Friday Fortius

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Date Day

We had planned to go to the Labor Day Lift Off in the Springs on Saturday for the balloon glow, when they light the balloons up at dusk but don't fly. We went for this event last year, but that was back when Lizard was still having horrific hallucinations, and we weren't able to stay long enough to photograph the balloons reflecting in the lake as planned.

We checked the Colorado Springs weather forecast Saturday morning, and it wasn't looking promissing. We often joke about being the jinx at any balloon festival. We once went to Albuquerque for four days, hoping the balloons would go up at least one day, and high winds cancelled all four days, as well as a fifth, had we been able to stay. This often happens at any balloon festival we try to attend. We don't do it much anymore because road trips are so hard on Lizard, but the Springs are so close, comparatively, I do try to go for at least one event each year if he's feeling up to it. Thank heavens he loves balloons as much as I do. He often will sacrifice comfort to try to make it through just one launch or one glow. (Tomorrow's photos are from previous years; Lizard did not feel up to a road trip yesterday for the final day of the Lift Off.)

Lizard kept asking me if we could have caffeine, which he takes for tremors. Caffeine would make me tremor for hours, but for whatever reason, it has the opposite affect on people with Parkinson's. Some patients even have caffeine prescriptions. I tried to encourage Lizard to wait until evening for his high-octane caffeine beverage, which actually helps him sleep, and he kept asking if WE could have caffeine. After about 15 minutes of a conversation I felt was going nowhere, it dawned on me he was asking for Café Rio, one of his favorite restaurants. We haven't gone out to eat much at all since I retired, thanks to the expense but compounded by his anxiety and claustrophobia in the car. Since it looked like the balloon glow was going to be a bust, I thought it might be fun to treat him. Off we headed to Castle Rock, which once every month or two was our "date day" on Saturdays before I retired.

We ate half our chicken (his) and veggie (mine) bowls in the restaurant, which we rarely did back before retirement. We would take it home to eat, or eat in the car in the shade if the weather wasn't too hot. This beautiful Saturday afternoon, eating in the restaurant was very peaceful. We arrived just before 4, and the restaurant wasn't packed like usual. There were only two other diners. We didn't sit under the air conditioner, which really bothered Lizard the last time we ate in, and the music wasn't too loud this time.

The day was sort of like date night. The whole day, actually. Lizard was considerate of me. That was missing this time last week. (He had shut me out of the bedroom because he thought I was a hallucination. He wanted his best friend back as much as I long for mine.) He doesn't often realize I have feelings anymore, and in my burst of grief (after I finally got him to sleep), I cried myself to sleep, then felt guilty the next morning for being so selfish. Saturday was a complete turnaround. I know moments like these are extremely fleeting, but Saturday was so special, and I so needed it. I had prayed to see a glimpse of my best friend again, and that's exactly what I got. I want to shout from the rooftops that Lizard was back for a day.

After we got home, I laid on the love seat because my back was so sore. Lizard tried to cover me with my fleece. He did think the homeless people he thinks are living in our house rent-free had peed on it, so he wanted to wash it first. Then he asked it if was mine because he thought someone else was using it, but he wanted to make me comfortable. That was such an awesome moment. Gigantic. This is the guy I married, and he came back to me for a few minutes. It was precious. Thank you, God, for giving me back my sweetheart for a few precious hours!

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Back in the Virtual Saddle

The Triple Bypass was a few weeks ago. The Leadville 100 was the weekend before last. Lizard has enjoyed watching some of the videos riders have posted, as well as live feeds when he can get them. When you give a YouTube video a thumb's up, YouTube throws more videos at you it assumes you want.

We continually block old LA videos without watching them. But we've been seriously and addictively enjoying Coors Classics videos from the 80s. Lizard says he was interested each time the pro cycling race made a stop in his hometown of Grand Junction, but he didn't really follow any races back then other than the Tour de France, which wasn't easily available in any streaming form back then.

I'd heard of Greg LeMond as a teen; he was my brothers' hero. The champion US cyclist was developing quite the following even in southern New Mexico, where I lived (and cycled) back then. I didn't know back then there were bike races other than the Tour, though. Watching those old videos now, both Lizard and I experienced a pang of guilt for the feelings LA provoked in us toward LeMond through LA's attempt to deflect accusations and fraud. Before that, both of us admired LeMond. I even sought one of his bikes for more than a year after my first Ride the Rockies because I got to test ride one, and I LOVED it.

