There comes a time when you have to face the inevitable. It’s not always grand and it’s not always glorious. I have found the need in the past, oh, six months, to occasionally need a walker to be able to get places. Sometimes the walker is useful for lifting my lower back from my hips — the reduction in weight significantly relieves the lower back pain. The walker is also useful for keeping me steady. With a walker, I can walk a mile or more. Sometimes without the walker I can’t walk 500 yards.
This is doctor appointment week–Neurologist yesterday and family doctor today–and they both said that I’m at the point where I need to keep a walker by my side at all times. Walkers seem expensive when you start looking at prices you can find deals. Walkers are things that seem to free up every so often. I found one at a Good Will; my physical therapist gave me one that another of her patients couldn’t use; and a couple from church gave us a tall walker that I can rest my forearms on without slouching. He even added blocks to the armrest to make them high enough to be comfortable for me (I’m 6’2″ and the walker is rated for up to 6′).
So I keep the tall walker in the car for when we go places; and other three walkers are on each of our floors at home (downstairs, upstairs, and attic). So that works.
It’s going to take a while to get used to it. I have questions. Like, how am I supposed to carry a cup of coffee and negotiate pushing the stroller. I’m worried a little that the high walker is a bit top-heavy, and I notice it when the handicapped curb ramp isn’t quite smooth at the junction of sidewalks.
I also have to figure out where to put it when I go to meetings like at church or with the Writer’s Club I’m in — and I’ll have to find a place to store it while doing yoga and tai chi (and painting classes and line dancing and (in a few weeks) ballroom dancing. (BTW, the Apex Senior Center is great great great.) Just sayin’.
We’re going to a family wedding next month — my sister’s daughter — and I don’t think I walk anybody down the aisle or anything like that, but I guess I bring the walker with and then put it to the side — or maybe I stay at the side with it. My grandkids don’t quite know what to think about all this.
But they know that I’ve had two falls that have taken me to ER. That’s two falls too many, and they don’t want to see any more. I don’t either.
Having the walker in the kitchen while I was cooking was kind of a pain. I’ll get that figured out. I have to think of it is a dancing partner instead of a roadblock or hindrance.
Good news …. the neurologist did say it could be years before I’m wheelchair bound. I’ll take that.
… in Dogpatch, USA, where typical folks do typical things in a typical way.” — from Lil’ Abner, the musical, or an approximation thereof … West Monona (Iowa) high school, freshman year (’75).
Actually, I’m not in Dogpatch, and it’s anything but a typical day. Oh yeah, sure, some things were typical. I make a batch of kombucha every ten days or so (actually, today was the eighth day since the last batch, but I went ahead and did it because I had the time) and it turned out quite well. I also make my own granola (rolled (gluten free) oats, avocado oil, honey, sorghum molasses, and water, and then whatever nuts and seeds we have in the pantry (pecans, walnuts, pumpkin seeds, chia seeds, almonds, cashews, etc., and it goes through several rounds of “bake and stir.”
I’m slow at doing this stuff. I started around 10am and, with things in the middle like my grandsons stopping by (well, their mom drove them here) for lunch and playing with them a bit (they love the game Marbleworks (making / connecting tubes for marbles to flow downward and round and round, and jumping and spinning down a vortex and stuff like that)).
But I tary.
Oh, while I was cooking, eating, and playing, I managed to play (on stereo — CD) Beethoven’s Ninth and a compilation of Dave Brubeck jazz tunes. Brubeck is great, Beethoven is greater. I played Led Zeppelin (IV) this morning while I was waiting for the medicine vials for my clinical trial to show up. I had the volume up because Michelle was out on a walk with a neighbor, but the volume wasn’t TOO up because I had to be able to hear the door bell when the delivery guy came with the meds.
I’m tired but chatty this afternoon. Call right now and I’ll talk your ear off.
Well then stay out of those places!
It’s amazing to me that something can be steady and consistent over the years, and then something changes in our checklist of abilities or behavior — even if we’ve seen it coming for a long time, like gradual changes in our ability to keep balance, our sense of physical space around us — and our world potentially falls apart. And I’m not using the word “falls” lightly.
On Nov 27, I posted an article about a serious fall I had achieved. 🙂 As a side note, that day is the birthday for Jimi Hendrix, Doug (former colleague at GE), and my great Aunt Ruth, the model for the annoying aunt in the Aunt Ruth Grammar stories.
