Parkinson's mysteriously affects other people and things...

I'm sitting here at 4:15 in the morning, having forgotten to set my clocks back again.  Of course, old man Parkinson doesn't care about Daylight Savings Time anyway; I'll be getting up at 3:30 for a while yet.  Anyway, you get to thinking about strange things at this hour;  I was thinking about how Parkinson's mysteriously affects the rest of the world.

Firstly, it makes other people rather deaf.  I have to repeat everything.  Perhaps Parkinson's generated a field of some kind which has an adverse affect on others' tympanic nerves.

Secondly, it causes others to move more rapidly.  Sometimes they seem to be so fast that I can't keep up. I hypothesize that their neural pathways are affected by my Parkinson's in some way.

It even affects the laws of physics!  The force of gravity is sometimes much higher in my immediate vicinity.  In fact, Parkinson's apparently causes sudden, unexpected "gusts" of gravity.

I will continue to study this phenomenon and post with my results.

In support of support groups

Went to my support group meeting last weekend, and I felt again like a swimmer in trouble finally getting her head above water to catch a gasp of air.  Now I can keep swimming for a while.

I know that a lot of patients are nervous about support groups; the idea of seeing people in later stages of the disease is scary.  I had misgivings too, but from the first moment we walked into the room, I was relieved to discover that meeting and talking with other patients is inspirational, not frightening or depressing.  I was a bit taken aback by the average age of the group, which was listed as a "Young Parkinson's" group; a lot of these folks were over 80, most were over 60, and I think that at 47, I was the youngest in the room.  One lady laughed seeing my expression and explained, with a twinkle in her eye, that they were all young when the group was formed!  The leader of the group is younger, and since then, more younger people have joined, but I have found that age doesn't really matter.  We're all in the same boat.

My husband and I both look forward to the meetings.  Not only are we very fond of all the people there, but it's also the only time we can share our experiences and feelings with people who know exactly what we're talking about.  I work very hard to not burden others with my fears, tears anger and frustration.  It's such a relief to be with people who understand these things and are not distressed by them and don't judge me by them.  It's also very therapeutic to provide some help and hopefully inspiration to others.

I find the people in my group so inspirational.  I can't name names, but they know who they are.  They (patients and care givers alike) are all struggling with this disease, and they all show incredible resilience and grace under fire.  Some of them have trouble walking, talking, or doing everyday activities, but they still laugh and tell stories and sing, travel and even dance in some cases.  They listen, they share, they help and most of all, they care.

I know support groups are not for everyone, but I would certainly advise every patient to try it, and their care givers as well.  It might surprise you, as it did me.

I am invincible!

Diagnosis day is here again.  It was five years ago today when I heard the words "Parkinson's disease" from my neurologist.  I was worried then about where I would be in five years, how much I would have to give up, what I wouldn't be able to do.  Well, it turns out that I have had to give up exactly NOTHING.  I can still do whatever I want to do, I just do it a little slower because it's harder to do.  Everything I do is a little victory, every day is a triumph, so how can I complain?

I AM INVINCIBLE !!!

Unexpected symptoms of PD (to me, anyway)

I knew about tremors, rigidity and bradykinesia.  I knew about dyskinesia, fatigue and "wearing off".  For some reason, though, I was surprised when some symptoms hit me.  Here's a short list of the Parkinson's symptoms that surprised me:

Hallucinations:  a medication side effect which I knew about, but startling nonetheless.  It's disconcerting to see a person (a stranger, no less) standing in the doorway as clear as can be, then to see her disappear literally in the blink of an eye. I've had my meds adjusted since then, and she hasn't been back; nor has the truck I thought I saw in our driveway.

And speaking of blinking eyes:  DRY EYES; big problem.  PD patients apparently tend not to blink as often as they should.  For me, this led to eye pain, swelling, ulcers on the eye, and photophobia.  Remember to use those artificial tears if you have this problem!

Pain: caused, in my case, by dyskinesia in the muscles of my neck, back, arms, feet and sometimes hands.  I had no idea how painful this can be.  It's hard to treat, too, but there are treatments available.  I'm just grateful that they seem to work for me.

Inability to concentrate:  I used to love to read; it was one of my favorite activities.  My family always made fun of me because I even read in the shower!  I haven't read anything lengthier than a crochet pattern in at least 2 years.  It's extremely difficult to keep track of which words I've read and which I haven't; as a result, I find myself reading the same sentence over and over and over...  Driving is becoming difficult too; hard to process all the things I need to.

