 2009

The Walk

The Parkinson's Unity Walk... Wow; what an experience that was. It was uplifting and yet sad in some ways, happy and bittersweet. It was proud and defiant, yet humbling as well. To see all those thousands of people whose lives have been altered by PD in the same ways that the lives of my family and myself have been... well, it's indescribable.

It was also unexpectedly physically challenging for me. I think it was because it was so hot (around 85 degrees), and we had to sit still so long waiting for the speechifying to finish up. Anyway, for whatever reason, my leg started acting up again about halfway through and I had to depend on my cane to finish the walk. I made it, though! It was so great to have my family and friends there with me, too.

Regrets:
1) Friends that couldn't make it there.
2) Not being able to meet with everyone that I knew, and not having enough time with those I did meet.
3) Getting separated from most of the team.
4) Not being able to get the people around us to sing with us as we played our little ukulele song!

Special joys:
1) The weather. It was hot, but so beautiful! I'd rather have that than rain and cold any day.
2) Meeting so many "famous" people for the first time face to face (like Cherie, and Rachenista, and Tigger Girl, and Mamamia, and Dixie Pixie, and Dylis, and Moakes and Jeana, and ... well, you all know who you are!).
3) Seeing our beautiful quilt unfolded for the first time, and seeing the admiration and appreciation on everyone's faces.
4) Just observing all the different people there; babies, children, young adults, baby boomers like us, older people, people of all colors and types. I smile when I think of the group of young guys with their skateboards who just came in off the street and walked with us for a while. After about 10 minutes, one of them asked "So... what are we marching for?". Love it.

Thursday, April 23, 2009

Two more days

Here we are in NY state, about 40 minutes from NYC. It's two days until the Unity Walk, and we are all sick. Me, my Dad, my brother, my husband; we all have a bad cold. I imagine that my Mom and my brother's fiance, Debra are next. On top of that, my Mom is not doing as well as she had hoped. We were supposed to all go to a show and to dinner in the city yesterday, but she couldn't come. She broke her back a couple years ago, and has never really recovered. Last night, she fell again. I'm so worried about her, and I'm not sure what to do. My husband and I are supposed to go up to Brooklyn and spend the next few days with my brother and Debra (they're going to the Walk with us), but I just don't know.

Well, I'm pretty sure I'll make it to the Walk one way or another. I can't imagine coming all this way, being only 40 minutes away and not going!

Wish me and my family luck... I think we need it.

Friday, April 17, 2009

Off on the road to NY

So here I am, getting ready to leave for NY. We'll be visiting with my family for a week, then participating in the Parkinson's Unity Walk in Central Park on the 25th. I'm so excited!! It's going to be an emotional event for me, I'm sure.

My blood work came back normal, so maybe I don't have to worry about hemochromatosis right now. I'm glad I found that out before we left on our trip; I hate worrying about that kind of stuff, especially when I'm trying to relax and have fun!

Unfortunately, I'm in a little pain, because we got a little over-enthusiastic while dancing the other day, and the upshot is I think I may have broken a rib. If nothing else I pulled the heck out of the muscles and/or bruised the chest. Oh well, into every life a lttle rain must fall, right? Nothing is going to ruin the Unity Walk for me!

Monday, April 13, 2009

More on Hemochromatosis

Did some research last night about Hemochromatosis and found this interesting little tidbit from the Iron Disorders Institute web site:

Mismanaged iron in the brain is seen in those patients with neurodegenerative diseases: Alzheimer's, early onset Parkinson's, epilepsy, multiple sclerosis, and Huntington's disease.


Hmmm.... makes you wonder. In the last 4 years, I've had 2 spikes in blood iron. I compared the testing dates with my blood donor history and found that in both cases, there had been a "gap" in my regular blood donations for one reason or another. The worst one happened after I hadn't given blood for over a year.

I think I need to talk to my doctor about this, especially since I'm no longer menstruating, so I'm at higher risk for extra iron building up in my body. I also need to do some more research.

Saturday, April 11, 2009

Genetic testing results from 23andMe

I got my test results back from 23andMe last night. After puzzling over the reports for a while, I figured out the following facts of significance to me:

1) I do NOT have the LRRK marker that is associated with the highest risk of genetic PD. My risk for Parkinson's is listed as dead average. The great news here is that my son is unlikely to inherit PD from me, and the rest of my family does not have an increased genetic risk either.

