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My Parkinson's Journey

In which Terri shares a humorous look at her journey with Parkinson's disease and Dystonia:

For me, illness and health are not opposites but exist together. Everyone has something that is challenging to them. Mine just simply has a recognizable name. My life will take a different path because of this but that's okay. Everyone has changes in their lives that create their path.  I'm learning how to enjoy whatever path I'm on.

Filtering by Tag: parkinson's

Twisted

Terri Reinhart

It's Dystonia awareness month and I'm supposed to write something so people will learn about and start to recognize this totally weird and somewhat unpredictable disorder. Considering it is, like Parkinson's, somewhat of a designer disease and affects each person in a unique way, it can be difficult to explain. Some of my twisted friends are posting videos. After all, a picture is worth a thousand words and a video is worth at least a thousand pictures going by very quickly. (Actually, that's film, but it sounds good.)

I'm not real comfortable doing selfie videos, so I'll write and do my best to not use a thousand words. A disclaimer before I start: there may be some of you out there who will say, that symptom isn't dystonia, it's Parkinson's. For this, I will apologize in advance. Sometimes I can't tell which is which. There may also be a few people who will disagree with my weird sense of humor. I won't apologize for this. It's how I stay relatively sane...or at sane enough that my family and other relatives will put up with me.

So, here goes...

Dystonia comes in many forms. These are just a few:

1. The Rebel - the whole body is functioning normally or what generally passes for normal these days. Yup, it's all good. Except for the big toe on one foot which is standing at attention, perpendicular to said foot. The rest of the toes often follow its lead. The opposite of the Rebel would be the Shy Toes, which curl under the foot. Either way, they're not fond of shoes.

2. T-Rex at Dinner - when the elbows decide to attach themselves to the sides of the body, limiting arm movement considerably. Why this happens more often at dinner than at other times of the day is unknown. Eating is definitely a challenge. Good for you if you're dieting. Not so good if you're hungry and your family finishes everything before you get the first bite all the way to your mouth. 

3. Wink, wink - It's really the muscles in my face pulling to my left side. I'm not flirting with you, I promise. This is different from Blink, blink, which is a Parkinson's thing that happens when we don't blink, blink enough.

4. Involuntary Pliés - My legs want to dance, sometimes without telling me. Another way to describe this is to picture yourself on strings, like a marionette. The puppeteer lets the strings go slack suddenly, then pulls them back up again. It's kind of cool. Really freaks out people, especially going through security at the airport. 

5. Twist and Shout - This can be one body part or many at once - often (for me) caused by a startle reflex. Someone drops a spoon in the kitchen, you never know what I'll do. My arms may twist up onto my chest or they may flail outward (often when I'm holding a sharp knife - which is why my family is very careful not to startle me), my feet turn in, I may do a #4, might walk backwards or sideways with great force until I hit a wall or counter. The shout part generally includes a lot of swearing.

6. Bar Fight Gif Mode - You know those annoying gifs that show a very short video over and over and over. That can happen to us sometimes. We become gifs. The neck jerks to one side and down as though someone is slapping you, over and over. The abs contract as though you're being punched in the stomach, over and over. You can't find the pause or stop button and you're stuck in this mode for some time. (My record so far has been about 7 hours) It's not only painful, it's boring.

7. The Works - All, or most of the above, happening at the same time. Generally referred to as a Dystonic Storm. It would be like being fully conscious while having a grand mal seizure. Like being beat up, relentlessly. 

Mostly, it's a weird disorder where our bodies seem to be arguing over which part is making the decisions. It's like having cerebral palsy - part time - and the diagnoses are sometimes confused. With many people, dystonia is extremely painful. We don't have all these symptoms all the time. Sometimes.. occasionally... well, once in awhile, we even look sort of ...NORMAL! 

Just don't hold your breath. We'll come out with something entertaining and twisted again soon, don't worry.

Robin Williams and Parkinson's Disease

Terri Reinhart

Finding out today that Robin Williams had been recently diagnosed with Parkinson's disease makes his death more personal to me - more tragic and infinitely more terrifying.  I think of the disability lawyer who told me he'd eat his revolver if he was ever diagnosed with anything like Parkinson's. I think of a friend who was depressed and suicidal in the first months after his diagnosis.

For a blessedly brief time, I knew what it was like to have severe manic/depressive episodes. I understood the spark of brilliance you feel when you're manic and then, the intense shame when depressed... and afterward wondering what is you and what is simply a combination of chemical reactions in your brain.. and you miss the spark of brilliance and wonder if your friends will still like you without it.

And you totally miss the fact that you ARE brilliant and your friends love you - no matter how you are doing. I understand how this could have been so unbearable - so like a fire that you would do anything to escape it. 

