Friday Book Whimsy: No Time Like the Future

Actor and author Michael J. Fox lives with Parkinson’s Disease. He was diagnosed in 1991 with early onset PD. Since that time, he has written four novels about his life with PD. More important, in 2000, he founded the Michael J. Fox Foundation to research cures for this yet-uncurable disease. His foundation provides support for both people with Parkinson’s and for the caregiver. Thanks to this foundation, a whole heck of a lot of money is going into research about the disease.

I pay particular attention to the Michael J. Fox Foundation, and to the founder himself, because my husband was diagnosed with Parkinson’s in 2009. I asked my husband once if it bothers him to read Fox’s books or see him on television. He gave a resounding no, saying instead the man inspires him. I find that to be amazing.

No Time Like the Future is Fox’s fourth book. I will admit that I have not read the other three. I was coaxed into reading this particular book, and was ever-so-glad that I did. Fox’s writing is funny and smart and self-deprecating. He doesn’t wallow in his sorrows, but instead, is forthright about his condition and how he and his family live and cope with the disease.

No Time Like the Future tackles an unrelated issue that the actor recently went through, that being a spinal cord issue requiring very risky surgery. His recovery was obviously impacted by the fact that he experiences the symptoms of PD, and his ability to work so hard to recover is inspiring.

His story gave me perspective and made me laugh at the same time. I frequently read parts out loud to my husband, saying, “Don’t feel bad. Michael J. Fox is going through the same things you are!”

Fox, of course, has the advantage of wealth and fame. As such, he is able to experiences that we will never obtain. But I didn’t find that offputting at all. Instead, I was reminded that pushing forward, and even more important, laughing at your own foibles, is critical in facing this disease.

I think the book would be interesting to anyone who knows a person with PD. I also, however, think it is just a well-written and funny story.

Here is a link to the book.

Saturday Smile: Kicking it Off!

At Bill’s last semiannual movement specialist appointment for his Parkinson’s, we were invited to apply to participate in a clinical research trial for a distribution system for what is probably the most important medicine to combat Parkinson’s symptoms. Bill already takes Carbidopa-Levadopa three times a day. However, in the past few months, he has been bothered more by his symptoms during the period of time between when Pill No. 1 wears off and he can take Pill No. 2, etc. This clinical trial involves the same medication, but he would wear a pump that would give him a continuous flow of the same meds, thereby eliminating the down periods.

We were delighted to learn this week that he has been approved for participation. We have already had a couple of visits with the medical and research people involved in this study. It will be life-changing, both in the learning curve and potentially in his quality of life.

Please pray for us, as it is somewhat of a choppy road ahead as we learn the ins and outs. For example, he will be seen by a nurse twice a week for the next two years. I can’t get the image of a woman in a nurse’s cap looking through our bedroom window out of my mind.

We (and when I say “we” I really mean “he and his doctor”) will be facing such obstacles as figuring out the dosage, determining how to wean him from his current oral medication as this pump starts taking over, potentially increased symptoms as they work out the kinks, finding a comfortable way of wearing the pump that doesn’t involve wearing a women’s bra, and other things that we haven’t even thought of.

Having said all of this, we are both positively thrilled with the distinct possibility that this continuous flow will improve his day-to-day activities. If attitude has anything to do with this, he will be the participant to whom all other participants will be compared…..

This possibility makes me smile, if somewhat nervously.

Have a great weekend.

D Cup?

Two things happened yesterday that made me smile.

The first was that I received my package of goods that I had ordered from The Pioneer Woman Mercantile last week when Jen and I journeyed there. Five plates that will form a wall decoration in my kitchen on the off chance that I actually remember to buy plate holders from which to hang them. I was somewhat concerned that they might have gotten lost because Jen also purchased some items, they arrived within a couple of days.

After opening the box, however, it became clear why my package took longer to arrive. There was no way that any one of those plates could have gotten broken in the mail. I have quite literally never seen such effective packing of breakable items. It took me 20 minutes to unwrap five plates……

But they were packaged with love. I know that because it says so right there on the box. They were undoubtedly packaged by the Pioneer Woman herself…..