2) I do NOT have any of the 3 BRCA mutations most commonly associated with inherited breast cancer; this is a HUGE relief to me, especially in light of my family history.

3) I DO have an increased risk of Rheumatoid Arthritis, type 1 diabetes and age-related macular degeneration.

4) I carry 2 copies of a gene mutation for Hereditary Hemachromatosis, giving me a "mildly increased" risk of Hemachromatosis (iron overload). This is interesting to me, because I have had problems with anemia not associated with low iron, and I have also tested high in iron on a couple of occasions. Unfortunately, this is something that can be passed on to one's children.

5) I also MAY have an increased risk of abdominal aortic aneurysms, alcohol dependence, brain aneurysm, heroin addiction, exfoliation glaucoma, dyslexia, and something called Primary Sjorgen's Syndrome, whatever that is.

Whatever. I'm not sure what to think about any of that yet. I'm not really worried, though.

My ancestry turns out to be very boring; I come from entirely European stock. My genetic "haplogroup" is listed as European type "H", which is mostly Scandinavian and Basque populations, but is spread all over Europe and the near East. I kind of knew that, but I was hoping for something exotic in my genetic makeup! Oh well. I guess my ancestors were Vikings.

All in all, the data are very interesting, and I'm glad I took the "23andME" offer. The folks from "23andMe" came to talk to our support group today, and that was very interesting as well. I think this is an exciting project, and I'm very glad that I have the opportunity to participate.

Monday, April 6, 2009

Good advice; PLEASE READ THIS!!

My friend Sherri at Parkinson's Journey wrote an excellent article on "awareness" and what that means. She also has some terrific advice, not only for people with Parkinson's or other chronic illnesses, but really for everyone. There's a link to the Parkinson's Journey blog on the right side of the page, but here's a link to Sherri's article:
http://parkinsonsjourney.com/aware-an-extraordinary-action

Wednesday, April 1, 2009

Comforting images


I don't know about anyone else, but whenever I start to stress, I hold an image in my mind of a place where I feel safe and happy. In my case, that's my grandparents' house in New Mexico back when I was a child. I was thinking of this the other day, and this poem kind of wrote itself in my head:

Wind in the trees,
Warm Summer breeze,
Grandma’s garden in bloom,
Quiet windowseat room.

Rain on the mesa,
Lightning in the air,
Thunderheads rolling,
Wild wind in my hair.

The music of rain falling,
The sound of Grandma calling,
The thirsty desert sighing,
The sudden storm is dying.

Colors on the mesa,
The dusty scent of rain,
Bittersweet and vivid memory,
Always there to ease my pain.

Wind in the trees,
Soft desert breeze,
Though all this is gone,
In my mind it lives on.

Saturday, March 28, 2009

Homework Assignment

When Judy left us (leaving our world a little less colorful by contrast) she gave us a homework assignment. We each drew a random name of one of the others, and were tasked with writing a paragraph about that person. Well, everyone has done that, and here are the results:

"Marian on this assignment (and Marian gets a gold star for turning hers in first):
Anyway, here is my "homework assignment". Turns out, my dog didn't eat it after all!
About My Friend Karen (by Marian)
I used to think that courage meant not being afraid. I used to think that strength meant not crying when your heart was breaking. Then I met Karen. She showed me that courage means going on even though you’re afraid, and strength means reaching out to others even though you’re crying. Karen has looked into the eyes of despair and rejected it. She has laughed through her tears and defied the odds. She has reached out with a strong hand to help others while her world was turning upside down. She is a wise woman and a joyful (and sometimes frightened) little girl all at the same time, and I’m so proud and happy to say that she is also my friend.
Love ya,
Marian
About my friend Sherri (by Judy)
I learned alot about my friend Sherri when she came to visit me in Tennessee in January, so this is a cumulative summary of some of her characteristics. Sherri is of course a writer, so she soaks up things about people without much outward interaction at first. And then I think she evaluates a person or situation with her heart and mind and interacts in a most sensitive manner. She may seem shy upon first meeting her, but then when she speaks what she says is very thoughtful and sincere. She is tentative about sharing much about herself at first, and she puts on the front of handling life with PD quite well, but I'm pretty sure that is because she puts all the hard life stuff in God's hands. Her faith is a strength much greater than her own because she has experienced God's strength in her life before and knows she can depend on it above all others.
While at her home I got to see her with the ones who make her most proud, her family, but I love the look on her face when she talks about and plays with her 'bright spot'...her one year old granddaughter. It is a very special bond they share! And I got to share for an afternoon planting and digging in the dirt with her--another one of her passions. And I learned, here is one way we are different....I like admiring the end result of it all...the lovely garden, and will gladly leave the diggin', sweating, and wondering if what I just planted will grow process to others like her! lol Sherri may look like she is too serious (PD masked facial look) but she can get zannie and silly just as fast as the rest of us!! And her KGB jokes are a riot! To me though, the most impressive characteristic and the trait I most admire in her is her compassionate heart. You immediately sense it, you know it by her words and actions, and in her writings as well. She is selfless, funny, and a wonderful person to know and call my friend.. Thanks Sherri for making my adventure so very special. 4 ever admiring your heart....judy
About my friend Judy (by Karen)
It was nearly two years ago Judy and I met online through a support forum known as Patients Like Me (PLM). She reached out to me through an instant message system they had at PLM. From there a friendship began to blossom. It would not take long before I would really learn exactly what Judy was all about…OK well maybe not exactly she just too unique of an individual for that! Judy has a heart of gold and a spirit of passion for God that stretches beyond the heavens. She has a sense of humor that is infectious especially when she starts to laugh and she also knows how to be not only a compassionate friend, but also giving.

I will never forget the time I came home from work in the afternoon; I was feeling not only emotionally beat up by Parkinson’s but also physically. I had been home on disability and had gone back to work, which was grueling every morning for me. One particular day stands out in my memory; I was too ill to continue my day at work and had to leave after only being at work a few hours. I called Judy on my cell phone en-route home in tears. I felt not only disappointed and betrayed by my body, but embarrassed to admit to my employer that I was having a hard time working a full day. After I had been home for a while my telephone rang; it was Judy on the other end giggling and telling me that when my front door bell rang to open it and sign the paper and please add a tip…I said "What???" she continued to giggle to the point she was in tears on the other end and gasping to catch her breath and then blurted out to me "what kind of pizza do you like??" Yep you guessed it the bighearted Tennessee wild woman ordered me lunch…all the way from Tennessee…I have never had anyone do that for me! Not only was I surprised but so was her credit card company when they called her concerned someone in CA had gotten a hold of her credit card and was using it!! Looking back upon the memory of that very day showed me the heart this gal has for her friends.

Last week Judy made a trip out to the west coast and Marian (another CA gal) and I were on the list of visits…we had a grand time with Judy, Sherri, Marian and myself…No one but Judy could preplan the fun she had in store for us…she went out to the car and returned with a bag filled with small cups of different colors of Play dough…giggled and said "OK everyone pick 3!" We laughed, we sculpted, it was great fun to see four women ranging in age from their 40’s and 50’s so young at heart, each intensely immersed in creating masterpieces! Judy you truly are a wonderful, energetic, vivacious woman…thank you for your friendship!

About my friend Jeanette (by Judy)
I really think I threw my friend in Washington state, Jeanette, a curve ball she never expected when I asked her if I could come and visit her! That's just the way she is ...unassuming the power of her friendship and the blessing of her attitude. If there was a bubbling- over joyous-friend award, she would get it! I so wish she could have come along on the rest of my adventure with me....she would have fit right in...lil bit serious...whole lot of fun and giggles. The other thing so special about Jeanette is how much she just loves people and children and animals. She finds something good in everyone and everything to be grateful to God about. I had the joy of attending her church with her on Sunday morning and it was just a great time of fellowship. Later that day we went on a ferry boat ride and talked Jeanette into coming to Tennessee to visit sometime in the near future. I'm holding her to that promise, no matter what! The thing I absolutely love about Jeanette is her laugh! It is so fun filled and she uses it alot. And she also has the best dead pan humor that is always got me grinning. So Jeanette is my joyful friend. Don't misunderstand, she has her days too when life gets hard, but it doesn't take her long to look and find a blessing to claim or something to laugh about in it all, and that's an amazing thing, I think! Lov ya kiddo...looking forward to you coming to see me in TN!
Judy