Between our physical challenges and non-motor challenges and the added complications of medicines which influence our brains and, at times, our behavior, and the ups and downs of our dopamine levels, it isn't hard to see how people with Parkinson's can be at higher risk for suicide.

Because of the shock we all feel over Robin Williams' death, many people are sharing phone numbers of suicide hotlines. This is good. For those of us with Parkinson's disease, I'd like to share a couple more resources:

Parkinson's Disease Foundation has a PD Helpline - 1-800-457-6676 or email at info@pdf.org.  

Patients Like Me (www.patientslikeme.com) is an internet support group which is so, so much more. We keep track of our treatments and our symptoms. We are encouraged to share our data and to look at the data that other patients share. 

In Colorado, there is the Parkinson's Association of the Rockies at 303-830-1839 or www.parkinsonrockies.org.

Email me through my website. I will always listen. I am definitely not a substitute for medical help, but I will listen.

Oftentimes, simply (okay, maybe not always simply) getting our medications adjusted and balanced is enough to really make a difference with these issues of depression and anxiety. Always, always check with your neurologist if you or a family member with PD are having any of these challenges.

We also seem to be at higher risk for... creativity, artistic ability, and imagination. In order to stay healthy after the meds are in balance and your PD is stable, don't forget to exercise, dance, read, visit with friends, make new friends, continue learning in whatever way you can, and laugh. 

Laugh. I can't help but think Robin Williams would have eventually come up with some marvelous comic routines around his Parkinson's disease. I'm sure he would have been totally brilliant. Now? We'll just have to do it for him. We can be brilliant, too. 

RobinWilliamsPublicDomainPhoto.jpg




Ikea Overload

Terri Reinhart

We needed a new light fixture for our kitchen and had tried most of the stores in our area without finding what we wanted or could afford. Then we looked at the Ikea store website. Good selection, affordable, this looked like our best bet. We had heard a lot about this store and there was certainly a lot of excitement when it opened in Centennial, south of Denver.

I suggested we pack a lunch, some blankets, a flashlight, and a tent. I told the kids they would most likely be on their own for dinner. We also brought my mobility scooter, which was good. Walking continues to be my most challenging activity. For those of you who shop at Ikea often, you know how much walking is required. It was our first time. We had no idea what we were getting ourselves into. Chris drove. I told him where to go.

Twenty-two miles down the highway and around numerous twisting roads, we finally pulled into the huge parking garage belonging to Ikea.

Twenty feet inside the door, my remaining dopamine producing cells (DPC's) went on strike. They do this sometimes, usually when I need them the most. This time I was ready. I took some Sinemet. Though this medication usually slips in unnoticed and gets the work done, today it was no go. The DPC's were patrolling and the Sinemet was caught picking the lock. Today the DPC's were in no mood to allow a SCAB across the picket lines. 

Unfortunately, as most of us with Parkinson's know, there are times when the meds don't work. It's anyone's guess why this happens. Stress? Fatigue? Stores the size of small towns? DPC's are fickle, especially when there aren't enough of them. They decide when to work and when to tell me to take a hike – or not.

I was in trouble. I knew if I stayed on course, I was on my own. The tightness in my chest was not going to go away, my eyes would steadfastly refuse to blink, and I was at risk for falling asleep in the middle of the store. However, I did not come 22 miles to be thwarted by my own substantia nigra. After all, I had my husband AND my scooter with me.

All things considered, we did well. Having come for just one item, we made it out with less than ten. We found a nice light fixture for our kitchen, another light for over the sink, toilet brushes, a ceramic pot for Chris' Norfolk pine tree, and at least one more thing I can't remember. It took about three days to get from one end of the store to the other. Had I not brought the scooter, we'd still be there.

I think I need to go back. We forgot the light bulbs... and there was this cute little kitchen greenhouse, and candles, vases, pictures...

Better pack a lunch.

Living Well - Exercising the Heart

Terri Reinhart

The opposite of love is not hate, it's indifference.

The opposite of art is not ugliness, it's indifference.

The opposite of faith is not heresy, it's indifference.

The opposite of life is not death, it's indifference.” 

Elie Wiesel

In other words, I'm not talking about aerobics.

Physical exercising will help keep my physical body strong, yet there may come a day when my body isn't strong anymore. Making lifelong learning a priority will help keep my mind sharp, yet there may come a day when my mind slows and I don't remember things so easily. Life doesn't come with guarantees.