Anyway, last Monday (April 1) at almost midnight, I had my second serious (Emergency Room) fall. I was ready to go to bed. My wife had been asleep for an hour or so, and I was still up, chatting with my son-in-law (my younger daughter’s husband). He’s the pastor at a church in Virginia just north of Lynchburg.
So anyway, I walked into the bedroom and it was dark. I could’t see a thing. I tried feeling my way across the room to my bed. When your eyes can’t focus on something, it’s easy to lose one’s balance. (Try standing on one foot, and then try doing it with your eyes closed. Is it more difficult for you to do it with your eyes closed? It is for me.)
Standing there in the dark (on both legs) , I lost balance and fell hard. I remember thinking, “Well, maybe the bed will break my fall; or maybe I’ll land on the mattress.”
As it turned out, my fall was broken by the corner bedpost, upon which my eye took the brunt of the hit. At contact, I saw an explosion of bright, white light and what looked like fireworks. (I found out later that bright light is common in concussions.) My PA daughter took one look and said, “We’ve got to get you to the hospital.”
The long and the short of it is that I was in the Lynchburg hospital until about 3am with my wife and son-in-law.The doctor said I was lucky. I could see fine. My eyeball itself sustained no damage. I had lots of bruising on the socket around the eye and several stitches to boot.
But Praise the Lord that it wasn’t worse than that!
That was the second serious fall in about 5 months. No more, please.
Four days prior, Mr. Aaron had tied Babe Ruth’s career homer record of 714. And now, here it was — April 8, 1974 — and the Braves were appearing on Monday Night Baseball with a game against the Dodgers. Pitching for the Dodgers was their #44, Al Downing. Aaron, coincidentally, was the Braves’ #44.
This moment — this culmination of many moments — was something for which I had been waiting several years. I was 13, almost 14 at the time, and my adolescent hormones had me by throat. I was moody, picky, and obnoxiously arrogant. Oh, and stubborn. At least that’s how I remember myself. Actually, I guess I haven’t changed much. I was teased at school, sometimes a lot, about my devotion to Hank Aaron. I had moved from Tennessee to Iowa in 1972, and I guess Tennessee was closer enough to Atlanta that there were fewer Aaron devotees in Iowa.
Anyway, as stated in an earlier post, I had waited ALL WINTER for Aaron to have another at-bat. I remember, oddly, standing on the boardwalk of the second story of my dad’s lumber yard’s “wood shed,” where was stored the stacks of standard-sized lumber (2x4s, 2x6s, and 2x8s, lengths at 8, 12, 14, and 16 feet; we kept 2x10s and 2x12s in another shed). The winter had been cold, damp, and miserable.
But, as these things tend to go, just as the weather turned from bad to delightful, similarly MLB was turning from OFF to ON. The season opened for the Braves on April 4, 1974 in Cincinnati. Hank Aaron tied Ruth on his first swing of the season. The Braves were scheduled to play two more games in Cincy before returning to Atlanta. The manager decided that Hank should take two days off so that Hank could hit his next home run — the record breaker — at home. The Commissioner of Baseball, Bowie Kuhn, decided that that decision was not a good one. The people of Cincy shouldn’t be denied the opportunity to see the historic home run; the Braves aren’t putting forth their best effort to win; blah blah blah yadda yadda yadda. Wow, the commissioner gravely overstepped his bounds on that one. So he ordered Hank to play both games. Eventually (this whole event occurred over only two days, and it was a huge deal made over nothing), the Braves and the commissioner came to an agreement, and Hank played Saturday but rested Sunday. Actually, I might have that backwards. If anyone cares to look it up, be my guest.
So in Atlanta, there was a hopeful tension in the air, the electricity of knowing you’re in the presence of something great about to happen, in the midst of history being made.
In his first at-bat that night, he walked. Downing didn’t give him any pitches that were hittable. His first pitch to Hank, on Hank’s next at bat, was too, hitting (or almost hitting) the dirt. Downing’s second pitch, though, was a slow fastball down the middle. Hank launched the ball, and it landed in the Atlanta bullpen. Actually, one of the Braves’ pitchers, Tom House, caught the ball on the fly. (That’s why the Braves were able to get the ball to Hank so quickly.)
I had been watching the game with my grandmother, Grandma Berry. She wanted to watch it because she knew it was important to me. I had set up my little Craig cassette player so I could record the audio from the television. We had no generally available direct track recording device (not sold at Sears or Radio Shack or department stores back in the day), so we did it via just the air. That is, we listened to the TV, and the TVs sound was picked up by the cassette player. So I told Grandma that she could watch the game with me, but she had to keep quiet. I was serious about that. And she complied.
