Month: August 2022

Decisions in the time of Covid

On By Andi BrownIn Parkinson's13 Comments
Newly renovated La Samaritaine department store. Should I go?

I am scheduled to begin my visit to my favorite city on lucky September 13. Hint: the home of Victor Hugo; seller of baguettes and cheese to die for; a place that has elevated people-watching to a fine art.

After an absence of – can it really be 20 years- I’m returning to Paris for the fifth time for five glorious days before embarking on an adventure I’d sworn never to take – a cruise. More on that in a minute.

My last visit to Paris was a bat mitzah gift to my daughter and yeah, also a gift to moi. As we schlepped nonstop all over the city as if the Eiffel Tower and Versailles would disappear the next day, I asked repeatedly if she wanted a break. She responded no, she was fine with our, shall I say, “peppy” pace. Months later, I asked again if we’d been a bit too much on the go and she now replied “yeah, kind of.” Our next trip, to Barcelona, was way more chill.

As will be this one because – the joke’s on me – I have no choice. Parkinson’s slows my gait and saps my energy. Old days itinerary: museum followed by walk followed by another museum followed by shopping. No more of that for you, Missy! Pick two! Or maybe even just one.

Parkinson’s also explains the cruise. Hiking vacations may now be supplanted by – Sing it, Tina – Rolling Down the River. (See my post “Adults Only” to obtain the full measure of the disdain I “harbored” for the aquatic form of travel.

But having Parkinson’s has forced me into all sorts of compromises. As has Covid.

Do you go to the movies or do you continue to scroll through Netflix and Prime, ending with the ritual “tossing of the remote,” as you scream “I’ve seen everything already. I NEED TO GO OUT!!!!

Your friend invites you to an actual dinner party with actual interesting strangers. You’re dying to go but your spouse isn’t having it. “But I’ll wear a mask between bites!”you scream. (There’s a lot of screaming around these issues,)

Or… your spouse is begging you on bended knee to allow him to visit friends. CAREFUL friends. Not in a CROWDED SUBWAY but in their OWN HOMES. “It’s an unnecessary risk,” you scream. “My friend Bonnie caught it at a dinner party and she was double- boosted.”

I know some very smart people who wouldn’t dream of going on a trip like this. First of all, there’s the airport to navigate, followed by a long transcontinental flight, then another airport. Note: I intend to be as masked as The Lone Ranger from the moment I enter the Delta Terminal at Logan Airport till I arrive at my hotel in Paris. That trip also includes a segment on the Paris Metro, probably the most fraught thing I’ll do during my entire stay.

I’m buffeted on both sides with advice, including from people I’ve only met on a “Paris Tips” Facebook page, an admittedly skewed group. They’re all GO! GO! And GO!!!!!

One friend was a bit concerned but thought I’d be okay as long as I was careful. Turns out that our definitions of careful were not the same and she was surprised that I had every intention of dining indoors (in one case at a communal table), something I’ve done for months and she hasn’t done for years.

I justify my decision to take this trip, cruise ship and all (river boat with 120 passengers as opposed to city-sized vessel accommodating 5,000) by assuring my friends that I will be as vigilant as I am at home. Which frankly isn’t very. I often forgo the mask in the supermarket. I eat indoors at restaurants. But if I’m in a crowded space- for example, on the bus to the terminal at the airport -I’ll mask up. I may also be influenced by the fact that I’ve had Covid, barely. A couple of coughs and sneezes – so mild that I wouldn’t have noticed them in ordinary times – and I was done.

I suddenly understood my friends’ perspectives about my coming Parisian sojourn. I believe they’ve been assuming my safety procedures would match theirs – more masking, only dining al fresco in restaurants – were I to remain stateside. But in truth, I’m much less vigilant than they.

I recognize that I’ve become a bit of a risk-taker, at least where Covid is concerned. I’m persuaded by those who argue “Covid is likely to be with us for a while, just like the flu. Why not treat it the same way and get on with your life?”

Getting on with life resonates loudly with me, certainly in part due to the fact that I now have a chronic illness. Canceling the trip but continuing with my current level of precaution, I suspect I would be as likely to contract Covid at home as in Paris, where I’ve decided to wear a mask pretty much everywhere.

I’m that friend you dared to jump off the roof in sixth grade, who accepted the challenge. I’m no statistician but I surely take a greater risk here at home than my more cautious and arguably smarter friends when I enjoy a savory morsel of salmon with harissa in a venue that possesses a commercial kitchen.

So…..I’m off to Paris in two weeks with not exactly a devil-may-care attitude but a healthy serving of cautious optimism that I won’t get sick.

I don’t believe there’s a right or wrong answer here. The right thing to do is what’s right for you. To those of you who choose to stay home I say “Enjoy your good health. You’ve earned it.” And to my gambling partners in crime I call “Bon appetit” and “Bon voyage.”

Recommendation:

He’s been called “the funniest man in America” by …me. And technically that’s not true since he lives abroad.

But if you haven’t read David Sedaris, get thee to a bookstore or a library pronto.

I defy you not to laugh at Santaland Diaries.