Even if there aren't any guarantees, I'm still going to place my bets on living a long life and staying upright. If there's any possibility I can keep myself going longer by doing something about it, I'll do something about it, but I won't go overboard. Once in awhile I'll even have a McDonald's cheeseburger. I'll fudge a little here and there. I won't fudge when it comes to taking care of my heart – and doing whatever I can to help care for the heart in every person I come in contact with.

Six years after being diagnosed with Parkinson's, I went back to the very first article I wrote for this journal. Do I still feel the same way?

Here's part of what I wrote.

* * *

If I ever need others to take care of me, I want people around me who will allow me to live a normal life.

This means:

· Friends and family who will get me out of the house and into the world, even if I am grumpy about it.

· Friends who will pour me a glass of wine and help me drink it, even if I’m not supposed to have it.

· Friends who will tell me bullshit stories and make me laugh.

· Friends who will make me cry.

· Friends and family who won’t mind if I tell the same stories more than once.

· Gossip. If there is a juicy story, I will want to hear it.

· Adult stories. I don’t ever want to be talked to as a child. Politics, religion - don’t stick with “safe” subjects!! I want to always have an opinion. You can even swear, if you need to.

· Friends who will get mad at me from time to time. And who will take it if I get mad at them.

· Friends who will tell me if I’m out of line.

· I want my friends and family to tell me what is going on in their lives, even if it’s painful. Don’t keep things from me so I don’t worry. You are my family and my friends and I have every right to worry about you.

· Friends and family who will hold my hand or put an arm around my shoulder.

· At least one friend who is not afraid to kiss me on the lips, even if I drool.

· Someone who will sing with me, no matter how I sound.

Being normal, being a real living human being means experiencing life. And life is both beautiful and painful. Experiencing life means experiencing disappointments and triumphs, joy and intense sadness. Sometimes it means getting really pissed off, too. And it can be delightful to get really pissed off from time to time. It’s energizing and it keeps the brain working.

I don’t want to be wrapped in cotton wool. Being safe doesn’t mean padding all the corners and keeping me from falling down. Being alive means getting hurt from time to time. I don’t ever want to be too protected. I want to be able to struggle – physically and emotionally. I want to wrestle with the real questions of life and love and friendship and what does it all mean, anyway?!

I want to keep bumping into life and crashing into love. Life does make its marks on each of us, but don’t worry. The marks you see on me?

They’re just love bruises.

* * *

Do I still feel the same way? Yes, but I rarely think about it. When I do, I know that what I want more than anything is to be able to do all this for my family and friends.

Six years can make a difference.

Dys-what?

Terri Reinhart

I know there's been a lot of changes in the field of dentistry in the last decade, however, when did someone decide it was a good idea to have patients close their mouth over the blasted suction tube? This first came to my attention several years ago when I was going to a respected periodontist to have my teeth cleaned. That was the day their office learned the meaning of the word, “dystonia”. As soon as my lips closed over the tube, my whole body twisted and contracted into a pretzel. It doesn't make teeth cleaning very easy, especially as I couldn't open my mouth to let go of the tube.

At this point, my dentist is very understanding and so are most of his assistants. Every once in awhile, there's someone new working with Dr. Sherman and I have to explain all over again. Actually, all I'm able to do is shake my head vigorously and refuse to close my mouth. Invariably, they give me their best patient look. Obviously, this patient isn't all together. They repeat their request at least twice until I finally awkwardly attempt to speak, despite the suction tube which is still waiting for my lips to close around it.

“Ah cand,” I tell the assistant, confirming his/her opinion of my intelligence.

I get a puzzled look in return. If I'm lucky, this is when the assistant will take the suction tube out of my mouth so I can speak more clearly – or at least as clear as I can when half my face is numb.

“I can't,” I explain once more, “it triggers my dystonia.”

“Dys – what?”

I used to try and explain my dystonia to people. Lately, I simply tell them I have Parkinson's disease. Then they smile and nod. They don't really understand, but it's a recognizable diagnosis. It's what Michael J. Fox has, and everyone knows Michael J. Fox. I realize this is a cop-out, but I rationalize it because I've already been sitting in the dentist chair for 3 hours and I don't want to take up any more time than absolutely necessary.

There is a lot of websites about Parkinson's disease on the internet and for this reason, I have chosen not to have specific medical information about PD in my journal. I hadn't intended to include medical information about Dystonia, but perhaps it would be a good idea. The dystonia community is much smaller and they don't have celebrity spokespeople to make sure everyone is aware of this disorder.

Someone on our online dystonia support group suggested we try to recruit a celebrity who has dystonia to speak up for us. I offered then, but was turned down. My celebrity status isn't quite up there with Michael, Mohammed Ali, Davis Phinney, and all those other folks.

