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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: traveling

Mrs. Reinhart Goes To Washington

Terri Reinhart

It might look like I'm working, but in reality, I haven't been able to concentrate on doing much reading and studying today. Tomorrow morning, long before any sensible person is out of bed, I'll be on my way to the airport and off to Washington D.C. 

This has been planned for awhile. While I'd like to say I had very noble reasons for applying to review funding applications for clinical studies, the trip to DC was the real incentive. I love to travel. I love seeing new places and finding my way around a new city. I enjoy meeting and talking with people from all over the place. I love to travel. Because I am leaving at such an early hour, I'll get a chance to explore a little. Maybe I'll see the White House? I love to travel.

Maybe if I say it a few more times, I'll stop being nervous. I LOVE TO TRAVEL! 

It didn't work. This trip is just a little bit different from my usual travels. For one thing, Emma won't be coming with me. I'm going all by myself. Solo. No one to pick up my shoes for me when I almost leave them behind in security. When I arrive in DC, there won't be familiar Ronald McDonald House staff to greet me. I'll have to buy my own lunch and dinner.

It's a work trip, of course, and I have to be prepared to give my presentations on Thursday and Friday. Yes, I'm nervous. Not only will I not know anyone, but this is a PROFESSIONAL meeting. People are wearing "business casual" clothing. I finally consulted a former colleague and friend to guide me in finding something that didn't look like middle-aged retired kindergarten teacher. I can do this... and hopefully, not squirm my way through the meetings. The others on the panel will be scientists, doctors, and other experts. And me. What in God's name made me think I could do something like this? 

What if my Parkinson's and dystonia kick in big time? It does when I'm nervous. What if I start walking wonky, my balance is off, and I start slurring my words? What if they think I'm drunk? Okay - do I have my "I am not drunk" card with me? Check. 

So, yes, I'm nervous. Instead of reading and preparing, I've been panicking. I've been to the store twice already getting toothpaste, tooth brush, and deoderant. The hotel experience is one I haven't had in years. I couldn't remember what I needed to bring. Almost... I almost wrote a friend to ask whether I needed to bring soap and shampoo. How many pens do I need to bring? Will I need some paper? Where are the socks I had hanging on the clothesline? What if I run out of deoderant?

My family (Chris and Emma) gently reminded me that, though neither of them had ever been to DC, they were fairly certain I could find a store there. 

I'll be fine. I've got my clothes, my notebook, my computer, my phone, all the various cords that go with phone, computer, and scooter. I have "The Last of the Dragons" by E. Nesbit, my little book of Welsh phrases, and my knitting. I'll admit, the last three are security items. Don't laugh.

I'll be fine... as long as I remember my shoes after I go through security. 

Neither snow, nor rain, nor dark of night - the tale of two intrepid travelers

Terri Reinhart

IMG_20130417_155033.jpg

by Terri and Emma Reinhart

April 17, 2013

Emma:  The three most important rules of traveling,

    1. Never pass up a chance to use the bathroom.

    2. Never pass up a chance to eat.

    3. Never pass up the chance to sit down.

Terri:  One more rule:

    4. Be pleasant.

My favorite part in the movie, “Harvey”, is when Elwood P. Dowd tells the doctor, “My father always told me that in this life you need to be either oh, so clever or oh, so pleasant. For most of my life I was clever. I prefer pleasant.”

Emma and I started out this trip to Chicago a little reluctantly. With the birth of our new grand daughter last weekend, it was difficult to think of leaving.

Emma:  I was also rather reluctant to travel since it meant leaving Lexus. Granted, I am a little grateful to not have to wake up at 7:30 for a few mornings or constantly go out with Lexus on the off chance that she needs to pee. Aside from the slightly more free time this allows, I am still a bit of a worried new momma but I know that she is with a very capable puppy sitter and is probably having a marvelous time with their dog.

Arrival at the airport

Terri:  We took the DIA Skyride from downtown Denver and arrived in plenty of time to catch our 2:50 pm flight. The boarding passes printed, we went through security and headed down to the gate. That's when Emma looked at her boarding pass and asked about the boarding time, which was listed as 6:05 pm. I assured her it was probably just a mistake. We looked at the departure times, just to make sure.

Emma:  I was sure there was a mistake. That was more than 5 hours away! Yet, sure enough we checked the departure schedule. Delayed. Scheduled to board at 6:05 and leave at 6:40! Ugh, what were we going to do?

Terri:  We made our phone calls, one home to update Chris, and one to Ronald McDonald House. Ronnie's house closes its doors at 8 pm. We won't land in Chicago till 10 or after, then there's the cab ride. They agreed to check with the house staff and see if someone would be willing to stay up late and let us in.

YEAH! They'll let us come!

Now, what to do for the afternoon? I called Chris and let him know we are fine. There are plenty of lovely shops and I have my credit card.

Another Rule for Traveling

    5. Never pass up a chance to shop

Emma:  I approve of the new rule. As for the flight, we kept checking the departures to make sure the flight was not cancelled. I was a little worried. We overheard a man saying that he had been here since yesterday waiting for a flight. It was also snowing quite a bit now. So far so good though! There were a good number of people waiting around for delayed flights, I'm sure the shops were happy.

4:00 update:

Terri:  My energy gave out before we reached our credit limit. Time to rest. Pleasantly.

Emma:  Time to get out the music. And perhaps people watch. Always fun in an airport. I had put a bunch of audio episodes of “Cabin Pressure” on my MP3 player, I thought it was appropriate. If you're not familiar with it, “Cabin Pressure” is a British radio comedy about a crew of a small airplane that often get into all sorts of mix ups and on each others nerves. It is very funny.

Terri:  People watching is fun. Talking to people is fun, too, especially when it's crowded and everyone's been waiting a long time. I now have 35 more Facebook friends.