I never did find my Tourmalet, and we never got to meet LeMond, but it sure is fun watching him battle Bernard Hinault in the Coors Classic.

I didn't know about Davis Phinney until Lizard and I met him and his wife Connie Carpenter at Ride the Rockies. The retired pro and Olympic cyclist and his Olympic cyclist (and speed skater!!!) wife weren't riding by then. (But their son Tayler was!) Davis was our first introduction to Parkinson's. We had no idea back then the role Parkison's or Davis would take in our lives a decade later. Words cannot explain how it felt to watch a much younger Davis in those old videos pump his fists into the air as he crossed finish lines. Joy for what he felt then; grief for what he experiences now; sadness for what I've watched Lizard lose over the past eight years. And yet, seeing him whole and experiencing tremendous joy.

Ron Kiefel was a speaker at Ride the Rockies, too. The retired pro and Olympic Cyclist also sold me my first non-department store bike after my first Ride the Rockies (and after I couldn't find a LeMond Tourmalet anywhere). He also would present cycling workshops to help wannabes like me prepare for Ride the Rockies. I learned SO much from him that helped me power through seven Ride the Rockies. I enjoyed watching him win stages in the old Coors Classic videos.

News of women's cycling rarely ever makes headlines. Back in the 80s, the Coors Classic included a women's race, and the old films include highlights. (Connie Carpenter won it three times!) Lizard had ridden up Pikes Peak in the company of Jeannie Longo, whom I hadn't heard of when we cycled up the 14er in the short-lived organized ride. Watching Jeannie Longo win back-to-back Coors Classics really helped me appreciate Lizard being able to keep her pace riding up a long, stiff climb decades later.

The old videos make me wish we could step back in time to our cycling days, when Lizard and I would ride Colorado Monument (known as Tour of the Moon during the Coors Classic) together and watch the USA Pro Cycling Challenge, Colorado Trail Race or Leadville 100 in person. When we could climb 14ers in July and then get a hotel room so we could watch the Tour de France (because we didn't have a TV (by choice) at home back then). Oh, and enjoy big, fat customized smothered burritos at the Blue Iguana, which is gone now. When we would ride Vail Pass over the pro cyclist names still visible on the pavement. When I would photograph Lizard participating all along the Triple Bypass or the Double Triple route, his favorite rides.

Even a ride up Waterton Canyon now would be such a thrill! I haven't given up hope. I've got Lizard back in PT with the goal of trying to get him back on his bike. Our glory days may not be the same as two decades ago, but just like the Coors Classic, good rides never lose their magic. Even if they can only be watched instead of pedaled.

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Snowflake Nightmares

my first AI video!

Bet you never expected me to write anything like the title of this post, huh? Fear not. I have not tired of snowflakes. Don't think I ever will. But I am really growing tired of AI renditions of snowflakes.

I sometimes create AI snowflakes, such as smiling or animal crocheted snowflakes, as inspiration for upcoming patterns. MidJourney gives some acceptable results. Sometimes.

NightCafe often breaks my heart. Sometimes it feels like a waste of precious time. They recently came up with a new way to try to keep people like me (who can't consistently achieve desired results) coming back. Users earn points daily to "pay" for their creations without having to cough up coin. I've been doing that all along. I've never paid. (So why in the heck do they even care if I come back???) Now they have a new daily challenge. I earn bonus credits for doing a new image each consecutive day. I had quit using it altogether because it just wasn't helpful in generating art to illustrate my blog posts, now that I can't get out and set up actual photos for everything I write about. I thought the new challenge might be a great way to document just how poorly NightCafe performs for what I need. And boy, was I right! My daily prompt is "smiling crocheted snowflake".

Thankfully, I can set the phone down after each attempt while I wait for the program to render. I keep trying because I'm earned more than 2,000 credits now and because every once in a while, I get something I might be able to use as real crochet inspiration. I keep hoping!

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30-Plus

One year ago, one of my snarky co-workers greeted me with, "You celebrate 30 years and then announce you're retiring the next day? Aren't you special?" She wasn't in the loop. (I'd given more than two months' notice, plus, I stayed on an extra four weeks at my bosses' request. We just didn't publicly share the scoop because this wasn't an easy change for me.)