Stuttering:  Very annoying!  It inevitably happens when I'm speaking to a group, especially if I'm giving a presentation

THE GOOD NEWS:  All of these things are treatable, though some require a trade off.  You have to target the symptoms are the most annoying and/or disruptive.  No problem!  I can do that...

I forgot one: being always either too hot or too cold.  It seems that I'm either sweating or shivering all the time.  It feels a lot like hot flashes, but it's related to being "off".  Sometimes it's kind of convenient, I have to admit.  If it's too cold to get out of bed in the morning, I just wait for the "hot" cycle.

Where have I been?

I haven't posted in awhile.  Where have I been?  Well, we went on vacation, we had house guests, we've both been working extra hard for extra hours... etc, etc.   It's been fun, but stressful too.

I feel like I'm just starting to appreciate (if that's the right word) just how hard this fight is going to be.  For the first time, I couldn't do everything I wanted to on my vacation, at least not without some reservations.  I couldn't stay up with everyone and drink and play cards or dominoes all night long.  I didn't have as much enthusiasm about decorating the table or arranging games or making fancy desserts or starting a singalong as I usually do; I was just too exhausted.  My neurologist called my cell phone (on a Sunday, can you believe it?) and helped me work out a medication schedule that was a little better, and I had a lot of fun anyway.  It would take an awful lot to ruin my good time when I'm with my family, that's for sure!

I just have to learn new coping skills, and I'd better hurry up, because Bob and I are going to Disneyland for our 26th wedding anniversary in September!

A Bit of a Rough Patch

So far, not so good.  I have been having some pretty rough "off" times, although the side effects from the Requip have abated a bit.  I think I need to give it another couple of weeks to let the system settle out before deciding whether to declare victory or give it up, though.  It's a pretty stressful time for me, and as we all know, stress can magnify symptoms enormously.

The good news is that I'll be on vacation soon; next Saturday we're off to Lake Tahoe for a week.  My brother Drew and his wife Debra will be there, as well as a large contingent of my husband's family.  Fun!

In the meanwhile, though, I have an impossible deadline looming over me.  Some people say they work better under pressure.  I wish I could say that...

Less medication... for once.

I went to my neurologist, and walked out of his office with a prescription for less of one of my medications!  I've been having some side effects that I don't like (slight hallucinations, sudden sleepiness, edema in my legs and feet) and the doctor thinks it's from the Requip.  So, he cut me back from 12 mg a day to 10mg; that is, 5 pills instead of 6.  Kind of nice to be decreasing medicine rather than increasing for once.  That means that instead of 17 pills a day, I'll be taking 16.

So far, I've had no reaction to the change either way, really (except for some symptom fluctuation, but I was told to expect that). One of the things I've learned about Parkinson's medications, though, is that I have to be very patient.  It seems to take a long time for the system to stabilize after I change something.

So, now I take these every day:
6 Stalevo
5 Requip XL
2 Amantadine
2 Zelapar (selegiline)
1 carbidopa/levadopa

and that's not counting the Ambien I take for insomnia, the Baclofen I occasionally take for muscle rigidity, the Sumatripan I take for migraines and the B12 and D vitamins I take for vitamin deficiencies.  Oh yes, and then there's the study drug I'm taking for a clinical trial.  It's amazing that I don't rattle when I walk!  Well, I'm just grateful that it all works as well as it does.
 "Better Living Through Chemistry",  right?

Parkinson's is Hard Work!

The Parkinson's Unity Walk has come and gone and the local Sunnyvale Parkinson's Walk has done the same.  All the excitement about winning the Parkinson's Disease Foundation T shirt contest has dissipated.  So what's next?  Well, I'm thinking about submitting some artwork to the Parkinson's Disease Foundation; they're looking for artwork for their calendar and online gallery.  Here's a link:
http://www.pdf.org/en/show_work

 That's all for now, though.  I'm so tired; fatigue is my constant companion.  Ever notice that Parkinson's causes fluxes in the gravitational field?  I swear, sometimes I feel like I'm warping the space/time continuum.  It's so hard to do everything, from brushing my teeth to lifting and carrying.  By the end of the day, I feel like I've been digging ditches.  Amazingly enough, though, I've found that a little extra exercise really helps in the long run.  Seems counter intuitive, doesn't it?

Parkinson's is hard work, but you just have to work through it, I guess!

