Florence in Words
July 15, 2018
For whatever reason, my fingers are typing today as though there was no Parkinson in sight, and so I’m taking advantage of that to write a public blog instead of a private complaining journal. Yes, it’s midsummer and too hot even for a brief walk (with walker, of course), but I can still dream of the years when a brief hot walk would take me to the beach and the ocean in Amagansett. And without bitterness, for those days made these possible. I chose a New York apartment instead of the beach house when it became clear that I couldn’t afford both. And so I have, at least for today, some calm and only a faint feeling of regret for the loss of the little beach house and the ability to walk along the beach or dip into the ocean on its calm days.
What do I enjoy now? The comfort of my apartment, its bright views of the city, reading (often for Feminist Press still), visits and phone calls from friends, occasional taxi rides to eat out, and once the fall sets in, the opera series I still subscribe to, and the theatre tickets also on subscription. I am fortunate to have caring friends and especially a caring reconstructed family who call daily and visit as frequently as possible for them.
Yes, I know it makes for a bland blog—but I need to own to the absence of depression today. For whatever reason, perhaps because my fingers are typing at their usual speed and correctness, I feel somewhat like my real self. Even if it is to be short-lived, I am grateful to know that somewhere I can still feel as I once did thoughtlessly, taking life for granted.
An important postscript. As I reread what I had written, I realized that I had focused only on my own two inches of being, though I spend many hours a day reading the daily-delivered New York Times or watching MSNBC on the television, or the Los Angeles Times on my phone. And yes, in another time, I would also be out there in political action. But today, I am not going to let that regret control my day.
July 6, 2018
And of course they stopped in to see me almost every one of the seven days they were in town. And they spent some time many days going through the apartment counting turtles I have on bookshelves and in cabinets. They were given books—including four from Feminist Press. And each day they drew pictures and followed Taksi around, trying to walk quietly so he would not hide under the big bed. Yes, I enjoyed being finally taken for granted through all the partying in my apartment, and they enjoyed some of the visitors as well. My friends visited and cooked or we ordered in.
It has been very quiet here since they flew back to Kansas. And my daughter? She’s recovering and getting to all she abandoned in order to give me and the two little girls a rare gift.
June 6, 2018
Note: First written in May, but posted in June
Yes, barely out of the first week of May, we have some decent spring weather and the green has burst into view all at once and all bright. I’m trying to move into a schedule. I’m trying to be at least a tiny more upbeat. And yes, I’ve made one breakthrough: I went to see my dear doctor Helen Hecht who convinced me to see my former neurologist, Jonathan Charney, which I did that very afternoon, since Dr. Hecht called him and he said he’d work me into the crowd of people in his waiting room.
It was good to see him again. He feels more like a friend than a doctor. He always remembers to compliment me on my memoir which he claims to have read. And so he assessed me and of course noted that I could not walk, was using a wheel chair, and was feeling desperately depressed. He’s scheduled me for a test Saturday morning, and he’s starting me on another pill without changing the dopamine I have been given by the NYU neurologist I have been seeing, even as my ability to walk has worsened over these past weeks, even months.
So yes, I am going to begin to add to the dopamine the new drug, amantadine, that is supposed to help me walk. Yes, I feel skeptical, and I expect I sound skeptical. But you won’t blame me, will you? Dr. Charney says that when he sees me in two weeks, I will be walking, perhaps with my little walker, but certainly I will not be in a wheel chair. So I am trying to be hopeful, but not too hopeful.
Coincidentally, I find myself with two books about Parkinson’s, and so I have begun to do what I would normally do, but haven’t, for whatever reasons. And I must add here that, while I’ve taken only one of those new pills, my typing is much better than when I was last trying to write I was cheered by the combination of Helen Hecht herself and her insistence that I see Dr. Charney (who is her friend, too).
If you are bored with what has become a description (and not very consistently) of my illness, then I am sorry and will try to do better. I know only of a few people—old friends, usually not living in New York—who keep track of me mainly through checking the blog. Perhaps they will tell me to quit right now.
