Stem Cell Story

It was a strange time to talk about stem cell research. We were at a post funeral reception in one of the most beautiful gardens I have ever seen outside the city's Botanic Gardens. I knew only a few family members, who were all busy greeting people, so I found a place to sit and tried to make light conversation with the person next to me.

What do you talk about after funerals with people you've never met? The obvious answer is, you talk about the deceased. How did you know him? Wasn't it a beautiful service? And then you share a memory or two in hopes it will spark something and your small talk won't fizzle. 

This time it was a challenge. The woman I spoke with didn't know the man who had died or his family, whom her husband had known growing up. I was definitely starting to fizzle when she mentioned her husband has Parkinson's disease. Imagine my relief! That doesn't sound right, but at least it gave us something to talk about.

I was even more excited when she told me he had participated in a study on stem cell treatment soon after he had been diagnosed - years ago. I asked if I could talk with him. She agreed and led me over to where he was having a smoke with friends. What he told me was impressive. The study had been done through the University of Colorado with private funding. This was during the Bush years and the moratorium on federal funding of stem cell research.

He has never been on medication for Parkinson's and has only the occasional tremor when he is very tired. Otherwise, he's fine.

I didn't have time to ask any more questions. It was a funeral reception, after all, and I didn't want to take up too much of his time. I have a whole list of things I'd love to ask, such as:

Did this involve brain surgery? What were his symptoms before the treatment? How many participants had good results? Did he, or does he use any alternative remedies to help with his Parkinson's. I wanted to ask him about one remedy in particular. I couldn't have been sure, but he had the aura of permanent mellow which is often associated with the early and enthusiastic cannabis researchers.

Oh well, I was glad I had the chance to talk with him. I'd love to learn more about past studies in stem cell treatments. I'll definitely be asking my neurologist about this when I go in to see her again. It would be really cool if Colorado was one of the leaders in this research.

If nothing else, we know Colorado will be right in the forefront with cannabis research. If we can't be cured, at least we can be mellow.

Brunch for a Bunch or Growing up with the Reinhart's

A couple of girls in my high school class were arguing one day about who is included in one's immediate family. One insisted on only including your parents and siblings. The other just laughed. No, she said, your immediate family includes your grandparents, aunts, uncles, and all your cousins, and everyone comes to every family gathering.

My mother-in-law, Natalie, was even more inclusive. Family gatherings included all of the above plus a few neighbors, several of her teacher friends, friends of her children, and maybe a family or two from the school where she taught.

I think I fell in love with my in-laws as quickly as I fell in love with my husband. Chris was smart. He took me to meet his family very soon after we met. It was a Saturday or Sunday evening and everyone had come home for dinner. I learned, over the next few months, Chris and his 5 siblings were free to invite friends for dinner and they frequently did.

Natalie loved to cook. She had been a nutritionist in the army during WWII, stationed in England. She was used to cooking for hungry crowds. This was good, because during the next year, three of her children married, including Chris and I. As our families grew, the family gatherings grew, too. Before long, all of us were married and bringing our children along. You'd think with 6 children and their spouses and 18 grandchildren, this would be enough immediate family for anyone, but Natalie found people endlessly interesting and there would often be someone new to meet, in addition to a few old friends, colleagues, and neighbors. If anything, the gatherings became larger and included more people as the years went by.

Natalie passed away in November of 2006, five years after her husband, Paul. Chris and I visited her the day before she had the seizure from which she never awoke. She dozed on and off, but whenever she was awake, she asked about everyone in our family. Just before we left, she woke up to say goodbye. Looking up at us with bright eyes and an even brighter smile, she said, “It's been fun, hasn't it!” On the way home, Chris told me he felt she was speaking more of her life than of the moment.  It wasn't until later, we learned these had been her last words.

We still get together, but not as much. Natalie was the matriarch and truly, I believe people came together to be with her. She left us with memories of warm meals, large family gatherings which never felt crowded, and a gentle sense of humor which occasionally included novelty eyeglasses (with eyeballs on springs) and an umbrella hat.

She also left her recipes, organized in cardboard boxes, some typed, some handwritten, and some with the unmistakable purplish blue print of the school mimeograph machine. On the recipes, she kept a diary of sorts; notes on doubling the recipes and how much was left over, who came to each gathering, and how they set up the tables and chairs. Our son, John, took some of these recipes and created a lovely recipe book, which is available online.  Take a look!  He included copies of some of the original recipes, notes and all:

Easter Brunch and a Bunch More

Now, our own family is growing. Our third grandchild is due to arrive any day now. Just having our kids and grandkids together makes for a full house. Lately, however, both Chris and I have been missing the large Reinhart family gatherings and this year, we invited everyone we could think of to join us for Easter. It was wonderful!

We plan to continue this tradition, though I would never try to take Natalie's place. That would be silly. For one thing, those would be big googly-eyed glasses to fill.

​clicking on the photo will take you to the online store where one can purchase googly-eyed glasses & other novelties

Ikea Overload

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.

If I was a car, my husband would have traded me in by now

Today is the official last day of the year. Everything, even the planet, is a year older. Time is taking its toll on our household. During 2012, our washing machine went out on us twice, our dishwasher gave up completely, everything needs to be painted, and my doctor tells me I need my electrical works rewired.

If I was a car, my husband would have traded me in by now. Let's face it, would anyone keep a car around if the shock absorbers were shot, the heating and air conditioning came on by themselves, often getting mixed up as to which was which, and the transmission had gone haywire? It's not as if we get rid of cars when the ashtrays get dirty, but there comes a point.

