To the tune of the Hokey Pokey or the ditty of your choice

You slide your right foot out

And you start to spin around

Before you know it,

Your butt has hit the ground

Aaaargh you scream

Parky! out of my space

I can walk just fine without you

So find another place!

Exiting the subway and walking the remaining distance home after a doctor’s appointment, on the phone with a friend along the way, I suddenly and inexplicably found myself on all fours, a hole in my leggings, my hands and knees scraped. They hurt a normal amount, so I figured I’d stand up and continue my merry way home, about a five minute stroll.

I thought that for about ten seconds, until I actually attempted to rise from the pavement. Oweee oweee oweee!!!!!!!!!!

This was no pedestrian equivalent to a fender-bender. This car was totaled.

How had this happened? I searched in vain for an object I might have tripped over but there was nothing in sight except the cruel, hard pavement upon which I was now sprawled. “Lift your feet,” a friend at work was constantly admonishing me pre- Parkinson’s diagnosis. Eventually I practically relearned how to walk at the age of 70 but old habits die hard. I believe I stepped forward toe-first and my rubber-soled shoe got stuck on the unforgiving sidewalk while the rest of me continued to move forward, and that’s how I fell.

“Give me a break” I’ve been known to reply to some comment or other. Unfortunately, the universe must have been listening because now I was indeed given that break, though not the kind I’d had in mind.

I managed to hobble home, teeny tiny steps all I could handle, convinced I’d fractured my hip. I’d heard it said of the elderly, “Once they fall, it’s all over.” It struck me with the force of a category three storm: It’s official! I am a genuine “little old lady.” This is now my identity.

Where was the stylish, fit, older Frenchwoman I’d vowed to emulate after my two- week sojourn in France? Would she spend much of her time in, not a chic “costume” but rather a hospital gown, resulting from spill after spill after spill?

I packed myself in ice for several hours as if I were a freshly-caught mackerel before heading to the ER, where the orthopedist, grinning as if he were about to inform me that I’d won the lottery, which I sort of had, said “ Good news! You don’t need surgery!” Yippee! I guess. Because my hip was indeed fractured. It’s rest, physical therapy, brief strolls with my walker, and that old well-known healer, time.

The most pleasant moment of my days now? After my equivalent to hiking the Appalachian Trail (from bed to kitchen to bathroom, walker in tow), I sink into my mattress and achieve nirvana. That’s obviously an overstatement but since my hip kills when I put weight on it, the absence of pain feels as delicious as a hot stone massage.

I recalled a real shift in first my father’s and then my mothers’s walking style in the wake of a fall. They became hesitant and slow, as if fearful that every step brought them that much closer to life in a wheelchair. The paradox: I always believed their hesitancy actually precipitated their becoming less robust. It seemed to weaken them.

I was surprised and pleased when, not long after I started the blog, others with Parkinson’s reached out to thank me, and to tell me that they found my sharing my experiences helpful. And just recently, a friend told me about a friend of hers who got cancer, and who felt she was carrying that burden for others in the community. Am I, with my growing burden (a broken hip on top of Parkinson’s?? Really??) meant to carry these burdens for others, somehow lessening theirs? Are others’ stories being filtered through me? Is that my purpose now? And if so, WTF!

True story: My 87-year-old mother never used a walker, and she got around just fine, if a little slowly. But almost the moment my father died, out came the walker. It seemed pretty clear that she didn’t need it, at least not physically. Emotionally’s probably another story. I’m guessing it gave her a sense of security, and I’m now regretful that I felt judgmental about what may have been necessary in a different way.

I can’t answer any of these questions, of course, but I’ll continue to ponder them, and that makes life interesting. With the discomfort of Parkinson’s and that of the hip, it also makes life a pain in the ass.

To the tune of the Hokey Pokey or the ditty of your choice

You slide your right foot out

And you start to spin around

Before you know it,

Your butt has hit the ground

Aaaargh you scream

Parky! out of my space

I can walk just fine without you

So find another place!