Scars and Parkinson's

I have a scar on my right knee.  I got it when I was 6 or 7 years old; my brother and I were flying kites in an empty lot and of course, I was focused completely on the kite.  I didn't notice the rock until I tripped over it and landed on my knee on a piece of broken glass.  There were tears, some stinging disinfectant  and a bandaid, but when I look at that scar, that's not what I remember.  I remember how it was to be a child, running effortlessly into the wind, my soul flying with my kite, the grass so green and the sky so blue that it looked like a painting in one of my books.  I remember the magic in the summer air, and the future stretching out to an infinite horizon.  The little scar on my knee makes it all real again, and I'm glad that I have it to remind me what it was like to be so young and free.

Maybe someday Parkinson's will be that way.  Maybe someday it will be gone, and all that's left will be scars in my memory.  The scars will remind me not of the bad things, but of the good people I have met, the challenges I have faced and the victories I have won.  Maybe I need to look around and find a kite to fly...

Parkinson's Disease Awareness month newspaper article

Well, here it is; the article that the very kind Stacy Trevenon wrote about me for the Half Moon Bay Review.  She did a wonderful job of making sense out of my random jabbering!  Thank you, Stacy, for helping me spread the word.  And thanks to Lars for patiently and skillfully getting a decent picture to go with the article.

http://www.hmbreview.com/community/article_4fa32d22-6b75-11e0-9fbb-001cc4c03286.html

Stepping out of my comfort zone; newspaper interview

Well, I've gone and done it now.  I won the Parkinson's Disease Foundation t-shirt contest (tied for the win, anyway) and now our local paper, the Half Moon Bay Review is doing an article about it for Parkinson's Disease Awareness month.  I gave a phone interview yesterday,  and today they're taking my picture.  I don't have the PDF t-shirt in hand yet, so I'm going to wear the one I designed for the Patients Like Me Parkinson's Unity Walk team, and bring a picture of the PDF one.

This is way out of my comfort zone; I'm terrified.  I don't know why.  This is what I've been trying to do; raise awareness, help put a face on the disease for those who haven't been touched by it.  It's very scary, though, for some reason.  I'm just going to square my shoulders and do it, though.  So there, Mr. Parkinson!

National Parkinson's Disease Awareness Month

April is Parkinson's Disease Awareness Month, and it makes me think about the significance of  "awareness".  I'm embarrassed to say that before I was diagnosed with PD, I didn't think "awareness" in and of itself was important at all.  I thought wearing awareness ribbons and pins and bracelets and whatnot was just a way of paying lip service to helping with a cause, without having to do much.  Now I know that awareness is the beginning, the ground swell that can build up and carry us to victory, to a cure.  Everything starts with awareness; it's easy to say "no" if you know nothing about a disease or a cause.  If, on the other hand, you see someone that you know wearing a ribbon or a pin, you might ask them what it means.  When they tell you, suddenly there is a face that goes with the cause, and you might say "yes" the next time you're asked to donate or help.

That being the case, I'm very proud to be able to say that my design was one of two chosen as the artwork for the Parkinson's Disease Foundation's t shirt for Parkinson's Awareness Month.  Here's a link to the PDF press release (which also provides a link to buy one of the shirts):
http://www.pdf.org/en/pd_comm_news/release/pr_1301931599

I was amazed and so excited when I found out that my design had been chosen!  It's wonderful to be given an opportunity to help with the fight against PD by doing something that I love to do.  I feel that way about the Parkinson's Quilt project too.  I really think that these little things , when added up together, do make a difference.  Making a quilt square, designing a t shirt, telling a story, wearing a ribbon, telling others about Parkinson's and what it's like; all these things raise awareness, and awareness is vital.

In other news:  My husband Bob and I are participating in our local Parkinson's Walk in May (it's a "little brother" of the NYC walk, and the proceeds from it go to the Parkinson's Unity Walk organization).  Here's a link to the Unity Walk page:
http://www.unitywalk.org/
Please consider joining the Walk or making a donation.  Together, we can do this.

National Parkinson's Disease Awareness Month

April is Parkinson's Disease Awareness Mo

Traveling with Parkinson's, Part 2

Back home again; it was a bad reason to get together, but at least we WERE together, and we made the most of it.  My mom is doing much better, but she's very tired of being tired, and sore at being sore.  My dad is pretty exhausted too.

I took a redeye flight home; left my parents' house at 2:00 a.m. on Saturday, took the 5 a.m. flight to North Carolina, then had to practically RUN to get to my connecting flight on the FAR END of the airport.  I made it just in time, but I was extremely shaky and stiff when I got to the plane.

More traveling tips/observations:

1.) Give yourself plenty of time. Don't book a connecting flight for less than an hour after arriving at the airport.  Better yet, fly nonstop.