The second thing that made me happy was that I was reminded about why I love my husband. Yesterday he had his six-month appointment at his movement doctor’s office. We have gone every six months since he was diagnosed with Parkinson’s disease nine years ago. After he was put on a couple of really effective medications about eight years ago, he has really not struggled a lot with symptoms.

However, lately, we had both noticed some change in his mobility. Not huge changes, but noticeable. And being as active as he is, it sort of drove him crazy. But the nurse practitioner with whom he meets every six months took it all with a grain of salt. Your symptoms haven’t changed that much, she said. You are just experiencing your symptoms more when your medications wear off. We can deal with that.

The thing about the medications for Parkinson’s is that, because they mess with the dopamine in the brain, the side effects can sometimes be as bothersome as the meds themselves. Still, 30 years ago, the medications for PD were mostly ineffective, so it’s a blessing to be able to function almost normally as does Bill after being diagnosed almost a decade ago.

But here’s why I love my husband. He goes with the flow. He never complains. He’ll even eat pho with me if I catch him at a good time. He has accepted his physical limitations without complaint. So when his NP told him that there are options to improve his mobility, he was all ears.

What she suggested to him was that he participate in a clinical study in which he will wear a pump measuring about 3 inches square and an inch deep. The pump will give him a continuous flow of what are basically the same meds he’s currently taking. Since the flow is continuous, he won’t experience the problems that result from meds wearing off.

Bill asked her how people wear the pumps, since it must be worn 24 hours a day. She told him that people have come up with creative ideas. She excitedly told him about one man who wears a woman’s sports bra and places the pump inside that. Bill physically blanched at that notion. Nevertheless, she mentioned it several more times. I finally said, “Vicky, stop with the women’s sports bra. It ain’t happening.” Bill might go with the flow, but wearing a lady’s bra is his break point.

I’m not sure which word scared him the most: Bra. Women’s. Or sports.

Thursday Thoughts

The Doctor’s Calling
This has been an unusual week for me and several others in my family. My sister Bec had surgery day before yesterday on her ear. She has had ongoing problems with her ear, including partial deafness and constant ringing. Most problematic for her, however, is that the ear was completely open from a previous surgery, preventing her from being able to go into the water. In fact, showering was complicated, involving cotton balls, many cotton balls. So while the surgery won’t restore her hearing or stop the ringing, the doctor hopes it will allow her to go into water without worry. Yay. She could  snorkel once again. Keep your fingers crossed and throw in a prayer or two.

The other health event that took place was that Monday, my 4-year-old grandson Micah (of dance fame in last Saturday’s Smile) put a rock into his mouth while playing outdoors at his preschool. He swallowed the rock, which proceeded to get stuck, at which time he was choking and couldn’t breathe. While coughing and struggling to breathe, he aspirated the rock into a lung. Quick-thinking school personnel immediately called 911 and he was taken to the hospital in Montpelier, VT, where they live. It was quickly determined that he would need surgery, so he eventually he was transported by ambulance to a hospital in Burlington, VT, where he underwent surgery involving a scope that went into his lung through his nose.

Micah in the ambulance to Burlington, VT.

Micah in the ambulance to Burlington, VT.

After numerous tries, the fabulous doctors were successful, and pulled a ONE CENTEMETER rock from his lung.


He spent the night in the hospital as he recovered from his general anesthesia, and happily went home the next day.

Getting a ride to the car from his Mom as he leaves the hospital on Tuesday.

Getting a ride to the car from his Mom as he leaves the hospital on Tuesday.

This was scary, of course, but the most sobering thing around all of this is that had this event taken place a hundred year ago, he probably wouldn’t have survived. God is good, and Micah told his mama firmly, “I won’t put any more rocks in my mouth.” Good idea Micah.