Exiting the subway and walking the remaining distance home after a doctor’s appointment, on the phone with a friend along the way, I suddenly and inexplicably found myself on all fours, a hole in my leggings, my hands and knees scraped. They hurt a normal amount, so I figured I’d stand up and continue my merry way home, about a five minute stroll.

I thought that for about ten seconds, until I actually attempted to rise from the pavement. Oweee oweee oweee!!!!!!!!!!

This was no pedestrian equivalent to a fender-bender. This car was totaled.

How had this happened? I searched in vain for an object I might have tripped over but there was nothing in sight except the cruel, hard pavement upon which I was now sprawled. “Lift your feet,” a friend at work was constantly admonishing me pre- Parkinson’s diagnosis. Eventually I practically relearned how to walk at the age of 70 but old habits die hard. I believe I stepped forward toe-first and my rubber-soled shoe got stuck on the unforgiving sidewalk while the rest of me continued to move forward, and that’s how I fell.

“Give me a break” I’ve been known to reply to some comment or other. Unfortunately, the universe must have been listening because now I was indeed given that break, though not the kind I’d had in mind.

I managed to hobble home, teeny tiny steps all I could handle, convinced I’d fractured my hip. I’d heard it said of the elderly, “Once they fall, it’s all over.” It struck me with the force of a category three storm: It’s official! I am a genuine “little old lady.” This is now my identity.

Where was the stylish, fit, older Frenchwoman I’d vowed to emulate after my two- week sojourn in France? Would she spend much of her time in, not a chic “costume” but rather a hospital gown, resulting from spill after spill after spill?

I packed myself in ice for several hours as if I were a freshly-caught mackerel before heading to the ER, where the orthopedist, grinning as if he were about to inform me that I’d won the lottery, which I sort of had, said “ Good news! You don’t need surgery!” Yippee! I guess. Because my hip was indeed fractured. It’s rest, physical therapy, brief strolls with my walker, and that old well-known healer, time.

The most pleasant moment of my days now? After my equivalent to hiking the Appalachian Trail (from bed to kitchen to bathroom, walker in tow), I sink into my mattress and achieve nirvana. That’s obviously an overstatement but since my hip kills when I put weight on it, the absence of pain feels as delicious as a hot stone massage.

I recalled a real shift in first my father’s and then my mothers’s walking style in the wake of a fall. They became hesitant and slow, as if fearful that every step brought them that much closer to life in a wheelchair. The paradox: I always believed their hesitancy actually precipitated their becoming less robust. It seemed to weaken them.

I was surprised and pleased when, not long after I started the blog, others with Parkinson’s reached out to thank me, and to tell me that they found my sharing my experiences helpful. And just recently, a friend told me about a friend of hers who got cancer, and who felt she was carrying that burden for others in the community. Am I, with my growing burden (a broken hip on top of Parkinson’s?? Really??) meant to carry these burdens for others, somehow lessening theirs? Are others’ stories being filtered through me? Is that my purpose now? And if so, WTF!

True story: My 87-year-old mother never used a walker, and she got around just fine, if a little slowly. But almost the moment my father died, out came the walker. It seemed pretty clear that she didn’t need it, at least not physically. Emotionally’s probably another story. I’m guessing it gave her a sense of security, and I’m now regretful that I felt judgmental about what may have been necessary in a different way.

I can’t answer any of these questions, of course, but I’ll continue to ponder them, and that makes life interesting. With the discomfort of Parkinson’s and that of the hip, it also makes life a pain in the ass.

“What in the world are you talking about?” is, from my cozy Massachusetts redoubt, what I hear all of you calling to me. Well, it’s not that cozy, as Marie Kondo will tell us, but I am holed up here due to a busted hip on top of the discomfort precipitated by Parkinson’s. Even if my hip were still a whole bone, as opposed to a bone with a hole in it, I wouldn’t be venturing outdoors onto this frozen tundra of a cityscape. Nah, today’s a day for hot chocolate, cold chocolate, room temperature chocolate, and maybe a wee bit o’ the hair of the dog. Ugh, don’t know the origin of that expression but it’s quite disgusting.