About My Friend, Marian (by Sherri)
She walked around the corner as we exited the hotel and I could tell it was Marian by her smile, which matched the one on her Daily Strength and Facebook profiles. We had never officially met, only through the exchange of emails and updates through the PD community.
Marian is quiet and shy but once we all met and exchanged greetings, it was as if we all knew each other forever. Marian makes you feel important and rarely talks about herself but instead asks about you. She has an extremely strong vocabulary, evidenced by her competitive spirit in a game of Cranium. So much so that we blew Judy and her team clear out of the water in that round. An avid reader of such novels such as Moby Dick, she focuses on the importance of its message and not necessarily the size of the fish or what the author chose to name such a massive fish.
If I could use one word to describe Marian, it would be 'charming'. I'm not sure why, except that is what came to mind. She is funny, witty, innocent in her own way - perhaps it's because she made an extraordinary ukulele snake charmer couple, complete with baby snakes, out of an ordinary lump of Play-Doh.
Whatever the reason, Marian is a warm and wonderful person who went from being an acquaintance over the internet into a warm and wonderful and wacky person I am honored to call 'friend'. God is good.
Sherri
About 4 wild women I read about on Facebook by Jeanette (as described by phone to Judy) note: Jeanette knows all four of us online but had only met Judy in person (isn't she lucky?). For her assignment she was to pick some words or phrases to describe Judy, Sherri, Karen, and Marian from the pics on Facebook of Judy's trip:
Jeanette on Judy..."drop-dead gorgeous" (further evidence of her insane humor and need for new glasses!), courageous, uniter, joyful (gee, thanks J!--your check is in the mail, lol
Jeanette on Sherri--struggling (to stay awake??? she did drive awhile), deep, enduring, and a great friend (and Judy agrees!)
Jeanette on Karen--love her smile, infectous attitude, intense (as in Dr. Fernandez --but if she had witnessed the Cranium game she might change this description...lol--you had to be there...no way to describe !)
Jeanette on Marian--looks like she gets along well (with PD and others) and Sparkles as well as great PlayDoh modeler.
Jeanette also mentioned that the two Facebook pics she liked best were of the coat on the octopus bush and on the Chessman statue! Octopus one the best. And she mentioned that she would have loved being a kid again and playing with the Play doh (she said when she ran a daycare she never got to play with it..just always cleaning it up!) And she liked the picture of the sign that said "Live Life...like it's the 2 minute warning". (I did too, Jeanette! see I told ya she was crazy--in the good kind of way! )
Thanks everyone for your thoughts...I hope our blog audiences like this!"


My personal note on all of this: these are totally incredible women, and each one of them is a hero to me. How about Wonder Woman, Super Girl, Bat Girl and ... uhh can't think of another one. Anyway, you get the idea.

Tuesday, March 24, 2009

What's So Funny?

Q: What’s so funny? A: Everything!

Judy and Sherri (co-authors of the Parkinson’s Journey blog; see my blog list on the right) came to visit me and Karen this weekend, and we had a ball! We stayed up late, we laughed, we played, we ate ice cream for breakfast (well some of us did ), we laughed some more. In fact, I laughed so much this weekend, it got me thinking about why we laugh. I have a theory that laughter is partially defiance. We laugh to dispel our fear of something, and when we’re not afraid, that thing has no power over us any more. What was it Frank Herbert said… “Fear is the mind-killer, fear is the little death”? Something like that. Well, laughter is the best way to chase fear away that I know of.

So there we were, 4 grown women, sitting around Karen’s kitchen table, playing with Play-doh, (I kid you not), playing charades, taking goofy pictures of each other, and basically laughing till we cried and our stomach muscles hurt. And what do we 4 have in common? Well, a few things, but mostly we share the experience of having an incurable, chronic, degenerative brain disease that is slowly crippling us and eating away at our quality of life. Not very funny. Scary, in fact. So, we laughed at it (and everything else!) and the fear disappeared; it was like when Harry Potter and his friends waved their magic wands and yelled “Ridikulus” at a truly terrifying bogart and it turned into something silly and disappeared.

So here I am, wearing the bright pink and lime green socks that Judy gave me, and a t-shirt that says "Will Work For Dopamine". I’m going to keep laughing, and never let anybody tell me I should be more serious. “Serious” gets me nowhere, but “silly” delivers me from fear.