Helping Hands
I stumbled upon this photo this week. The photo was taken exactly four years ago and features Bill putting together something or other from IKEA, and he is being assisted by then-4-year-old Kaiya. The picture (which is pretty crappy in quality) is a poignant one for me for a couple of reasons. At the time the photo was taken, Bill’s Parkinson’s was serious enough that he had reached the point that he had effectively lost his small motor skills, preventing him from doing things like picking up tiny screws. Well, IKEA = tiny screws. I took the photo because he had asked Kaiya if she would help him, and she was handing him the small screws so that he could screw them in. I still cry when I think about it. I remember that it made me so happy that my husband didn’t let a little thing like Parkinson’s disease stop him from doing what he wanted to do. He would just ask for help, and frequently did. But it also reminded me that just a few months after that photo was taken, Bill was put on a new (for him) regime of medications that were truly miraculously life-transforming for him. Almost immediately, he regained his small motor skills, and many other of the effects of the disease were alleviated as well. He continues to do very well under this medication regime. I am so grateful to live at a time where there are medications available that have literally added productive years to his life. Just like with Micah, if he had been diagnosed 100 years ago, this would not have been the case. I am a very grateful woman this week.



In the past few weeks, I learned some difficult news about a couple of my friends. One was diagnosed with cancer; the other – a woman of my age — learned that she has early-onset Alzheimer’s disease. On both occasions I was nearly knocked off my feet. I reminded myself – once again – to never, NEVER whine and/or complain because I – on only two occasions — have had to go to the hospital and get a nasal gastric tube inserted. Life is all about perspective, my friends.

So I have, of course, added these two friends to my prayer list of people who are ill. But I can’t help but feel as though prayer seems just so insignificant sometimes. I pray for miracles, and wait for the miracles to happen. They never seem to happen, unfortunately. As far as I know, my prayers haven’t brought anyone back from the dead.

I thought of my friends yesterday as I listened to the readings. The first reading was from first Book of Kings, and talked about Elijah bringing a poor, lonely widow’s son back to life simply by asking God to do so. And then, in St. Luke’s Gospel, Jesus raised the son of a widow from the dead because her crying moved him so.

Whaaaat? Maybe the problem is that I’m not a widow. Or maybe I’m not praying hard enough, or in the right way.

Or maybe, just maybe, my prayers are being answered in unexpected ways.

Beginning immediately after Bill was diagnosed with Parkinson’s disease, I began praying every day that God would perform a miracle and cure him of the disease. Why not ask, I told myself. And every six months when we would go to see his neurologist, they would tell us he was doing remarkably well, but, yes, he still has Parkinson’s disease.

Finally, it occurred to me that while he wasn’t being miraculously cured of this thus-far incurable disease, he is still able to do everything he could do before. He might do it slower. He might need some help on occasion. Perhaps as time goes on, he will need more help. But God has given us a full seven years since his diagnosis to continue to live a good life. And we have grown closer, and I have learned a bit more about patience. All small miracles.

My friend who has been diagnosed with cancer posted a picture on Facebook recently of her and her husband eating breakfast al fresco at Denver Biscuit Company, one of her favorite restaurants. In the photo, her husband is looking at her and has his arm gently around her neck, and they are both smiling. It is the sweetest picture, and I cried for an hour after seeing it. In fact, as I write these words, I am crying. Perhaps the miracle isn’t that her cancer will be cured (though I hope it will be) but that the two of them will grow ever closer as she tackles her future.

I will keep praying for miracles because God can do anything. But I will try to stop sitting back and waiting for a dead man to sit up or a leper to be cured and appreciate the small miracles that happen every day.

Here are my miracles….

Family Photo

This post linked to the GRAND Social

Are You Sure? I’m Positive!

You’ve got to accentuate the positive
Eliminate the negative
Latch on to the affirmative
But don’t mess with Mister In Between. – Johnny Mercer, Harold Arlen

The other day I was talking on the telephone with my brother, and we got on the subject of the power of positive thinking. We both agreed that thinking positively can have a tremendous impact on one’s life, and even on one’s health. My brother told me that Bill is his model for thinking positively. Despite the fact that the world dealt Bill a hand that included Parkinson’s disease, Dave said in the morning when he’s praying for all of the people he knows who are sick, he has to remind himself to include Bill in his prayers.

“Bill is so upbeat all of the time that I forget that he’s got Parkinson’s,” Dave said.

