On the town - Terri's first and probably only Society Column

The night I received the invitation to dance at the Dazzle and Delight Gala to benefit the Parkinson's Association of the Rockies, I went to sleep with I Could Have Danced All Night going through my head. What fun! I felt like Cinderella, Eliza Dolittle, and Angelina Ballerina, only older. Not in my wildest dreams would I have ever imagined going to this fancy gala in evening dress and actually dancing on stage in front of people. Not ... in... my ... wildest ... dreams...

The next morning, I awoke with Beatle's songs going through my head. It was a medly of Sure to Fall, Help, and Hold me tight. What had I gotten myself into?

For better or worse, I was committed, and couldn't have refused anyway. How could I say no to having Brandon (Private) Freeman as a dance partner? Private dances with Ballet Nouveau and is one of our Parkinson's dance teachers. It really wouldn't matter what I did on stage, everyone would be watching Private. We practiced a few times and by the night of the Gala, we were ready.

It was worth it! It was worth getting dressed in fancy clothes, worth talking my husband into wearing a nice suit, dress pants, and tie instead of his usual evening wear of sweat pants and t-shirt, and worth wrestling for 20 minutes trying to put on nylons with control top panties. This last one almost did me in. I slid off the bed several times and looked like a contortionist before accomplishing the seemingly impossible task. I blame my Parkinson's.

Our daughter took photos of us and fussed with my hair a little. Then, looking us over, she finally gave her approval, and we left for the Ritz Carlton Hotel in downtown Denver.

It was beyond elegant. We walked in the front doors, greeted by no less than 4 doormen and another man who made sure we knew where we were going. When we arrived on our floor, we checked in and perused the silent auction items while being offered hors d'oeuvres and wine. There were many lovely auction donations; the beautiful water color painting by Carolyn Zeiger was my favorite.

I stopped in the restroom before going into the dining room, you know, to powder my nose and stuff? Wow. Wow. The bathroom was bigger than my last hotel room. They had real cloth towels to dry your hands; tiny ones rolled up and stacked in a basket. There was marble everywhere and even a place to sit by a mirror and... powder your nose. I took a photo.

Cheryl Seifert, director of the Parkinson's Association of the Rockies gave a lovely talk about their work and told us of all the wonderful donors who had contributed to the evening.  We are lucky here in the Denver area.  If you're going to have Parkinson's, Denver is a great place to be.  There is so much support and such a great community. Thank you Cheryl!

The highlight of the evening was when Sue Feingold's son spoke about her experience with Parkinson's disease and how much the Parkinson's Association of the Rockies had helped her and their family. I remember Sue so well from our dance classes. She had a lot of trouble with walking and balance, and very little facial expression. This did not stop her from taking part fully in the class with a delightful sense of humor. The twinkle in her eyes more than made up for any other lack of expression. Sue passed away in May and we will miss her sparkle!

Live auctions are always fun, especially with an auctioneer who is really enjoying himself.  Add to that, a cow walking onstage and a delightful game of heads or tails, and it made for an interesting evening.

The dinner was fabulous. The dance went well, too. At least I can say, I didn't fall and I think I sort of looked like I knew what I was doing. It was about two minutes long and we were accompanied by the wonderful Parkinson's choir, The Tremble Clefs. After the dance, I learned that Private was just as nervous as I was. His boss had accompanied him and so, we had Dawn Faye, co-director of Ballet Nouveau, watching us dance. Dawn is a beautiful woman who reminds me of Audrey Hepburn. She complimented me on my dancing, mentioning my posture, in particular. I blame.. I mean, credit Paul and Carolyn Zeiger, my yoga teachers, for that.

I actually had it easy. If I missed a step or two, no one would have even blinked. I can always blame my Parkinson's.

15 Best Parkinson's Blogs of 2012

Healthline.com has come out with a list of their pick of the top 15 blogs for Parkinson's disease, 2012. I would highly recommend you take the time to look through these sites. They are all, without exception, great blogs.

Best Parkinson's Blogs

I found a new favorite amongst them:  

Sitting Comfortably?  This is the blog of Andy Daly: artist, teacher, photographer, swimmer, cyclist, and Tae Kwon Do black belt.  He has Parkinson's, too.  

There are other familiar sites from Kate Kelsall (Shake, Rattle, and Roll), Bibmomma, and Dirtybutter, and of course, Bob Kuhn's "Positively Parkinson's".  

In case you didn't know, Bob has been traveling around the world to collect stories about Parkinson's disease.  I was also reminded of Peter Dunlap-Shohl's blog, "Off and On", from Alaska.  Peter is a cartoonist.

There's more, of course.  Studio Foxhoven even got in there!  After you look at the list and peruse the websites, go back and look through Healthline's website.  I've used this site as a reference any number of times.  

The Sports Car of my Dreams

When I was in elementary school, I loved to look through the Sears Catalogue and plan my dream house.  After days of looking, I would carefully fill out the order forms with all the furniture, appliances, and home decor for my future abode.  By the time I was in high school, I traded in the Sears catalogue for the Auto Trader magazine.  This was even more exciting than furniture.