More information will follow soon, and I invite anyone from the dystonia community to give suggestions for what to include. If there are any links to websites that have been particularly helpful, I'd like to include them here.  

Feel free to share any of this information with your dentists and their assistants.

The Sports Car of My Dreams

Terri Reinhart

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!

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

Terri Reinhart

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.

Stepping Out

Terri Reinhart

Plié [plee-AY] verb. Bent, bending. A bending of the knee or knees in dancing. 

I'm still enjoying dance. It agrees with my body. In fact, my body is enjoying dancing so much it has decided to practice steps whether I intend to or not. Lately it's the plié. That's when you bend your knees slightly. The movement is supposed to be done gracefully, but that's not always what happens. It would help if my knees would inform my brain when a practice session is about to begin. Instead, they plié without my permission and chaos ensues, at least for the moment.

When something like this happens, I'm never sure what to make of it. Is it just a temporary fad or have my legs decided on a permanent dance career? Whatever it is, I find myself doing a modified traveling waltz step as I go along: down, up, up, down, up, up; plié, step, step, plié, step, step. After a while, it's not too bad. I can get into it.

This, however, caused great consternation among the security personnel at Denver International Airport last week when my daughter, Emma, and I flew to Chicago. When we travel, I bring my walker along. I don't use it all the time, but traveling is stressful. Stress + Parkinson's = Total Klutz Time, or TKT. When I am in TKT mode, a walker is necessary so other travelers are warned to keep their distance.

The trouble, of course, is the security folks have to go over the walker to make sure I'm not sneaking in weapons of mass destruction in the front basket or the tubing. Their first question to me was, “Can you walk for a short distance without your walker?” Of course I can. I do it all the time, but to make them feel better, I walked as close as I could to the actual scanner before giving it up. Then I was on my own for the next 20 feet. No problem.

I walked through the scanner, lifted my arms in the required manner, and walked out, without a hitch. Emma had to go through twice. She has now learned to not wear jackets with sparkly metallic thread. It confuses everything. I gave her my best patient look. She rolled her eyes.

Once out of the scanner, I went to find the plastic bin with my shoes and other belongings. That's when someone behind me dropped their bin on the metal table.

Grand plié.

Not expecting my knees to bend, I grabbed onto the table. Then the security people took notice and asked me if I was okay. I assured them I was fine, then continued on my way, making another grand plié with every step. Security guards were asking me if I was okay, at the same time I was attempting to communicate to my legs that now was not the time to practice dance moves. Though I continued to assure the security guards I was fine and this was normal, I don't think they believed me. Before I knew what was happening, they had gathered up all my belongings and were escorting me to an area labeled, SECURITY – DO NOT ENTER.

After a moment of panic, I realized they were simply giving me an area where I could fumble around as long as I'd like without bumping into anyone else. They were actually quite nice after that. Maybe they felt guilty for taking away my walker, especially now it had been inspected and no weapons of mass destruction had been found. They even called for an electric cart to drive us down to our departure gate.

Once our flight was ready, we were allowed to board first, giving us first dibs on the overhead storage space. This is when I decided I make a good traveling partner. I briefly considered making this into a career; after all, I have always wanted to see the world. I could advertise: Bring me with you on your next trip and go to the head of the line!

Ah, but airplanes aren't as comfortable as they used to be. Instead of the nice wide seats and acres of leg room I remember from 20 years ago, airplanes are now more like air born Greyhound buses, packed like sardines. That first flight was a bumpy one. There were tornadoes somewhere below us wrecking havoc in Illinois. I turned green and wondered if I should dare move just enough to find the barf bag in case I needed it. Fortunately the trip home was nice and smooth.

Regardless of this, we had fun! I enjoy traveling enough to put up with crowded flights, narrow aisles, and little leg room. Though our trip was for medical appointments, and we were only there overnight, we were still able to see a little bit of the city from the elevated train which we took back to Midway Airport. It was incredible and lovely and it felt like we were flying; only we were much more comfortable. Chicago is beautiful when seen from the train. Hopefully we can see it from the ground some day.

I would go again in a heartbeat; which is good because we're going again next month. We have most of our plans made. Emma will have surgery at Shrine Hospital and we will most likely stay at Ronald McDonald House. Chris will come along with me and stay as long as Emma is in the hospital. Then he'll return home and the two of us girls will stay for another week or so.

I just have a little more preparation to do and I'll be completely ready. I want to learn a few different dance steps before we go, something my legs can practice without causing panic attacks in the people around me.

Sashay anyone?

Sashay [să-shā] verb, informal. 1. to walk or proceed in a casual manner 2. to strut or flounce 3. a journey taken for pleasure

Sounds good to me.