Emma:  You're exaggerating mom, it's more like 50 more Facebook friends.

5:00 update:

Terri:  Sitting right next to the gate doesn't make the plane come faster. If the alarm goes off suddenly, it may be because I've had a serious hot flash and have dashed out the emergency exit into the snow.

Emma:  I am wearing all the scarves because we are sitting by the gate and emergency exit. It was the tropics at the other seats, it is the Arctic here. But mom's happy.

I suddenly realized why it is not such a good idea to gulp down the last of the now lukewarm Izze drink. Hiccups are not very fun. We brought a couple snacks from home: grapes, strawberries, nuts. We also bought a bag of “Colorado Mountain Rocks, Collected Daily from the Rocky Mountains” They're tasty. I should specify that they are not actually made of various pebbles and minerals but something that is a little easier to chew and much tastier, chocolate.

Terri:  Another hour and we should be boarding. We have eaten. We have used the bathroom. We have shopped. We are sitting.

Emma:  We have cured my hiccups! And we are getting a little tired of this trip already. Maybe it will be better tomorrow, it's supposed to be much warmer in Chicago and I hear there is more to do then sitting and waiting, which will be nice. (Actually I know there is more to do, I've been there before. Lot's of attractions. And trains... And buses).

Terri:  And we're still pleasant... right?

Emma:  Bah humbug! I mean... Yes, of course. Bright eyed and smiling.

On the plane – update:

Terri: Boarded at 6:15, took off at 8:15. Will they still be gracious at Ronald McDonald House if we ring the bell at midnight?

Emma:  Yes, I'll have the turkey sandwich and the cheese and hummus platter. Yum. Ooh, goat cheese? And there's chips! If you've never had Pringles with goat cheese I... wouldn't really recommend it but it was not a half bad experience. I always forget how noisy the engines are so I don't think I'll listen to any music. Oh, well.

Terri: Pringles, ginger ale, and sleep.

In Chicago – 11:45 pm:

Terri:  Landed. Attempting to hurry across airport, call a cab, and get to Ronnie's house as soon as possible. Our attempts to hurry are thwarted by a reception for a group of WWII vets arriving in Chicago. From their gate to the outside door where they are loaded into a limo, their path is lined with soldiers in dress uniform, saluting for each of the older men as they are wheeled by in wheelchairs. A bagpipe band is at one end and a brass band at another. Beautiful, inspiring, wonderful, but it also makes it difficult to get from point A to point B.

Cab driver got lost going to Ronnie's house. Didn't know enough about cabs to argue the fare. Paid way too much. Got in at 12:45 am. Time to sleep.

Another rule for traveling:

6. Never pass up an opportunity to sleep.

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.

 

Off Road Traveling and that Someday which is Today

Terri Reinhart

As you have probably seen already from the photo that's been posted several times, I am "off-roading" these days. The photo is not totally honest. I rarely travel in the streets if I can help it. I travel almost exclusively off road, on the sidewalk. We finally bought my mobility scooter and we've been putting this little baby to the test. Last Saturday, we got on the train in Denver and came to Glenwood Springs. We had planned to do this as our 30th wedding anniversary celebration and also as a way to begin Chris' retirement.We had talked for a long time about taking a trip together someday, and now we finally are doing it.

There are all kinds of things that I plan on doing someday. Someday, I plan on finishing my book. Someday, I plan on writing down the Grandmother Willow stories. Someday, I will have the studio finished. I could go on and on, but you get the idea. When will someday turn into now?

This is part of why I am so happy that we have come to Glenwood. Of course, the biggest and best reason for taking this trip is that Chris and I can spend 6 days together, just the two of us.  We have had a marvellous time wandering around the town, shopping, swimming, and today, we even rode the Tramway up the mountain! Chris was rightly proud of this accomplishment as he has a serious fear of heights.I have been most excited about wandering around the town and shopping. I can do that now because I am not concentrating only on keeping myself upright and moving, as I need to do if I am walking.

My new scooter is part of how we made our someday become today. Parkinson's is a strange disorder. My neurologist refers to it as a designer disease because it affects different people in so many different ways and our reactions to medications are also very different. There are some days when I don't appear to have any physical challenges whatsoever and other days when I have difficulty getting around in my house.

I met one man whose Parkinson's wasn't at all visible to other people. When a friend of his, whom he hadn't seen for several years, came to town, she didn't believe that he had anything wrong with him and she actually became angry with him for worrying her with his story of having Parkinson's.For those friends of mine who see me only when I am doing well, they might wonder why I would even think of getting a mobility scooter. Isn't it important to exercise when you have Parkinson's? And why would I want to make myself look and be more disabled than I am?

My answer to these questions is simple. I am not trying to be more disabled, I am trying to be more mobile. Over the last 7 years, I have given up a lot of activities that I loved, just because I knew I could not do the walking involved. I didn't go to festivals and fairs anymore. I wasn't able to take long walks or opt to walk with my children to the library instead of taking the car. I didn't go to museums or shopping malls. Some places have simple non-electric wheelchairs that can be used to get around but that really makes me feel disabled! I don't have the strength to push myself through a museum so I would be dependent on someone to push me. Walking will never be the way I get my exercise because, after a half a block or so, my dystonia will kick in. My physical therapist agreed with that. With my scooter, I am able to do things that I haven't done for 7 years. I am more able, not more disabled with my scooter. Why wait till my disease has progressed to the point where I can't get around any other way? I feel good now and I want to do as much as I possibly can do, now!

Why wait for the someday that may never come? Having successfully accomplished so much on this trip, I now have renewed energy to bring home with us. I am determined to make many more somedays turn into todays.

First things first, however. We have just spent two and a half days wandering around the town and being very busy.

I think I need a nap.