This woman wasn't a close friend. Most co-workers called her Barracuda because she was always chewing out someone. Our long-distance work relationship probably was a bit of a thorn in both our sides. She was always stressed out by missed deadlines, and I was continually stressed out by missed deadlines outside of my control. She had no clue what had been going on in the Snowcatcher household the previous six months. She only knew my monthly paperwork was repeatedly late, and she probably thought I didn't care. She apologized when I spilled discreet, watered-down details, but that was the last time we spoke, and that's okay with me. I'm trying to focus on the positive now, and I am so grateful that stress is gone.

The rest was much harder to walk away from. You can't work in the same place for 30 years without developing a lot of close friendships and hard-to-break routines. And then there was that whole paycheck thing. The overwhelming fear of trying to run a household on my own with stunted social security because I had to retire early. I honestly didn't know if I could do it. The progression of Parkinson's literally had me shaking in my shoes and sleepless in the suburbs.

One year ago today, I said goodbye to my bosses, my co-workers, my brand new office, my paycheck, my weekly commute, my way of life, my ticket to weekend warrior adventures, my health insurance, my life insurance, and, by golly, those blasted monthly deadlines.

I've wanted to share at least part of the story since about Thanksgiving, which was the one-year anniversary of the train of our lives jumping track. I felt as if the train kept raging forward through the roughest terrain I could imagine, with no tracks, no refueling points and no map. It's taken me ten months to grow into this new chapter and construct a whole new recipe for contentment.

I started a new book about a week after the life change anniversary. I'd successfully completed (virtual) PTSD counseling, and I thought writing about what happened (here on my blog) and why life took such an unplanned detour would further help me heal. Plus, I love to write. Or at least I used to. I got to keep my standing desk when I retired; it was mine, not office property. So I don't sit down to type. Sometimes I think perhaps that's part of my problem when it comes to finishing electronic things. It's difficult to slow down when you don't sit down. Ha ha.

Yes, I can laugh again. And it feels good. Life is not at all what we planned, but we're adjusting and surviving. We're going to get through this. We're not going to give up.

Seven months ago, though, I still wasn't ready to "talk" about the whole Parkinson's nightmare. I mean, I did, with my counselor, my bishop, my ministering sisters, my two favorite neighbors, two of my favorite penpals, my mother-in-law, and eventually even my mom. (My dad had years earlier requested all of us kids stop telling Mom any of our problems because the worry was "killing" her.) There was still too much pain for me to begin telling "the world" about what happened. Too much loss. Too much grief. Too many wounds still too raw.

And let's face it. Parkinson's does not play nicely. Things are so much better now, but Parkinson's can be unforgivingly unpredictable. It's difficult to plan anything. It's getting easier to roll with the changes now. But Parkinson's assumed the Barracuda job vacancy in my life. Our lives. I continually remind myself there's someone in this wicked game in worse situation than me. My sweet Lizard is the one who's really suffering.

That book I started back in November has 20 pages so far. Wow, it seems like I've written so much more than that. But I just checked, and that's all she wrote. The bulk of what I write must be in my journal...

I used to tell my bosses we'd have four or five bad days, then two or three good days. Now it can be four or five bad weeks, then maybe two or three good hours. Or we might get a solid week of heaven, followed by a night that seems to have taken its cue from some of the drama or horror movies Lizard used to enjoy.

This probably is sounding a lot more like an endless maze than a clarifying explanation. But I guess that's why the book isn't going anywhere just yet. Interruptions often come every few words of typing, and it's easy to get lost in memories as well as live action.

To keep from blabbering on and on, I guess I should type what I intended to write when I turned on the computer.

In November of 2023, Parkinson's took a turn for the worse, and relentless rapid decline forced me to give notice at work in April of 2024. I wanted to make it to my 30th anniversary in June if I couldn't make it until my 65th birthday. Things got so bad so fast, I wasn't sure we could last two weeks, much less two months or... until my next birthday. All the prayers on our behalf carried us through June and an extra four weeks of employment so I could train my replacements. Yes, replacements. It took more than one person to replace me.