2.) If you bring a cane with you, other people will understand that you may need help and will generally cut you some slack.  I didn't have mine, and I got shoved around quite a bit.  Nobody seemed to notice that I was shaky and a little less stable than some.

3.) Bring a small flashlight with you, if you're flying at night.  They sometimes make it so dark in the cabin that there is a real danger of tripping over someone's feet in the aisle.

4.) Get up at least a couple of times, even if it's just to stretch in place, but make sure you're holding on to something in case of turbulence.

In general, I'm pretty proud of myself.  I managed to get myself to my folks' house and back, so that nobody had to pick me up on the trip to NY.  I also managed to get around in unfamiliar territory in an unfamiliar car without getting too lost.  I was able to run errands and whatnot without having to get directions.   I even drove my brother and his wife back to Brooklyn after their visit the first weekend, and made it back to my parents' house on my own (o.k., I had a GPS, but it still counts!).

Planes, trains and automobiles: not much fun for parkies!

What a nightmare! Sitting in a cramped, stuffy, vastly uncomfortable chair for 5 hours used to be just annoying, but now it could be considered torture by some definitions... I left San Francisco at 12:30 a.m., tried to sleep on the plane, slouched over in my built-for-a-six-foot-tall-man seat with the headrest shoving my head forward. My last pill was at 6:00, so I wasn't feeling very well. Wave after wave of alternating tremors and muscle rigidity were crashing over my body. Finally, I decided to just take another pill, so I managed a couple of hours of sleep. Then, when we landed in North Carolina, I had to run to catch my connecting flight, or at least I thought I had to. I was practically running through the airport, staggering under the weight of my heavy carry-on and my winter coat. When I got to the gate, I found out that the flight was an hour later than I thought.. Doh!!!

Things I learned the hard way about traveling with just Old Man Parkinson for a traveling companion (so far):

1) Don't carry too much stuff; better to be bored than overloaded.
2) Put your medication in your carry-on in a readily accessible place.
3) If, like me, you need a cane occasionally, this is the occasion !
4) Don't forget that you're the one who's going to have to lug that suitcase to the rental car place or wherever, so don't overpack

Well the good news is that I got here safe and sound, and my dad and I moved my stepmom back home today; she's doing much better, though she gets tired very quickly, and has a lot of pain to deal with. We all feel very lucky; we could have lost her this time. She must have nine lives, like the proverbial cat! I just hope she continues to improve.

Traveling Alone With Parkinson's

Well, I'm off to New York state tonight; I need to go help my parents out .  To tell the truth, they probably don't really need my help all that much, but when there's an emergency in the family, I just feel better actually seeing people and reassuring myself that they're going to be o.k..  My mom just got out of the hospital, and I want to go and help my dad take care of her and the house and whatnot for a couple of weeks.

Anyway, it's going to be challenging; I leave just after midnight tonight, fly to North Carolina, change planes, then fly to New Jersey.  I get to NJ at around 11:30 in the morning east coast time.  In other words, it's a red-eye, and I'm going to be off my meds most of the time.  I also have to pick up my rental car and drive about an hour to my parents' house.  Thank goodness the snow has melted, and it will be daylight.  The last time I did this, I ended up crossing the George Washington Bridge accidentally and found myself in New York city at 1:00 in the morning.

I have my meds packed in my carry-on, and my cane folded up in my suitcase.  I hope this is going to go o.k.; it all depends on how good a travel companion Old Man Parkinson is. Wish me luck!

A new site to track symptoms and response to medications

Meg Duggan and her sister (who has Parkinson's) have created a website where you can track your on/off times, dyskinesias, and response to medication.  It automatically creates graphs from the data you enter, and it's very easy to use.  Here's what Meg wrote:

"I am the sister of a young onset PwP and have spent 14 years in PD advocacy, programming and fundraising. This fall my sister started having terrible problems with on/of cycling. We sat down and developed an on-line charting procedure for her. We've decided to share it with the PD community. Its FREE and ANONYMOUS."

Here's a link, and I'll also put a link on the right hand side of this page under "Parkinson's Links":

http://www.datadrivenhealth.org/

Much thanks to Meg and her sister!

Unexpected challenges

It's funny how sometimes when I think something will be hard to do, it turns out to be easy, and sometimes when I think it will be a breeze... it isn't.

I spent the whole week (including my Friday off) in a series of technical training courses for my work; useful stuff that I can apply directly to my projects.  I was looking forward to it, actually.  However, it was much harder for me than I had imagined.