Bill is, indeed, one of the most positive thinking people I know. And that poor man married me, Ms. Glass-Half-Empty. Oh, I’m not the world’s most negative person, but I do tend to go to the worst case scenario if I have half a chance. Not Bill. He is always, ALWAYS certain that things are going to turn out okay. And what do you know? They almost always do.

St. Mark’s gospel on Sunday was about the blind man who asked Jesus to make him see, never doubting for a moment that Jesus would let him down. And, of course, Jesus told him his faith had saved him and gave him sight.

Interestingly, Father Larry’s homily wasn’t about faith, but instead, was about forgiveness. He mentioned the church shooting that took place in Charleston, SC, in June of this year. Nine people in all lost their lives in that shooting at the Emanuel AME church, all African Americans. I remembered the shooting, but what I didn’t know is that the families of the victims all chose to forgive the shooter rather than becoming embroiled in hatred. Wow. That is amazing. I told Bill after church that I’m not sure I could forgive someone who killed a loved one.

Forgiveness is difficult, but if one is committed to thinking positively, forgiveness simply MUST be part of that package. If one is embroiled in hatred, positive thinking is out of reach.

Of course, as I thought about positive thinking, I thought about the song with the lyrics above. That song was written in 1944, not long after the Great Depression and at the height of World War II. Imagine encouraging people to ac-cen-tu-ate the positive and e-lim-i-nate the negative when you are surrounded by the violence of war. Apparently it was modeled after a consistent theme that Baptist ministers had long used. In fact, that’s where Johnny Mercer got the idea for the song. He heard a sermon by an African American Baptist minister in which the minister said ‘you got to accentuate the positive and eliminate the negative.’ Sound familiar?

Homefront_(U.S._TV_series)_dvd_coverAs an aside, every time I hear that song I think about a television show in the early  1990s called Homefront. The show took place during and immediately following World War II, and its theme song was Accentuate the Positive. I loved the television show, and wish like crazy that I could find it somewhere. It’s where I learned the words to the song, which now are using up brain cells along with the words of every song ever written in the 60s and 70s.

Maybe if I think positively, I will find a copy of the DVD…..

This post linked to the GRAND Social



Saturday, the inevitable happened. Late in the afternoon, I felt the very beginnings of a scratchy, sore throat – the never-fail sign that I’m working on getting a cold. I did what I always do. I quickly began taking Zicam. I know, I know. The experts all say that the notion that zinc can prevent a cold if you start taking it just as soon as you feel a cold coming on – or at a minimum, shorten the duration – is nothing more than an old-wives’ tale. Still, I do it every single time, and I believe with my whole heart and soul that it does, in fact, shorten the duration.

Anyway, I used the word “inevitable” because the three grandkids with whom I have been spending considerable time because mommy has been drafted as room mother and has had to attend training, all had colds.

As an aside, fellow Baby Boomers – do you remember when being a room mother meant baking cupcakes to give to the kids on St. Patrick’s Day? No more. Being a so-called room mother now means being an unpaid assistant to the teacher. It involves COMPUTER TRAINING. I kid you not. Gotta love those education budget cuts. And no freshly-baked cupcakes because they potentially contain gluten, peanuts or other kinds of tree nuts, dairy, or (gasp) sugar.

Anyhoo, after wiping many runny noses, overseeing sneezes and coughs, and after Kaiya actually was diagnosed with pneumonia, my body finally threw in the towel and I got a cold. Monday was my worst day. I’m feeling better each day.

A garbage can full of used tissues.

A garbage can full of used tissues.

Having said that, I will tell you that every time I get a cold, I am reminded that a cold makes me feel so darn yucky. I am snotty and sniffy and hacky. There are dirty tissues everywhere, even though I try really hard to use them and then throw them away. My nephew Erik told me once that I was the only person he’s ever known who actually says “a-choo” when I sneeze. And speaking of old wives’ tales, I can never remember whether you’re supposed to starve a cold and feed a fever or vice versa. In keeping with my general rule of thumb, I feed both.

But as bad as a cold will make me feel, Bill is 20 times worse. Here is this man who lives every day of his life with Parkinson’s Disease and never complains. But when he gets a cold, he is down for the count. He doesn’t eat; he can’t even imagine leaving the house; he looks so pitiful that it nearly breaks my heart. He got a cold one time when we were visiting his mother in Chicago, and he never even left the house to get a hot dog. That’s serious.