Start with early Sedaris –Naked, Me Talk Pretty One Day, and work your way forward. Or not.

Have fun!

Singing and Dancing Away My Parkinson’s

On By Andi BrownIn Uncategorized17 Comments

Exercise is not just recommended for people with Parkinson’s – it’s prescribed. If you want to slow the progression of the disease, you must move. A lot. And your motions should be large.

Singing is recommended for people with Parkinson’s who experience diminishing vocal power. 

So, despite the fact that I’m a terrible dancer and a worse singer, I’ve taken up both. I boot up the Sixties station on Pandora and shoot for a half hour daily American Bandstand in my bedroom. Some of you may also remember Hullaballoo and Shindig, two music TV shows of the sixties.

I would be on cloud 9 if Herman’s Hermits walked through the door at this very moment, singing “Mrs. Brown, you’ve got a lovely daughter.” ‘Cause they’d be singing about me, right? At least that’s what I persuaded myself of when I was fourteen.

Now please join me as I make a fool of myself.    Laugh all you want!

Andi singing and dancing away the Parkinson’s

Guest blogger Emma ( the fabulous) Stubbs

On By Andi BrownIn Uncategorized2 Comments

Good morning! And welcome to my summer break #2.

I didn’t want to ditch my readers entirely so I’m sending you something even better than me. And that would be my co-blogger and co-Parkinson’s sufferer Emma Stubbs, a Scottish lass who handles her situation with aplomb and great humor. I encourage you to roam around her site and find lots of funny things. I’m particularly partial to her Parkinson’s alphabet.

Thanks , Emma for giving me permission to post your blog and injecting a little bit of humor into all of our lives.

Here you go!

https://whostolemydopamine.com

To reveal or not to reveal

On By Andi BrownIn Uncategorized4 Comments

I wasn’t sure about this post. “Should I publish it or or not?” I asked a couple of dear and very astute friends who often serve as my brain trust when I’m a little uncertain about something I’ve written.

Which of course leads me to ponder: Why the blog? Its initial purpose was my personal amusement and I’m frankly enjoying myself more than I expected to. But as I wrote, I started hearing from people who told me that they not only enjoyed the writing but they also learned something, felt supported, and became part of a community. I don’t know why this was such a surprise to me but it was. A deeply gratifying one.

So if that’s the case – I am here at least in part to help people – why am I hesitating about revealing something very private, knowing that lots of people might benefit from this story, as people tend to do when their own experiences are shared and validated by others in the same about-to-capsize boat.

You might recall my writing about the proclivity for people with Parkinson’s to act out their dreams. Before my diagnosis, I leapt off my bed believing I was Lebron James aiming for the hoop and landing on the floor. In another occurrence I thought I was Olympian Greg Louganis diving into a pool. More recently, I have no idea what I was dreaming about but I awoke on the floor with my ear bruised and a little bit bloody. I must have banged it on the night table as I again flew onto the floor attempting God knows what.

Fast forward to two days ago. I am on Cape Cod in the town of Wellfleet, sharing a beautiful rental home overlooking a salt marsh for the week with some good friends. I don’t remember much about the dream except that I was sitting on a bed upright and had to urinate. In the dream, yellow liquid pooled around me, rising higher and higher like a swollen river post-deluge. I had a vague recollection of the dream but I fell back to sleep quickly.

You can probably guess what’s coming. I’ll just say I acted out the dream and leave it at that. I stripped the bed immediately and collected my sheets along with the mattress pad and sneaked past my chatting friends into the laundry room. I didn’t feel all that concerned about my accident because I knew it had to do with the Parkinson’s and it wasn’t a sign of incontinence or anything else I might dread. So why didn’t I tell my housemates? They’re all good friends of mine. Did I not want to call attention to myself? Did I feel shame despite the knowledge that this wasn’t my fault or a character failing of any kind? And the big question which I ask myself five times a day lately is, should I blog about this or not? And will I go public with other forms of bodily decline as they arise? Is that my calling now? It might not make me feel better but maybe it will help someone else feel less alone with their pain and disabilities.

I discussed my dilemma with a young colleague who advised “Absolutely publish” and went on to inform me about one acquaintance who regularly wet the bed when inebriated and another who often, when drunk (she swears she wasn’t making this up) peed into the refrigerator. She suggested that perhaps there were seasons of life for the absence of bladder control, though I do hope my episode was a one-off and I haven’t entered the Depends season just yet.

I looked up the word dignity in the dictionary; Definition #1): The state of being worthy of honor or respect. Definition #2): A composed or serious manner or style. Having wet the bed, I don’t think my picture will appear in the dictionary to illustrate Definition #2. However, I am no less worthy of respect (Definition #1) for having done so.

So there you have it, folks. I hope those of you who have lost control (and a bit of dignity) of body or mind due to a medical condition feel okay about the times your body betrayed you. It happens to so many of us. Even me.

Recommendations:

I love word puzzles. Spelling Bee is my favorite, though it drives me kind of crazy, with the letters swirling around in my brain all day long.

Wordle is another fun one. And for you already-Wordle fans out there, here’s a bit of mockery about Wordle. I found it hilarious.