I still have the two cassette tapes, but I don’t have a good cassette player any more. Actually, I do have an old Craig cassette player … it might be fun to take the tapes and try to listen. They’ll (the tapes) will probably shred.
Incidentally, I remember watching several other events with Grandma. We watched the Kentucky Derby together, the year when Secratariat won it in record time. We watched a Nebraska-Oklahoma game together. We watched the Nebraska-Army game that previous fall. And we sometimes would sneak away and watch Monty Python, which she loved.
My Hank Aaron scrap book got filled as I put in news from all the articles cou ld find. Teachers at school would give me articles they saw in Boys Life, Time Magazine, and others. It was a great moment.
I felt victorious. I felt that all my effort in being a faithful fan — I even wrote Hank and asked for his autograph, and he sent me an autographed pictute that one of my kids now possesses — had resulted in this glorious moment.
It was a great evening of baseball.
hopped off of the school bus — I had to take the bus because junior high (middle school) was in Blencoe, a town of two hundred people about 8 miles south of Onawa — and began the several-block walk home in the cool spring air blanketed with warm sunshine.
I could see, about three blocks in front of me, my brother was racing toward me at a rapid clip. He had a sheet of paper clenched tightly in his hand, and he was shouting something. I couldn’t hear him at first, but then the wind quieted down and Barry stopped in front of me, making an abrupt halt.
“He did it! He did it!” Barry exclaimed.
I knew exactly he was talking about, but I was surprised because usually it takes longer than the opening day of the baseball season for miracles to happen.
Hank Aaron, one of baseball’s most respected sluggers, on the first at-bat of the season — on his first SWING of the season — blasted a home run off of pitcher Jack Billingham of the Cincinnati Reds. Hank, of course, was a Brave.
That home run was the 714th of his career, thus tying him with Babe Ruth for the all-time HR record. He had ended the previous season locked in at 713 … and the whole winter took impossibly, unquestionably, aggravatingly way too long. I read magazine after magazine, book after book, all articles and chapters on Hank Aaron.
I believe he still has the record for total RBIs and maybe second on runs scored. Hank never hit more than 47 hrs in a season, and that being just twice (well, one at 47 and one at 45). But Hank was consistent at a high level. He hit more than twenty HRs a year for twenty straight years. He had a lifetime batting average of .305, leading the National League with a .355 average in 1959. Besides hitting, he was also fast — multiple seasons with at least 30 hrs and 30 stolen bases — and he was a good outfielder, getting several Golden Glove awards for his defensive work.
On top of all that, Hank was a nice guy. He was calm, reserved, and confident. Like Jackie Robinson, Hank had to stand up — and keep silent — when the crowd was hurling insults and threats in his direction, back in the late fifties (Hank started in the majors in 1954).
I went to a Braves game once (1972). Hank hit a homer in the bottom of the ninth. It wasn’t enough to beat the Cubs that day, but it was enough for me. I saw him hit a home run! What a thrill that was.
So back to April 4th, 1974. That was fifty years ago! Hank had tied the Babe.
Happy fiftieth anniversary on your 714th homer, Mr. Aaron.
When would be the next home run, the record-breaker?
I’ll give you the answer on April 8th, if not before. But that was a great day (well, evening) too.
Cheers, y’all
I’m always wary about declaring victory (being a Husker football fan, I’ve found that I can never that victory is certain until the end of the game!). But I think our clash with winter is over — here, but not around the country yet by any means.
Y’all out there in California had quite a week, especially near the Sierra Nevadas where ten feet (or more) of snow fell in a short amount of time.
Anchorage has had one of its snowiest winters ever. We were fortunate to be able to go up there in late February. No snow in the air, but lots on the ground, until our last two days, and then we got five inches on each of those two days. It was very, very pretty coming down. I like watching snow.
We don’t get enough snow in Carolina.
So I was again humbled in a game of chess with my granddaughter. I was trying a new approach and she wiped me out before I knew what was happening. It’s a delightful thing when that happens. I guess I kind of feel like I’m thinking that I’ve made the world a better place. That may be true or false. I do think this young generation is going to be a significant group of folks, something on the order of the Greatest Generation. Certainly not the Boomers.
” … the more it stays the same .” At least that’s how I remember the phrase. The rock group RATT used that phrase in a song from an album in around 1984. That was the year I graduated from UNL and found my way to Schenectady, NY, to work for GE and meet the woman who would go on to become my spouse, and for her I am extremely blessed.