Our old Toyota had a sticky valve in the carburator. When it stalled, I immediately turned on the hazard lights and popped open the hood. Our son, John (age 10), got out, took off the air cleaner and stuck a pencil into the valve to keep it open while I restarted the car. Then he put everything together and jumped back in. We kept that car going like that for a long, long time.

Another old Toyota had problems with the ignition. If we took the key out, we had no assurance we could get it back in and turn it. We had the same problem with the door lock. No problem. We simply drove the car and left it unlocked with the key in the ignition where ever we went. Either we got lucky, or it was actually stolen many times, driven around the block and returned.

Our Ford van had a lot of miles on it, but we still kept it – until the transmission went out. At first, I would put it in first gear and rev up the engine for several seconds before suddenly it would kick in and jerk forward. Gradually it gave up and refused to go anywhere. By that time, it had over 200,000 miles.

And me? I have to warm up my engine a lot longer these days. It takes at least a couple cups of tea with caffeine. Of course, there's always the chance of flooding the engine. Then we're delayed while I make several trips to the bathroom. Once my engine is running, I try putting myself in gear; however, the transmission is faulty and I often end up going backwards or sideways.

I tend to veer toward the right, which ordinarily means the tires need to be rotated. As I don't have tires, I just keep veering. I think it's my electrical system. At least my mechanic, I mean my doctor says so. She has decided it would be best to get a system in place so I could be hotwired. This would be the DBS or “Drive Better with Science” system. It is run by the “Darn Battery System” which would be implanted in my chest, turning it into a “Durable Boxy Square” 3rd breast.

The fact that the real name is “Deep Brain Stimulation” doesn't help me in the heebie jeebie department. That I've talked to many people who've had this done and speak very highly of it, doesn't really help, either. I'm not ready to do the complete overhaul. For now, I'll make do with the jalopy veering and stalling and crashing.

The crashing has been happening a lot more lately. I won't make any comments on my exterior shape, except it would be worse if I hadn't added larger bumpers in recent years. I admit, from time to time, I worry a little. It's a pain to put up with a beat up old car. Will my husband continue to put up with a beat up old wife?

Not to worry, he says. I'm an old classic and he's sentimental about old classics.

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.

Death by Parkinson's

Every time I go into see my neurologist, she asks me if I've thought about having DBS surgery. I roll my eyes and let her know my thoughts are the same. It's still brain surgery and I'm not ready for brain surgery. At this, she will remind me of the limitations of my medication and say, “You are young, you know. I'll be treating you for the next forty years.”

I thought about this when I read, once again, an obituary which said the deceased had died of Parkinson's disease. Whenever I read this, I yell out loud to all the people in the newspaper, deceased or not, to inform them, “YOU DON'T DIE OF PARKINSON'S, YOU DIE WITH PARKINSON'S!” This is what I've been told, anyway. What's up? Am I wrong?

Time to go to the experts.

The Parkinson's Disease Foundation says this:

Q: I just found out a friend has PD. I don't want to ask him this question, but what is the long-term prognosis? Is it fatal? (anonymous)

        A: Parkinson's disease is not fatal.

It's disconcerting, to say the least, to see Parkinson's disease listed as the cause of death. This seems to be a widely held belief. One can even look on the internet and find lists of people who have died of Parkinson's. There's a list of celebrities and a list of politicians. There's even a list of chess players who died of this disease.

Wow.

I wonder if chess players are more at risk for developing Parkinson's?

Admittedly, complications of Parkinson's can cause problems which can shorten one's life. Most of the complications are similar to getting old. If we can't move as much, we're more susceptible to things like pneumonia and heart disease. Choking is a danger. There are undoubtedly other complications, but I'll leave them for now. I don't let myself go down that road very often.

I'm not trying to discount these dangers. I've had the Heimlich maneuver done on me four times. From this, I've learned to not eat meat or salads when my medications are wearing off. I've also learned not to get angry and go on a rant about something or someone while I'm eating meat. That's what happened the first time I choked and it had nothing to do with Parkinson's.

There are many other complications of life which can cause death. Remember what Bilbo says, “It's a dangerous business, Frodo, walking out your front door.” If we go about thinking of all the possible ways our lives can be shortened, we won't go very far at all. And, of course, we know staying home and doing nothing isn't conducive to a long life, either. I don't really think about this much at all, not anymore, and not until I read one more article listing death by Parkinson's.

Out of curiosity, I had a look at one of the websites with its list of PD victims. The site is “The Political Graveyard” and contains many different types of lists. I looked at their list of politicians who died of Parkinson's disease. I was pleased to note how much information is included in each entry, including the exact age of the person in years and days.

I was even more pleased to see the average age of the victims. Most were in their mid to upper 80's. The one in his 60's actually died of a heart attack and had Progressive Supernuclear Palsy, not Parkinson's. Then there is Milward Lee Simpson, from Cody, Wyoming, who died of Parkinson's disease at age 95 years, 210 days. If PD is what took his life, it sure took its time about it!  

I'm going along with my doctor, though not necessarily with her suggestion of brain surgery. I'm going to assume she'll be treating me for the next 40 years. That will make me 94 years, 360 days old... and counting.

I realize, of course, this might not happen. Who knows whether my doctor will still be around in forty years.

Dys-what?

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

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!