Sunday, March 22, 2009

Coming Down From the "Middle-Age Crazy Tour"

I will post more on this later, but suffice to say I had a WONDERFUL time meeting Judy and Sherri, the c0-authors of the Parkinson's Journey blog, and spending time with them and with Karen. We laughed, we shopped, we played with play-dough, we ate ice cream, and when we said goodbye, we cried. What an amazing group of women they (we!) are!

Saturday, March 14, 2009

23andMe and other new developments

A lot of us have been sent invitations to join "23andMe", the private genetic evaluation business at a reduced price (usually $399, special deal $25!) for a limited time. This is the brainchild of Sergey Brin, the co-founder of Google, and a well-respected figure around here ("here" being the SF Bay Area). He has arranged a partnership with 23andMe to start the biggest online research project on Parkinson's Disease EVER!
I must admit, I was confused when I got the letter about this, even though the letter was sent by two very respectable entities; the Parkinson's Institute and the Michael J. Fox Foundation. I couldn't figure out what they really wanted and why I was being asked to pay even the reduced rate of $25.oo to basically participate in a research study. Now I know; "23andMe" is a private company, and Sergey Brin has donated a LOT of his own money to underwrite the cost of their services. What happens is, they send you a genetic testing kit (a saliva test). You spit in the tube and follow whatever directions are on the kit, then send it back. In about 10 weeks you get you get a complete detailed report on your genetic makeup. This report will tell you if you have any of the genes known to cause Parkinson's (only a very small percentage of Parkies do) and also whether you have any of the genes known to cause other serious conditions, such as cancer or Huntington's Disease. The report will also include information about your ancestry, which should be interesting for most people.
This information is invaluable for researchers, especially when combined with the surveys that you have to agree to participating in when you sign up for the service. The data that are mined from this could lead to spectacular discoveries about Parkinson's. Or not; who knows? I think it's worth a shot, myself.
The thing we have to ask ourselves is this: do I WANT to know all this information about my genetics? For myself, I have a family history of breast cancer; my mother had it, and so did her mother. If I have one of the infamous breast cancer gene mutations, what will I do with that information? I'm too much of an optimist to just have my breasts removed to prevent cancer; if they told me I had a 95% chance of getting cancer, I would assume that I would be in the 5% that didn't get it. So, I would probably simply worry about it. That's just me. On the other hand, suppose I found out I DIDN'T have any of those nasty mutated genes? That would really ease my mind.
Anyway, after weighing the pros and cons, I did go ahead and sign up for it. I really think that this will help the researchers find good therapies and possibly a cure that much faster, so it will be worth it to me. I do think, though, that everyone considering signing up for it should think carefully about how the results of the test might affect their lives first.
I will certainly share anything interesting that comes of all this.

Sunday, February 22, 2009

How did you find out?

"Have you considered Parkinson's Disease?"

The words echoed in my head as my neurologist said them. His tone was kind and non-judgemental. He had asked me what I thought was causing my symptoms, and I had replied confidently that I thought it was probably Essential Tremor. I had been doing a a lot of "Googling" and he knew it.

"Have you considered Parkinson's Disease?"

I said "uhhhhhhh..... no."

He said "well, I want you to go home, read up on Parkinson's Disease, then come back to see me and bring your husband with you." I said "O.K.". I thought "Sh%T!" My toes actually curled up and turned cold, like the Wicked Witch of the East.

I did what he said, and by the time my husband and I came to see him the next week, I was mentally prepared to accept his diagnosis. How in the world did my doctor know exactly the right approach to take with me? I don't know, but I'm profoundly grateful. It made it easier for me to accept it and get on with life.

I was kind of wondering how other people found out. I would love to hear your stories, and maybe post them (with your permission of course).

Let me know!

Thursday, February 12, 2009

Ready for the Walk

Well, donations are starting to roll in for the Parkinson's Unity Walk in April. I posted my flyers last week at work, and my wonderful co-workers are already responding. What an amazing group of people they are! I also got a contribution from my stepmom, bless her heart; she and my dad are having some financial problems right now, so I know it's painful to part with cash. They know what this means to me, though.
What does this mean to me?, you ask. It's hard to describe, but participating in this Walk, and doing the other things I do to try to help find a cure for this stupid disease are more important to me than I ever dreamed possible. Almost every free minute of my day is spent thinking of ways to contribute to the cause, and some minutes that aren't free (oops!).
I wish the walk was tomorrow; I'm ready to go now!