In July, we will have been married thirty-seven years. I’m not going to stop here and give lots of praises. I’ll do that in a future book (already half-way written) so that way you’ll have to pay me money in order for you to find out any more stuff (okay, just kidding). I would love to tell you how my kids and grandkids are doing, but I’m not supposed to because of privacy issues. I don’t have any dogs, but I’d be happy to tell you about my neighbors’ dogs, provided I get their express written permission.
Or something like that. We are such a letigimous society. That’s not right for “Legitimous,” but my spell checker isn’t picking it up. I rarely use checkers but tried to on this one. Call it a Fail. OK, I looked it up. The spelling is LITIGIOUS.
With baseball season upon us (how was that for a segue) … but wait … we have conference basketball championships to play, and national championships to play … and my blessed Cornhuskers may be in the very thick of things. That’s NEVER happened to us in basketball. At the moment, we’re 21-9 and feeling better about things than any time in the past. So we’ll see how it goes. We may lose in Round One of either tournament. Who knows. We play hot and cold. When we’re hitting the 3s, we’re hot. When we’re not hitting the 3s, we’re not. I guess that makes sense. In football, where we lost bvy a field goal in several of the games, that makes a lot of sense. We hit the FG and we make the game. We miss the FG — or the opponent makes its FG — and we drop the game.
Blessings exist all around us. There are few joys greater than having your four – year – old grandson reach up to hold your hand when crossing an icy road because he’s worried about ME falling… Or when your just – turned – eight grand daughter asks me if I’d like to play chess with her. And she wins.
I relish my time as a grandpa.
Excerpt from Joel Schnoor’s new book, “Saving Arapahoe.”
According to the Michael J. Fox foundation, RBD (REM Sleep Behavior Disorder) can be an early warning sign of PD. RBD may include things like violent body movement, nightmares / disturbing dreams, and/or not even reaching the deep sleep level.
I’m in my 25th year since being diagnosed at the age of 38. I honestly don’t know, or don’t remember, whether I had any sleep problems before the diagnosis, but I do know that probably 90% of the time I’m not even aware that anything happened.
My wife has gotten pretty good at identifying early signals of an upcoming event and she quiets me before I do whatever it was I was going to do.
I have dived off the bed several times, chasing (or trying to escape from) an enemy. I have screamed many, many times, often to the frightening of any visitors in the house. I’ve gotten bruised and/or sliced up when diving onto nearby furniture.
I knocked down my floor-to-ceiling lamp one night when it must have occurred to me that it would make a perfect spear to throw across the room. My spouse wasn’t too pleased with that.
She also says I pummel her at times, something that makes neither of us proud.
Finally (this is the last bad story for now), about a year ago I had a week of hallucinations (in January of 2023). It’s apparently the case that the longer you have PD, the more critical it is that your body gets exactly the amount it needs.
I’ve been wearing a dopamine (well, carbodopa / levodopa) pump for about four years as part of a clinical trial for ABBVie-951. (that’s going very well and you can read about it in this blog journal). The pump has three flow settings for me; a flow rate of 0.53, a rate of 0.49, and a rate of 0.47. (sorry, I’m drawing a blank on the units …. it’s a measure of milliliters per some period of time). For the past four years, I’ve spent daytime at 0.53 and then cut down to 0.47 at night, since I won’t need quite as much dopamine at night when I’m inactive. My neuro suggested I try a slightly higher flow setting at night just to see if it helps with RBD (the hypothesis being that maybe I wasn’t getting enough dopamine at night). I bumped it up to 0.53 at night and that turned out to be too much. It was an awful week that ended up in one big hallucination.
I’ll write more about the hallucinations in a separate post. I’m hesitant to let my brain go back there to dwell on it. It was scary stuff. It still shocks me to think that something so bizarre, something that goes against totally what I think is true and real, can be thought of as logical and “well that’s just the way it is.”
Anyway, four years ago I spent a full week at a research lab in Raleigh where they determined the exact amount of dopamine my body needs (or could process). That number was 0.53. And today, that’s the number that still works for me. I don’t know if that means the number has stabilized or if it’s always been 0.53. I don’t know. But I”m happy I haven’t had to increase it yet. My understanding is that more carbo/levodopa (which converts to dopamine) can cause more dyskinesia (jerkiness, twitching, unusual body movements) and, apparently, possibly, things like hallucinations.
I was going to add something else … oh yes, sleep studies.
I’ve been two sleep studies in the past four years. In both studies, I was told that I got between one and one-and-one-half hours of actual sleep during the night and there was almost no deep sleep. Maybe that’s why I feel so tired so often. 🙂
Cheers, y’all