During my job death march, I kept thinking perhaps Lizard's neurologist would be able to prescribe something to help Lizard feel better. We communicated regularly on the patient portal, but a new medication wasn't prescribed until I was able to full time monitor (and document) any changes. Ultimately, I decided I would rather spend what pleasant time I have left with Lizard with Lizard, not distracted by work. Or, unable to meet his needs when he needs as opposed to, "Just a minute, Sweetheart; I'll help you as soon as I finish this project."

After I retired, Lizard began a new medication made specifically for Parkinson's patients experiencing hallucinations. The specialists warned me we likely wouldn't experience any relief for six to eight weeks. Two weeks into the new med, hallucinations ceased, and for about six weeks, I had my Lizard back.

Parkinson's cruelly began inching its way back into the picture, and hallucinations (and delusions) are once again an everyday thing around here. It's still better than it was a year ago. By far. Last year, he was afraid to be in our house because he thought we had 30 squatters crowding us out, and they weren't friendly. Now, he thinks there's a girl sitting in the bookcase watching me crochet, and he often thinks I have a dog with me. We have no dog. With Parkinson's, every day is a new adventure. Yesterday's hallucination was bananas all over the floor. (There are no bananas on our hardwood floor.) Today's was origami all over the floor. (There is no origami in our house.)

An adult suffering from late-stage Parkinson's can sometimes seem like a two-year-old foster child, exploring how many new different surprises they can hurl at you without warning. Yes, I am extremely experienced in that kind of life. Just when you think you've seen it all, boy, Parkinson's is trying to get someone to hold its root beer again. It doesn't stop. It's that derailed train jumping the track again and laughing the whole way.

A year ago, the plan was to obtain certification to become my own home health nursing assistant. I could get paid to be a caregiver and trade my hours for in-home care so I could finally get some sleep. By the time I retired, I could no longer commit to the two full in-person days of coursework (I would have been able to complete the majority of my classes online, or at least I thought I could), much less the two weeks of shadowing a nursing assistant. I could no longer leave Lizard alone for any amount of time.

A year ago, I feared I would have to sell our house and move us into assisted living because I couldn't get by on no sleep anymore. I had no idea how I would pay for care. Buying my own health insurance until I turned 65 added to the financial trauma. I couldn't find home health willing to help, and I couldn't afford it anyway. It got to the point I was afraid to go into the restroom alone for a few minutes. I couldn't shower for about six weeks. I heard rumors some assisted living facilities refuse to accept Parkinson's patients with hallucinations.

To top off everything, Lizard had zero quality of life, and there was nothing I could do about it.

Nothing except hang on and pray.

The absence of a work schedule enabled me to sleep when Lizard slept. He typically will fall asleep at about 6 a.m. each morning, and we both can get about three hours of really good rest at about that same time almost every day. The new med is helping with sleep, and sleep helps prevent blood-curdling hallucinations. We're both getting about five to six hours of sleep each day now. It's not always on Mountain Time, but, heck, it's always 10 p.m. somewhere, right? We sleep when we can, and that's good enough for now.

Church helped. Prayer helped. Neighbors helped more than I can ever repay. Counseling helped. Sleep helped.

I try to lead Lizard every day in speech therapy, physical therapy, occupational therapy and daily exercise. He's more cooperative now because sleep has helped so much.

I've had to let go of my Antarctic, Hawaiian and Wave dreams. We've both had to let go of bicycle tours and fund-raising. We've become a little bit shut-in because crowds and anxiety amplify Parkinson's.

I'm continually trying to come up with new goals and dreams. I try to set realistic and achievable goals now so Lizard can experience success. Sometimes the best we can do is a walk around the block. But sometimes we can squeeze in a little hike or bicycle ride. He calls me his drill sergeant, and sometimes, that's exactly what it feels like. Laughter really is the best medicine, so we try to overdose every chance we get. It doesn't happen often, but it does happen.

A year ago, I wasn't sure either of us would survive the hallucinations. Now, the most painful time is when I'm sitting with him in the evenings, when he's sundowning (yes, I learned a new word!), and he asks me to find his wife for him.

I've been able to keep up with snowflakes most of the past year, I think, and I'm hoping to sew again one day. I'm hoping digital designing and quilting will find a way back into the schedule at some point. For now, I hear my garden calling, and I don't have to wait until I get off work. Sometimes, Lizard can even help.

It's not the life we planned, and it's certainly not the life we would have chosen. But we are both survivors, and we are going to get through this. With grace. With dignity. With love. Lots and lots of love.

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