Thursday, February 5, 2009

If I Only Had a Brain!

I did it! I donated my brain. Well, I put in the paperwork to allow my brain to be donated to the Parkinson’s Institute after my death. We dropped by the post office before work, and as I got out of the car to go mail my paperwork, I smiled and said to my husband “Well, here goes my brain!” It was weird, but as the envelopes with my forms in them left my fingers, I felt just a touch of separation anxiety, as if my brain really was in one of those envelopes. When I closed the mail slot, though, there was this warm glow filling up my soul; a feeling of joy, almost euphoria. It’s the same way I felt when I crossed the finish line with Team Parkinson at the SF Marathon.

Now I feel like I’m carrying precious cargo in my head. Who knows? Maybe my brain holds the secret to some terrible disease. I won’t say Parkinson’s, because by the time I die of old age, I expect Parkinson’s to be cured! On the other hand, if I died in a car crash tomorrow, I know that I will still be able to contribute somehow.

“And perhaps I’d deserve ya,
and be even worthy erve ya
if I only had a brain”

Saturday, January 31, 2009

Positive Things; what are some of the GOOD things that PD has brought me?

As promised, I thought I'd list some of the things I've gained as a result of having Parkinson's:

A sense of purpose. I feel that I have a cause now, maybe a small inkling of what God has in mind for me. I have something to work towards, and that keeps me going. I've never really had this kind of direction before. Doing positive things to help myself and others and working towards a goal makes life more meaningful.

An appreciation for little things in life. More and more, I find myself noticing and appreciating little things like the wind in the trees, the way the squirrels chase each other and tease the dog, flowers growing where they're not supposed to (instead of in the planter box!), the way it feels to walk as fast as I can just for the joy of walking.

Prioritization. I'm beginning to understand, for the first time in my life, that my priorities need to be rearranged. For years, I put work first. I paid lip service to putting family first or putting my needs first, but when it came down to it, it was work all the way. I let my job define me as a person; if I failed at work, I failed at life. Now that I've had to face the realization that I can't do my job as well as I used to, I'm starting to let go a little. This is a slow process, and I'm still working on it, but as they say, the first step is admitting you have a problem!

Less self consciousness. When I was first diagnosed, I worried a lot about people staring at me or judging me based on my symptoms. Now, I've found that most people don't notice anything; most of the time people aren't looking at me at all. I've also come around to feeling like I don't care what they think anyway; if they want to stare, I'll stare back and smile! If they are bold enough to ask what's wrong (as has happened on a couple of occasions) I treat it as an educational opportunity. Spreading the word about PD is a good thing, right? It's kind of freeing; I just don't care what I look like as much as I used to. If my makeup isn't perfect (or isn't on at all), or I haven't bothered to do anything with my hair except brush it, I think "Hey! I have Parkinson's and I'm menopausal; what do they want?"

Friends. I've never had so many friends in my life; friends that share personal thoughts and feelings, friends that call and ask how I'm doing, friends that keep track of one another and get concerned if one of the circle hasn't called or been on line in a while. It's wonderful to see all these beautiful people drawn together to face adversity together. I'm so happy to be a part of it!

There are other things, too but I can't think right now. Need coffee.......

Saturday, January 10, 2009

More on "My Father, My Brother and Me"

Today, at my support group meeting, we saw the first 20 minutes of the documentary "My Father, My Brother and Me". A very nice young lady from our local PBS station, KQED, brought the film and introduced it to us. Since the film is not due to air until February 3rd, we were only allowed to see the first 20 minutes, but those 20 minutes were powerful. I actually found that I had tears rolling down my cheeks a couple of times. I think this film will help people understand what Parkinson's is really like and what it's really about; what it means for patients and their loved ones. This is what we need, my friends.... exposure, education, insight.

Thursday, January 8, 2009

New PD Documentary Coming February 3rd!!!