I want to add that I did more yesterday than I have for weeks and weeks. The brain test had me at Dr. Charney’s office by ten a.m. on Saturday morning. Helene met me there, since we had afternoon tickets to an Encores performance of “Me and My Gal,” an old musical performed in a characteristically intense manner and with a talkback feature about the history of musical theatre I have come to enjoy.
At six we were in a taxi heading home, the longest day I’ve spent out of the house in many months. And with it all, I used my walker, no wheelchair.
August 30, 2017
I was aware of his interest in the sink, and hoped he wouldn’t try to get into it, since I thought it would end with my having to get him to a doctor to reset a few bones. It’s not only high off the floor. It has nothing to rest on: it’s a bowl with the thinnest of edges. And why, I thought to myself, would he want to get up there in the first place? I was, of course, not thinking with the mind of Mr. Taksi, who seems to walk around my sizable apartment, with his head angled upward, as though wondering what he might try next.
I know he can leap easily up onto the kitchen counter in a single, elegant movement. He can stand on his two legs at the sink and knock something out of my hands—that’s how tall he is stretched out. But why would he want to get up to this bathroom sink, when he doesn’t want to be in water, and when he would then have the trouble of getting out of it again? Well, it’s clear now that I don’t have the mind of a cat, especially this one. So you can see it in photos. His contentment seems to be saying he’s happy to have that problem solved. On to other things, though he does try that leap at least once a day, usually when I am using that bathroom.
As for my bathroom, nothing deters him there, since the sink is built into a cabinet and there are areas seemingly waiting for him. My electric toothbrush is merely music to his ears—he’s not going to be sent off by such piffle, and he simply waits until I’m through to continue his investigations of everything on and around this room. His favorite space is the walk-in shower, and I imagine he thinks he’s being helpful when he pulls off another loose tile from the shower floor, since he makes sure I see his prize, and of course I do thank him for his courtesy.
June 10, 2017
The ring finger of my right hand twitches uncontrollably when I hold my hand palm upwards. Not so the ring finger of my left hand. But sometimes they change places. I have no other twitches.
Still, there are other dimensions to a diagnosis of Parkinson’s disease. Instead of shaking, legs and arms may grow rigid, unable to move easily, if at all. That seems to be my case. And it’s been most apparent getting into and out of automobiles. At the worst, before I began the new medication, someone had to actually lift my legs out of the auto, and if the driver was in a hurry, he had to move my legs in the first place. Now, after almost two months on the Parkinson’s medication, and I’m still on a relatively low dose, I can move my legs myself.
Also there are other, more intimate changes, some having to do with matters of dressing. It’s easier now to get my socks on and my trousers as well as my underwear, and I don’t take so long, nor does the effort now bring me close to the point of tears. And I’m not as worried about falling in the stall shower as I have been. On the other hand, I continue to need naps and lots more sleep than ever before. And I still have nights when I can’t sleep at all, even if my naps were only 20-minute breathers.
So here’s what I have to do. I have to take three pills a day with meals, which means I have to return to the habit I broke several years ago. So breakfast is still the same solid meal of oatmeal and bran muffins and coffee and fruit, varied once a week or so by eggs or lox and bagels. And dinner is still meat or fish and two vegetables, with or without a salad. (Sometimes dinner is a huge salad and soup.) But lunch is the problem and so I’ve taken to yogurt and/or soup—just a bare minimum.
I’m still not able to walk more than a few blocks at a time, and I’ve not gone back to rehab yet. The longing for sleep is something that worries me. And of course the neurologist’s response is “do something,” “keep busy,” remarks that I might have made to a friend with a similar complaint. But I have plenty to do, meetings to attend and books to read. Often, I’d rather take a nap. In addition, I have friends who want to go to the movies with me. Why do I resist such entreaties? I still long for a swimming pool and have done nothing about that either. And yes, I will probably regret having written this out for others to see… it’s embarrassing, and I yawn again and again even as I go on typing….