Having a car meant freedom.  Having freedom meant getting away whenever I wanted, going wherever I wanted to go, and staying away as long as I wanted.  At least, that's what I thought when I was in high school.  We were always a one car family and getting a chance to drive the car was a rare treat.  My dad was very strict about our driving, too.  We were not to drive on the highway or go to certain neighborhoods after dark. This meant I drove on the highway and, well, I just didn't tell him where I was going.  I knew I would soon have my own car and then I wouldn't have to answer to anyone.

Paging through the Auto Trader, I would find my dream car - a 1965 Austin Healey. I would find every Austin Healey for sale in our area and mark the pages.  Then, I would carefully calculate the time I would need to raise the cash from my 75 cent/hour babysitting money.  I concluded I would need to babysit for approximately 8000 hours.

I eventually gave up on the Austin Healey and set my sights on a Triumph.  Though my financial situation hadn't changed much, I had added a family to my babysitting roster who gave tips.  On a good night, I might make $5 or $6.  If I kept up my work, I might just be able to afford the car by the time I was .... 65.

I ended up with an orange 1974 Pinto with an 8 track tape player.  Not that I minded too much. At least I had a car.

Now for my confession.  I've been looking at sporty vehicles again and I have my eye on one.  It's sleek and beautiful.  It handles well and can turn on a dime.  It can hold up to 320 lbs and go as fast as 6 mph!  It's also green.  An electric vehicle, it can go about 10 miles to the charge with a lithium battery.  What is most exciting, it only weighs 36 lbs, including the battery!  It folds up and can be put in a bag and stored in the overhead compartment on an airplane.  

It's a Travel Scoot, invented by Howard Huber, an engineer and amateur airplane builder who had injured his legs in a hang gliding accident years ago.  He wanted a vehicle that was light enough to take on a small airplane. It didn't exist at the time, so he invented one.  It's the Austin Healey of the mobility scooters, a Triumph in engineering!  

http://www.travelscoot.com/

I'm only feeling moderatly guilty for betraying my Pride Revo. Todd, the Pride mechanic, came by yesterday to look over the Revo.  He was impressed.  I've had it for 3 years and haven't replaced the batteries... yet.  It seems the batteries may have a month or so of life left in them.  Worse than that, the drive train and motor needs to be replaced. We were lucky.  Though the warranty expired a month ago, Pride offered to give us the parts at half price.  

I've come up in the world now and I'm not dependent on my 75 cent/hr babysitting jobs. I make gnomes instead.  I have my calculations.  For 60 gnomes, I can get the Revo fixed and the batteries replaced.  For 220 gnomes, I could get the Austin.. I mean the Travel Scoot.  

For now, I'm getting the Revo fixed.  I'll need it next month when I start school.  Oh yeah, I'm starting school in the fall and this time, I won't be teaching.  I'll be taking two classes: Spanish and Introduction to Political Science.  As it's an election year, I'm sure the Political Science class will be very interesting.  

I'll take the bus to school and use the Revo to get around campus. I did a dry run yesterday and it was great, only my battery started to wimp out on the hill coming home from the bus.  That's when I pulled out the scooter catalogue.  Time to dream again!

Worn Out - Coping with Fatigue

I am not relaxed. I'm beat. I'm exhausted. I'm flat worn out. I'm bushed, buggered, and running on fumes. My bones are weary and my muscles have gone... whatever the opposite of wibbly-wobbly is. The least unexpected noise propels me across the room. It's happened several times tonight. My son sneezed and, wham, I flew into the kitchen counter. My husband closed the cabinet door and, bam, I was suddenly holding myself up by my elbows on the dishwasher. In my case, saying I am relaxed would not be thinking positively, it would be denial.

It's not bad. I got out of cooking dinner and washing dishes.

Before I started having symptoms of Parkinson's, I remember reading about neuromuscular disorders in a medical book. There, right in the book, it talked about fatigue being a major challenge with any of these disorders. Ah, to be so naïve again! I assumed it meant the kind of cozy tired feeling you get after a busy day and not the heavy, aching feeling like when you have the flu and step out into traffic just as a steam roller is coming across your path. My other friends with Parkinson's and MS understand this well. A few others do, too, such as new parents, and teachers after the first week of school.

My docs gave me a drug (provigil) so I wouldn't get that feeling. As often happens, the drug didn't like me and I went off of it, figuring a couple cups of black tea in the morning would work almost as well. In the afternoon, I'd just take naps. Most of the time, this works just fine. Every now and then, when I least expect it, it doesn't. Oddly enough, it's when I am feeling exceptionally positive, that's when I will crash. When I'm feeling positive, I tend to do a lot. Unfortunately, it's hard to tell when doing is going to cross the line into overdoing.

I'm about to explore what might be a more wholistic way of dealing with this fatigue. The University of Colorado Health Sciences Center is conducting an acupuncture study for people with Parkinson's disease. The study is focused mainly on relieving fatigue. I just emailed the study coordinator for more information. I don't know yet whether I will qualify. The only part I'm concerned about is it's a blind study. Some participants will get placebo acupuncture. 