As you can see, I have posted the trailer for the movie "My Father, My Brother and Me" which is a documentary due to air on PBS on February 3rd. It is the story of Dave Iverson, who discovered that he had Parkinson's after seeing both his father and his brother suffer with it. I'm very excited about this movie; I think it's going to be a big awareness booster for the PD community. I am very fortunate in that my support group has received permission to air the movie at our regular meeting on Saturday. Here is a link to Mr. Iverson's site:

http://www.pbs.org/wgbh/pages/frontline/parkinsons/

Take a look! This should be good.

Tuesday, January 6, 2009

What Does Parkinson's Feel Like?

When I was newly diagnosed, I sure wished that someone could have told me what PD really feels like. I now know that it is different for everyone, and furthermore that a lot of the symptoms are really, really hard to describe. However, I still would have liked to have read or heard more first hand accounts of what it was like. So, I thought I would describe some of my symptoms, in case there's someone out there wondering about it.

Now, I'm in the "honeymoon" phase of treatment. The medications are working GREAT for me, so none of my symptoms are particularly severe. Still, there are symptoms that come and go in different cycles; some within the course of a day, some over days, weeks or months. They are all exacerbated by stress, extremes of heat or cold, and illness of any kind. Here's a partial list:

1.) Fatigue. This is the single most debilitating symptom for me. I'm not talking about sleepiness, here. I'm talking about the feeling that you've spent the day digging ditches. I'm talking about being so tired after doing the dishes that you have to go take a nap. It's not always that bad, thank goodness, but I am always tired. Then there is that feeling of "heaviness" in my arms and legs. Sometimes it feels like gravity has suddenly been turned up, and that when I walk, I'm walking in sand.

2.) Stiffness/Rigidity. This is certainly the most annoying symptom I have. It sometimes feels like I'm slowly being encased in cement or at least heavy plastic. When I'm in bed at night and my meds have worn off, it's particularly bad.

3.) Slowness. This is a very peculiar thing; I go to unscrew the cap of a bottle or deal some cards or something and my fingers simply will not move fast enough. I stare at them and will them to work faster, but nothing happens. Sometimes I actually yell at the offending body part: "hey, you stupid hand, GET MOVING!" It doesn't listen. One of the funniest things that happened to me because of PD is when I tried to teach my grand-niece to juggle. I've always been a pretty good juggler, and it's like riding a bicycle; you never forget how. So, I started juggling and ended up with a beanbag right between the eyes. Tried it again and hit myself in the nose. Oh well; if juggling is the one thing I simply can't do, it could be worse!

4.) Anxiety. I am often on the verge of panic in crowds nowadays. I just can't stand it. I have to repeat over and over to myself that it's o.k.; remember to breathe; no one is going to hurt you.

5.) Restlessness. I can't sit still very long. I get this weird feeling in my legs and sometimes in the rest of my body and I just HAVE to move. That's why I now get up and take a walk a couple of times a day while I'm at work.

6.) Insomnia. I actually am kind of enjoying this one, surprisingly. All my life, I have NOT been a morning person. It used to take me hours to get going, and on the weekends I slept until 11:00 or 12:00. Now, I wake up fully and immediately sometime between 3:00 and 5:00 a.m. every day. I get a lot more time to myself, and I love the quiet mornings. This has limits, of course; I take Ambien when I've had too little sleep for too many nights.

7.) Cognitive problems. I know that doctors say that this doesn't happen until the late stages of the disease, but I swear my thought processes have suffered. I have much less initiative and confidence at work. My memory is AWFUL. I get confused, particularly about where I am sometimes; I turn a corner in a building I've worked in for 25 years, and I suddenly find myself thinking "Where am I?". Sometimes I look at my husband and think "Who is this handsome guy and why is he in my home?". It passes quickly, but it's scary. I have trouble concentrating; I used to love to read, now it's a chore. I also have trouble with parallel processing; I can't do more than one thing at a time. All of this might just be normal aging stuff, though, or perhaps menopause stuff.

8.) Tremor. I almost forgot about this one, because it's the symptom that bothers me least, even though it was the straw that broke the camel's back and brought me to the neurologist in the first place. Mine started in the fingers of my left hand, and it was NOT the classic "pill rolling" tremor at first. It is now, though.

There are many more, but these are the major ones for me. As I said, though, my symptoms are mild. As time goes by, I will post updates and add to the list, I suppose.

There are also a lot of things that I've GAINED because of PD though! I will address those in another post. I need to go make dinner now!
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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.