First, I had to drive for an hour to an hour and a half (depending on traffic) to get there, and I'm not used to commute driving, so my knuckles were a little white by the time I got there.  Then, from 9:00 in the morning until 6:00 at night, I was sitting in a chair.  We had a couple of 10 min. breaks and about a half an hour of lunch time, but other than that, I was sitting.  It was hard.  I tried to keep still; I couldn't.  I was locked in unseen and silent combat with my body.  It was very distracting, making it difficult for me to absorb the information being presented.  In fact, it was so distracting that I was almost in tears a couple of times.  We had labs to do which required looking in the workbook, then at the screen to enter something, then back at the workbook, over and over and over.  I kept losing my place, so it took me about twice as long as it should have.  Then, when we finally finished for the day, there was that wonderful drive home; in the dark, in the rain, in the traffic.   Every evening I felt like I had spent the day digging ditches.

This kind of thing used to be so easy!  Next time, I guess I'll see if I can arrange to have a nice, relaxing normal work day in between classes...

Help for Parkinson's Documentary "Ride With Larry"

There's only a few days left for the folks at "Ride With Larry" to raise funds (February 1st is the cutoff date). Thankfully, they managed to get the $50K they needed in order to produce the film, but just barely. They need all the help they can get; I really think this project will raise a lot of awareness. From their Facebook page, here's a list of what they plan to do with the money

1. Film Larry in South Dakota this February to document his winter training & begin his video blogs
2. Travel to Europe to film two very important research studies
3. Interview geneticists studying Parkinson's and collecting 10,000 genetic samples of Parkinson's patients
4. Interview Larry's neurosurgeon in San Francisco
5. Travel to states such as Ohio, Georgia, New York, Connecticut and more to film doctors and researchers that are working on curing Parkinson's and improving lives
6. Find the youngest person with Parkinson's
7. Travel to South Dakota this May & June to follow Larry as he rides across his state
8. Many more interviews with experts, spokespersons, and patients in the Parkinson's field

Here's a link to the donation page:

https://www.kickstarter.com/projects/ridewithlarry/ride-with-larry-a-documentary-film?ref=users

New documentary about living with Parkinson's: Ride With Larry

This is inspirational, and I think, important to the Parkinson's community. Larry Smith is a PD patient who is planning to ride his special recumbent tricycle 280 miles this summer to spread information and awareness about Parkinson's. A documentary movie is being made about it, well at least they're TRYING to make a movie. They have 10 days left to raise the rest of the funds they need to make the movie a reality.

Please take a moment to look at the movie trailer (there is a link at the bottom of this page) and/or visit the web site:

PD Meds: Is more better?

I've recently become more aware of the thin line we PD patients walk, balancing ourselves carefully. On the one side, Parkinson's symptoms: you know them, you hate them, they interfere with your life, they make it almost impossible to do the things you love, they keep getting worse. On the other side, medication side effects: dyskinesia, hallucinations, insomnia, constipation, daytime sleepiness, etc., etc. What each patient must do, with their doctor's help, is to find that perfect balance, even though the situation is constantly changing. It's like trying to balance on a rolling log.

I went to see my neurologist recently, to discuss my worsening symptoms, and he suggested just a small change, a little "tweak" to my medication. I added ONE HALF of a 100mg Sinemet tablet in the morning. You wouldn't think it would make that much difference, but it really has! I feel fantastic; no more hideous mornings when the meds just don't kick in or unexpected "wearing off" in the afternoons (well not too often, anyway). It's amazing!

I guess it just goes to show, in my case, anyway, that small changes are probably best, and it may take some patience on my part, but it's worth it! Since the symptoms are constantly changing, the treatments need to be adjusted as well, but you don't want to upset that delicate balance on the rolling log and fall in the river. It might take a while to climb out...

Good news on the diagnosis front

It looks like someone has finally come up with a way to clinically diagnose Parkinson's Disease while the patient is still alive. The FDA has approved "DaTscan", an imaging technique which can show abnormalities in the brain which are indicative of Parkinson's Disease. The article came from the Michael J Fox Foundation web site (see link on the right side of the page).

Why is this important? For one thing, the clinical trials and studies for Parkinson's research will be a lot more fruitful. Right now, no one can be absolutely sure that the patient in question actually has PD and not some other disorder. Now, the data collected will be of a much higher quality. Also, of course, patients will get appropriate treatment sooner.

Aside from all that, I don't know about anyone else, but I think that one of the worst things is not knowing. You know there's something wrong, but not what it is, or how to go about treating it. Now we'll know. I think this is a very good thing.