If I am accepted, and can come to terms with the phrase, placebo acupuncture, I'll report on what happens. In the meantime, I've had a chance to sit for awhile, rest, and have a little Bailey's.

I'm starting to feel … relaxed!

Update on Tuesday, August 7, 2012 at 9:26PM by Terri Reinhart

Honesty is the best policy, especially if what I say is in print for all to read and say, "Right, Terri. You didn't really do this, did you."  I'll admit it.  I did not follow through with the accupuncture study.  Somehow, I just couldn't get past the possibility of "placebo accupuncture".  On to plan B....

Neither Fish, nor Fowl, nor Good Red Herring - the trials and triumphs of having a unique medical diagnosis

A civilized society is one which tolerates eccentricity to the point of doubtful sanity.
~ Robert Frost 

A funny thing happened when we got back from Chicago. The very next day, fresh from two weeks of relaxing at Ronnie's house*, I had an appointment with my study doc, a neurologist specializing in movement disorders. I'm taking part in one of her clinical studies.

This was a major visit and included a thorough neurological evaluation. I tapped my fingers and toes, made circles in the air, walked up and down the hallway, and answered questions in the cognitive part of the test. I am never thrilled when the cognitve section comes up. They have a habit of asking ridiculous questions. I mean, come on, are we really supposed to be able to count backwards from 100, subtracting 7's? When, in life, will I need this skill? Is it important to be able to look at a list of 10 totally random, unconnected words, and then recite them back without looking at the list?

I've never yet failed the test. You're probably expecting me to say, “until now”, but that's not the case. This time, not only did I not fail the test, I ACED it! There could be several explanations for this. Maybe this was an easier version of the test. Maybe I really am intelligent. Maybe I was just calmer than usual.

It's a funny thing with a lot of these neuro muscular disorders. Stress makes everything go haywire and then the meds don't work and I move like one of the monsters in a B horror movie. This effect is talked about a lot. We all know what stress does to us. What isn't talked about is the opposite. What happens if you have an extended time that is completely calm and non-stressful?

I realize this rarely happens to anyone. Maybe this is why no one mentions it. It happened to me. Ronnie's house, despite being there with our daughter, who was recovering from surgery, was surprisingly non-stressful. There were all those nooks and crannies where we could sit and read or watch a movie; and of course, there were desserts everywhere we looked. I couldn't live this way all the time. I'd be terribly bored and terribly overweight. For a couple of weeks, however, it was nice.

So I rested, relaxed, and came back to ace my neuro exam. This prompted my doctor to question my diagnosis. I'm serious. After being diagnosed for over 5 years, suddenly my doctor says maybe I don't have Parkinson's. Now, don't get me wrong. I wasn't cured suddenly. I was just looking better and performing better than I should; especially in the cognitive region. The old grey matter was functioning admirably. What was my doctor thinking? We talked for awhile and I came home and immediately got onto the internet to research something called “Dopamine Responsive Dystonia”.

The other day, I went back to Kaiser and I discussed my research with my regular neurologist, Dr. Lindsee Hudson.  She is great. We often spend at least half the visit laughing at one thing or another. This time was no exception.

“From what I read,” I informed her, “it seems I either have Early Onset Parkinson's Disease with Dystonia that responds well to Dopamine or Late Onset Dopamine Responsive Dystonia with Parkinsonisms.”

“You got that right,” she replied. She went on to say that they are treated the same way. If, and this is a big if, I wanted to, and had an extra $7,000 to get a DATscan done, we might be able to determine exactly what this is.

Okay, I don't have the money to spend on a DATscan, and I'm not sure I would do it, even if I could. Why? Dr. Hudson understood immediately. She had thought of the same reasons before I even brought them up.

1. There is a large community out there for people with Parkinson's disease (PD) with lots of classes and support. There isn't anything like that for people with Dopamine Responsive Dystonia (DRD).

2. In the PD community, I am considered young. In the DRD community, I'm considered ancient. DRD usually hits in childhood, late teens are considered to be old.

3. I definitely have parkinsonisms. One website maintained that late onset DRD was really a sign of early onset PD. I'm not sure there's enough understood about either disorder to know what is what.

4. Even within the community of people with Dystonia, DRD is rare. According to my doctor, I'd be a community of one.

I'll stick with the diagnosis of Parkinson's, but there's something cool about this. I don't fit easily into any category. Not really. I don't follow the typical pattern of Parkinson's and I'm too old to fit nicely into the DRD group.

I'm unique. My husband didn't bat an eye. He said he'd known this for years. My son just said, “Weird”. I thought he meant the whole situation. Seems he meant me.

I don't know what this means for my future, not really. My doctor is optomistic. She says I must have some sort of unique variation. Maybe something in between the two disorders, who knows? She says, whatever it is, it seems to be a good variation. I'm doing better than I should be doing at this point and I don't seem to be effected cognitively at all. I thanked her for not doing a cognitive test that day. Having rushed to get to the appointment and hitting every single red light on the way, I wasn't exactly in my non-stress mode.

In fact, I was feeling a little more like one of those monsters from the old horror movies.

Uniquely weird.

*Ronald McDonald House... We're on first name basis now.