So…. back to my sister, Marie Kondo, who comes a-knockin’ in the wake of her previous day’s scrutiny of my digs, to which I barely attend in the best of times, tidiness-wise. These times ranked in the top ten of my worst times. Make that the top one. “Marie” (not her real name) is my sister (for real) who, in defiance of all research and the natural order of things, (as the eldest, I’m supposed to be the domineering one). is my otherwise terrific but occasionally bossy youngest sister. This is a person whose bedroom, wherever and with whomever she lived, served as some weird obstacle course, a game whose rules I never did manage to figure out. Jump over the sweaters, put feet in mismatched sneakers, prance around the pile of t-shirts and….declare victory when you reach the closet????

Like most people who get religion, my little sis has become a Kondo Kommando big time. Her current quarters pay homage to the OCD (I’m assuming) founder of The Container Store, and she WOULD. NOT. REST. until my home was similarly organized. I watched gratefully as she folded all my linens, discarded empty pill bottles, and generally imposed order on the Parkinson’s-and-broken-hip-generated chaos that is my home.

I must point out her overall wonderfulness. She stepped right up and, without being asked, appointed herself my Parkinson’s caregiver, driving me to all my neurology appointments, list of questions at the ready. She brings me homemade granola and other goodies. I’d be a basket case (more than I already am) without her.

And the Flovent? I suffer the occasional asthma attack, considerably less severe than when I was a child. I’d say I inhale Flovent maybe twice a month. Somehow, the inhaler landed on my monthly refill list and, true ditz that I am, i’ve never gotten around to cancelling it. I should have a budget category where I list all my unused prescriptions and subscriptions. Flovent and Britbox. What was the UK show that I absolutely had to watch and how long ago was the viewing of said program, followed by zero viewings of anything else on that English channel? Maybe three years ? I refuse to do the depressing math that evidences how much money I wasted. Add in, say, 24 months of the Sundance Channel and a couple of Showtimes, and holy shit, there’s a night in a nice Paris hotel living inside my cable box paid for by unwatched HBO and don’t forget the co-pays for all the Flovents still in their boxes cluttering my medicine cabinet. Or formerly cluttering since “Marie’” tidied up.

In her effort to get me to clean up, she calls to mind Saturday mornings in our childhood home when our mother would stomp up the stairs calling “I’m coming to inspect,” which meant that all our clothes had to be neatly folded in their designated drawers, our games alphabetized in their cubbies (okay, I made that up, but the boxes did have to be closed with no errant Monopoly irons or hotels loose on the shelves), the beds tightly hospital-cornered in anticipation of Sylvia’s inspection. After we’d reorganized to Mom’s satisfaction, she returned downstairs to ensure that her own Saturday task – dusting her living room jungle – met her exacting standards. *Some of this post is exaggerated, but I assure you that Saturday morning inspection was not. If you don’t believe me, ask my sister “Marie Kondo.”

Recommendation:

The Life-Changing Magic of Tidying Up. Actually, I can’t recommend this wholeheartedly since I have never even touched this tome. It’s here more for reference, for those of you who haven’t succumbed to, or even heard of, Marie Kondo’s The Life-Changing Magic of Tidying Up. No more need be said; the title says it all.

I recently chatted for the first time in a while with a friend, Marnie, who moved to Europe many years ago. Her husband was recently diagnosed with Parkinson’s. In my effort to get my story out there (with jokes), I realized I’ve overlooked a big piece of the Parkinson’s picture: the caregivers.

These valiant souls give their all to their loved ones, and it is a Really. Hard. Job.  No one applies for it.  No one expects it.  You don’t get paid in either money or even thanks. But you do the job because you love someone.  Or maybe you don’t but you feel obligated in some way.  Now THAT must be really hard.