Back in 2003, Bill and I traveled to London with some friends where we spent the week of Thanksgiving. I remember that trip well for several reasons, including the fact that our Thanksgiving dinner was fish and chips. But one of the less cheerful memories is that I sat behind a man with a terrible cold on the way home. He hacked. He sneezed. He sniffled and snorted. God bless him, because there probably wasn’t a lot he could do short of not flying.

Of course, I got his cold, and it was undoubtedly the worst cold I ever got in my life. It was the cold that wouldn’t end. I know this because it was the year I turned 50, and my family threw a big party for me. Both Bec and David flew in for the party. That would have been mid-December, and I was still sick as a dog. By that time, the cold had moved to my eye, and I had a terrible eye infection to accompany the hacking cough that sounded as though I was in the last stages of consumption. That’s tuberculosis for all of you who don’t read old western novels. You can see in this photo how sick I was…..


As you can see, my family wouldn’t even let me sit up with them, but pushed me back into the couch. Sigh. I’m used to it.

At any rate, no cold since then – including this one – has even come close to being as bad.


This post linked to the GRAND Social

Shaky Business

Bill was diagnosed with Parkinson’s disease in July 2009. Six years ago that seems like six weeks.

Bill had about a one-and-a-half minute pity party, and then continued on with his life as usual. Well, not quite as usual. PD can display itself in a variety of ways; for the most part, Bill’s primary symptom was slowness of movement – called bradykinesia. The odd thing about PD is that from Bill’s perspective, he was moving normally, though he understood that he wasn’t from the perspective of others. It’s a weird disease.

Anyway, the symptom he had that probably bothered him most was not the bradykinesia (since I looked up that word, I’m going to use it as often as possible to show you how smart I am because it’s not really something you use much in general conversation). What impacted his life most was that he lost a lot of small muscle dexterity. And when you like to build and repair and put together things as much as he, it sucks to not be able to handle teeny things like screws.

One time he was putting together something or other, and he had then-3-or-4-year-old Kaiya helping him by handing him screws because it was hard for him to pick them up. It was the sweetest, most poignant thing you can imagine. And unbeknownst to him (at least until he reads it in this blog post), I went into the other room and cried. Not because I was sad that he needed help (though admittedly that entered into it), but because he had Kaiya’s help. He always figures out how to do what he needs to do, even if it’s asking for his granddaughter’s help.

Bill has accepted his condition, calling it a mere “inconvenience.” I, on the other hand, am scared ALL THE TIME. If the poor man drops a pencil, I am certain it’s the symptoms returning or getting worse. Most of the time it’s just that he dropped a pencil.

When he was first diagnosed, part of my freaking out was my fear that I wouldn’t be mentally and emotionally strong enough to care for him if that’s what it came to. Jen talked me off the ledge by assuring me that Bill and I would never be alone. That’s what grandchildren are for, Jen said with certainty. Addie will help you, she said.

I believe her, and it wouldn’t just be Addie but all of the grands who love Papa so much.

But anyway, I’m turning this post into something maudlin, which isn’t my intention. In fact, what I want to say is that we went to Bill’s doctor who specializes in movement disorders for his semiannual checkup, and he got big fat zeros. AND THAT’S A GOOD THING! Symptoms are measured on a scale of 0 to 5, with 5 being the worse. Did I mention he got all zeros?

As always, he appeared to take it all in stride (though after 23 years of marriage, I can tell he was very happy). For my part, I started to cry. What else is new?

Here’s something funny. One of the tests the nurse practitioner that he sees does is have him close his eyes and put out his hands and then asks him to do a difficult task such as count from 100 backwards by sevens, or something similar. Bill removing dishwasherThis time she asked him to name the presidents backwards. I, of course, started trying to do it and failed miserably. I got to George W. Bush. He did better. She always assures us that she isn’t testing his memory, but wants him distracted so that she can see if he has a tremor. He didn’t.

And when we returned home, he returned to his project of taking out our dishwasher so that he can install the new one.

The man doesn’t quit.