I thought Marnie might have some insights, so I asked if she might allow me to share some of her story. So here goes, from my transatlantic conversation with Marnie.

Marnie:  Bill was diagnosed with Parkinson’s in early 2021, during the first COVID lockdown. I knew already that he had it. He had a tremor, plus quite a few other tell-tale symptoms. But it was still hard to hear it confirmed. The diagnostic consultation is NOT the moment for the partner to say “I told you so!”, but I was tempted!

Andi:  Now that you and Bill have a sort of routine, how do you refresh yourself?   What keeps you going?

Personally, I find other partner stories massively helpful. I have a friend who nursed her husband through eight years of dementia, which is different of course, but she really understands what it’s like gradually to change roles from partner to carer. Also, she’s a nurse. I’ve found nurses, and people like physiotherapists with hands-on experience with people with Parkinson’s, to be exceptionally empathic and respectful, with lots of practical advice. Other than that, all the usual good advice applies. Take breaks, get exercise, nurture your own interests and friendships too. I fight every day for my independence and sense of accomplishment, but to be honest, as the more domestically supportive partner, I was doing that anyway.

Andi: Do you feel other people treat you differently, knowing what you’re going through?

Marnie: I do. Mostly people are very kind, but one of my closest friends is a lovely woman who still doesn’t quite get it — and worse, she doesn’t know that she doesn’t get it. I feel I have to remind her that there are limits to what I can do, or that I have to plan differently now for the future. Also, some people tell me horror stories that I really don’t need to hear. I’m very well informed, but I want to stay optimistic and focused on the present. I’m working on just letting misunderstandings pass. 

I would say the best that friends can offer is simple empathy and warm companionship. We are all much more than our illnesses, after all, and we need to have fun. At the same time, saying things like “He looks fine to me” — or talking about unproven herbal cures they read about “somewhere on the Internet” – can be surprisingly hurtful, because it minimises the seriousness of these illnesses. Maybe it’s a way for people to protect themselves against discomfort or fear.

Andi:  What’s the hardest part of caregiving for you?

Marnie:  The impact on our daily relationship. I have to do more, and be watchful, and things keep changing. And the future is so uncertain. I’m practical and resourceful, so daily stuff gets done. Emotionally it’s tougher, and I have a very elderly parent to look out for as well. Accepting uncertainty just isn’t my strong point.

Andi: Is there even a sliver of a silver lining in all this?

Always! Bill’s less driven, his sense of humour is intact, and we love hanging out with our beloved dog and going for slower paced walks. We have enough money, I hope, for care if we need it down the road. We live in a friendly place. It could be worse, too. Aside from the PD Bill is strong and healthy, and I’m pretty fit. Bill still works part time from home, and he gets a lot out of his work. I’m learning more about myself and other people, even if it’s not always comfortable.

Andi: Can you share something that led to you and Bill sharing a good laugh?  Maybe he said something ridiculous, or you had an experience that was so silly that you couldn’t help but giggle?

Marnie: Moments of laughing together are priceless, and luckily we see the ridiculous in the same things. We’re quite competitive with each other, and we tease each other. So we laugh a lot – but not about Parkinson’s. The day we do that will be a special day, because it will show how comfortable we’ve both become with it.

Andi: Thank you so much for sharing your story, Marnie, with so much candor and heart. You and Bill are fortunate to have each other. As are the many others who lovingly ( or maybe some days not so lovingly) do what they can to create a decent life for their person with Parkinson’s. Thank you all who are doing this work; I hope you feel appreciated.

Recommendation:

The Daily Respite

Every morning, Clara Parkes sends you a little nugget – it could be a poem, a video clip, an image – whatever strikes her fancy that day. I love starting my day with Clara (also knitter extraordinaire), who is thoughtful and seems quite wise. I feel a little calmer tonight knowing that tomorrow will be a little bit more serene thanks to Clara.